URBAN HEALTH

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URBAN HEALTH
Combating Disparities with Local Data

Steven Whitman
Ami M. Shah
Maureen R. Benjamins

1
2011
1
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Library of Congress Cataloging-in-Publication Data

Whitman, Steven.
Urban health : combating disparities with local data /
Steven Whitman, Ami M. Shah, Maureen Benjamins.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-0-19-973119-0 1. Urban health—Illinois—Chicago.
2. Health surveys—Illinois—Chicago. I. Shah, Ami M.
II. Benjamins, Maureen. III. Title.
[DNLM: 1. Healthcare Disparities—Chicago.
2. Urban Health Services—Chicago. 3. Community Health Services—Chicago.
4. Health Surveys—Chicago. 5. Models, Organizational—Chicago.
WA 380 W615u 2011]
RA566.4.I3W55 2011
362.1′04209773—dc22
2010003248

9 8 7 6 5 4 3 2 1
Printed in the United States of America
on acid-free paper
This book is dedicated to all those who struggle for what should
be theirs by virtue of their humanity: The pursuit of a long,
healthy, and productive life.
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PREFACE

“For a successful technology, reality must take precedence over public

relations, for Nature cannot be fooled.”
—Richard P. Feynman

The near Westside of Chicago is home to a unique health delivery system,

the Sinai Health System. Sinai’s vision is to become the national model for
the delivery of urban health care and our mission addresses our desire to
make a difference in both the lives of individuals and the communities we
serve. This commitment has been the seed of the Sinai Urban Health Institute
(SUHI). SUHI works alongside Mount Sinai Hospital, a 325-bed teaching
hospital with a Level 1 trauma program, 60,000 emergency visits, and 4,000
deliveries; Schwab Rehabilitation Hospital, a regional 90-bed rehabilitation
center; Sinai Children’s Hospital; and the Sinai Community Institute, which
supports 25 ethnically diverse community-oriented programs starting with
pregnant and parenting teens all the way to senior support programs and
includes violence prevention and workforce development to name a few.
Overall, Sinai supports a population base of 750,000 people including some
of the most socio-economically challenged neighborhoods in Illinois. This
makes Sinai Illinois’ largest provider of Medicaid services and the source of
specialty care not otherwise available to this diverse community.
vii
viii PREFACE

The health-care status of a population is set by a variety of determinants.

Repeatedly, it is acknowledged that throughout the world, public health mea-
sures, such as clean water and functioning sanitation systems, have extended
life expectancy more than any other interventions. This is not news, but this
learning has gotten lost in technological advances. Sinai recognizes that a
micro-community (local level) understanding of health status and subse-
quent focused interventions are critical to eliminating health disparities. The
goal of creating a healthier, more productive community is not dependent on
sophisticated clinical interventions but on understanding the community and
its needs.
It is clear that the United States has some of the best clinical services in
the world as demonstrated by the amount of resources put into the health-
care engine. With that investment, we have come to believe that end of life is
optional, especially if we keep spending. We keep trying to fool nature.
This book is about reality. The reality of the community. The reality of
making an investment that leads to understanding the strengths and needs of
a community and creating interventions that are not designed to fool nature
but designed to support her.
Today, we live with a delivery system that requires better understanding
and actions based on the reality of the impact of housing, education, preven-
tion, and discrimination. The current system is invested in technology that,
although impressive and life-saving, is extraordinarily expensive and still
ignores the basic determinants of health.
What the authors describe in clear terms is how understanding the nature
of a community as a starting point can change the health status of a popula-
tion dramatically. This does not remove the opportunity or the need to make
the best use of medical technology, but it does demonstrate that it should be
seen as part of an integrated model for creating healthier communities.
A return to recognizing the public health of a community—“pre-primary
care”—will have an exciting and sustainable impact on a population’s future
health status.
Alan H. Channing
President and CEO
Sinai Health System
ACKNOWLEDGMENTS

All human activity is collective and based upon standing, however imper-
fectly, on the shoulders of those who have come before us. Many, many
organizations and individuals have contributed to the various chapters in this
book, and they are acknowledged as part of each chapter. In addition, we
want to more generally thank those whose vision for improved health made
this book possible.
The Robert Wood Johnson Foundation (RWJF) funded the initial commu-
nity survey. This was proactive and courageous of them because we could
only imagine at the beginning what might come out of such an effort. We
thank Dr. James Knickman, then RWJF Vice President for Evaluation and
Research, for initially understanding the potential of this work and Kimberly
Lochner, our Program Officer, for her vision and guidance. When the survey
was complete, the Chicago Community Trust generously funded the analysis
and dissemination of this work for 3 years. We especially thank our Program
Officer, Ada Mary Gugenheim, for her foresight regarding the survey data
and its ability to improve the health of Chicago communities. In addition, we
owe a special thanks to the leadership of the Michael Reese Health Trust,
whose continued support of the Sinai Urban Health Institute enabled us to
write this book.

ix
x ACKNOWLEDGMENTS

Once the initial survey of six community areas was complete, the Jewish
Federation of Metropolitan Chicago and the Asian Health Coalition of
Illinois took on the responsibilities of obtaining resources and replicating
the survey in four additional communities. We are indebted to them for
taking this initiative and bringing the total to 10 Chicago communities with
health survey data.
Many of our colleagues at the Sinai Urban Health Institute helped shape
the survey, worked with the communities, and provided critical support
throughout the entire process, and we offer our sincerest gratitude to them
for everything. Most notable among them is Jade L. Dell, who not only
authored one of the book chapters but also monitored the administration of
the effort from beginning to end. We also thank the administration of the
Sinai Health System, constantly beleaguered by the financial nature of the
health care non-system in the United States. Despite this, the Sinai Health
System has been heroic in supporting our work. We are grateful to Sinai’s
mission to serve the people of the communities in which we work, regard-
less of their ability to pay, and to Sinai’s commitment to taking its services
beyond the walls of its institution. We especially thank Benn Greenspan,
who was CEO when this endeavor started, and Alan Channing our current
CEO, who has bent over backward in multiple ways to help make this entire
project a reality.
Finally, we would like to thank Oxford University Press editor William
J. Lamsback, who supported this book from the beginning, and editor Regan
Hoffman, who gave us the support and guidance necessary to bring it to
fruition.
CONTENTS

Contributors xiii

Section 1 Setting the Stage

1 Introducing the Sinai Model for Reducing Health Disparities
and Improving Health 3
Steven Whitman, Ami M. Shah, and Maureen R. Benjamins
2 A History of the Movement to Address Health Disparities 8
Jade L. Dell and Steven Whitman

Section 2 The Importance of Local Data

Ami M. Shah, Steven Whitman, and Maureen R. Benjamins
3 Sinai’s Improving Community Health Survey: Methodology
and Key Findings 37
Ami M. Shah and Steven Whitman
4 The Jewish Community Health Survey of Chicago: Methodology
and Key Findings 69
Maureen R. Benjamins

xi
xii CONTENTS

5 The Chicago Asian Community Surveys: Methodology

and Key Findings 98
Matthew J. Magee, Lucy Guo, Ami M. Shah, and Hong Liu
6 Comparing the Health Status of Ten Chicago Communities 125
Ami M. Shah

Section 3 Translating Data into Community Action

Steven Whitman, Ami M. Shah, and Maureen R. Benjamins
7 Working Together to Live Tobacco-Free: Community-Based
Smoking Cessation in North Lawndale 151
Joseph F. West and Charlene J. Gamboa
8 Combating Childhood Obesity through a Neighborhood Coalition:
Community Organizing for Obesity Prevention in Humboldt Park 171
Adam B. Becker, Katherine Kaufer Christoffel,
Miguel Angel Morales, José Luis Rodríguez, José E. López,
and Matt Longjohn
9 Fighting Childhood Obesity in a Jewish Community 197
Maureen R. Benjamins
10 Disproportionate Impact of Diabetes in a Puerto Rican
Community of Chicago 225
Steven Whitman, José E. López, Steven K. Rothschild,
and Jaime Delgado
11 Pediatric Asthma in Black and Latino Chicago
Communities: Local Level Data Drives Response 247
Helen Margellos-Anast and Melissa A. Gutierrez
12 Humboldt Park: A Community United to Challenge Asthma 285
Molly Martin and Juana Ballesteros

Section 4 Implications
13 Community-Based Health Interventions: Past,
Present, and Future 309
Leah H. Ansell
14 The Future Holds Promise 355
Steven Whitman, Ami M. Shah, and Maureen R. Benjamins

Index 371
CONTRIBUTORS

Leah H. Ansell, BA Alan H. Channing, MHA, FACHE

Medical Student President and CEO
Feinberg School of Medicine Sinai Health System
Northwestern University Chicago, IL
Chicago, IL
Katherine Kaufer Christoffel,
Maureen R. Benjamins, PhD MD, MPH
Senior Epidemiologist Professor of Pediatrics and Preventive
Sinai Urban Health Institute Medicine
Sinai Health System Feinberg School of Medicine
Chicago, IL Northwestern University Medical School
Adam B. Becker, PhD, MPH Jaime Delgado, BA
Executive Director Project Director
Consortium to Lower Obesity in Chicago BLOCK-BY-BLOCK
Children (CLOCC) The Greater Humboldt Park Community
Children’s Memorial Hospital Campaign against Diabetes
Chicago, IL
Jade L. Dell, MRE
Juana Ballesteros, BSN, RN, MPH Coordinator of Research Programs
Executive Director Sinai Urban Health Institute
Greater Humboldt Park Community of Sinai Health System
Wellness Chicago, IL

xiii
xiv CONTRIBUTORS

Charlene J. Gamboa, MPH Matthew J. Magee, MPH

Project Coordinator Department of Epidemiology
Sinai Urban Health Institute Rollins School of Public Health
Chicago, IL Emory University
Atlanta, GA
Lucy Guo, MPH
Epidemiologist Miguel Angel Morales, BA
John H. Stroger, Jr. Hospital West Town Community Networker
Cook County Consortium to Lower Obesity in Chicago
Children (CLOCC)
Melissa A. Gutierrez, MS
Chair
Epidemiologist
Active Lifestyles Task Force of the
Sinai Urban Health Institute
Greater Humboldt Park Community of
Chicago, IL
Wellness
Hong Liu, PhD
José Luis Rodríguez, BA
Former Executive Director
Program Director
Asian Health Coalition of Illinois
Community Organizing for Obesity
Chicago, IL
Prevention in Humboldt Park
Matt Longjohn, MD, MPH
Steven K. Rothschild, MD
Assistant Adjunct Professor
Vice Chair of the Department of
Department of Pediatrics
Preventive Medicine
Feinberg School of Medicine
Director of the Section of Community
Northwestern University
and Social Medicine
Institute Fellow
Rush University Medical Center
Altarum Institute
Chicago, IL
José E. López, Executive Director
Ami M. Shah, MPH
Juan Antonio Corretjer Puerto Rican
Senior Epidemiologist
Cultural Center
Sinai Urban Health Institute
Instructor
Sinai Health System
Columbia College, University of Illinois
Chicago, IL
and Northeastern Illinois University
Joseph F. West, ScD
Helen Margellos-Anast, MPH
Program Director and Senior
Program Director and Senior
Epidemiologist
Epidemiologist
Sinai Urban Health Institute
Sinai Urban Health Institute
Sinai Health System
Sinai Health System
Chicago, IL
Chicago, IL
Steven Whitman, PhD
Molly Martin, MD, MAPP
Founder and Director
Assistant Professor
Sinai Urban Health Institute
Department of Preventive Medicine and
Sinai Health System
Pediatrics
Chicago, IL
Section of Community and Social
Medicine
Rush University Medical Center
Chicago, IL
Section 1

Setting the Stage

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1
INTRODUCING THE SINAI MODEL FOR
REDUCING HEALTH DISPARITIES AND
IMPROVING HEALTH

Steven Whitman, Ami M. Shah, and

Maureen R. Benjamins

Much effort has been put forth to document health disparities at the national,
state, and city levels. Despite this, disparities remain widespread and per-
sistent. This book tells the story of how one research center in Chicago is
attempting to improve on this inexcusable situation by collecting local data
as a catalyst to developing and implementing effective, targeted interven-
tions. The methods and experiences described in this book provide a useful
model for how to systematically pursue health improvements in vulnerable
communities and simultaneously achieve greater health equity. This book
describes the data collection process and presents case studies of how the
data were translated into action, information that is relevant for all urban
communities throughout the United States.
The story begins in 2001. Members of the Sinai Urban Health Institute
(SUHI), a research center based at Mount Sinai Hospital in Chicago, artic-
ulated a vision of how to begin reducing health disparities in Chicago by
improving the health of individuals living in the poor communities of color
served by the hospital. Specifically, it was believed that if survey data could
be obtained to describe the health of people living in these communities,
then effective interventions could be developed, and these interventions
would eventually help to reduce health disparities in the city. In this con-
text, the Director of SUHI (Steven Whitman) wrote a letter to The Robert
3
4 SETTING THE STAGE

Wood Johnson Foundation in 2001. This resulted in an extended dialogue

that eventually led to SUHI receiving a generous grant to implement such a
survey. The process of implementing this survey and translating the findings
into interventions is the focus of this book. In broad outline, the steps that
were taken (and that are described in detail in the subsequent chapters) were
as follows:

• The original survey was conducted in six of Chicago’s officially desig-

nated 77 community areas. The six communities were selected to reflect
the racial, ethnic, and socio-economic diversity of Chicago (the third
largest city in the United States). They were also chosen based on their
level of community organization and interest in such health data. The
survey was substantial and would evolve into one of the largest door-to-
door health surveys ever conducted in Chicago (Chapter 3).
• To construct the survey and select relevant topics and questions, a com-
mittee comprised of community residents and activists was assembled.
This was not merely an “advisory committee.” Rather it had full veto
power over each and every question. The committee met frequently for
many hours at a time. Its work is a vivification of much that is of value,
and that is possible, when researchers truly work collaboratively with
communities and the power often assumed by university and/or medical
system affiliation is eliminated (Chapter 3).
• Even before data collection started, SUHI members made many pre-
sentations to introduce the survey and its potential to the communities
in which the survey would be conducted. The nature of the survey was
explained, as was the need for this type of local data and the importance
of community participation throughout the process. At virtually every
presentation, people would ask some variant of the following question:
“Researchers like you come through here from time to time, ask us a
bunch of questions, and then go away and we never hear from them
again. What makes you different?” This prompted the investigators to
reaffirm their goal that whatever was found, a touchstone of the work
would be to report the findings back to the community, to help empower
and mobilize them with data, and to help them improve the health of
their communities. Although moving beyond documentation to action is
still rather unique, authors of this book believe it to be a morally essen-
tial next step.
• After surveying the first six communities, which consisted of Black,
White, Mexican, and Puerto Rican people, researchers made many
presentations describing the findings. Following this, other organiza-
tions became interested in obtaining such data for their own communi-
ties. First, a representative from the Jewish Federation of Metropolitan
 Sinai Model for Reducing Health Disparities and Improving Health 5

Chicago asked if the survey could be implemented in a Jewish commu-

nity. He was told that the survey certainly could be replicated in other
communities, if they could help to find funding for the data collection
and assemble a community advisory team. Thus, a Jewish community
became the seventh surveyed community (Chapter 4). Other commu-
nities followed suit. To date, this includes communities that are pre-
dominantly Chinese, Vietnamese, and Cambodian (Chapter 5). The data
from these 10 communities present extraordinary insight into the unique
problems faced by individuals living in each of these areas, as well as
a greater understanding of how widely health can vary across different
populations within the same city, even those within walking distance of
each other (Chapter 6).
• Consistent with these events, SUHI’s relationships with community-
based organizations in the city intensified. There are many names
and models for how to best achieve the difficult yet worthwhile goal
of conducting research in partnership with community members and
organizations, including community-based participatory research,
translational research, and community engagement, to cite but a few.
Although all of the existing models had some things in common with
the community work described in this book, none seemed to satisfac-
torily define what was being done in the wake of the Sinai surveys.
This led to an even greater effort to conceptualize this aspect of the
work (Chapters 13 and 14).
• Based on the survey findings, engagement with communities, and the
dissemination of results to lay and professional audiences, the study
began to attract a great deal of attention. Literally hundreds of stories
appeared in the mainstream press and on radio and television. As of
this writing, SUHI members have made over 150 presentations describ-
ing survey-related findings. Audiences have included community-based
organizations, medical centers, foundations, professional societies, and
other groups.
• This dissemination provided a stimulus for funding interventions to
improve health in the selected communities (Chapters 7–12). Such fund-
ing came from local foundations, the Illinois Department of Public
Health, and several branches of the federal government including the
National Institutes of Health (NIH) and the Centers for Disease Control
and Prevention (CDC).
• Interventions were designed and implemented in cooperation with com-
munity organizations and individuals. A special effort was put forth to
ensure that each intervention was carefully evaluated and that the results
of these evaluations, both favorable and unfavorable, were transparently
reported (Chapters 7–12).
6 SETTING THE STAGE

• In addition, other agencies throughout the city, even those with whom
SUHI had no contact, began to use the survey data to obtain grants
and to guide their own work within vulnerable communities in Chicago.
Several local foundations reported that many proposals submitted to
them cited the SUHI survey data as the motivation for the proposed
work.
• Finally, the desire to help eliminate racial and ethnic disparities in health
intensified as the process continued. This ultimate goal of the data col-
lection effort is being addressed as interventions continue to be imple-
mented in underserved communities and communities of color. If these
interventions are effective, they are not only improving the health of the
individuals in those communities, they are also reducing disparities.

All of these events and lessons led to the development of the “Sinai Model
for Reducing Health Disparities and Improving Health” (Box 1-1). As this
model was discussed at various forums, people were excited by its potential
to accomplish what its name implies and interested in its ability to be rep-
licated in other cities. Although numerous community reports and articles
describing this work have been published in peer-reviewed journals, none
of these outlets afforded the space to detail the evolution of this model. The
desire to tell this full story has led to the volume you are holding in your
hands.
This book has been crafted in an effort to tell an interesting and coher-
ent story, which it is hoped will be useful for public health practitioners,
policymakers, students and professors at schools of public health, doctors,
nurses, social workers, and others in related fields. It is especially antici-
pated that this book will be of use to communities wishing to improve their
own health. With data that are most relevant to their communities, groups
of individuals may use the information to set priorities, advocate for greater
resources, and take meaningful action for change. It is also hoped that the
book will be helpful to the professionals who work alongside these commu-
nities to achieve this common goal.
The purpose of this book is to describe the progress made along the path
defined by the interactions of residents of Chicago with the survey. Along
the way, of course, there have been successes and challenges. Because much
can be learned from both of these, an effort is made to describe all aspects
of the project in detail. It is hoped that this book will explain the motiva-
tion for gathering local data, the steps that were taken along the way, the
extent to which such work has been effective here in Chicago, and, most
importantly, how others might proceed to do similar work in their own
communities.
 Sinai Model for Reducing Health Disparities and Improving Health 7

BOX 1-1 Sinai Model for Reducing Health Disparities and Improving
Health

• Implement a sound community survey in selected vulnerable

communities.
• Meaningfully analyze the results and interpret them within the context
of what is known about corresponding national and state-wide find-
ings; locate community-level differences and describe their relevance.
• Disseminate the findings and analyses widely to communities, academic
forums, peer-reviewed journals, and media.
• Partner with community organizations, empower them with informa-
tion, and help organize and mobilize communities to prioritize key
health concerns.
• Locate and/or develop potentially effective interventions to address the
health issues.
• Work with community-based organizations to obtain funding for these
interventions and bring greater resources to the community.
• Effectively implement community-driven interventions to improve
health outcomes.
• Carefully, fully, and transparently evaluate the interventions to ensure
success and replicate best practices.

Acknowledgments

We would like to thank those who authored the chapters, the people who
designed the survey, the communities who welcomed us (and even those who
criticized us), and the valiant people who have struggled for many years to
improve their health, thus inspiring us to want to help them do that. We
would also like to thank our colleagues at the Sinai Urban Health Institute
for helping us conduct the survey, analyze the data, interpret the results, and
plan, implement, and evaluate the interventions. None of this could have
happened without each and every one of them.
We especially would like to thank Alan Channing, the CEO of Sinai
Health System, for supporting our work, even while medical centers with
far more resources are ignoring the issues raised by the research described
throughout the book. Finally, we would like to thank Oxford University
Press editors William J. Lamsback, who immediately understood our vision
for this book, and Regan Hoffman, who gave us the support and guidance
necessary to bring it to fruition.
2
A HISTORY OF THE MOVEMENT TO
ADDRESS HEALTH DISPARITIES

Jade L. Dell and Steven Whitman

Introduction

Social epidemiologist Paula Braveman defined health disparities as “group

differences in health that are unnecessary, preventable, and unjust”
(Braveman, 2006). It is this constellation of attributes that moved the editors
of this book to desire to help improve the health of people in general and
people of color and low income people in particular. If this is accomplished,
the health of the country as a whole will also be improved. This pursuit cur-
rently goes under the rubric of “reducing health disparities,” a topic that will
be discussed in much greater detail in the pages that follow.

Health Disparities: A Look Back and Overview

In the Time of Slavery

Going back to the 1840s, there was an expressed awareness that the health
of Black persons in the United States was worse than the health of White
persons. In the census of 1860, it was even predicted that because of the
extremely low Black birth rate and the high rates of infant and maternal mor-
tality, by the year 2000 Black people might be extinct (Byrd and Clayton,
2000; Washington, 2006).

8
 History of the Movement to Address Health Disparities 9

During Reconstruction
Immediately after the Civil War, the Freedmen’s Bureau, in the face of
high Black mortality (Byrd and Clayton, 2000; Washington, 2006)1 began
to establish Black medical schools in the South (such as Meharry Medical
College founded in 1876) and hospitals (such as Howard University
Hospital chartered in 1867).2 These institutions were important but faced
heavy odds as Reconstruction era advances toward equal advantages and
opportunities were lost in the reactionary White backlash of fear and
racism.
Health disparities between Blacks and Whites were thus not addressed as
the nation moved away from the institution of slavery but kept Black people
segregated and bereft of most health-care infrastructure. Medical care for
former slaves was still practiced by local Black healers, but White doctors
who formerly treated slaves at the behest of their masters no longer did so.
“Separate but equal” was legalized in the Plessy versus Ferguson3 decision
by the Supreme Court in 1896, and what followed was a codification of a
separate social structure through Jim Crow laws. Separate drinking foun-
tains, separate entrances, separate schools, separate hospitals—the list was
long and in reality society was “separate and unequal”—including in the
health arena.

Hoffman versus DuBois

The reasons for Black–White health disparities were argued from many
points of view. In 1896, Frederick L. Hoffman, a Prudential Life Insurance
statistician, suggested that “the American Negro” was racially inferior and
thus more susceptible to disease (Hoffman, 1896). His analysis, based on
vital and social statistics and population factors, concluded that the abolition
of the institution of slavery did not improve the lives of African Americans.
Hoffman’s view lingers today in studies that predominately locate Black risk
for ill health in genetics and behavior instead of acknowledging the role of
social structural factors such as racism, dilapidated housing, inferior educa-
tion, or lack of employment opportunities.
Opposing the “blame-the-victim” ideology, Atlanta University sponsored
the “Eleventh Conference for the Study of Negro Problems” and adopted a
resolution to form local Health Leagues instituted to provide health education
to Black people. Further study of the problem was strongly suggested. At this
1906 Conference, W.E.B. DuBois, Harvard-educated intellect, sociologist,
and civil rights activist, released a ground-breaking treatise entitled, “The
Health and Physique of the Negro American” (DuBois, 1906). Using cen-
sus data, U.S. Surgeon General Reports, vital statistics, insurance company
10 SETTING THE STAGE

records, reports from Black hospitals and drug stores, reports from medical
schools, letters from physicians, voluminous references, and the measure-
ment of 1,000 students, DuBois and his colleagues concluded that disparities
in health between Black and White people were “not a racial disease but a
social disease” (DuBois, 1906, p. 89). The book was called a sociological
study (although it might now be called an epidemiological study) of the well-
being of the Negro American whose poor health was judged a direct result
of racism and poverty.

The National Medical Association versus the American

Medical Association
There were many other attempts to address the health-care needs of
Black people in the United States. The National Medical Association
(NMA) was established in Atlanta, Georgia, in 1895 to afford a place
for Black physicians to gather for support, education, and conferencing.
The NMA established clinics and hospitals as well as medical schools for
Black people to become doctors, nurses, and dentists (Byrd and Clayton,
2000). This was a crucial move because Black doctors and other health
professionals were historically excluded from the American Medical
Association (AMA) and other professional societies. Until the late 1960s,
the AMA rejected the membership of Black professionals using the
excuse that “membership matters are controlled by constituent societies”
(AMA, 2009, p. 4). This decision, reminiscent of the “states rights” argu-
ment around slavery, was voted on and affirmed by the AMA House of
Delegates every time it was challenged: in 1939, 1944, 1948, 1950, 1951,
1963, and finally in 1965.

Negro Health Week

Around 1915, the National Negro Business League of Virginia established
a Negro Health Week using churches and schools to mobilize people for
neighborhood clean-up and education about health and hygiene (Gamble
and Stone, 2006). Booker T. Washington, who was then the President of the
National Negro Business League, adopted the Virginia program idea and
suggested it to other local leagues (Gamble and Stone, 2006). In the follow-
ing two decades, 32 states participated in this endeavor with 2,200 com-
munities involved in 1935 at the height of the movement. Following this
success, the U.S. Public Health Service took over organizing National Negro
Health Week under the Office of Negro Health Work and provided adminis-
tration and funding for educational materials and a journal, National Negro
Health News (Gamble and Stone, 2006). Communal activism seemed to have
played a part in affecting these improvements.
 History of the Movement to Address Health Disparities 11

The Desegregation of Health Care

The Hill-Burton Act

During all of this activity, Black doctors and patients were not welcome
in White hospitals. In 1946 Congress passed a law, the “Hospital Survey
and Construction Act”—commonly known as the Hill-Burton Act. This law
prohibited discrimination on the basis of race, creed, or color in hospital
facilities constructed with federal monies. This was a move in the direction
of health-care equity. Yet, surreptitiously embedded in the law was an excep-
tion carefully worded by Alabama Senator Lister Hill encoding a provision
that would maintain the “separate but equal” status quo: “… an exception
shall be made in cases where separate hospital facilities are provided for sep-
arate population groups, if the plan makes equitable provision on the basis of
need for facilities and services of like quality for each such group …” (Smith,
1999, p. 47). The Hill-Burton Act was the law of the land, but provisions like
this inhibited its full impact until the 1960s.

Brown versus Topeka Board of Education and

Simkins versus Cone
Societal movement toward racial integration was beginning to take hold
in the 1950s, and separate programs for Black people were shut down along
with the Office of Negro Health Work (Gamble and Stone, 2006). Activists,
both Black and White, argued that separate facilities almost always meant that
Black facilities—whether they were schools, hospitals, or something else—
were inferior to White facilities. The landmark Supreme Court ruling of 1954,
Brown v. Topeka Board of Education, made segregation in public schools ille-
gal. Health activists, encouraged by this victory, began working to end the
segregation of medical facilities. In 1963, the Simkins v. Moses H. Cone
Memorial Hospital case was settled against two North Carolina hospitals that
had taken $1,269,950 in federal money for building programs while refusing
to accept Black patients (JNMA, 1963; Smith, 1999). This case is sometimes
called “The Brown case for hospitals” (Reynolds, 1997b). After Simkins v.
Cone, any hospital applying for federal money had to guarantee open admis-
sion to all races, had to allow all qualified physicians to have staff privileges,
and could not segregate patients by race (Terry, 1965; Reynolds, 1997b).

The Civil Rights Act, 1964, and the Revision of

Hill-Burton, 1964
The Civil Rights Act was passed on July 2, 1964 after the longest debate in
the Senate’s history, lasting more than 534 hours (Smith, 1999). It stipulated
12 SETTING THE STAGE

that any program that received federal assistance could not practice racial
segregation or it would lose its funding. The repercussions of this Act reached
far and wide. For example, the Hill-Burton Act was revised on August 18,
1964 (Smith, 1999) to eliminate the “separate-but-equal” clause (discussed
on the previous page). President Lyndon Baines Johnson signed it.

Moving in the Right Direction on the Back of Federal Policies

The Great Society and National Programs

On July 30, 1965, as part of what has been called the “Great Society
Movement,” President Johnson pushed and Congress finally approved the
establishment of two new national programs, Medicare (to provide health
care for those aged 65 and over) and Medicaid (for those unable to afford
health care at any age). Part of the stipulation in these new programs was
that no federal funds would be awarded to any entity that did not allow all
citizens to participate. This was another incentive in the difficult process to
desegregate U.S. health-care systems. Hospitals, medical schools, and clinics
that had previously refused entry to Black persons now had to admit them
or face the possibility that federal funding would be withdrawn (Reynolds,
1997a; Eichner and Vladeck, 2005). In addition, Black physicians were
slowly and reluctantly admitted to practice at formerly all White hospitals.
As noted in “Achieving Health Equity: an Incremental Journey,” “… it took
the passage of the Medicare/Medicaid Act in 1965, along with the social
justice victories of the civil rights movement, before Americans from racial
and ethnic minority populations, most notably African Americans, were free
to enter the nation’s medical care institutions” (Ibrahim, Thomas and Fine,
2003, p. 2).
According to the National Medical Association (NMA), many Black
people were able to access health care for the first time in the years after
1965, and some Black doctors were even invited to serve on hospital staffs.
Dr. Rodney G. Hood of the NMA notes that as a result, “African American
health improved dramatically in virtually every measurable health status,
utilization, and outcome parameter for ten years” (Hood, 2001, p. 2). It is
reported that 1,000 hospitals desegregated their staffs and facilities in a
4-month period in 1965 (Eichner and Vladeck, 2005). The federal govern-
ment was firm in its requirement that health-care facilities be compliant
with this new federal law.
Sadly, by 1980 a puzzling deterioration in the health outcomes for Black
Americans was observed (Hood, 2001). In 1999 the CDC reviewed health
data from 1980 to 1997 and concluded that “the slave health deficit has never
been corrected” (Hood, 2001, p. 584). It seemed that merely desegregating
 History of the Movement to Address Health Disparities 13

health-care facilities did not result in a correction of the underlying racism

in the health-care structure. As Eichner and Vladeck noted: “… Medicare
and its providers are part of the U.S. health care system, not a distinct health
system unto themselves. So to the extent that biases pervade the system,
they affect minority Medicare beneficiaries as well” (Eichner and Vladeck,
2005, p. 2).

NMA/NAACP versus USDHEW

In addition, it is well-documented that opposition to the Medicare Act
was essentially opposition to the desegregation of health services related
to “race-loaded implications” (Boychuk, 2005). These implications can be
traced to the intimacy in the hospital setting where persons of different races
might be lying next to each other in adjacent beds, White people might get
treated by a Black physician, or the supply of blood products might be mixed
up without regard to who receives whose blood. There were also many
strong words exchanged between the NMA and the National Association
for the Advancement of Colored People (NAACP) on one side and the U.S.
Department of Health, Education and Welfare (USDHEW) on the other
side. The Black organizations charged that the USDHEW did not make clear
enough the mandate that only desegregated hospitals would receive Medicare
funds (New York Times, 1965).
It seems that the attempt of “The Great Society” to address segregated
health services was just a beginning. More efforts would be required.

The Next Steps: Establishing the Foundation for

the Healthy People Goals

Public Health Service Reports

Progressive forces such as Medicare, Medicaid, the NMA, and the NAACP
had as their intent improving the health and well-being of all citizens with
an emphasis on minority citizens. Despite their desire and efforts to level
the health playing field, racism and disparities persisted (Smith, 1999).
It thus became important to track improvements and failures. For a fi rst
step, the Public Health Service Act Section 308 called for an annual report
to the President and to the Congress on the health status of the nation.
These reports were dispensed through the 1970s. In January 1977, with
the appointment of Joseph A. Califano, Jr. to the position of Secretary
of the USDHEW by newly elected President Jimmy Carter, there was a
dramatic change in the force and essence of these routine health status
reports.
14 SETTING THE STAGE

TABLE 2-1 Programs of “The Great Society” Selected to Show Improvements

in Health for All
Poverty
War on Poverty Programs (40 Programs)
The Food Stamp Act of 1964
Education
Bills to provide classroom equipment and minority scholarships (60 Bills)
The Vocational Education Act of 1963
Children’s Health and Welfare
Head Start, a program for preschoolers from low-income families
The Child Nutrition Act of 1966
The Child Protection Act of 1966
The National School Lunch Act of 1968
Racism
The Civil Rights Act of 1964
The Voting Rights Act of 1965
Amendment to the Immigration and Nationality Act, 1965
Aging and the Elderly
The Older Americans Act of 1965
Social Security Amendments of 1965
Establishment of Medicare, 1965

Source : http://www.colorado.edu/AmStudies/lewis/2010/gresoc.htm

Joseph A. Califano’s Contribution

Joseph Califano (a lawyer by trade) had, as Special Presidential Assistant,
helped to create the Great Society programs of the 1960s during the pres-
idency of Lyndon B. Johnson. As Califano notes in his book, Governing
America: An Insider’s Report from the White House and the Cabinet, “My
years with Lyndon Johnson greatly influenced my work at HEW” (Califano,
1981, p. 11). In his words, “… what put HEW at the cutting edge of social
policy were the Great Society programs of the Johnson years,” including, as
already noted, the establishment of Medicare, which desegregated hospitals
and clinics (Califano, 1981, p 24). The Great Society programs encompassed
some of the most radical initiatives and addressed many pressing domes-
tic issues related to child welfare, poverty, civil rights, and elder issues.
Examples of some of these initiatives are provided in Table 2-1.4

Reorganization of USDHEW
On March 8, 1977, just months after his appointment by President Carter,
Califano reorganized USDHEW into five operating divisions, one of which
created a brand new “Office for Disease Prevention and Health Promotion”
(Califano, 1981). He personally recruited staff, began to measure perfor-
mance, and started assessing delivery of services. Califano was eager to
 History of the Movement to Address Health Disparities 15

demonstrate that “… the programs of the New Deal and Great Society and
the enormous social commitment of the American people could be executed
efficiently, as well as compassionately” (Califano, 1981, p. 48).

National Health Insurance

Another of Califano’s passions was the establishment of National Health
Insurance (NHI), and in April 1977 he set up the Advisory Committee on
National Health Insurance Issues. Califano designed four prototype plans
and worked diligently to bring all sides on board. This initiative was beset
with disagreements and heated internal arguments between Massachusetts
Senator Edward Kennedy (a strong proponent of NHI) and President Carter.
In the end, Carter decided that because of pressing budget issues, high infla-
tion, disagreements on implementation, and the conflicting demands of labor
unions, the AMA, hospital associations, physicians, and other special interest
groups, it was not possible to pass legislation on NHI during his presidency.

Major Initiatives
During Califano’s 2.5 years as head of USDHEW, his major initiatives
included: childhood immunizations; monetary aid to elementary, secondary,
and higher education; equal opportunity for women athletes in collegiate
sports; civil rights for minorities (particularly for women, non-White racial/
ethnic groups, and persons with handicapping conditions); improving access
to health care; an alcoholism program; and a national anti-smoking cam-
paign. In fact, it is well-known that it was his anti-tobacco stance that essen-
tially led to his being fired.5 He often called smoking “slow motion suicide”
and “Public Health Enemy Number One” (Califano, 1981, p. 185). For that he
was strongly opposed by southern tobacco growers and those legislators and
lobbyists who represented them (Southern Oral History Program Collection,
1991). It was also relevant that President Carter hailed from Georgia, a major
tobacco growing state.

Healthy People—a Call for Public Health Goals

It was suggested that USDHEW set up “health initiatives” with targets or
goals (Califano, 1981). This alternative to merely reporting health statistics is
what Califano would pursue as he served the remainder of his tenure, which
ended in July 1979 when he was fired by the Carter Administration.
In the meantime, Califano issued and wrote the foreword to a publication
entitled Healthy People: The Surgeon General’s Report on Health Promotion
and Disease Prevention, which for the first time set health goals for the peo-
ple of the United States. In the foreword to that publication, Califano noted
a need for dramatic change and called for “a second public health revolution
in the history of the United States” (USDHEW, 1979, p. vii).
16 SETTING THE STAGE

Secretary Califano noted that the first public health revolution in the
United States, spanning the late 19th century, involved battling a host of
infectious diseases such as influenza, pneumonia, diphtheria, tuberculosis,
and gastrointestinal infection through improving sanitation and instituting
the use of vaccines. His view of a health revolution for the late 20th century
was based on the principle of disease prevention rather than treatment of
already acquired disease. Califano wrote, “We are killing ourselves by our
own careless habits. We are killing ourselves by carelessly polluting the envi-
ronment. We are killing ourselves by permitting harmful social conditions
to persist—conditions like poverty, hunger and ignorance—which destroy
health, especially for infants and children” (USDHEW, 1979, p. viii). He
expressed concern that citizens of the United States would need to mobilize
both their personal discipline and their political will to address the health
problems confronting the nation.
This precursor to the Healthy People reports was the impetus for the devel-
opment of a national program of setting goals and objectives for improving
the health of the people by stressing an “ounce of prevention” rather than a
“pound of cure.” Responding to the challenge put forth by the report, indi-
viduals in the USDHEW strategized to set goals for public health, especially
for the 21st century, which was fast approaching.

Promoting Health/Preventing Disease: Objectives for

the Nation, 1980

USDHEW becomes USDHHS

When Califano abruptly left his government office in August 1979,
USDHEW was soon subsumed into a cabinet-level entity called the
Department of Education; “Health and Welfare” was renamed the U.S.
Department of Health and Human Services (USDHHS).6 USDHHS assumed
leadership and gathered together professionals, citizens, private organiza-
tions, and public agencies from all over the country to establish a set of
health promotion and disease prevention objectives.

Promoting Health/Preventing Disease

These objectives became the first “Healthy People” document and were
published in 1980 as Promoting Health/Preventing Disease: Objectives for
the Nation (USDHHS, 1980). That volume was followed by annual reports
on the health status of the people of the United States. Each year, goals for
additional measures were added and old goals were refined. These reports,
entitled Health, United States, featured data from hundreds of sources,
 History of the Movement to Address Health Disparities 17

including the National Center for Health Statistics (NCHS), the Health
Resources and Services Administration (HRSA), the National Institutes of
Health (NIH), and the Public Health Foundation (National Center for Health
Statistics, 1993).

The Health Status of Minority People—Front and Center

The Malone-Heckler Report

In 1983, Margaret M. Heckler, a Republican appointed by President Ronald

Reagan, became USDHHS Secretary. Heckler continued the practice of
publishing the Health, United States reports. After releasing the 1983 edi-
tion, she noted that “… there was a continuing disparity in the burden of
death and illness experienced by Blacks and other minority Americans as
compared with our nation’s population as a whole” (USDHHS, 1985, p. 9;
Gamble and Stone, 2006, p. 9). In January of 1984, Heckler established a
Task Force, and less than 2 years later under her watch, USDHHS produced
a ground-breaking 10-volume report, “Black & Minority Health. Report
of the Secretary’s Task Force,” often called the “Malone-Heckler Report”
(Byrd and Clayton, 2000). In February of 1986, Morbidity and Mortality
Weekly Report characterized Heckler’s initiative as a “… response to the
national paradox of steady improvement in overall health, with substantial
inequities in the health of U.S. minorities” (CDC, 1986, p. 109).
In the introduction to that document, the Chair of the Task Force,
Dr. Thomas E. Malone, wrote:

“This report should serve not only as a standard resource for department wide
strategy, but as the generating force for an accelerated national assault on the per-
sistent health disparities which led you [Heckler] to establish the Task Force a little
more than a year ago.” (USDHHS, 1985, p. 7)

Expanding Data by Race/Ethnicity

Uniquely, this report provided data on the health of Asian and Pacific
Islanders, Native American and Alaskan Natives, and Hispanic people in
addition to Black and White people (Nickens, 1996). The Secretary’s Task
Force spent a year reviewing data sources and analyzing the morbidity and
mortality rates of more than 40 diseases.

Calculating Excess Deaths

To define disparities in mortality among minority persons, the Task
Force employed the statistical technique of calculating “excess deaths,”
18 SETTING THE STAGE

which estimates how many deaths would not have occurred if a minority
person had experienced the same mortality rate as a non-minority per-
son (Gamble and Stone, 2006). Black Americans were reported to suf-
fer an excess of 60,000 deaths per year (USDHHS, 1985; CDC, 1986;
Gamble and Stone, 2006). This estimate, by the way, was recently updated
to 84,000 by Satcher and his colleagues using 2002 data (Satcher et al.,
2005).
Using health status indicators (HSIs) such as years of life lost, life expec-
tancy, prevalence rates of chronic diseases, hospital admissions, physician
visits, and relative risk, researchers identified six causes of death—heart
disease/stroke, homicide/accidents, cancer, infant mortality, cirrhosis of the
liver, and diabetes—which were responsible for over 80% of the excess mor-
tality experienced by minority persons (CDC, 1986).
The process from inception to publication of the Malone-Heckler Report
took just over 17 months. The MMWR stated that the report “represents a
significant step in the process of establishing a consensus on the major health
problems affecting minority Americans” (CDC, 1986, p. 111).

The Office of Minority Health, 1986

As a direct response to these publications, in 1986 USDHHS set up the
Office of Minority Health, the first such federal office since the Office of
Negro Health Work, which was closed in 1951. In addition, subcommittees
were established to study nonhealth factors that might contribute to health
disparities, to propose interventions, and to carry out the eight recommen-
dations that the Office of Minority Health developed as listed in Table 2-2
(CDC, 1986).

Mixed Response to the Malone-Heckler Report

The response of the NMA and others to the Malone-Heckler report was
mixed (Jones, 1985; Gamble and Stone, 2006). Although the report moved
the discussion of disparities to a new level, the recommendations empha-
sized the importance of health education, research, and encouraging lifestyle
changes for people with poor health. Critics noted that the report blamed
the victim’s lack of knowledge about health, instead of questioning whether
the nation really had the will to address the systemic issues that limit health
equity, such as unequal access, limited economic opportunity, racial dis-
crimination, and cultural incompetency. Research on the topic of dispari-
ties has continued apace, but actually moving beyond research to action has
mostly idled (Gamble and Stone, 2006).
 History of the Movement to Address Health Disparities 19

TABLE 2-2 Eight Recommendations of the Task Force of the Office of

Minority Health Designed to Carry Out the Mandates of the Malone-Heckler
Report (CDC, 1986)
1. Implement an outreach campaign, specifically designed for minority populations,
to disseminate targeted health information, educational materials, and program
strategies.
2. Increase patient education by developing materials and programs responsive
to minority needs and by improving provider awareness of minority cultural
and language needs.
3. Improve the access, delivery, and financing of health services to minority
populations through increased efficiency and acceptability.
4. Develop strategies to improve the availability and accessibility of health
professionals to minority communities through communication and coordi-
nation with nonfederal entities.
5. Promote and improve communications among federal agencies in adminis-
tering existing programs for improving the health status and availability of
health professionals to minorities.
6. Provide technical assistance and encourage efforts by local and community
agencies to meet minority health needs.
7. Improve the quality, availability, and use of health data pertaining to minority
populations.
8. Adopt and support research to investigate factors affecting minority health,
including risk-factor identification, education interventions, and prevention
and treatment services.

Source : Centers for Disease Control and Prevention (CDC). 1986. Perspectives in disease pre-
vention and health promotion, Report of the Secretary’s Task Force on Black and minority
health. Morbidity and Mortality Weekly Report 35(8):109–112.

The Healthy People Movement Gains Momentum

Healthy People, 2000

USDHHS continued to track health data through the 1980s and released
a new document in 1990 entitled Healthy People 2000: National Health
Promotion and Disease Prevention Objectives (HP 2000), that set standards
to be met by the year 2000 (USDHHS, 1990). Its introduction paints a pic-
ture of a hopeful future: “Healthy People 2000 offers a vision for the new
century, characterized by significant reductions in preventable death and dis-
ability, enhanced quality of life, and greatly reduced disparities in the health
status of populations within our society” (USDHHS, 1990, p. 1). Describing
the goal of reducing health disparities, HP 2000 states: “The greatest oppor-
tunities for improvement and the greatest threats to the future health status
of the nation reside in population groups that have historically been dis-
advantaged economically, educationally, and politically. These must be our
first priority” (USDHHS, 1990, p. 46). In fact, building on the 1985 Black
20 SETTING THE STAGE

and Minority Health Repor t, many health objectives were set for special
population groups—for example, low-income persons, racial/ethnic minori-
ties, adolescents, women, older persons, and persons with disabilities.
Three overarching goals summarized the vision of the authors in this
iteration:

1. Increase the span of healthy life for Americans;

2. reduce health disparities among Americans; and
3. achieve access to preventive services for all Americans (USDHHS,
1990, p. 6).

Healthy People Reviews, 1991–1999

Using Healthy People 2000 as its standard, USDHHS monitored progress

in the 1990s toward these goals and more than 300 subobjectives. Annual
Healthy People 2000 Reviews were published between 1991 and 1999 as well
as Fact Sheets and a consensus of HSIs for the Nation (USDHHS, 1999).
On February 21, 1998, President Bill Clinton made public an initiative
to eliminate health disparities (Ibrahim, Thomas, and Fine, 2003), moving
the nation from “reducing” to “eliminating” health disparities and repudiat-
ing separate, less ambitious goals for racial and ethnic minorities. Six areas
were targeted: infant mortality, cancer screening and management, diabetes,
cardiovascular disease, HIV/AIDS, and immunization. Four hundred million
dollars was pledged for this effort (APHA Policy Statement, 2000).7

Healthy People 2010

As ambitious plans were made to develop and publish Healthy People 2010,
U.S. Surgeon General Dr. David Satcher summoned national leaders in a
“Call to the Nation” to establish a methodology to eliminate racial and ethnic
health disparities. Satcher was instrumental in getting the issue of health dis-
parities back on track, pushing to eliminate disparities as the goal (Gamble
and Stone, 2006). After meeting, the American Public Health Association,
the NMA, the National Center for Vital and Health Statistics, the Office for
Civil Rights, NIH, and 35 other leading health organizations, both federal
and private, supported the plan but concluded that this goal was reachable
only with the collaboration of the federal government and the American peo-
ple, along with the muscle of a national coalition (Kanaan, 2000; APHA
Policy Statement, 2000; Hood, 2001).
In January 2000, the Healthy People 2010 initiative was officially
launched and in November 2000, USDHHS published Healthy People 2010:
Understanding and Improving Health (USDHHS, 2000), the third attempt
 History of the Movement to Address Health Disparities 21

to elucidate comprehensive national health objectives. Established for the

first time was the goal of eliminating health disparities among subgroups
(as urged by Satcher), in addition to a goal to “increase quality and years
of healthy life.” The following statement captures the guiding principle of
HP 2010:

… regardless of age, gender, race or ethnicity, income, education, geographic loca-

tion, disability, and sexual orientation – every person in every community across the
Nation deserves equal access to comprehensive, culturally competent, community-
based health care systems that are committed to serving the needs of the individual
and promoting community health. (USDHHS, 2000, p. 16)

Progress toward meeting these goals will be measured by analyzing data col-
lected on 498 population-based objectives. One expert in the field of health
disparity research, Kenneth Keppel, maintains that the Healthy People 2010
analysis will result in the most complete and extensive measurement of
health disparities to date (Keppel, 2007).

The Healthy People Consortium Established and Citizen

Participation Encouraged
In an effort to involve a greater cross-section of ideas and expertise,
USDHHS established The Healthy People Consortium, an alliance of
national and state agencies, experts in public and environmental health, and
individuals and local organizations who shared testimonies and comments
that were considered as this new set of objectives was formulated. Three
national meetings and five regional meetings occurred in 1998 (USDHHS,
2000). And for the first time, individual citizens were asked for their contri-
butions, of which over 11,000 were received and examined by the Consortium
(USDHHS, 2000).

The National Healthcare Disparities Reports

Analyzing health disparities in the Year 2010 publication included address-
ing differences in education, sexual orientation, and rural–urban living in
addition to the special population groups included in the Healthy People
2000 publication: low income, racial/ethnic minority, and disabled.
Because the issue of disparities was now front and center, Congress
requested that the Agency for Healthcare Research and Quality also begin
producing an annual report, the “National Healthcare Disparities Report”
(NHDR). This was initiated with the 2003 issue. When the 2007 report was
published, the authors noted a distinct lack of improvement:

Based on 2000 and 2001 data …, the number of measures on which disparities have
gotten significantly worse or have remained unchanged since the first NHDR is
22 SETTING THE STAGE

TABLE 2-3 Ten National Medical Association Recommendations for Health

Equity, Paraphrased (Hood, 2001)
1. Create a Health Policy and Research Institute to document racial bias
2. Accept racial bias and racism as risk factors for health disparities
3. Address the impact of racial bias and racism in the medical arena
4. Legislate tax incentives for small businesses to enable them to provide insur-
ance for low-wage workers
5. Restructure Medicaid and Medicare eligibility to respond to medical neces-
sity not income, especially for elderly and disabled
6. Reform Medicaid and Medicare so provider compensation is tied to severity
of illness and comorbidity.
7. Hold Congressional hearings on the impact of racism on health care
8. Establish a national committee on racial bias and ethnic health disparities
9. Adopt uniform standards to collect health care outcome data by race/
ethnicity
10. Increase funding for NIH Center for Minority Health Disparities

Source : Hood, Rodney G. 2001. Confronting racial and ethnic disparities in health care. Academic
Medicine 76(6):584–585.

higher than the number of measures on which they have gotten significantly better
for Blacks, Hispanics, American Indians and Alaskan Natives, Asians and poor
populations. (2007 National Healthcare Disparities Report, 2008, p. 1)

The NMA, responding to the call for the elimination of health disparities,
established the “Commission for Health Parity for African Americans” in
2001 and published 10 recommendations (Table 2-3) of their own toward
achieving health equity (Hood, 2001, pp. 584–585). Clearly, the NMA was
interested in an overhaul of the system to address the root causes of racial
health disparities. In their recommendations, they steer away from blaming
the victim, urging behavioral change, or calling for more research. Instead
the emphasis is on moving toward re-orienting the focus of health disparities
away from the sufferer and toward what the powerful need to do to correct
the injustice.

Using the Healthy People Paradigm to Measure Health

Disparities in Real Time

Dr. Walter Tsou, past president of the American Public Health Association,
says of health disparities that “… we value what we measure and we mea-
sure what we value. This is why we can find the price of any stock instan-
taneously at any minute of the day and also why, until recently, we have
not had very many measures of health disparities” (Tsou, 2004). The field
of disparities research is now beginning to respond to Tsou’s observation.
 History of the Movement to Address Health Disparities 23

Measuring disparities to measure our progress in eliminating them is a com-

paratively new endeavor in public health and epidemiology. Although some
researchers, like W.E.B. DuBois (see pages 9–10 of this chapter), had such
matters on their minds many decades ago, a process like the one that is
under construction now is growing every day. This process has substantial
potential to guide us in the direction of eliminating health disparities.

Health Status Indicators (HSIs)

There is a substantial literature on the various methodologies one could use
to measure a disparity in health, and this topic is receiving illuminating but
limited attention in the literature (Pearcy and Keppel, 2002; Keppel et al.,
2005; Harper et al., 2008). At the same time, it is worth noting that most
studies of disparities have proceeded by looking at one disease or condition
at a time, with only very few efforts to analyze several at once (Geronimus,
Bound, Waidmann, 1999; Williams 1999). In an effort to overcome this
shortcoming and in an implicit effort to establish a paradigm for the mea-
surement of several health disparities at once, a study was published on 22
HSIs in Chicago comparing outcomes for Black and White people between
1980 and 1998 (Silva et al., 2001). Using measures of mortality, birth out-
comes, and infectious diseases, they found no progress in reducing racial
disparities during this 18-year period.
Another important contribution in this area came in 2002 and evaluated
the HP 2000 goal of reducing health disparities at the national level by
examining progress in reducing disparities among the five largest racial/
ethnic groups in the United States for 17 HSIs between 1990 and 1998
(Keppel, Pearcy, and Wagener, 2002). The analysis revealed that for the
majority of indicators, racial/ethnic disparities had declined on a national
level over the period, but mostly by only small amounts. However, a
comparable Chicago-specific analysis focusing on non-Hispanic Black/
non-Hispanic White disparities found that although the majority of racial
disparities narrowed between 1990 and 1998 nationally, the opposite
was true in Chicago where the majority widened over the same interval
(Margellos, Silva, Whitman, 2004).
Recently, these analyses of Keppel et al. and Margellos et al. have been
updated through 2005 (Orsi, Margellos-Anast, Whitman, 2010). The results
are disappointing: the United States as a whole is making little progress
in reducing Black–White health disparities, and Chicago continues to get
worse over time, a process that the authors refer to as “backwards propul-
sion.” For example, in 1990 the Black all-cause mortality rate in Chicago
was 36% higher than the White rate; in 2005 it was 42% higher. In 1990 the
breast cancer mortality rate was 20% higher in Black women; in 2005 it was
24 SETTING THE STAGE

99% higher. As the authors comment, “Overall, progress toward meeting the
Healthy People 2010 goal of eliminating health disparities in the U.S. and
in Chicago remains bleak. With over 15 years of time and effort spent at the
national and local level to reduce disparities, the impact remains negligible”
(Orsi, Margellos, and Whitman, 2010, p. 1).

Eliminating Disparities

These research analyses, taken together and built on the foundation of the
Healthy People initiatives, suggest a model or paradigm (Kuhn, 1962) for
investigating how a society’s (community, city, state, country) progress
toward the elimination of health disparities might be evaluated beyond ana-
lyzing just one health measure at a time. This matter is far from settled but
it is best to make this consideration explicit, as has been attempted here, to
call for more research in this area.
National data show that health disparities among Americans—especially
among the poor and among racial/ethnic minorities—are increasing. How
does one understand the goal of eliminating such disparities in this context?
Is the goal an impossible one? One article notes, “These disparities are his-
torically rooted in inequities from the past that persist today” (Ibrahim, 2003,
p. 1621). In 2008, the American Journal of Public Health reprinted an edi-
torial from 2000 which noted that “… long established and growing health
disparities are rooted in fundamental social structure inequalities, which are
inextricably bound up with the racism that continues to pervade U.S. society”
(Cohen and Northridge, 2008, p. S17). Can a society legislate that disparities
disappear or does it need to address the underlying issue of racism?

Healthy People 2020 and the Future

As this book is being written, conversations are taking place about the devel-
opment of Healthy People 2020 (HP 2020), and embedded in those conver-
sations are the issues of health disparities, health equity, and differences in
these concepts (USDHHS, Phase I Report). Announcements have gone out
inviting members of the public to submit written comments and to attend
the meetings of the Secretary’s Advisory Committee on National Health
Promotion and Disease Prevention Objectives for 2020.8
Four key values have been crafted by the Advisory Committee for HP
2020 that will guide how the elimination of health disparities may lead to
health equity:

1. We must value all people equally;

2. health is a high value both personally and societally;
 History of the Movement to Address Health Disparities 25

3. everyone should be able to achieve the highest health level possible;

4. health resources should be distributed fairly (USDHHS. Phase I
Report).

By the year 2050, non-White people will comprise fully 54% of the U.S.
population.9 Can a society prosper if one-half of its members suffer ill health
because of discrimination and racism? Will the United States have the social
and political will to eliminate disparities and foster equity? As epidemiolo-
gist Camara Phyllis Jones says, “We will need to understand that these racial
disparities represent opportunities to increase our scientific understanding of
many disease processes, to succeed in primary prevention rather than just
screening and treating vulnerable populations, and to combat ideas of bio-
logic determinism that shape public attitudes about the possibility of change”
(Jones, 2001, p 304).
Some headway has been made in the last century and a half. Table 2-4
highlights some of the milestones discussed in this chapter.

TABLE 2-4 List of Important Dates in the History of Racial/Ethnic Health

Disparities, United States, 1847–2010

1847 American Medical Association is founded; closed to all non-White

persons
1862 Freedmen’s Hospital (Washington, DC) founded to provide medical
care to freed slaves and displaced White people; later became
Howard University Hospital (American Medical Association, 2009)
1867 Howard University Hospital established
1876 Meharry Medical College founded, the first Medical school open to
Black persons seeking to become Doctors or Nurses
1895 National Medical Association founded in Atlanta, GA
1896 Plessy v. Ferguson Supreme court Decision rules that segregating
railroad passenger cars was not a violation of the 14th amendment.
1896 Frederick L. Hoffman publishes Race Traits and Tendencies of the
American Negro
1906 Atlanta University Sponsors Conference for the Study of Negro
Problems, Atlanta, GA
1906 W.E.B. DuBois publishes The Health and Physique of the Negro
American
1915 First Negro Health Week held
1946 The Hospital Survey and Construction Act (Hill-Burton) passed
1951 Office of Negro Health Work closed
1954 Brown v. Topeka Board of Education: Supreme Court ruling against
segregation in U.S. schools
1963 Simkins v. Moses Cone Memorial Hospital case lays groundwork for
desegregation of health facilities

(continued)
26 SETTING THE STAGE

TABLE 2-4 (continued)

1964 Civil Rights Act passed, ending federal assistance for any program
that practiced racial segregation
1964 Hill-Burton Act revised to eliminate “separate but equal” clauses
1965 “The Great Society Movement” initiated under President Lyndon
Johnson
1965 Medicare/Medicaid Act starts the push for complete desegregation
of Health Care facilities
1977 Reorganization of U.S. Dept. of Health Education and Welfare
1979 Healthy People Report from Surgeon General published with
Califano foreword
1979 U.S. Dept. of Health Education and Welfare becomes U.S. Dept. of
Health and Human Services (USDHHS)
1980 First Healthy People document published: Promoting Health/
Preventing Disease: Objectives for the Nation
1985 The Malone-Heckler Report, Black & Minority Health, published
1986 USDHHS Establishes Office of Minority Health
1990 Healthy People 2000: National Health Promotion and Disease Prevention
Objectives published
1991– Healthy People Reviews published
1999
1998 Mandate to Eliminate Health Disparities, made by President Bill
Clinton
2000 Healthy People 2010: Understanding and Improving Health published
2003 National Healthcare Disparities Reports begun
2010 Healthy People 2020, yet to be published

Source : Compiled from information discussed in this chapter.

Conclusion

John Ayanian, one of the most prolific analyzers of health-care disparities in

the United States (Ayanian et al., 2005; Trivedi and Ayanian, 2006; Sequist
et al., 2008), writes that “… the field of healthcare disparities research has
developed in three phases.” He notes that Phase 1 started with the 1985
Black & Minority Health Report (as discussed above). The purpose of that
report was to demonstrate the existence and magnitude of health-care dis-
parities. Phase 2, he continues, started in the mid-1990s when we tried to
delineate “the mediators of racial, ethnic, and socio-economic disparities in
care and their impact on health outcomes.” Phase 3, which started about
2000, follows directly from the previous two phases and is concerned with
what interventions and programs are implemented to ameliorate health-care
disparities (Ayanian, 2008).
Although the health-care disparities that Ayanian discusses are not the
same as health disparities, his model is applicable to the latter as well. One
can always know more about the magnitude and causes of health disparities,
 History of the Movement to Address Health Disparities 27

and such research is welcomed. However, the time has come now to act: to
reduce and then eliminate them, as called for by Healthy People 2000 and
Healthy People 2010.
To do less is not an option. Karl Marx suggested more than 150 years
ago, “The philosophers have only interpreted the world in various ways; the
point, however, is to change it” (Marx, 1845). This book is an attempt to
help move such a process ahead with respect to public health practitioners
and health disparities.

Notes

1. Harriet Washington reports that one quarter of all Black slaves who fled north when
the Civil War began died in make-shift camps set up by the Union Army (Washington,
2006).
2. The Howard and Meharry medical schools were the only ones still in operation by
1920 (Smith, 1999).
3. In Plessy v Ferguson, the Supreme Court ruled that segregating railroad passenger
cars was not a violation of the 14th amendment.
4. Go to the URL below to see the full list of “Great Society” programs. Online.
Available: http://www.colorado.edu/AmStudies/lewis/2010/gresoc.htm. Accessed:
October 15, 2009.
5. Go to the URLs below to read the story of Califano’s tenure under President Carter
and the smoking issue. Online. Available: http://docsouth.unc.edu/sohp/L-0125/
menu.html. Accessed: March 30, 2009. www.protectthetruth.org/josephcalifano.htm.
Accessed March 30, 2009.
6. Go to the URL below to read the history of the United States Department of Health
and Human Services. Online. Available: http://en.wikipedia.org/wiki/United_States_
Department_of_Health,_Education,_and_Welfare. Accessed: April 23, 2009.
7. To access all Advocacy and Policy Statements by the American Public Health
Association beginning in 1948 through the present, see the following URL; to
access policies related to Healthy People 2010, search for Policy # 20005, dated
1/1/2000. Online. Available: www.apha.org/advocacy/policy/policysearch/default.
htm?NRMODE=Published. Accessed: October 15, 2009.
8. Interested persons are encouraged to register or submit comments. Online. Available:
www.healthypeople.gov/hp2020/advisory/default.asp. Accessed: October 15, 2009.
9. Go to the following URL to access the U.S. Census website. Online. Available:
http://www.census.gov/Press-Release/www/releases/archives/population/001720.html.
Google: “Population percent US 2050.” Accessed: October 15, 2009.

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Section 2

The Importance of Local Data

Ami M. Shah, Steven Whitman, and

Maureen R. Benjamins

Introduction

The Sinai Model is designed to reduce disparities and improve health. The
first step to achieving this goal is to obtain meaningful health data. It has
become increasingly evident that existing health data for large geographic
areas mask important differences in how groups within a heterogeneous
population experience health (Northridge et al., 1998). Local-level data col-
lection is one possible solution to this problem. It allows for the examina-
tion of health problems for specific groups at the community level, which is
particularly relevant for large, diverse urban centers. The study of popula-
tions in smaller geographic areas can help to uncover the nature of health
disparities and offer insight to shape targeted community-based interven-
tions. This is especially noteworthy because one of the overarching goals for
the “Healthy People” Initiative has been to reduce and eliminate disparities
over the last two decades (United States Public Health Service, 1991; United
States Department of Health and Human Services, 2000).
Small-area studies have slowly gained prominence in health research begin-
ning with Wennberg and his colleagues in their examination of variations in
health-care service utilization (Wennberg and Gittelsohn, 1973; McPherson
et al., 1982; Skinner et al., 2003). This approach has since been used to facil-
itate many public health efforts such as: to contest the placement of tobacco
and alcohol advertising in certain minority neighborhoods (Hackbarth et al.,
2001); to study the relationship between neighborhood socio-economic factors
31
32 IMPORTANCE OF LOCAL DATA

and birth weight in California (Pearl, Braveman, and Abrams, 2001); and to
track the movement of the AIDS epidemic (Zierler et al., 2000; Needle et al.,
2003). In addition, it has been used more generally to examine the relationship
between neighborhood and health (Diez-Roux, 2001; Kawachi and Berkman,
2003; Whitman et al, 2004; Shah, Whitman, and Silva, 2006; Cummins, Curtis,
and Diez-Roux, 2007).
Some health data are available at the local level. For example, existing
data that can be geocoded to the county, city, zip code, or community level
may be derived from traditional surveillance systems (e.g., vital records and
communicable disease registries). These data provide information on small-
area trends and variances in mortality (Fang et al., 1995; Whitman et al.,
2004) or measure issues related to birth outcomes (Krieger et al., 2003) and
infectious diseases (Krieger et al., 2003). Information for other health mea-
sures, such as the prevalence of chronic diseases, health behaviors, and other
risk factors, come from health surveys and are not available at the local
level. Existing surveys are routinely conducted at the national (e.g., National
Health Interview Survey) and state (e.g., Behavioral Risk Factor Surveillance
System [BRFSS], California Health Interview Survey) levels, sometimes at
the county level (e.g., Community Health Indicator Project [Metzler et al.,
2008]; The Health of King County Report [Public Health Seattle & King
County, 2008]) but rarely at the city level (e.g., New York City Community
Health Survey). For some counties and cities, such information can be
derived from state surveys (e.g., Chicago BRFSS), but rarely are health sur-
vey data available at the community level (however this may be defined).
These health data are most valuable because they describe modifiable health
behaviors or practices that are relevant to guiding planning, programs, and
policies, and yet, they are almost never known. For example, there are lim-
ited data or surveillance systems that measure the proportion of people who
smoke or who are overweight at a community or neighborhood level.
One response to these problems is to conduct a local area health survey.
This type of survey can not only uncover important variations in health but
also has the potential to inspire communities and public health professionals
in pursuit of solutions to the health problems detected. For example, there
may be some impact from telling a community that 20% of adults in the
United States smoke. However, telling people that a local survey found that
20% of adults in their community smoked is far more likely to catalyze col-
lective action around the problem of smoking.
The city of Chicago is an excellent place for a study of small areas. After
all, it is the “city of neighborhoods” (Pacyga and Skerrett, 1986). In 2000,
Chicago was the third largest city in the United States with a population
of almost 3,000,000 that was 36% non-Hispanic Black, 31% non-Hispanic
 Importance of Local Data 33

White, and 26% Hispanic. Chicago is also one of the most segregated cit-
ies in the United States (Massey and Denton, 1993), well-known for its
racial and ethnic enclaves (Holli and Jones, 1995). Existing health data for
Chicago are typically presented by its 77 officially designated community
areas (CAs), most of which are racially and ethnically homogenous (The
Chicago Fact Book Consortium, 1995). The CAs are aligned with census
tracts, making sociodemographic data about the CA available. Health data
from vital records and communicable disease registries are also available at
this level, but health survey data, which are the primary source for chronic
disease surveillance, health behaviors, and associated risk factors, are not,
as described earlier.
According to the Sinai Model, local is defined at the community or neigh-
borhood level, often based on shared experiences and common background.
This book describes exactly how this type of local data was collected in
Chicago. Section 2 of this book contains four chapters that describe how
local level survey data were collected to measure the health status of 10 cul-
turally diverse Chicago communities. Specifically, Chapter 3 describes the
methods used by the Sinai Urban Health Institute to examine the health of six
racially and ethnically diverse community areas, presenting data from Sinai’s
Improving Community Health Survey. Four of the communities selected are
predominantly homogenous and represent the primary racial and ethnic
groups in Chicago (e.g., White, Black, and Mexican). For the first time, data
from the other two communities capture the health of the largest Puerto
Rican population in Chicago and respond to demands from active commu-
nity groups for such information. Chapter 4 describes the methods and key
findings from a Jewish community that recognized the significance of having
local health data. The survey was conducted in the most densely populated
Jewish community in Chicago (with borders defined by community lead-
ers). Chapter 5 describes how three Asian surveys were conducted to capture
the health of Chinese, Vietnamese, and Cambodian populations within three
communities. The Chinese community was surveyed in Chicago’s Armour
Square (also known as Chinatown), an area with the highest concentration of
Asians. The Vietnamese and Cambodian populations were more dispersed
but located based on collaboration with community partners, who again saw
value in having specific health data about the community they serve. The
final chapter synthesizes survey data relevant to five major health outcomes
for all 10 of these communities to illustrate the importance of small area
studies in identifying meaningful variations. The data gathered from all 10
communities represent the first step of the Sinai Model toward eliminating
disparities and can ultimately be used to motivate communities, direct health
interventions, and improve health.
34 IMPORTANCE OF LOCAL DATA

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3
SINAI’S IMPROVING COMMUNITY
HEALTH SURVEY: METHODOLOGY
AND KEY FINDINGS

Ami M. Shah and Steven Whitman

In fond memory of Ingrid Graf and Charles Ward

Introduction

In response to growing inequities in health, the Sinai Health System

conducted a survey that has altered the way public health data are
used in Chicago. The Sinai Urban Health Institute (SUHI), a member
of the Sinai Health System, partnered with several community orga-
nizations, residents, and local leaders to complete one of the largest,
most comprehensive door-to-door health surveys in Chicago, titled
Sinai’s Improving Community Health Survey (Sinai Survey). For the
first time, meaningful, local data were available to delineate major
health problems facing Chicago neighborhoods. Findings were shared
with policymakers, residents, and others who needed to know how
to influence change toward improved health. Specifically, this chap-
ter describes how the survey was conducted, presents selected key
findings, and describes how these results were disseminated. Overall,
it exemplifies how public health surveillance can be political and
consequential.

37
38 IMPORTANCE OF LOCAL DATA

Rationale for a Local Health Survey

Sinai sits on the near west side of Chicago amid poor communities with
poor health. It was believed that if more were understood about this situa-
tion, then steps could be taken to improve matters. Existing data sources are
not adequate for this task. Although birth and death data are available from
accessible vital records files and can be tabulated at a local level, little other
health information is similarly available. It is not possible to calculate the
proportion of the population affected by a particular disease (prevalence) or
the “actual causes” of death and disability, as described in a seminal article
by McGinnis and Foege (1993). Without fully understanding these under-
lying or root causes of poor health, developing long term and sustainable
interventions for improvement becomes a serious challenge.
Information on such root causes traditionally comes from risk factor
data that may be gathered by existing health surveys like the Behavioral
Risk Factor Surveillance System (BRFSS) survey and the National Health
Interview Survey (NHIS). These surveys reflect the overall health of the
nation, a state, or sometimes a city but rarely have sample sizes that are
adequate to describe communities (or neighborhoods) and smaller racial
and ethnic groups of a diverse city like Chicago. For example, most survey
data are limited to non-Hispanic (NH) Blacks, NH Whites, and sometimes
Hispanics, but seldom are they available for Hispanic subgroups, Asians,
or any of their many subgroups. Existing health survey data are thus not
local enough. The need for such information was the rationale for the Sinai
Survey.

Partnerships and Funding

The inception of the Sinai Survey began in 2000 with a letter of inquiry to
The Robert Wood Johnson Foundation, one of the nation’s leading founda-
tions working to improve health and health care for all Americans. The
letter expressed SUHI’s idea to gather and utilize local health data as a
catalyst for improved public health programs and policies. It described
the gaps in existing health data (Benbow, Wang, and Whitman, 1998),
the importance of small area studies in improving health (Wennberg and
Gittelsohn, 1973), and the commitment and ability of the Sinai Health
System to improve health. Following the initial letter, an invitation to write
a full proposal was made, and a 2-year grant (starting January 2002) was
eventually awarded.
The Sinai Health System received funding to implement this grant
because of its unique commitment to improving the health of the communi-
ties it serves. The grant proposal emphasized the importance of local health
 Sinai’s Improving Community Health Survey 39

TABLE 3 -1 Prominent Individuals Who Wrote Support Letters on behalf of

Sinai Health System’s Proposal to The Robert Wood Johnson Foundation, 2001

Danny K. Davis, Member of Congress

Emil Jones, Jr., Illinois Senate Democratic Leader
Susana A. Mendoza, Illinois State Representative, 1st District
William Delgado, Illinois State Representative, 3rd District
Cynthia Soto, Illinois State Representative, 4th District
Arthur L. Turner, Illinois State Representative, 9th District
Roberto Maldonado, Cook County Commissioner, 8th District
Dorothy H. Gardner, President, Michael Reese Health Trust
Greg Darnieder, Executive Director, Steans Family Foundation
Debra Wesley Freeman, President and CEO, Sinai Community Institute
Anne M. Meegan, Program Director, Seattle STD/HIV Prevention Training Center

data and its potential in informing new programs, bringing in resources,

and galvanizing communities. It also described how the Sinai Health System
is comprised of a research arm (SUHI) and a community arm, the Sinai
Community Institute, which enables them to effectively drive change at the
community level. Thus, although SUHI led this initiative, it could not have
been possible without support from the Sinai Health System’s administration
and the Sinai Community Institute, along with their community partners.
Table 3-1 presents a list of prominent individuals who wrote support letters
on behalf of Sinai’s pursuit of the grant.

Methodology

From the beginning, SUHI researchers understood that the value of a local
survey would be maximized if it were conducted with the greatest scien-
tific precision, pursuing the highest possible standards. The Survey Research
Laboratory (SRL) of the University of Illinois at Chicago was thus contracted
to administer the survey. SRL has more than 40 years of experience design-
ing and conducting health surveys, particularly in vulnerable communities
on the south and west sides of Chicago. They proposed the best plan and the
most feasible budget to administer a survey.
Studies have shown that sampling through residential telephone lines was
less effective in locating members of vulnerable subpopulations, particu-
larly because of disconnected or missing telephone numbers (Northridge,
Morabia, and Ganz, 1998) and the advent of widespread cell phone use. It
was thus deemed important to gather data face-to-face. In addition, SRL
40 IMPORTANCE OF LOCAL DATA

recommended that each interview take no more than 1 hour to administer,

because anything longer would result in incomplete surveys. Finally, suffi-
cient sample size was necessary to obtain a representative sample of each
community surveyed. With these survey parameters, it was determined that
the final survey could contain approximately 500 items and would be admin-
istered face-to-face to roughly 300 randomly selected households per com-
munity area. In keeping with the given grant budget, six communities could
be surveyed.

Targeted Community Areas

Of Chicago’s 77 officially designated community areas, six were selected

for study. The boundaries for these areas were defined in the 1920s and thus
may or may not be consistent with how individuals within a given commu-
nity area define their so-called community or neighborhood. Nevertheless,
these geographic areas are often used as a basis for describing the city’s
health conditions, implementing services, and allocating resources (Chicago
Fact Book Consortium, 1995) and were thus used to administer the Sinai
Survey.
The six community areas were selected to reflect the major racial and
ethnic groups of Chicago residents. North Lawndale is predominantly NH
Black, and South Lawndale is predominantly Mexican. These communities
were selected because they are two primary communities served by the
Sinai Health System. Norwood Park is located on the northwest side and
has a median household income of $53,000. Although richer than the other
communities surveyed, it was selected because it was the poorest predom-
inantly NH White community in Chicago. Roseland was selected as a pre-
dominately NH Black community on the south side, with an average median
household income similar to that of Chicago. Finally, Humboldt Park and
West Town were selected for two main reasons. First, these two commu-
nity areas are heterogeneous—that is, in 2000, West Town was about half
White and half Hispanic (predominately Puerto Rican or Mexican), and
Humboldt Park was about half Black and half Hispanic (predominately
Puerto Rican or Mexican). They thus represented some aspects of the racial
and ethnic diversity of Chicago and reflected the changing dynamics fac-
ing many urban settings. Second, SUHI had a substantial history of work-
ing with community organizations in these communities. Humboldt Park
and West Town are two areas that are notable for their strong community-
based organizations and for being politically active in government. Table
3-2 presents demographic characteristics for the six Chicago communities
selected for study compared to Chicago and the United States.
TABLE 3-2 Demographic Characteristics of Six Chicago Community Areas Compared to Chicago and United States, Census 2000

Humboldt North Norwood Roseland South West Town Chicago United States
Park Lawndale Park Lawndale

Total population 65,836 41,768 37,669 52,723 91,071 87,435 2,896,016 281,421,906
Female (%) 52 56 53 55 42 48 52
Average Age (years) 25 26 43 35 25 30 32
Non-Hispanic Black (%) 47 94 1 98 13 9 36 12
Non-Hispanic White (%) 3 1 88 1 4 39 31 69
Hispanic (%) 48 5 6 1 83 47 26 13
Mexican (%) 24 3 3 0 76 25 18 7
Puerto Rican (%) 18 0 0 0 1 16 4 1
High school graduates (%)a 50 60 83 77 37 70 72 80
Median household income $28,728 $18,342 $53,402 $38,237 $32,320 $38,915 $38,625 $41,994
Unemployment Rate (%) b 18 26 3 17 12 7 10 6

Source : Whitman, Williams, and Shah, 2004, p. 4.

Notes:
a
Among those 25 years and older.
b
Percentage of resident civilians older than 16 years who did not have a job and were actively seeking work.
42 IMPORTANCE OF LOCAL DATA

TABLE 3 -3 Community Representatives of the Survey Design Committee and

Their Affiliations

Organization Survey committee participant

Big Brothers Big Sisters, Phil Smith, Community Coordinator

Humboldt Park and Resident of Humboldt Park
Block Club Federation, Feliz Villafane de Palacios, Director and
Humboldt Park Resident of Humboldt Park
Chicago Department of Public Jamila-Ra, Program Manager, Chicago
Health, Behavioral Health Division Department of Public Health and
Co-Chair of the Cook County West
District Community Health Council
Chicago Youth Centers, Cassandra Robinson, Chicago Youth
Roseland Centers and Resident of Roseland
Community Action Group, Jo Ann Bradley, Executive Director and
North Lawndale Resident of North Lawndale
Community Outreach Intervention Jaime Delgado, Director
Program, School of Public Health,
University of Illinois at Chicago
Chicago Cook County Anna Yuan, Executive Director
Community Health Council
El Hogar del Nino, South Concepcion (Connie) Chavarria,
Lawndale Program Director and Resident of
Pilsen (South Lawndale)
Westside Future, West Town Angela Ellison, Executive Director

Survey Design Committee

Full participation of and ownership by the community was sought out and
understood to be critical to the survey’s success. Therefore, a Survey Design
Committee (SDC) was convened to guide the development of the survey and
lay the foundation for the project. Some members of the committee came
from local community based organizations or social service agencies and/or
had several years of experience working in the target communities or neigh-
boring areas. They were community organizers, leaders, or residents (some
played a dual role) and served as the community representatives on the SDC.
Their names and affiliations are listed in Table 3-3. Other members included
administrative leaders from the Sinai Health System and epidemiologists
from the Sinai Urban Health Institute, who staffed the SDC.

Survey Development
The primary function of the SDC was to develop the survey instrument that
would gather information relevant to improving health in the targeted com-
munities. Over the course of 6 months, a collaborative process ensued to
 Sinai’s Improving Community Health Survey 43

design the survey. Meetings were held every other week from January through
March 2002, followed by 3 months of review and testing. Although no mone-
tary incentive was received, the majority of committee members attended all
six meetings. When unable to attend, they offered input via e-mail or phone.
The continuity of involvement on the SDC was a reflection of each member’s
commitment and Sinai’s philosophy of working with communities, both con-
sistent with Community Based Participatory Research philosophy and prac-
tices (Heaney, 1993; Drevdalh, 1995; Minkler and Wallerstein 2003).
SDC meetings focused on selecting key topics and questions for the sur-
vey. There was a consensus to ask questions about common health conditions
(such as hypertension, asthma, and diabetes) to assess prevalence. Questions
for these topics were adapted from existing national surveys (e.g., BRFSS
or NHIS). There was also general agreement on asking about well-known
behavioral risk factors such as tobacco and other substance use, poor nutri-
tion, and physical inactivity, which were also commonly asked on national
health surveys.
Early on, community representatives on the SDC wanted to clarify their
role and asked who would make the final decisions regarding health topics
and questions if/when there were disagreements. Without hesitation, investi-
gators responded that, “you (the community representatives) would.” There
was overwhelming agreement that the community leaders and residents
would have the final say in shaping the survey questions. Knowing that their
opinions were valued on this diverse committee, the community representa-
tives of the SDC opted not to accept the stipends that were offered to them.
Many topics were proposed by community representatives that were not
initially considered by the study investigators but proved to be most relevant
to the community. Examples of such topics were: whether and how often
residents reused cooking oils, grocery shopping habits, access to mental
health services, how community members felt about needle exchange pro-
grams, and the use of alternative medicines. Other proposed topics led to an
energetic and stimulating debate. For example, SUHI researchers suggested
asking questions regarding social capital. These questions would measure
feelings of trust and safety, levels of community engagement, and tolerance
of diversity. However, community representatives of the SDC felt it offensive
and even racist to ask these questions because this concept had been over-
studied and, in the end, would not effectively inform programs. Similarly,
community representatives felt questions on drug use would not be useful
and could potentially even be unsafe for interviewers to ask about. They also
felt that adequate information on community drug use was available from
other data sources and that asking sensitive questions to individuals in their
homes would not be appropriate or realistic. Thus, neither social capital nor
drug use were included as topics on the survey.
44 IMPORTANCE OF LOCAL DATA

While developing the instrument, the SDC decided only to administer

the survey to adults ages 18 to 75 years and primary caregivers of chil-
dren ages 0 to 12 years. The upper age limit for adults was set at 75 years
because the SDC expressed concern about the ability of older seniors to
accurately answer all of the questions and for children at 12 years because
they believed that primary caregivers may not be knowledgeable about chil-
dren over age 12.
Community representatives of the SDC also recognized a unique oppor-
tunity to distribute much-needed health information to the community. In
fact, they believed it was the project’s responsibility to do so. For example,
if interviewers asked knowledge questions about diabetes management from
the survey, then it was important to provide answers to these questions, espe-
cially when respondents were unsure of their responses. A packet of health
information was thus left with each household after completing the interview
and if respondents had immediate questions or wanted additional informa-
tion for the future they could contact the Sinai Community Institute.
Once the questions were finalized, the survey instrument underwent exten-
sive review and pretesting between April and August 2002. The adult and
child modules of the instrument and all supporting materials were trans-
lated into Spanish. Modifications were made after cognitive interviews and
pretesting with interviewers who were also native Spanish speakers from
the community (both from Puerto Rican and Mexican heritage). The instru-
ment was programmed for computer-assisted personal interviewing (CAPI)
to ensure more efficient data collection and to minimize errors.
The final instrument contained 469 items/questions on the adult ques-
tionnaire and 144 on the child questionnaire (Sinai Urban Health Institute,
2009). Table 3-4 presents the major topic areas of the Sinai Survey, which
are categorized as: health conditions, health behaviors and attitudes, health-
care access and utilization, quality of life, and other social or environmental
factors. The final survey instrument, along with other study materials, was
approved by the Institutional Review Boards at the University of Illinois at
Chicago and the Sinai Health System.

Sample Selection
SRL was also responsible for designing the sampling frame for data collec-
tion. They constructed a three-stage probability sampling design with the
goal of obtaining a representative sample of adults and children from each
of the six selected community areas, as illustrated in Figure 3-1: Humboldt
Park, North Lawndale, Norwood Park, Roseland, South Lawndale, and West
Town. At the first stage, 15 census blocks from each community area were
selected using probability proportional to size sampling (Sudman, 1976,
TABLE 3 - 4 Sinai’s Improving Community Health Survey Topics

Health risk factors:

Health-care access and knowledge, behaviors Other social and
utilization Health conditions and attitudes Quality of life environmental factors

Health coverage Arthritis Alcohol use Self-rated health Acculturation

Health-seeking Asthma Anger management skills Health-related quality of life Education
behavior Chronic respiratory Diet/Nutrition Perceived stress Employment
Prescription problems HIV/AIDS testing Perceived Food shopping habits
medications Depression Needle exchange Racism/Discrimination and Perceived violence
Alternative/ Diabetes programs coping Phone service
Complimentary Heart problems Parenting skills Mode of
medicines Hypertension Physical activity/exercise transportation
Prenatal care Obesity SIDS knowledge
Cancer screening Tobacco Use
Mental health services

Source : Sinai’s Improving Community Health Survey, 2002–2003.

46 IMPORTANCE OF LOCAL DATA

2 3

4
Sinai Health System
5

Legend
1. Norwood Park
2 Humboldt Park
3. West Town
4. North Lawndale
5. South Lawndale 6
6. Roseland

0 7,000 14,000 28,000 42,000 56,000

Feet

Figure 3-1 Six of Chicago’s 77 Community Areas Surveyed by Sinai’s Improving

Community Health Survey, 2002–2003

pp. 134–138; Graf and Foote-Retzer, 2003, pg. 2). This meant that the blocks
in each community area were selected in a manner proportionate to the num-
ber of adults (ages 18 years and older) living on these blocks according to the
2000 U.S. Census. Second, 37 households were selected at random from the
blocks. When there were fewer than 37 housing units on a given block, equal
numbers of households from the remaining blocks in the community area
were randomly selected. At the third stage of selection, interviewers admin-
istered a household screener to enumerate all household members and select
a random adult (18–75 years) and a child (0–12 years) respondent using the
Trodahl–Carter–Bryant methodology (Troldhal and Carter, 1964). At the
end of the adult interview, if there were any children in the household age
12 years or younger, the questionnaire was programmed to randomly select
 Sinai’s Improving Community Health Survey 47

from among the eligible children in the household and then the adult with
the most knowledge of that child’s health care was interviewed. Additional
details about the overall survey methodology have been published elsewhere
(Graft and Foote-Retzer, 2003; Dell et al., 2005).

Survey Administration
The survey was administered face-to-face in respondents’ homes from
September 2002 through April 2003. All selected households received
advance letters introducing the project and notifying the household of the
interviewer’s visit. The advance letters were jointly signed by the investiga-
tors and the respective community organization leaders for the area.
Because of the diversity of the SDC, it became clear that the project also
needed a logo with a common message for all residents in the six com-
munities. The Committee felt that the collective partnership of the SDC
needed to be represented as its own entity, as opposed to individual work or
community affiliations. Thus, after weeks of going back and forth, the SDC
agreed to a project logo (Fig. 3-2) with hands reaching toward the sky, sig-
nifying the contributions of all in improving the health of communities. The
logo was used in newsletters and project materials moving forward.

Figure 3-2 Sinai’s Improving Community Health Survey Project Logo

48 IMPORTANCE OF LOCAL DATA

Table 3-5 Total Number of Completed Surveys by

Community Area

Community Area Adult Child

Humboldt Park 300 160

North Lawndale 304 172
Norwood Park 190 70
Roseland 302 129
South Lawndale 300 198
West Town 303 82
Total 1699 811

Source : Sinai’s Improving Community Health Survey,

2002–2003

Interviewers were recruited from local newspapers and received more than
20 hours of formal training. Roughly one-third of them were native Spanish
speakers or bilingual. They visited homes during the day, evenings, and week-
ends to contact the selected survey participant or the selected child’s primary
caregivers. If no one was home to complete the survey or the adult selected
to be interviewed was unavailable, interviewers would return to complete the
survey. They left follow-up notes regarding a return visit and/or scheduled
an appointment for a later visit. Similarly, interviewers would return to inter-
view the primary caregiver of the randomly selected child when they were
not available. In most instances, the individual who answered the door and
completed the screener was different from the adult or primary caregiver of
the child selected to be interviewed. To gain access to hard-to-reach house-
holds, interviewers contacted neighbors or key informants and made up to 12
attempts at different times of the day and days of the week before assigning
a final disposition code of “non-contact.”
On average, the adult interview lasted approximately 1 hour and the child
interview lasted about 15 minutes. Respondents were given the option to
conduct the interview in either English or Spanish. Close to 20% of all inter-
views were completed in Spanish. Respondents received $40 for completing
the adult questionnaire and $20 for the child questionnaire. All households
received a packet of general health information, as described earlier. In the
end, data on 1,699 adults and 811 children were gathered. Table 3-5 presents
the total number of completed adult and child surveys by community area.

Response, Contact, and Cooperation Rates

Several measures were calculated to evaluate and monitor survey administra-

tion. Of the original 4,888 household addresses selected for this study, 10.5%
 Sinai’s Improving Community Health Survey 49

were non-residential; among them, 23.7% were unavailable or could not be

contacted. Of the remaining 3,337 households approached and screened,
2,354 (92.2%) households were eligible. There were thus 1,953 eligible per-
sons contacted, and among them, 1,699 adult surveys were completed, along
with 811 child surveys.
The official response rate measures the overall proportion of eligible respon-
dents who complete the survey. It was calculated by dividing the number of
completed interviews by the sum of all eligible respondents, which includes
refusals, non-contacted eligibles, and an estimated proportion of households
whose eligibility was unknown. Based on this American Association for
Public Opinion Research definition, the response rate for the Sinai Survey was
43.2% (American Association for Public Opinion Research, 2000; Johnson
and Owens, 2004).
Another important measure, particularly in hard-to-reach communities that
are often in transition, is the contact rate. This is the proportion of selected
addresses that could be contacted, which was 76% for all six communities.
The lowest contact rates were in North Lawndale (70.5%) and Humboldt
Park (73.2%), two non-White communities with the lowest median house-
hold income, and the highest was in Norwood Park (85.3%), a predominately
White community with the highest median household income (Table 3-2).
Once contact was established, it is important to note that the Sinai Survey
had extraordinarily high cooperation rates, despite literature suggesting that
it is difficult to conduct surveys in vulnerable communities and that non-
White populations are not interested in participating in research (Wendler
et al., 2006). The cooperation rate is the proportion of contacted adults who
completed the screener and/or the survey. In this case, the cooperation rate
was 76.5% for the screener and 87.0% for the survey.
These exceptionally high cooperation rates were likely the result of several
factors. For one, there was strong community involvement, as described ear-
lier, in introducing the survey to residents by sending advance letters and
promoting the survey in local newspapers. In addition, the interviewers
were persistent and flexible in reaching out to individual households. They
visited homes during evening and weekend hours, contacted neighbors and
key informants, offered the survey in English and Spanish, and made up to
12 personal attempts at different times to contact each household before the
household was declared as a “non-respondent.”
Despite the extra effort put forth, interviewers faced some challenges in
survey administration. For instance, there was a higher-than-expected num-
ber of non-residential vacant lots, unoccupied homes, and “locked gate”
housing units. Some housing projects were not receptive to our administering
the survey, despite writing additional letters to their management company
for their approval, and interviewers were in turn denied entry. In addition,
50 IMPORTANCE OF LOCAL DATA

there were two incidents of crime that were reported to officials. One inter-
viewer was caught in crossfire shooting, and another was robbed at knife-
point. Interviewers were well-aware of and familiar with issues of safety in
their assigned communities. And although they understood the dangers and
received training and support on how to handle such situations, they could
not avoid all risk.
“Urbanicity” is a well-documented correlate of survey non-response
(Groves and Couper, 1998). The Sinai Survey response and contact rates
reflect this increasing difficulty of conducting survey research in urban
environments. Physical barriers to participation, restricted-access apartment
buildings in particular, and respondent concerns with crime and privacy, the
latter of which is reflected in strong IRB assurances and protections, made
the collection of survey data in Chicago challenging but not impossible.

Data Analysis

Observations were analyzed using SAS, version 9 (SAS Institute Inc., 2002–
2003) and Stata, version 8.0 to account for sampling design effects (Stata
Corporation, 2003). Based on established survey design theory, two sam-
pling weights were calculated and applied to survey observations: a proba-
bility of selection weight (at the block, household, and respondent levels) and
a post-stratification weight (to assure the sample accurately reflected the age,
sex, and race/ethnicity of the 2000 U.S. Census base population).

Survey Results

Although there are many important findings on the survey, a select few
are described here. Topics shown include: health-care access and utiliza-
tion, chronic health conditions, and health risk factors. Whenever possible,
Sinai Survey data are compared with Chicago or U.S. averages from existing
health surveys such as BRFSS and NHIS.

Health-Care Access and Utilization

An individual’s ability to access health care is closely tied to his/her health and
well-being. The lack of health insurance coverage is at the forefront on our
nation’s health agenda today, yet little is known about how local communities
utilize services. There are several measures of health-care access and utilization
on the Sinai Survey. These include topics such as access to primary care, pre-
ventive services, prescription medications, complimentary and alternative medi-
cines, and insurance coverage. Table 3-6 presents a few selected outcomes.
Table 3-6 Selected Findings on Health-Care Access and Utilization

Health-care access and Humboldt North Norwood South West Comparison

utilization Park (%) Lawndale (%) Park (%) Roseland (%) Lawndale (%) Town (%) (%)

Currently insured 61 61 93 70 46 73 73a

(18–64 yrs)
Did not obtain needed 33 28 9 30 25 34 …
dental care
in past year
Did not obtain needed 23 24 4 15 12 18 …
prescription medica-
tions in past year
Pap Smear in last 87 94 71 93 90 83 88b
3 yearsb
Mammogram in the
last 2 years (women
>40years) 76 77 80 85 90 74 83c

Source : Sinai’s Improving Community Health Survey, 2002–2003.

Notes: Data are weighted and age adjusted to the 2000 Standard Population, except when noted.
a
Comparison data from Chicago BRFSS 2002.
b
Pap Smear data are not age-adjusted. Comparison data from U.S. BRFSS 2002.
c
Comparison data from U.S. BRFSS 2002.
52 IMPORTANCE OF LOCAL DATA

The proportion of non-elderly adults (<65years) with insurance coverage

ranged from 46% in South Lawndale (a mostly Mexican immigrant commu-
nity) to 93% in Norwood Park (a mostly NH White community). Thus, a res-
ident in South Lawndale was nine times more likely to be without insurance
compared with a resident in Norwood Park ( p < 0.001). Coverage varied for
most communities (11 of the 15 pairwise community comparisons) and when
compared to Chicago (73%) (Shah, Whitman, and Silva, 2006). Interestingly,
among those with insurance (with the exception of Norwood Park), more
than half relied on public health insurance, suggesting that employer-based
coverage is not sufficient (data not shown).
One consequence of having no insurance coverage is limited utilization
of routine preventive health services. Respondents living in the five non-
White communities were significantly more likely to delay seeking dental
care and prescriptive medications compared to Norwood Park ( p < 0 .001).
The uninsured were also up to four times more likely to have never had
a mammogram and never had their blood pressure taken (Whitman, Shah,
and Williams, 2004, data not shown). On the contrary, those with insurance
were nearly twice as likely to have been diagnosed with chronic conditions
like hypertension, diabetes, and asthma, suggesting that the uninsured are
less likely to get diagnosed appropriately. Because those without insurance
may have limited access to a health- care provider, their opportunity to be
screened and their utilization of preventive services were lower than those
with insurance.
Results also indicate that the majority of women in all six communities are
receiving routine cervical and breast cancer screenings (Table 3-6). Access to
Pap Smear tests is consistent with declining trends in the prevalence of and
mortality from cervical cancer for most women in the United States. In fact,
the overwhelming majority of women in all six communities had received
a Pap Smear test in the last 3 years, with the lowest rate reported by White
women in Norwood Park. Similarly, the majority of women 40 years and
older reported having had a mammogram in the prior 2 years. In fact, despite
low insurance coverage in South Lawndale, 90% of women had received a
recent mammogram, the highest estimate reported by the Sinai Survey.

Chronic Health Conditions

In addition, for the first time, the severity of several chronic health condi-
tions facing these Chicago communities was assessed. Most survey questions
used to measure disease prevalence came from existing national health sur-
veys and asked whether respondents had ever been diagnosed with a partic-
ular health outcome, such as: “Has your doctor or a health professional ever
told you that you have diabetes?”
 Sinai’s Improving Community Health Survey 53

Table 3-7 presents five common health conditions affecting Chicago com-
munities: hypertension, diabetes, obesity, depression, and asthma. Five non-
White communities reported a disproportionately high burden of poor health
on these measures. For example, about 40% of adults in Roseland and North
Lawndale were living with high blood pressure compared to 23% of adults
in Chicago ( p < 0.001). In these two African American communities, despite
differences in their median household income, a greater proportion of adults
diagnosed with high blood pressure were younger and female, which has
important implications for targeting interventions.
The prevalence of diabetes was also significantly higher in four of the six
communities (all eight pairwise comparisons were significant at p < 0.001).
When stratified by race and ethnicity, the diabetes prevalence among Puerto
Ricans was particularly higher than other groups (Whitman, Silva, Shah, 2006;
see Chapter 10). For example, the percentage of Puerto Ricans with diabetes
was significantly higher than the percentage of Mexicans and Whites (20.8%
vs. 4.1% and 3.1%, respectively; p < 0.025 for both). Prevalence estimates for
Hispanics in Chicago are generally available from the Chicago Department of
Public Health but are rarely available for Hispanic subgroups like Mexicans and
Puerto Ricans. Without the Sinai Survey, the disproportionate burden of diabetes
among Puerto Ricans almost certainly would have never been known.
Table 3-7 also presents other important variations in health documented
by the Sinai Survey. Rates of obesity (adult and pediatric), depression, and
asthma (adult and pediatric) were consistently lower in the White commu-
nity of Norwood Park compared to the non-White communities. The mostly
Black communities reported high rates of obesity, whereas the predomi-
nately Mexican immigrant community reported the highest rate of depres-
sion. Asthma was most notable in the mixed communities of West Town
and Humboldt Park, which are undergoing urban transition. The burden of
poor health, although far worse among the non-White communities in gen-
eral, varied among the communities. This emphasizes the need to identify
specific health problems facing each community and to tailor interventions
addressing them.

Health Risk Factors

The Sinai Survey also asked many questions related to health risk factors
associated with knowledge, attitudes, and behaviors. Again, these results
are most relevant to shaping new interventions and directing resources to
address health problems to local communities. Selected results on smoking,
HIV testing, and diet/nutrition are described here.
The prevalence of smoking was disproportionately higher in the minor-
ity communities, reaching 39% in North Lawndale compared to 24% in
TABLE 3-7 Selected Findings on Chronic Health Conditions

Humboldt North Norwood South

Chronic Health Conditions Park (%) Lawndale (%) Park (%) Roseland (%) Lawndale (%) West Town (%) Comparison (%)

High blood pressure 35 41 26 39 17 28 23

Diabetes 16 10 4 12 6 14 7
Obesity 36 41 20 38 37 31 22
Pediatric obesity 48 46 12 56 34 42 17a
Depression 21 15 9 13 21 23 —
Screened depression 20 17 6 19 20 13 16b
Asthma 18 18 13 14 1 19 11
Pediatric asthma 17 16 9 15 6 20 12c
Pediatric screened asthma 11 7 6 8 6 8 —

Source : Sinai’s Improving Community Health Survey, 2002–2003.

Notes: Data are weighted and age adjusted to the 2000 Standard Population. Comparison data are age-adjusted from Chicago BRFSS 2002 (Shah, Whitman,
and Silva, 2006), except when noted.
a
Pediatric obesity comparison data from U.S. NHANES 2003–2004 obesity; data for children ages 2–5 (13.9%) and 6–11 (18.9%).
b
Screened depression comparison data is the lifetime prevalence of major depressive disorder from National Comorbidity Study, 2002.
c
Pediatric asthma data for children age 0-12 years for physician diagnosed asthma. Comparison data from National Health Interview Survey, 1998.
 Sinai’s Improving Community Health Survey 55

Chicago ( p < 0.001; Table 3-8). The extraordinary rate of smoking in this
Black community is comparable to smoking rates from the early 1970s, before
the Surgeon General’s report on the dangers of smoking (Satcher, 2000). The
Sinai Survey also asked about smoking habits and cessation efforts, which
indicated that many current smokers had recently tried to quit or would like
to quit in the near future. These data were used to obtain a grant from the
Illinois Department of Public Health to address disproportionately high rates
of smoking in the North Lawndale community compared to Chicago overall
and other community areas surveyed. Chapter 7 presents these Sinai Survey
results and details how these local data were used to design a culturally spe-
cific, community-based smoking cessation intervention.
In addition, there were several questions related to HIV testing and attitudes
toward safe sex and injection drug use. The proportion of residents in North
Lawndale ages 18 to 64 years who were ever tested for HIV was significantly
higher than every other community ( p < 0.05). This community also had the
highest AIDS incidence rate. Yet, for South Lawndale, a neighboring commu-
nity area where AIDS incidence rate is moderately high, the HIV testing rate
was quite low. Results also showed that proportion recently tested for HIV (in
the last 12 months) was three times higher North Lawndale, Roseland, and
Humboldt Park than those recently tested nationally (Table 3-8).
In general, residents in the surveyed communities favored needle exchange
programs, providing HIV information in high schools and elementary
schools and distributing condoms in high schools. Attitudes were less favor-
able regarding pharmacies selling clean needles and condom distribution in
elementary schools. These survey findings have profound implications for
community-based HIV prevention strategies and for nationally designed pro-
grams often implemented at the local level (using federal funding), which do
not support needle exchange programs and condom distribution in schools
(Allgood et al., 2009).
Dietary habits and nutrition are important risk factors, but accurately
measuring these topics proved challenging. Results based on standardized
questions on consumption of daily fruits and vegetables from national sur-
veys were inconsistent, suggesting that respondents may have interpreted
questions differently (data not shown, Shah and Whitman, 2005). In some
instances, responses to questions that were suggested by the SDC were more
informative. For example, as many as 40% of adults in the non-White com-
munities reported that they did not understand nutritional guidelines and that
nutritious foods were too costly compared to only 10% to 13% in Norwood
Park (data not shown). Although these are not common questions, the com-
munity representatives of the SDC thought it would be relevant to shaping
new educational programs and advocating for access to cheaper healthy food
options in the community.
TABLE 3-8 Selected Findings on Health Risk Factors

Humboldt North Norwood South

Health behaviors Park (%) Lawndale (%) Park (%) Roseland (%) Lawndale (%) West Town (%) Comparison (%)

Current smokers 35 39 18 33 20 32 24a

Ever HIV-tested 60 77 50 68 41 65 44b
HIV-tested in last 29 38 11 37 11 22 12b
12 months
Favor distributing
HIV information
In elementary 90 91 85 92 91 94 —
schools
In high schools 95 97 98 97 96 100 —
Favor condom
distribution
In elementary 55 53 22 47 66 53 —
schools
In high schools 90 90 74 88 88 93 —
Favor needle 61 59 70 63 62 77 —
exchange
programs
Favor pharmacies
selling
Clean needles 41 37 58 41 39 56 —

Source : Sinai’s Improving Community Health Survey, 2002–2003.

Notes:
Data on current smokers are weighted and age-adjusted to the 2000 Standard Population.
All other data are weighted and only include respondents aged 18–64 because the national comparisons only include this age group.
a
Comparison data from Chicago BRFSS 2002.
b
Comparison data from U.S. BRFSS 2002.
 Sinai’s Improving Community Health Survey 57

Other Survey Topics

The Sinai Survey results presented here are only the tip of the iceberg. Other
health topics examined broader social forces influencing health, such as per-
ceived stress, anger management, and perceived racism, as outlined in Table 3-4.
The survey also included common questions on quality of life and overall
demographics, such as education, occupation, income, acculturation, primary
mode of transportation, and so forth. A comprehensive study of many results
has been published in two Sinai Survey reports (Whitman, Williams, and Shah,
2004, Shah and Whitman, 2005) and several journal articles (Dell et al., 2005;
Shah, Whitman, and Silva, 2006; Margellos-Anast, Shah, and Whitman, 2008;
Whitman et al., 2007; Allgood et al., 2009).

Interpreting Results

It must be emphasized that Sinai Survey results do not reflect the health of
all communities or of all racial and ethnic groups in Chicago. As described
by the sampling design, the results represent the health of the six spe-
cific community areas selected. Because Chicago is uniquely “hyper-
segregated” (Massey and Denton, 1993), results for a given community
area are associated with the predominant racial or ethnic group that resides
there. For example, the insurance rates are quite low among adults in South
Lawndale, who are predominantly Mexican immigrants. These findings
may or may not represent the insurance status of other Mexicans living in
Chicago.
Although this distinction is important, when designing community inter-
ventions, some organizations found that the health of a given community
area may be similar to those in neighboring areas, particularly when the
neighboring two communities shared similar demographic characteristics
(e.g., age, sex, race, and income). For example, the health of adults living
in South Lawndale was used to describe the health of a neighboring area,
Back of the Yards, and the health of adults living in North Lawndale was
assumed to be similar to that of East and West Garfield Park because of their
similar demographic profiles. Thus, the Sinai Survey results have often been
used by organizations located in neighboring areas of the targeted surveyed
communities.
The Sinai Survey is unique because it measures important disparities in
health and health care. It quantified the magnitude of several health problems
and identified associated risk factors. Specifically, tabulated responses to sev-
eral questions were substantially higher than national and city level compari-
son data, revealing health concerns that were never before known. In addition,
because of the manner in which the Sinai Survey was developed, its questions
58 IMPORTANCE OF LOCAL DATA

are culturally sensitive to social norms, and its outcomes are most relevant
and meaningful to shaping effective community interventions.

Impact of the Sinai Survey

Seven years after receiving the original Robert Wood Johnson Foundation
award in 2002, no one could have predicted the substantial impact of the
Sinai Survey. It has led to notable transformation in the way health data are
measured, tabulated, and utilized by community organizations, foundations,
public health providers, health-care facilities, and academic institutions in
Chicago. The overwhelming evidence pointed to significant disparities in
health based on socio-economic status, place of residence, and race and eth-
nicity. Although such findings may have been suspected, the Sinai Survey
made it local and personal. As a result, community and public health lead-
ers often mobilized to take action and formulated key recommendations on
how to address many specific inequalities in health. This proactive response
generated a “buzz” in the community that captured the attention of commu-
nity leaders and media, primed funders to direct resources based on need,
and led to meaningful new interventions for improved health in some of
Chicago’s most underserved communities.
This process of translating local data into meaningful local action, in gen-
eral, followed a specific pattern of release. Once the data were collected,
the health findings were analyzed and compared to national and city level
estimates. Second, data were published in community reports or peer-review
journals. And third, they were shared with the public by hosting a health
forum or press conference to report back on results, agree on interpretation
of results, and discuss next steps. The following pages describe how these
steps were taken to disseminate and share the Sinai Survey results with those
who needed to know and respond.

Dissemination

Dissemination activities of the data from the survey were supported by three
annual grants awarded by a local foundation, The Chicago Community Trust,
between 2004 and 2007. During these years, SUHI staff responded to numer-
ous data inquiries, made many presentations locally and nationally, and pub-
lished several articles and reports (Sinai Urban Health Institute, 2009).
The first published release of the Sinai Survey data was in January 2004
in a report entitled, Sinai’s Improving Community Health Survey, Report 1
(Whitman, Williams, and Shah, 2004). This report described 10 key findings
from the survey and revealed extraordinary disparities in health between the
 Sinai’s Improving Community Health Survey 59

six communities and compared to averages for Chicago or the United States.
It was released at a press conference, organized by the Sinai Health System,
and was featured in several headlines in local newspapers (Fig. 3-3) and on
television and radio. Examples of a few headlines from prominent newspa-
pers are: “Study finds wide health care gap: Minority, poor neighborhoods
lag in treatment” from the Chicago Tribune, January 8, 2004; “Puerto Rican,
black child asthma soaring: Racial, economic chasm in Chicago’s health seen
in study” from the Chicago Sun Times, January 8, 2004; and “Disparidaddes
médicas entre comunidades: Un studio muestra que los niños puertorriqueños

Figure 3-3 One Example of Media Coverage from the Initial Release of Sinai’s
Improving Community Health Survey Results, Chicago Sun-Times, Jan 4, 2004.
60 IMPORTANCE OF LOCAL DATA

presentan las tasas más altas de asma en toda el área de Chicago” from hola-
Hoy.com, viernes 9 de enero de 2004. Although the Sinai Survey report was
the culmination of the original Robert Wood Johnson Foundation award, it
was just the beginning of how the Sinai Survey changed the way resources
for health interventions are allocated in the city of Chicago.
Following the release of initial findings, there were many requests for
additional data analyses, and SUHI became a clearing house for communi-
ty-level survey data in Chicago. Inquiries came from community organiza-
tions, health-care providers, researchers, and even the Chicago Department
of Public Health in pursuit of grants or in planning new health initiatives. In
some instances, the entire dataset was shared. Professors from the University
of Illinois at the Chicago School of Public Health used the dataset to teach
community health research, and doctoral students requested use of the dataset
for their dissertations. Extensive analyses of the data ensued on such diverse
issues as barriers to accessing healthy food or use of needle exchange pro-
grams in communities. Along with these analyses, students and researchers
offered recommendations for improved programs to the health department,
policymakers, and foundations. In other instances, academic researchers
used the survey data to work collaboratively with communities in develop-
ing culturally appropriate health initiatives facing vulnerable communities.
Box 3-1 portrays an example of how one researcher from the University of

BOX 3-1 Theory Into Practice: Research Helps Latino Community

Help Itself

The partnership between the School of Public Health and Chicago’s

Humboldt Park community illustrates what is possible when academic
theory meets real life. The result is an innovative research approach that
helps create culturally sensitive, mutually beneficial programs.
In 2004, a Sinai Health Systems report brought to light health dispari-
ties in Chicago and the need for preventive community-based health
interventions. Armed with these findings and grants from the Centers
for Disease Control and Prevention, UIC’s School of Public Health part-
nered with Humboldt Park community representatives to explore how
they deploy resources to solve problems like psychological distress, poor
educational and economic resources, prevalence of asthma and diabetes,
HIV/AIDS and housing shortages.
Researcher Michele Kelley is the driving force behind the collaborative
relationship between UIC and the Humboldt Park community, located
(continued )
BOX 3-1 (continued)

on Chicago’s West Side. “Sinai’s report was extremely valuable to us,”

said Kelley. “We are trying to build on the momentum of that report and
fill in some of the gaps, especially on adolescent health.”
The neighborhood is interested in improving its ability to heal itself. By
engaging with the community, Kelley helps its members identify, think
through and answer their own health questions.
“We can’t assume we will go into a community and create change,”
said Kelley. “The community has locally relevant insight and knowledge,
and it’s my job to try to understand it so that I don’t inadvertently get in
the way of the learning process we’re sharing with each other. Our col-
laboration advances public health science, and we are learning how to be
more effective in reducing and eliminating ethnic disparities in health.”
Kelley currently is working on plans for the community’s first-ever sur-
vey on adolescent health. The survey will identify critical health issues for
youth as well as factors that may hold them back from becoming healthy
adults.
Working with teens from Café Teatro Batey Urbano, a youth-driven
alternative cultural arts and community action organization, Kelley will
show them how to conduct their own research and analyze results. Youth
in the community have first-hand knowledge about their peers and can
provide advice on the survey while helping Kelley determine strategies to
engage the interest of families to increase the response rate.
Ultimately the group will convene a youth summit to discuss their find-
ings and develop a health action plan. Kelley foresees the group tapping
into Batey Urbano’s new radio station as a way to disseminate health
information to local teens. By working with the community to conduct
their own research, she is one step closer to accomplishing her goal.
José López, a leader in the community and executive director of the
Puerto Rican Cultural Center, has watched the partnership with the
School of Public Health encourage community growth.
“The university does not come into the community and impose pre-
cepts and concepts but works with us to find ways to deal with health
issues,” said López. “It not only has created consciousness, but has
brought the concept of participatory research to us. It’s a process of
continuous dialogue.”
Source: Reprinted from University of Illinois at Chicago School of Public
Health Newsroom. Theory into practice: Research helps Latino community
help itself. Online. Available: http://www.uic.edu/sph/news/news_122.
html. Accessed: December 17, 2009.

61
62 IMPORTANCE OF LOCAL DATA

Illinois did exactly this. She partnered with community groups in Humboldt
Park and began to make sustainable change in social norms toward improved
health.
There were also requests for information on the Sinai Survey data collec-
tion procedures. For example, the survey instrument and methodology report
were shared with several organizations beyond Chicago. These included the
Winnebago County Department of Public Health in Illinois, the Los Angeles
County Department of Public Health, the Philadelphia Health Management
Corporation, and the Morehouse School of Medicine, to name a few. The
Sinai Survey became a model for gathering community level data and exam-
ining health disparities locally. Between 2004 and 2007, there were over 200
data inquires, including 30 signed data-sharing agreements and 12 doctoral
students who completed their dissertations with Sinai Survey data. A detailed
list of these are available in donor reports online (Shah and Whitman, 2005;
Shah and Whitman, 2006; Sinai Urban Health Institute, 2009), and this pro-
cess of sharing the Sinai Survey continues today.
Furthermore, nearly 200 presentations were made between 2002 and 2008
at professional conferences, academic centers, community organizations,
foundations, and government agencies locally and nationally. Presentations
were made at the National HIV Prevention Conference, Community-Campus
Partnerships, the American Public Health Association, the International
Society for Urban Health, and so forth. Invitations to present at grand rounds
and luncheon discussions were common, and it was rare that a meeting on
health disparities in Chicago did not mention the Sinai Survey results. In
fact, the findings were featured at and the impetus for a city-wide summit on
health disparities in December 2004, sponsored by the Institute of Medicine
of the National Academy of Sciences, the Institute of Medicine of Chicago
and others. Data findings were shared at numerous research institutions
and prestigious academic health centers outside of Chicago, including the
Cleveland Clinic in April 2004, because of the implications to address dis-
parities in other urban settings. Additionally, in September 2007, the Sinai
Survey served as a model for the Delaware State Department of Health in
guiding their efforts to conduct community health surveys and identify the
health needs of some of their most vulnerable populations.
There are also several reports and publications describing the Sinai
Survey data. To date, there are two Sinai Survey Reports, the first (as men-
tioned earlier) was released in January 2004 (Whitman, Williams, and Shah,
2004), and the second, which built upon the first, highlighted 10 new find-
ings and was released in September 2005 (Shah and Whitman, 2005). It
included descriptions of topics such as arthritis, hypertension, cancer screen-
ing, and physical activity. There are also six journal publications (Dell et al.,
2005; Shah, Whitman, and Silva, 2006; Whitman, Silva, and Shah, 2006;
 Sinai’s Improving Community Health Survey 63

Whitman et al., 2007; Margellos-Anast, Shah, and Whitman, 2008; Allgood

et al., 2009). All published materials are currently available online (Sinai
Urban Health Institute, 2009).

Reactions
Reactions to the Sinai Survey dissemination activities were widespread and
far-reaching. At the community level, several organizations responded by
coming together and prioritizing health concerns. For example, the Puerto
Rican Cultural Center in Humboldt Park immediately convened a Health
Summit in March 2005 and invited community residents, social services
providers, and policymakers to learn about the data. They organized as part
of the Greater Humboldt Park Community of Wellness and focused on issues
of most relevance to their community, ranging from depression to diabetes.
They decided what was most pressing based on the data and this empowered
them to drive some of the health initiatives described in Section 3.
The Healthy Schools Campaign, a not-for-profit organization that advo-
cates for a healthy school environment, also benefited from the Sinai Survey
data. They used pediatric asthma and obesity findings to support their suc-
cessful application for a $1 million grant from the National Institutes of
Health. In addition, many parents of school children did not believe that
asthma and obesity were issues facing their children. With the Sinai Survey
data, the Healthy Schools Campaign was able to demonstrate the severity
of asthma and obesity by using community-based participatory practices
and thus engaged many parents in seeking and implementing effective solu-
tions. This work was instrumental to examining the school meal program
and physical education classes through a social justice lens. As a result of
their initial success in two Latino Schools, they created the Parents United
for Healthy Schools/Padres Unidos para Escuelas Saludables Coalition and
have expanded to more than 40 schools in other racial and ethnic minor-
ity communities of Chicago. Other community groups, such as Centro Sin
Fronteras, the Resurrection Project, and the Little Village Development
Corporation (now known as En Lace), to name a few, likewise sought data to
obtain funds for new initiatives in the communities they served.
Reactions by the donor community were also significant. The Sinai
Survey results related to arthritis, activity limitations, and obesity were
shared with the Arthritis Foundation of Chicago. Because the prevalence
of arthritis in North Lawndale was higher than in other communities, the
Foundation adopted this community and brought one of its free physical
activity programs for adults with arthritis to this neighborhood. In addi-
tion, when invited to share findings about pediatric obesity at a Consortium
to Lower Obesity in Chicago’s Children (CLOCC) quarterly meeting, the
64 IMPORTANCE OF LOCAL DATA

executive director of the Otho A. Sprague Foundation was so appalled by

the disproportionate burden of obesity in some communities that he imme-
diately sought local community groups eager to address obesity, leading
to the Humboldt Park obesity initiative (described in Chapter 8 of this
book). Finally, as noted previously, local foundations reported that many
of the proposals they received referenced results from the Sinai Survey
to demonstrate community health needs, target interventions, and evaluate
progress.
Sinai Survey results received considerable media attention as well. Numerous
stories and articles appeared on local news stations and in local newspapers
following the release of the initial report, Sinai’s Improving Community Health
Survey Report 1 (Whitman, Williams, and Shah, 2004) in January 2004
(Fig. 3-3). In fact, substantial media attention materialized after almost every
published article or community event. These stories helped galvanize commu-
nities and researchers to identify solutions, respond collectively, and demand
that resources be distributed to these communities in need. The media helped
make the data even more visible and brought it to the attention of policymak-
ers, community leaders, and others with influence to take action.
There were also examples of how the Sinai Survey data were used to
improve public health policy. For example, advocates used the data to urge
the state legislature to establish mechanisms for BMI surveillance among
children in public schools and to develop the Illinois Childhood Obesity
Prevention Consensus Agenda, which resulted in the passage of four public
acts (CLOCC, 2009). Sinai Survey data were also used by CLOCC and the
Chicago Department of Public Health to form the City of Chicago’s Inter-
Departmental Task Force on Childhood Obesity, which is comprised of eight
city departments focusing on policy and program development to prevent
childhood obesity (Becker, Longjohn, and Christoffel, 2008). In addition,
following release of the smoking data publication, a press conference was
held on “World No Tobacco Day” in 2005 by the Chicago Chapter of the
American Lung Association. This event helped activists who were working
to make public spaces smoke-free in the city. Smoke-free legislation passed
in Chicago in 2007 and a year later in the State of Illinois.
Overall, the Sinai Survey results brought to light that in Chicago, where
one lives, how much money one has, and the color of one’s skin determines
how healthy one is. Dissemination of such disparities in health first led to
outrage, as highlighted by the media. Ultimately, this information moti-
vated community stakeholders, researchers, and political leaders to organize
and respond with targeted, community-driven solutions. The most effective
community responses resulted when evidence of disparities from the Sinai
Survey were linked to solutions or recommendations for improved health.
The results then resonated with communities, engaged stakeholders (such as
 Sinai’s Improving Community Health Survey 65

politicians and funders), and enabled them all to design new interventions
and implement change to combat disparities as detailed in later chapters.

Lessons Learned

The successes and challenges faced in translating data into meaningful pro-
grams have provided many lessons to those affiliated with the survey. The
experience of preparing a community to respond to findings from the Sinai
Survey varied depending on its readiness. New initiatives emerged in some
communities because of their ability to engage with political leaders and to be
organized and advocate collectively with one voice. For example, in Humboldt
Park, the Community of Wellness, the Puerto Rican Cultural Center and other
stakeholders formed a persuasive example of such an organization and were
thus critical to driving change in their communities (see Chapter 12).
Several presentations were made in all of the surveyed communities.
Yet, for some, few new interventions (to our knowledge) were developed or
resources obtained. The exact reasons for this are unclear but may result
from a lack of key local partners or the infrastructure for community groups
to organize with a focus on a specific health priority. Although individual
leaders, such as community organization executive directors and/or hospital
administrators, expressed interest in the Sinai Survey findings, there was a
lack of any collective reaction to the dissemination activities. In evaluating
this effort, it appeared that competing priorities may have limited substantial
health initiatives in these communities.
Although data are essential, without organizing the community and the
political will to support it, the ability to make change is challenging. For
example, because of the strong community organizations and the support
of local politicians, greater funding and resources came to Humboldt Park.
Successful interventions ranged from a newly formed academic–community
collaborative with federal funding to support a major diabetes initiative to an
individual commitment to leading a walking club and aerobic sessions at the
local park fieldhouse (see Chapter 10). These actions, big or small, were stim-
ulated by Sinai Survey results and vivified by the community’s pre-existing
infrastructure and organization.

Conclusions

The Sinai Survey has begun to achieve its goal of utilizing data as a cat-
alyst for change by gathering evidence to redirect resources to communi-
ties most in need. The survey and its development has been an important
example of how meaningful data can be effectively gathered with
66 IMPORTANCE OF LOCAL DATA

community involvement and support. Findings revealed substantial varia-

tions in health outcomes that were never before known. It also stimulated
many groups to design new interventions and bring more than $15 million
in resources to underserved communities in Chicago. Dissemination of
and reaction to the Sinai Survey results were extraordinary and critical
to translating data into action. The net effect has been improved health
of communities at multiple levels, as illustrated in Section 3 of this book.
It is hoped that the Sinai Survey and this story will continue to serve as
a national inspiration for other community hospitals, community groups,
and public health practitioners for driving change toward greater health
equity in the future.

Acknowledgments

There are many individuals and community organizations that ought to be

acknowledged for the development of the Sinai Survey and its success. To
begin, we thank The Robert Wood Johnson Foundation and The Chicago
Community Trust for their shared vision and generous financial support
of this work. The authors acknowledge all those who designed the sur-
vey, the communities who welcomed us (and even those who criticized
us), and the valiant people who have struggled for many years to improve
their health, thus inspiring us to want to help them do that. Specifically,
we are indebted to the community representatives of the Survey Design
Committee and their affiliated community organizations (as listed in Table
3-3) for the many hours they spent with us and their invaluable input. In
addition, we recognize the in-kind support from members of the Sinai
Health System who served on the Survey Design Committee: Linda Miller,
Ed Rafalski, Maurice Schwartz, Jesse Green, and Xochitl Salvador. We
especially thank Cynthia Williams, co-principal investigator on Sinai’s
Improving Community Health Survey project, without whom the Survey
Design Committee could not have been established and maintained.
Authors are grateful to the Survey Research Laboratory at the University
of Illinois. In particular, we thank Timothy Johnson and Ingrid Graf, along
with the dedication and persistence with which the interviewers and field
staff implemented the survey. Authors also thank the committed staff of
the Sinai Urban Health Institute whose collaborative spirit made this pro-
ject a success: Jade L. Dell, Jocelyn Hirschman, Helen Margellos-Anast,
and Abigail Silva. Finally, and most importantly, authors acknowledge all
of the community respondents, who completed the survey and made the
Sinai Survey possible.
 Sinai’s Improving Community Health Survey 67

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4
THE JEWISH COMMUNITY
HEALTH SURVEY OF CHICAGO:
METHODOLOGY AND KEY FINDINGS

Maureen R. Benjamins

Introduction

Motivated by the findings of the Sinai Improving Community Health Survey

described in the Chapter 3 (Shah and Whitman, 2010), Jewish leaders within
Chicago envisioned a similar survey for their own community. Just as that
survey revealed substantial differences among groups, these leaders recog-
nized that certain health issues may also be more (or less) prevalent within
the Jewish community. They understood that collecting this type of detailed
health information could lead to more successful interventions and policy
changes and that the findings would allow the agencies serving this popu-
lation to more accurately tailor their services. Thus inspired, they began to
mobilize an effort to collect similar data in two of the most densely popu-
lated Jewish neighborhoods in the city. This is how Chicago became one of
the first (if not the first) cities to implement a population-based health survey
specifically for a Jewish community.

Lack of Existing Health Data for Jewish Individuals

Valuable information about the Jewish population in America comes from

the National Jewish Population Survey (NJPS), from regional Jewish data
surveys such as the Metropolitan Chicago Jewish Population Study (MCJPS),

69
70 IMPORTANCE OF LOCAL DATA

and from a variety of other community-level data sets. However, these

studies are not designed to measure components of individual health and
well-being, such as physical and mental health status and access to health
care. In addition, obtaining information about the Jewish population from
more general health data sources is also difficult because most do not include
information on religious affiliation. Moreover, Jewish populations are gen-
erally widely dispersed and are often minorities even in the most concen-
trated of communities. Thus, small sample sizes render national, state, and
even city health surveys insufficient for deriving accurate estimates for these
communities (Fielding and Frieden, 2004).

Importance of Collecting Health Data for Jewish Individuals

Collecting health data is important for ethnic minority groups such as

Jews because they may have significantly different health profiles than
other individuals. This is because both the cultural norms shared by those
with a Jewish background and the religious beliefs held by many Jews
may influence health-related behaviors and outcomes (Jacobs and Giarelli,
2001). Orthodox Jews, in particular, live according to a distinct set of
rules that often impact health-related behaviors, such as dietary choices.
In addition, Jewish children often attend private day schools, which differ
from public schools in the foods they offer, the health-related information
provided in their curricula, and the presence of physical education and
extracurricular activities. Therefore, health risk factors and outcomes for
both adults and children could be expected to differ from the general pop-
ulation. This is supported by diverse findings from previous research, such
as studies that show that Jews have higher rates of depression (Kennedy
et al., 1996; Levav et al., 1997) and breast cancer (Egan et al., 1996) but
lower rates of other health problems, such as alcoholism (Levav et al.,
1997) and cervical and penile cancer (for review, see Koenig, McCullough,
and Larson, 2001).

Partnerships and Funding

The leadership of this initiative came from the Jewish Federation of
Metropolitan Chicago. The Jewish Federation is the largest not-for-profit social
welfare institution in Illinois and the hub of Chicago’s Jewish community. In
addition to being the first to initiate an adapted use of the Sinai survey, the
Jewish Federation accomplished the essential feat of getting the data collec-
tion effort funded. Specifically, the survey was enabled by generous grants
provided through two local sources, the Polk Bros. Foundation and the Jewish
Federation’s Fund for Innovation in Health (supported by the Michael Reese
 Jewish Community Health Survey of Chicago 71

Health Trust). Additional funding for the second phase of the project (data
analysis) came from the Fund for Innovation in Health, the Irvin and Ruth
Swartzberg Foundation, and the Fel-Pro Mecklenberger Supporting Fund.
Once funding was secured, an additional partner was added to the group. As
with the Sinai Improving Community Health Survey (described in Chapter 3;
Shah and Whitman, 2010), the logistics of data collection were handled by the
University of Illinois at Chicago’s Survey Research Laboratory. Specifically,
this organization was responsible for the survey design, sampling, and inter-
views. Work done by the Sinai Urban Health Institute during the data collec-
tion phase was performed as “in-kind” contributions. More details about each
step of the data collection process are provided below.

Methodology

Questionnaire Development
The development of the survey questionnaire began with a series of meetings
held with the stakeholders, community leaders, and agency professionals. This
community group was first introduced to the Sinai Improving Community
Health Survey (Sinai Survey) instrument and then charged with determining
if any questions were irrelevant and which (if any) additional topics should
be covered. In the end, approximately 50 additional questions were included
to focus on health and religious issues important to the Jewish population.
For example, topics such as genetic disorders, disability, and participation in
Jewish religious activities were covered. To make room, questions deemed
less relevant to the Jewish population or less of a priority were removed from
the original survey. Removed questions included those on Hispanic ethnicity,
STD testing, needle exchange programs, presence of a working telephone in
the home, and selected discrimination measures, for example. As with the
original Sinai Survey, the questions used were taken verbatim from national
and state surveys whenever possible so that comparison data would be avail-
able. In total, the Jewish survey included 475 adult and 100 child questions.

Sampling

The group of community leaders and agency professionals was also in charge
of selecting the target area to be surveyed. They chose a community made
up of two contiguous neighborhoods: West Rogers Park and Peterson Park.
This community on the north side of Chicago was selected because of the
high concentration of Jewish individuals residing there and a presumed need
for additional services and resources.
72 IMPORTANCE OF LOCAL DATA

A three-stage sampling design was employed to get a representative sam-

ple from the designated community. In the first stage, 45 census blocks
were randomly selected from the two geographic areas. After the blocks
were selected, interviewers recorded each housing unit on each block. This
resulted in 1,719 households. In the second stage, all of the households from
each of the census blocks were included. The blocks were assembled into
seven groups, to be selected at random over time as needed to reach the tar-
get sample size. In the third stage, one eligible respondent was selected at
random from each household.
The inclusion criteria for adults specified that they must identify them-
selves as Jewish, be at least 18 years of age, and live in the designated study
area. Once the adult interview ended, respondents were asked if there were
any children 12 years of age or younger in the household. If so, one of the
children was randomly selected and the adult with the most knowledge about
that child’s health was interviewed. Note that this may not be the same as the
original adult respondent.

Survey Administration

The data for this study were collected between August 2003 and January
2004 by researchers from UIC’s Survey Research Laboratory. Interviews
were done face-to-face using computer-assisted technology. In all, 201 Jewish
adults and 57 caregivers of Jewish children were interviewed in their homes.
The adult interviews took 1 hour, on average, and the child interview gener-
ally took 15 minutes. As a token of appreciation, respondents were given $20
for an adult interview and $10 for a child interview.

Response Rates
Interviews were attempted at 1,124 households. Of these, 286 were nonresi-
dential, unable to be contacted, or refused to participate. An additional 529
were ineligible. Three measures summarizing the rates of responses and
refusals are described here. The response rate measures the proportion of
eligible respondents who completed an interview. To calculate this, the num-
ber of eligible people who completed the interview is divided by the sum
of all of those in the numerator, plus refusals, noncontact of eligibles, and
a proportion of households whose eligibility status is unknown (AAPOR,
2000). The response rate for this survey using this conservative calculation
was 50.9%.
Another helpful measure is the refusal rate. This measures the proportion of
eligible respondents who either refused to complete the interview or who broke
off the interview. The refusal rate for the current survey was 16.6%. Finally,
 Jewish Community Health Survey of Chicago 73

the cooperation rate is used to determine how many of the eligible individu-
als completed an interview. Here, 75.2% cooperated. This cooperation rate is
much higher than other national surveys. For example, the response rate for
the 2000 National Jewish Population Survey was 28% and the cooperation rate
was 40% (United Jewish Communities Report, 2004).
The high cooperation rate for this survey may at least partially result
from the efforts undertaken to make the community aware of the impor-
tance of the survey. For example, before respondents were approached by
the interviewers, they first received a letter explaining the survey and the
importance of this type of data for the community. These letters, which
were printed on letterhead from the Jewish Community Council of West
Rogers Park, were signed by leaders of the community, including the chief
rabbinical judge of the Chicago Rabbinical Council (Fig. 4-1). In addition,
the interviewers underwent rigorous training, both in general interviewing
skills, as well as in relevant aspects of the Jewish culture. Care was taken
to avoid conflicts, such as asking for interviews on the Sabbath or during
Rosh Hashanah.

Weighting
The adult frequencies are weighted to make the sampled population resem-
ble the demographic characteristics of the population surveyed. In other
words, the weight accounts for various differences between the sample and
the population, as well as differences in the selection probabilities. The
weight is equal to the inverse of the probability of selection. The child data
is not weighted because the sample was too small.

Results

The demographic and social make-up of this Jewish community is discussed

first. Whenever possible, results will be compared to other populations.
Specifically, comparable data from the National Jewish Population Survey
(NJPS), the Chicago Behavior Risk Factor Surveillance System (BRFSS),
the U.S. Census, and other national surveys are provided (when available).
Following this, a brief overview of the primary health-related findings from
this survey are provided, including health-care access and utilization, dis-
ease prevalence, mental health status, and health behaviors. Again, com-
parison data is given when available. Several specific areas of concern
are highlighted (Table 4-1). In addition, information about three vulnera-
ble populations within this community is given. All findings in this section
reflect the adult sample unless otherwise noted.
74 IMPORTANCE OF LOCAL DATA

Figure 4-1 Letter From Local Politicians and Religious Leaders to Encourage
Participation in the Jewish Community Health Survey

Sample Characteristics

Demographic Characteristics
The sociodemographic characteristics of the community are shown in
Table 4-2 and are briefly summarized here. The gender distribution shows
that the population represented by the current survey included slightly more
females than males (52% vs. 48%). These numbers are similar to U.S. Census
estimates, whereas in the national Jewish population there were even more
 Jewish Community Health Survey of Chicago 75

TABLE 4-1 Selected Health Topic Results for the Jewish Community Health
Survey
Topic 1: Health Status. The majority of adults rated their own health as good or
better, although approximately half had at least one of the most common
chronic conditions. The most prevalent chronic condition was high blood
pressure, which was reported by more than one-fourth of adults.
Topic 2: Health Behaviors. Levels of physical activity were slightly higher than
city and national estimates but still below recommended amounts. Relative to
other groups, levels of smoking, drinking, and marijuana use were low.
Topic 3: Health-Care Access and Utilization. Most adults had health insurance and
a usual place to go for health care; they also received routine check-ups and
recommended preventive services. However, almost one-fourth of the sample
reported being unable to obtain certain needed medical services.
Topic 4: Overweight and Obese Adults. Over half of Jewish adults were overweight,
including 25% who were obese.
Topic 5: Overweight and Obese Children. Like adults, the majority of children 2 to
12 years old were overweight (54%). This includes 26% of all children who
qualified as obese.
Topic 6: Depression. More than one-fifth of individuals reported having been
diagnosed with depression at some point in their life. In addition, 17% were
screened as currently depressed using the CES-D scale of depressive symptoms.
Topic 7: Disability. Almost one-fourth of the adults in this community lived with
someone with some type of a disability. Furthermore, nearly half of the disabled
individuals reported special care needs such as therapists or mobility devices.
Topic 8: Experiences with Violence. One-quarter of adults had witnessed domestic
violence and nearly one-third reported that a member of their household had
been a victim of physical, verbal, or sexual violence.
Topic 9: Genetic Testing. Within these Jewish neighborhoods, 58% of adults had
never been screened for genetic disorders. Of these, many reported not being
aware of the tests or did not consider them necessary.

females. Of the individuals in this sample, 20% were born outside of the
United States. The majority of these were born in the former Soviet Union or
Israel. This percent of immigrants is almost double the overall U.S. estimate.
The age distributions (not displayed) show that this Jewish community tends
to be older than the general U.S. adult population. It is important to note that
approximately 20% of Jewish adults living here were older than 65 years
of age. This is greater than the overall national estimates (17%) but slightly
lower than national Jewish estimates (24%). The mean age of the adult pop-
ulation in this Jewish community was 49.3 years.

Socio-Economic Status
Individuals in this community are highly educated. Notably, two-thirds
had a college degree or higher, and nearly one-third had a graduate degree
(Table 4-2). This exceeds the levels of education seen in the national NJPS
76 IMPORTANCE OF LOCAL DATA

TABLE 4-2 Comparison of Selected Demographic and Socioeconomic

Characteristics

WRP (%) MCJPS (%) NJPS (%) Chicagoa (%) United Statesa
(%)

Gender
Female 52 52 56 51 51
Male 48 48 44 49 49
Nativity
U.S.-born 80 87 85 78 89
Foreign-born 20 13 15 22 11
Marital status
Married 73 57 57 40 54
Divorced/ 7 9 10 12 12
separated
Widowed 7 11 8 7 7
Never married 13 23 25 41 27
Education
Some college 35 31 45 74 75
or less
College 38 41 30 16 16
degree
Graduate 27 29 25 10 9
degree
Annual Household
Income
Less than 14b 14 22 33 29
$25,000
$25,000– 38b 44 44 47 48
$74,999
More than 47b 43 34 20 23
$75,000
Employment
Status
Employed 60 64 61 61 65

Sources: Jewish Community Health Survey, 2003; Metropolitan Chicago Jewish Population Study
(MCJPS), 2000–2001; National Jewish Population Survey (NJPS), 2000–2001; U.S. Census, 2000
(for Chicago and U.S. data).
Note: Percentages may not add to 100 because of rounding.
a
Age ranges vary slightly. Specifically, education is asked of adults ≥25 and employment status
for those ≥16. All others reflect adults ≥18.
b
Income categories differ for the current survey. They are as follows: Less than $30,000,
$30,000–$69,999, and More than $70,000.

(slightly) and in the United States and Chicago (greatly). For example, the
percentage of individuals in this community with a graduate degree is three
times higher than the national average. Like education, individuals in the
current survey also had relatively high incomes. For example, nearly half of
 Jewish Community Health Survey of Chicago 77

the sample reported a household income of more than $70,000 per year. This
is substantially higher than levels in the national Jewish estimates, Chicago,
and the U.S. However, it is important to consider differences in average fam-
ily size. As discussed below, families in this Chicago Jewish community
tend to be larger, and thus, the “per capita” income levels would be lower. In
other words, the financial situation of this population may not be as favorable
as the income data suggests. Finally, 60% of the individuals in this sample
were currently employed. This estimate is very similar to that of the NJPS
and Chicago (both at 61%) and just slightly below national levels.

Family Structure
In this population, nearly three-quarters of the individuals were mar-
ried (Table 4-2). Compared to national Jewish estimates and the U.S. popu-
lation, Jews in the current survey were much more likely to be married
and approximately half as likely to be single/never married. Only 10% of
individuals in this community lived alone (data not shown). This estimate
is much lower than those for the national Jewish population or the U.S.
population and may speak to the importance placed on family within this
culture. At the other end of the spectrum, the survey found that more than
one-third of individuals lived in a household with five or more total occu-
pants. This is not surprising as individuals in the current survey also tended
to have more children.

Religious Characteristics
Adults living in this Jewish community showed high levels of religious
involvement, even compared to Jewish individuals nationally (Table 4-3). For
example, more than 80% percent of individuals in the current study belonged
to a synagogue compared to 46% in the NJPS. Of the synagogue members,
the majority of individuals (89%) belonged to Orthodox traditions. This is
in sharp contrast to national estimates, which show more balanced member-
ships in Orthodox, Conservative, and Reform affiliations. Other measures
of Jewish connections include keeping a Kosher home and marrying within
the faith. In the current sample, the majority reported keeping a Kosher
home (79%) and nearly all of the married individuals had Jewish spouses.
Markers of other issues specific to Jewish communities showed that more
than one-fourth of the respondents reported that they had received services
from Jewish-affiliated agencies in the past year. In addition, one-fourth of
the sample reported that their income was insufficient to meet their religious
obligations. These religious obligations could include belonging to a syna-
gogue, keeping Kosher, belonging to a Jewish Community Center (JCC), or
going to Israel.
78 IMPORTANCE OF LOCAL DATA

TABLE 4-3 Religious Characteristics Among Jewish Adults in West Rogers

Park/Peterson Park, Chicago, and the United States

WRP(%) MCJPS(%) NJPS(%)

Synagogue affiliation
Orthodox or Traditional 72 5 11
Conservative 5 13 15
Reform 3 19 17
Reconstructionist 0 2 1
Other 1 3 2
Not affiliated 19 58 54
Keeps a Kosher home 79 20 21
Jewish spouse (if married) 96 82 69
Received Jewish services in 28 — —
past year
Income insufficient for 25 35 —
religious obligations
Sources: Jewish Community Health Survey, 2003; Metropolitan Chicago Jewish Population
Study (MCJPS), 2000–2001; National Jewish Population Survey (NJPS), 2000–2001.

Health Care Access and Utilization

Access to health-care services, as well as the appropriate use of these ser-
vices, is strongly linked to many health outcomes. Although issues such as a
lack of health insurance and an inability to afford the rising costs of health
care are plaguing the United States as a whole (DeNavas-Walt, Proctor, and
Lee, 2005; Lasser, Himmelstein, Woolhandler, 2006), little is known about
the health care needs of the Jewish population in general. Even less is known
about the needs of Jews at the local level.

Access to Care
The findings showed that almost all adults in this Jewish sample reported
having health insurance, regardless of age (Table 4-4). Notably, almost all
adults younger than 65 years of age in this Jewish sample had private insur-
ance compared to only 70% of adults nationwide. Of older adults, about
half had private insurance (in addition to Medicare), which is slightly below
the national average. The percent of individuals who reported not getting
the services that they needed provides additional insight into how well indi-
viduals can access health care. In this sample, nearly one-quarter of respon-
dents reported not getting some type of health care when they needed it (this
includes medical care, prescription medications, mental health care, dental
care, and eye care). Respondents were asked about this issue in another way
as well. Specifically, they were asked, “Do you feel that your family income
is sufficient or insufficient to meet your current health needs, irrespective of
 Jewish Community Health Survey of Chicago 79

TABLE 4-4 Health-Care Access and Utilization Within a Jewish Community in

Chicago and the U.S. General Population

Jewish Community (%) United States (%)

Health insurance
Any insurance
18–64 years of age 95 81
65 years and older 99 99
Private insurance
18–64 years of age 91 70
65 years and older 48 61
Did not get health care when 23 —
needed
Income insufficient for health- 28 —
care needs
Usual source of care 90 84
Gets routine check-ups 70 65
Visited doctor in the past year 89 68
Visited hospital in the past year 32 —

Sources: Jewish Community Health Survey, 2003; U.S. Data from Current Population Survey,
2003; National Health Interview Survey, 2001; Medical Expenditure Panel Survey, 2002.

health insurance?” In response, 28% reported that their income was insuffi-
cient to meet their health care needs.

Health-Care Utilization
Numerous questions were asked regarding the individuals’ use of vari-
ous health-care services (Table 4-4). To begin, nearly all adults reported
having a “particular clinic, doctor’s office, or health care facility” that
they usually frequented when sick or seeking advice about health. Also
referred to as having a “usual source of care,” this is an important issue
to examine because it is correlates with better health outcomes, greater
use of preventive services, and reduced medical costs, among other things
(De Maesneer et al., 2003; DeVoe et al., 2003; Starfield and Shi, 2004).
Fortunately, almost all adults in this Jewish community reported having a
usual source of care. This estimate was slightly higher than levels seen for
all adults in the United States. Likely facilitated by this, the majority of
adults reported getting regular check-ups with their physician and visiting
a physician in the past year. In addition, nearly one-third visited a hospital
in the past 12 months.
As seen in Table 4-5, individuals in the Jewish Community Health Survey
reported high levels of preventive service utilization for almost all types
of services. For example, most individuals (88%) had their blood pres-
sure screened in the previous year. This is likely to be similar to rates of
80 IMPORTANCE OF LOCAL DATA

TABLE 4-5 Preventive Health-Care Utilization Rates for a Jewish Community

in Chicago, the Overall City of Chicago, and the United States

Jewish
Community (%) Chicago (%) United States (%)

Blood pressure test (all, in 88 — 95a

past year)
Colonoscopy or sigmoidos- 52 46 37
copy (≥50 years, ever)
Blood stool test (all, ever) 51 41 45
Mammogram (females, 80 80 70
≥40 years, in past 2 years)
Pap smear (females, ≥18 89 88 83
years, in past 3 years)
PSA (males, ≥50 years, ever) 36 — 57

Sources: Jewish Community Health Survey, 2003; Chicago data is for Cook County from the
Behavioral Risk Factor Surveillance System, 2002 and 2003; U.S. data is from the Behavioral
Risk Factor Surveillance System, 1999, 2000, 2002; National Health Interview Survey, 1998,
2000, 2003.
Note : aIn past 2 years.

screening in national samples, which here are measured within the previous
2 years. Approximately half of the current sample reported ever having a
colonoscopy (or sigmoidoscopy) and a blood stool test. These numbers are
both slightly higher than local and national averages.
For female services, large percentages of women in the appropriate age
ranges reported regular mammograms and Pap smears (80% and 89%, respec-
tively). The fact that these numbers are both higher than national averages
(Smith, Cokkinides, and Eyre, 2007) is surprising given the cultural barriers
faced by Orthodox women based on guidelines concerning modesty issues
and interactions between adults of opposite genders. Perhaps targeted mes-
sages regarding the higher likelihood of Jewish women to have the gene muta-
tions linked to breast and ovarian cancer (USPSTF, 2009) and to have been
diagnosed with breast cancer (Egan et al., 1996) have motivated women in
this group to be more proactive about screening, despite their discomfort with
the process. Men in this sample, on the other hand, have shown lower-than-
average rates of screening for prostate-specific antigen (PSA) tests. Although
more than half of the men in the national sample reported having this test in
the past year, only 36% of the men in the current sample did.
The use of complementary and alternative medicine (CAM) has grown
significantly throughout the past decade within the general U.S. population.
High levels of CAM use are also seen in the current sample, where almost
half of adults have visited at least one type of alternative care provider. This
level is similar to those seen in the most recent national study, which found
 Jewish Community Health Survey of Chicago 81

that approximately 37% of adults have used some form of CAM (not includ-
ing prayer) at some point in their lives (Barnes et al., 2004). Certain types of
CAM treatments are used more frequently by those in this community. For
example, although only 20% of adults in the United States have ever been
to a chiropractor, more than one-third of those living here have done so.
Similarly, nationwide only 4% of adults have used acupuncture compared to
14% of those in the current sample (Barnes et al., 2004).

Physical Health Outcomes

Self-Rated Health
The first measure of overall health status was determined with a ques-
tion that asked respondents, “In the last 12 months, would you say your
health in general has been excellent, very good, good, fair, or poor?” This
measure, often called self-rated health, is a commonly used indicator of
health status because it is strongly predictive of mortality risk, even after
accounting for other risk factors such as age, low education and income,
high blood pressure, obesity, and other measures of health status (Idler and
Benyamini, 1997). In other words, individuals who report that their health
is poor are more likely to die in a given period compared to individuals who
say their health is good, even if these two individuals have the same number
of health problems. Using this global measure of health status, it was found
that the vast majority of adults in this Jewish community considered them-
selves to be in “good” health or better. Just more than one-quarter were at
the highest end of the scale (“excellent”), whereas only 5% said they had
“poor” health.

Disease Prevalence
Another important indicator of health and well-being—particularly for
adults—is the prevalence of chronic conditions. Respondents were asked if
they had ever been diagnosed with each of the six most common condi-
tions (Table 4-6). (Few health questions were asked of Jews nationwide or
in Chicago. Therefore, most of the comparison data for this area will come
from national health surveys.) When adjusted for age, the first finding shows
that over one-fourth of the Jewish sample reported a diagnosis of hyper-
tension. This is slightly higher than the percentages seen in the national
sample. Hypertension, also known as high blood pressure, is important to
study because it is one of the leading causes of cardiovascular morbidity
and mortality in the United States. It also increases an individual’s risk of
other health problems such as stroke and kidney failure. Fortunately, once
detected, many simple changes (such as eating a healthy diet, exercising
82 IMPORTANCE OF LOCAL DATA

TABLE 4-6 Prevalence of Chronic Conditions in the Jewish

Community Health Survey and the United States

WRP (%) United States (%)

Hypertension 28 21
Diabetes 7 7
Cancer 7 7
Heart problems 13 11
Arthritis 25 21
Asthma 10 11
Any of these 51 —

Sources: Jewish Community Health Survey, 2003 (age-adjusted);

National Health Interview Survey, 2002.

regularly, not smoking or drinking, and/or taking medication) can reduce

the risks related to this condition (NHLBI, 2005). Unfortunately, the Centers
for Disease Control and Prevention (CDC) estimate that nearly one-third of
all cases of high blood pressure are undetected. This means that the rates
seen here are likely to greatly underestimate the number of individuals with
unhealthy blood pressure levels (for all groups).
Levels of other chronic conditions, including diabetes, cancer, and asthma,
were similar to national estimates. For all of these, less than 10% of the
adult population had been diagnosed with the condition. Larger percentages
of individuals reported having arthritis and heart problems. Again, both of
these rates are comparable to national estimates. Overall, just more than half
of the adults reported having at least one of these six conditions.
The prevalence of other chronic conditions was also assessed. Particular
attention was paid to diseases that are often more prevalent in Jewish popu-
lations. However, the majority of these diseases, and others, were reported
by so few respondents that reliable estimates could not be produced. For
example, less than 5% of the sample reported being diagnosed with Crohn’s
Disease, colitis, Hepatitis B or C, tuberculosis, or bipolar disorder.
Although levels of many of the most common chronic conditions were
comparable to national estimates (and affected fairly small percentages of
individuals), it is important to pay attention to these rates for several reasons.
For one, rates of conditions like diabetes were low but may be growing rap-
idly. As discussed later in this chapter, levels of obesity in this population
are high (even among young children), and it is well-established that being
overweight is a major risk factor for diabetes (as well as other chronic condi-
tions, such as high blood pressure and heart problems). Thus, the prevalence
of these conditions is likely to increase in this population in the coming
years. In addition, having chronic condition rates equal to those seen for the
country as a whole is not necessarily an impressive accomplishment. For
 Jewish Community Health Survey of Chicago 83

many measures of health, the United States routinely ranks at the bottom
of all industrialized countries. For example, the average life expectancy at
birth for the United States is only the 48th highest in the world (World Fact
Book, 2005). Finally, the community should not be satisfied with the current
levels of chronic conditions because these conditions significantly affect an
individual’s quality of life, yet a large percentage result from preventable
causes. Thus, continually lowering the prevalence of these conditions is a
reasonable, and worthy, goal for all communities.

Obesity
More than half of both adults and children in this community were over-
weight or obese. Specifically, 33% of adults were overweight and an addi-
tional 24% were obese. For children, 28% were overweight and an additional
26% were obese. More information on the data related to childhood obesity
is presented in Chapter 9, along with a description of the intervention devel-
oped to address this important health risk (Benjamins, 2010). Of the over-
weight and obese adults, 87% rated themselves as slightly or very overweight.
The remaining 13% said they were about the right weight or underweight.
This is important to know because those overweight or obese individuals
who perceive themselves as the right weight (or underweight) would not be
aware of the need to lose weight. Half of all adults (most of whom were
overweight or obese) said they were currently trying to lose weight, whereas
an additional 37% were working to maintain their weight. Nearly one-fourth
of the adult respondents were both exercising and eating healthier to lose
weight. Unfortunately, less than half of overweight or obese adults reported
that their doctor had advised them to lose weight. In fact, only 22% of all
adults had received this advice.

Mental Health Outcomes

Mental health is as essential to overall health and well-being as physical

health. Moreover, mental illnesses, such as depression, are risk factors for
many chronic conditions and can have a negative influence on the course
and management of these conditions (Chapman, Perry, and Strine, 2005).
Therefore, depression is expected to be the second leading source of the
global burden of disease by 2020 (Murray and Lopez, 1996). As shown
in Table 4-7, over half of the sample reported emotional health problems
(defined by the respondent). Unfortunately, these problems had a large
impact on individual’s lives, such as restricting overall productivity and
even limiting an individual’s ability to work. More specific information
on one of the most common mental health conditions—depression—is
provided below.
84 IMPORTANCE OF LOCAL DATA

TABLE 4-7 Mental Health Problems in the Jewish Community Health Survey

Percent

Emotional Health
Ever had emotional health problems 53
Days in past month when emotional health was not good
1–7 days 22
8 or more days 14
Accomplished less because of emotional problems
Some of the time 20
All or most of the time 7
Did not work because of emotional problems
Some of the time 16
All or most of the time 3
Depression
Ever diagnosed with depression 21
Screened depressed (CESD) 17
Depressed in the past month 32

Source : Jewish Community Health Survey, 2003.

Three different measures of depression were examined within this Jewish

population. For the first measure, respondents were asked if they had ever
been told by a physician that they were depressed. In contrast to this measure
of clinical diagnosis, the second measure used a set of questions to screen for
probable depression. These questions, called the Center for Epidemiological
Studies Depression (CES-D) scale, included a set of 10 statements, such
as “I felt depressed” or “I felt everything was an effort” (Radloff, 1977).
Individuals with four or more positive responses to these statements were
considered likely to be depressed. Finally, individuals were asked if they
were depressed in the past month.
In this sample, more than one-fifth of individuals reported having been
diagnosed with depression at some point in life. This is slightly higher than
recent national estimates, which have found that lifetime depression is reported
by 16% of adults (Kessler et al., 2003). In addition, nearly as many adults
screened positive for current depression (using the CES-D scale). Although
recent national comparisons for this measure are not available, older data
shows that this estimate is similar to the general public’s rate of depression.
Finally, approximately one-third of adults in this sample reported that
they had been depressed in the past month. Again, no good comparison
data could be found, but this number is substantially higher than national
estimates of depression within the past year (Kessler et al., 2003). In other
words, Jewish adults in this community are much more likely to consider
themselves as having been depressed compared to other adults in the United
States. Moreover, overweight and obese individuals were two to three times
 Jewish Community Health Survey of Chicago 85

more likely to screen positive for depression compared to those who were
normal or underweight.

Physical and Mental Disability

Respondents were not asked directly if they were disabled (because of practi-
cal and ethical reasons), but they were asked about the presence of disabil-
ity within their household. From this question, it was estimated that nearly
one-fourth of individuals (23%) in this community lived with an individual
with a disability. This is significantly higher than the rate reported for all
Jewish households in Chicago (15%). It is more difficult to compare this with
American households overall because the Census uses a broader measure of
disability (and finds a 29% rate with this measure). The absolute, and relative,
magnitude of disability in this community warrants further attention.
Individuals who responded that they lived with an individual with a dis-
ability (note that this could be the respondent as well) were then asked what
type of disability the individual had been diagnosed with. Approximately
half of this group reported a learning disability. An additional 20% reported
a general physical disability. More specific responses were also given, such
as blindness, deafness, and emotional problems. Not unexpectedly, a sub-
stantial proportion (45%) of the individuals with a disability had special care
needs. These needs were diverse, reflecting the wide range of disabilities
reported. Many involved either some type of health-care provider or a mobil-
ity device. In addition, other service providers, such as tutors and caregivers,
were needed by many of the disabled individuals.
Certain characteristics were more commonly seen in adults living with
someone with a disability compared to those living in households without
a disabled individual. Perhaps most importantly, individuals living with
someone with a disability were more likely to report certain health prob-
lems themselves. For example, the percentage of individuals who screened
positive for depression was nearly twice as high in this group than in the
general population. Levels of poor subjective health were also higher for
adults in this group. Not surprisingly, individuals living in a household with
a disabled individual were more likely to face financial difficulties as well.
More specifically, more than half of these individuals reported that they had
insufficient funds to meet their needs. Likely for this reason, almost half of
this group (44%) had used Jewish services in the past year.

Health Behaviors

Because of the increasing awareness of the role that health behaviors play
in maintaining wellness, numerous questions were asked to gauge the level
86 IMPORTANCE OF LOCAL DATA

of behavioral risk factors in this population. This section summarizes eating

habits, physical activity, smoking, drinking, and drug use.

Eating Habits
The majority of respondents (66%) said that diet and nutrition were very
important to them. A similar percentage (62%) reported being satisfied
with their current eating habits. However, when this question is examined
by weight status, large differences are found. Specifically, normal or under-
weight individuals were much more likely to be satisfied with their eating
habits (80%) than overweight individuals (62%) or obese individuals (34%).
Overall, access to food did not seem to be a problem for most individuals.
For example, the vast majority of individuals had a grocery store within 15
minutes of their home. Furthermore, almost two-thirds of individuals were
very satisfied with the food selection available to them. Finally, 84% said
that their income was sufficient to buy the food they wanted.
Several unhealthy eating behaviors were reported for both adults and
children within this community. For example, more than one-fourth (29%)
of all adults reported eating fast food once a week or more (Table 4-8).
Unfortunately, nearly one-third of children (32%) also reported eating out
at least once a week, and this percentage was higher for overweight or
obese children (38%) than for normal weight children (28%). In addition,

TABLE 4-8 Comparisons of Selected Health Behaviors in the Jewish

Community Health Survey

WRP (%) Chicago (%) United States (%)

Eating habits
Eats fast food regularly (≥1 time/ 29 — —
week)
Physical activity
Moderate activities (≥3 times/ 50 43 47
week)
Vigorous activities (≥3 times/ 27 22 25
week)
Cigarette use
Current smoker 4 23 22
Former smoker 30 23 25
Alcohol use
Current drinker (≥1 drink in last 48 60 59
month)
Drug use
Smoked marijuana in past month 4 7 6

Source : Jewish Community Health Survey, 2003; Behavioral Risk Factor Surveillance System,
2002, 2003; National Survey on Drug Use and Health, 1998, 2001.
 Jewish Community Health Survey of Chicago 87

approximately two-thirds of all children failed to eat the recommended daily

five servings of fruits or vegetables. This number would be even higher if
fruit juices were not included in the question. Other issues, such as a defi-
ciency in dairy intake for girls, were also seen.

Physical Activity
Respondents were asked about levels of both moderate and vigorous physi-
cal activity. Examples that were given to define moderate activities included
brisk walking, bicycling, vacuuming, gardening, or anything else that caused
small increases in breathing or heart rate. Examples of vigorous activities
included running, swimming laps, aerobics, heavy yard work, or anything
else that caused large increases in breathing or heart rate. For each level,
respondents were asked how many times per week they engaged in the activ-
ities for at least 20 minutes at a time.
It is generally recommended that adults engage in moderate physical
activities for at least 30 minutes on 5 or more days of the week (CDC,
2005). In addition, Healthy People 2010, a collection of health goals for
the United States, recommends that individuals engage in vigorous physi-
cal activity 3 days or more per week for 20 minutes or more at a time
(USDHHS, 2000). Meeting either (or both) of these goals has been shown
to provide individuals with extensive health benefits. Unfortunately, in
this community, levels of both moderate and vigorous activity fell below
recommended amounts of exercise. Approximately one-half of individu-
als participated in moderate activities and one-fourth in vigorous activi-
ties three times or more a week (Table 4-8). These levels are both slightly
higher than Chicago averages but similar to those for the United States.
Some differences in activity levels exist when looking at demographic
and socio-economic characteristics (not shown). For example, women were
significantly more likely to report regular moderate exercise but were
slightly less likely to report participating in vigorous activities. Although
no differences are seen for education, individuals with lower incomes were
less likely to report moderate exercise compared to those who earn more.
Finally, foreign-born individuals have much lower levels of physical activity
for both moderate and vigorous intensities. Many of these trends are similar
to those seen in other populations (USDHHS, 2000).

Smoking
On a more positive note, questions regarding cigarette use found that only
4% of the sample reported being a current smoker (Table 4-8). This is well
below the rates of smoking noted in the general population. Interestingly, the
percentage of individuals who had smoked in the past was slightly higher
for the Jewish sample. Note that a social desirability bias may result in
88 IMPORTANCE OF LOCAL DATA

individuals underreporting their actual smoking levels. This may be par-

ticularly true in a predominantly Orthodox community where rules (and
norms) prohibiting smoking exist (such as explicitly prohibiting smoking on
the Sabbath). Although these findings are thus likely to underestimate the
actual level of smoking in this community, the bias toward underreporting
is thought to occur (to some extent) in all populations. Thus, actual levels of
smoking in this sample are likely to be higher than reported but still lower
than other populations.

Drinking Alcohol
It was also found that approximately half of the adults in this Jewish sam-
ple consumed alcoholic beverages in the past month. This level is lower than
both the Chicago and U.S. population estimates. Further analyses showed
that the vast majority of these “drinkers” had one drink or less per week,
on average. A series of questions was also asked to assess the prevalence of
drinking problems. These questions concerned topics such as feeling guilty
about drinking, drinking in the morning, drinking and driving, and being
advised by a doctor to stop drinking. For each of these questions, no more
than 3% of the sample reported a problem.

Drug Use
Finally, only 4% of the adults reported smoking marijuana in the past
month. This rate is slightly lower than Chicago or U.S. rates. No additional
questions on drug use were included here.

Other Health-Related Issues

Domestic Violence
The issue of domestic violence has been attracting an increasing amount
of attention within the Jewish community. The population estimates pro-
vided by the current study complement the more qualitative data obtained
from a previous needs assessment done in Chicago (Altfeld, 2004) and, to
our knowledge, provide the first prevalence estimates of domestic violence
within any Jewish community in Chicago. Specifically, the survey revealed
that one-fourth of individuals in this community had witnessed domestic
violence (data not shown). This is very similar to suspected prevalence rates
reported in the Needs Assessment on Domestic Abuse in the Chicago Jewish
community, which used key informant interviews and surveys of community
members and leaders to estimate that the rate of abuse in Jewish households
was 23% to 25% (Altfeld, 2004). Unfortunately, this type of information
is often underreported (within all populations), so these rates most likely
 Jewish Community Health Survey of Chicago 89

underestimate the actual prevalence of this type of violence. The sensitive

nature of domestic violence information is highlighted by the fact that less
than half of the individuals in the current sample (39%) who witnessed this
type of violence actually reported it. Individuals were also asked if they,
or members of their household, had ever been a victim of physical, verbal,
or sexual violence. Nearly one-third of the sample responded affirmatively.
This is lower than estimates from a national survey of women in the United
States (Plichta and Falik, 2001).

Genetic Testing
Individuals of Jewish descent, particularly Ashkenazi Jews (82% of this
sample), have a higher risk for carrying mutations for certain genetic dis-
eases. The American College of Obstetrics and Gynecology recommends
that Ashkenazi Jews be offered carrier screening for four specific disorders:
Tay-Sachs disease, Canavan disease, cystic fibrosis, and familial dysauto-
nomia. Rates of these disorders can be as much as 20 to 100 times higher
in this population (Chicago Center for Jewish Genetic Disorders, 2005). It
is particularly important to examine rates of screening within the Jewish
population of Chicago because existing data show low rates of testing for
at least one “Jewish” genetic disorder. More specifically, rates of testing for
Tay-Sachs disease in the Chicago area were significantly lower than rates
seen for other cities with large Jewish populations (JUF website, 2005).
The current survey revealed that within this Jewish community in Chicago,
42% of all adults had been screened for some type of genetic disorders (data
not shown). Rates were highest among those of child-bearing age, those who
were currently married, and those who had children. In addition, individuals
with college degrees, higher incomes, and current employment were more
likely to report having been screened. Finally, Orthodox Jews and members
of synagogues were more likely to report being screened for genetic disor-
ders, compared to those belonging to other denominations and those who did
not belong to a synagogue.
Of the individuals who reported having been screened, only a small per-
centage (13%) found that they were carriers for a genetic disorder. Tay-Sachs
was the most commonly reported condition; however, the adults reporting
this made up less than 5% of the total population. Individuals were asked
several questions to better understand the motivations and barriers to being
tested. About half of those who had been screened said that they had done
so after being told by their doctor or rabbi about Dor Yeshorim, a program
based in New York to facilitate the confidential screening of Jewish indi-
viduals for relevant conditions. Approximately one-fourth said that they had
been tested because of family concerns. A smaller percentage reported that
a family history of genetic disorders prompted their screening. The reported
90 IMPORTANCE OF LOCAL DATA

barriers fell into three main groups: those who did not feel like it was neces-
sary, those who never considered testing, and those who did not know such
tests existed.
These findings suggest that interventions aimed at educating and encourag-
ing doctors and rabbis within these communities to provide information and
referrals may be an effective means of increasing screening rates. Additional
efforts to raise community awareness may also be valuable because many
reasons given for not being screened involved a lack of knowledge about
the tests and their importance. Educational campaigns offered through syna-
gogues, women’s organizations, community centers, campus Hillels, and
mass media should all be expanded. Finally, although not frequently reported
as a barrier here, cost is often a major impediment to screening. Programs
that offer free or reduced cost screenings are crucial for increasing rates.

Vulnerable Groups

Finally, because some individuals shoulder a disproportionate amount of

the burden posed by the health problems discussed above, the health status
of potentially vulnerable groups is examined here. In particular, adults with
large families, single parents, older adults, and Russian-speaking immi-
grants were all expected to have special needs. For example, families with
four or more children were more likely to have insufficient funds for impor-
tant needs such as health care, food, or education. More disturbingly, nearly
half of all single parents lived below the poverty line (based on approxima-
tions using the 2003 federal poverty guidelines) (USDHHS, 2005). In addi-
tion, more than half lived in a household with someone with a disability.
Perhaps for these reasons, single parents had more depressive symptoms
and were more likely to report being depressed in the past month compared
to other adults.
Adults older than 65 years of age were relatively advantaged financially,
yet they still faced a disproportionate amount of health problems. These
problems included elevated rates of high blood pressure (63%), arthri-
tis (65%), and activity limitations (37%). Finally, there was a substantial
Russian-speaking immigrant population in this Jewish community. Although
this group made up only 5% of the sample, they represent an estimated 1,150
adults in the community and warrant special attention because of the disad-
vantages they face. For example, nearly half of the individuals in this group
reported having insufficient funds to meet their health-care and food needs.
Health concerns were also common. For example, levels of heart disease
were more than twice as high as levels seen in the total sample (and in
national estimates), and these individuals were also much more likely to have
weight problems.
 Jewish Community Health Survey of Chicago 91

Overall Survey Impact

Dissemination and Reactions

A variety of dissemination strategies were used to share these findings with

community members, health service providers, and other relevant groups
and individuals. To begin, these findings were shared with the community
through the publication and distribution of an in-depth report. Specifically,
it summarized the methodology and main results of the survey in layman’s
terms for all interested individuals and agencies (Benjamins et al., 2006a).
Since its publication, this report has been made available (free of charge) to
any interested group or individual. It can also be downloaded from the SUHI
website (www.SUHIchicago.org).
To coincide with the publication of this report, a “release event” was held
to present the findings and to allow community members a chance to ask
questions and make comments and suggestions (Fig. 4-2). This event was
held at the local Jewish Community Center. All respondents to the survey
were invited back, and information about the presentation was distributed
through numerous avenues (including synagogue newsletters) to reach the
maximum number of individuals. Approximately 40 individuals attended
this session, which included opening remarks from a vice president of the
Jewish Federation and the CEO of Mount Sinai Hospital. Healthy refresh-
ments were served and the project dietitian provided healthy recipe cards
and other health promotion materials. Despite the relatively low attendance,
the project staff felt that this important part of the research process helped
to strengthen the relationship between the research team and the community,
as well as to begin generating conversations about health among individuals
and organizations.
Following this, a multipage article about the event and the survey findings
was published in a community newspaper, the Chicago Jewish News. For
other researchers and those in the academic world, a summary article was
published in the Journal of Community Health (Benjamins et al., 2006b). In
addition, for those who provide services within the Jewish community, an
article was published in the Journal of Jewish Communal Service (Benjamins
et al., 2007). This article had the distinction of being the first article focused
on health ever published in this journal.
Finally, the findings were presented to community stakeholders, includ-
ing lay leaders, community agency professionals, rabbis, and school
administrators, through a series of meetings held with all interested
groups. Each meeting began with a presentation by the project director
of the study background, methodology, and results. The second half of
each meeting was organized like an informal focus group, facilitated by
92 IMPORTANCE OF LOCAL DATA

Figure 4-2 Advertisement for Community Meeting to Discuss Findings of the Jewish
Community Health Survey

a member of the project steering committee from the Jewish Federation.

To begin, time for questions about the findings was allowed. Then, every-
one present was asked to comment on the following questions: (1) What
are the most pressing health concerns?; (2) How should these issues be
addressed?; and (3) Who should be involved? Through these sessions,
health problems were prioritized, potential intervention ideas were
developed, and future partners were identified.
 Jewish Community Health Survey of Chicago 93

Interventions and Other Uses of the Data

The first intervention developed based on findings from this survey was the
Jewish Day School Wellness Initiative. This four-year project, which uses a
culturally-appropriate model of school wellness to reduce levels of childhood
obesity within Jewish schools in Chicago, is described in detail in Chapter 9
(Benjamins, 2010). Other interventions have also been developed based on find-
ings from the current survey.
In particular, data regarding the prevalence of domestic violence fac-
tored into the recent creation of a pilot program targeting synagogues as
a vehicle to promote safe and healthy relationships. Through this model
certification program, synagogue clergy, professionals, and lay leadership
participate in a series of core trainings and institutional policy review to
improve their capacity to both prevent abuse, as well as to respond to con-
gregants experiencing abuse in a way that is appropriate, effective, spiritual,
and healing. Another intervention informed by the survey data promotes
health and well-being among older adults in the targeted survey community.
Specifically, a well-known model of promoting aging in place was adapted
and implemented in an Orthodox community with a large proportion of
residents who are 60 years and older. This adapted Naturally Occurring
Retirement Community (NORC) model is now known as LaBriut (“To Your
Health”) and is in its third year. It brings a range of wellness programs (e.g.,
chronic disease self-management classes, fall prevention classes, nutrition
and exercise programs, health screenings, shopping shuttle) to more than
250 seniors annually.

Conclusions
This chapter summarizes findings from the groundbreaking Jewish
Community Health Survey. Overall, the findings indicate that the individuals
in this community were as healthy (or healthier) than the average residents
of Chicago or the United States; however, many serious health concerns still
exist for both adults and children. Perhaps the most striking health prob-
lems involve weight. In fact, it was discovered that more than half of all
adults and children were overweight. In addition, elevated rates of hyperten-
sion, disability, and depression were apparent. The current survey was also
instrumental in collecting local data on other health-related behaviors and
experiences. For example, it was discovered that more than half of adults
had not been screened for genetic disorders. A more distressing finding is
that a large proportion of individuals had witnessed or experienced some
type of violence. In addition to these health concerns, many of the respon-
dents were found to have financial limitations, unmet health-care needs, and
94 IMPORTANCE OF LOCAL DATA

other issues that could prevent them from achieving optimal levels of physi-
cal and emotional health. Moreover, certain groups of individuals shouldered
a disproportionate amount of these financial and health-related burdens. In
particular, members of large families, single parents, and older adults were
found to have special needs and remain important targets for the provision
of social services.
This type of in-depth health information for a Jewish community is rare
and has not been available before in Chicago or in most other cities. The
findings have greatly increased the awareness of health issues within this
community and have provided an impetus for change. The findings are
also being used to guide health promotion and disease prevention activi-
ties at the individual, organization, and community level. Through these
means, this health survey continues to be a valuable asset for the Jewish
community of West Rogers Park/Peterson Park. Finally, it is hoped that
this effort will spur similar surveys in Jewish communities around the
country.

Acknowledgments

The catalyst of this initiative was Joel Carp of the Jewish Federation of
Metropolitan Chicago. His leadership enabled the project to gather both
community support and sufficient funding. His colleague, Dana Rhodes,
and the director of the Sinai Urban Health Institute, Steven Whitman, were
also valuable members of the survey steering committee and consistently
provided guidance and support for the project. The generous grants from
the Polk Bros. Foundation, the Jewish Federation’s Fund for Innovation in
Health (supported by the Michael Reese Health Trust), the Irvin and Ruth
Swartzberg Foundation, and the Fel-Pro Mecklenberger Supporting Fund
must be recognized again. Furthermore, the author would like to thank the
University of Illinois at Chicago’s Survey Research Laboratory, which so
competently handled the logistics of data collection. Thanks are also due to
members of the Sinai Urban Health Institute, especially Kristi Allgood, who
provided numerous “in-kind” contributions. Finally, and most importantly,
much appreciation is due to the community respondents who completed the
survey and made this unique effort possible.

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5
THE CHICAGO ASIAN COMMUNITY
SURVEYS: METHODOLOGY AND KEY
FINDINGS

Matthew J. Magee, Lucy Guo, Ami M.

Shah, and Hong Liu

Introduction

Despite Chicago’s diverse population, existing data that describe racial and
ethnic minority health are lacking, particularly among the Asian population
(Walter, 2004). Data are limited because they are typically aggregated for
all Asians1 and are rarely available at the state, city, or community level.
The availability of health data for specific racial and ethnic groups enables
policymakers, researchers, and service providers to develop appropriate
agendas that most effectively improve health outcomes, monitor progress in
reducing disparities, and plan targeted interventions.
Inspired by the Sinai’s Improving Community Health Survey (Sinai Survey),
the Asian Health Coalition of Illinois (AHCI) and its community partners
began implementing a similar local assessment of health in three Asian popu-
lations in Chicago. They conducted health surveys in the Chinese, Cambodian,
and Vietnamese communities; together these are called the Chicago Asian
Community Health Surveys (Asian Surveys). In this chapter, the background,
methods, and key findings are discussed briefly to highlight the processes,
achievements, and impact of the Asian Survey project. The intent is that this
description will motivate and guide other institutions, agencies, or communi-
ties interested in conducting a similar community health survey.
98
 Chicago Asian Community Surveys 99

Background and Rationale

The Chicago Asian population grew from 102,938 in 1990 to 125,974 in
2000 (Misra et al., 2005). The Asian community is one of the fastest grow-
ing racial and ethnic groups in the city, yet little is known about its health
status (Tao, Han, and Shah, 2006). Consequently, developing strategic plans
and implementing health programs is challenging for community-based
organizations (CBOs) serving the Chicago Asian population. How does one
monitor success in improving access to health care or the health status of
communities? How do funders know that their goals have been met without
such health data?
To our knowledge, few agencies have surveyed the health needs of the
Chicago Asian community in the past. Surveys that had previously been con-
ducted used convenient sampling techniques that may not have achieved a
sufficient sample size to estimate population level characteristics. Although
previous efforts are notable, the results are unpublished and it is unclear
whether these data were useful to quantify important health problems, shape
health programming, and direct resources to these communities.
In the United States, Asians have historically been stereotyped as the
“model minority” (Peterson, 1966). Yet, limited health data that do exist in
Chicago for this population suggest otherwise. Data indicate that the Asian
community is in fact in great need of additional public health programming,
and many health outcomes show a slower rate of improvement for this popu-
lation compared to Chicago at large. For example, from 1997 to 2005, the
infant mortality rate in Chicago increased among Asians whereas it stabi-
lized or decreased for Whites, Blacks, and Hispanics. Overall, the Chicago
Department of Public Health reported an increase in Asian age-adjusted all-
cause mortality rates between 1990 and 2000, from 416 to 466 per 100,000
(Misra et al., 2005). During the same time period, all-cause mortality rates
decreased in Chicago as a whole. Such data indicated several important
health disparities and prompted local community leaders to take action to
help explain these startling poor health trends.
Three principal factors motivated the Asian Surveys. First, these health
surveys would further explore the important health disparities that already
exist and identify other areas of health need. Second, providing information
about specific Asian ethnicities would augment each community’s ability to
plan effective programs and interventions. Third, data from these health sur-
veys would inform policymakers and funders of how resources for the Asian
community should be best distributed. The success of the Sinai Survey
served as a model project for the Chicago Asian community to adapt for its
own use, with the hope of generating awareness of the need for Asian spe-
cific health resources.
100 IMPORTANCE OF LOCAL DATA

Partnerships
To meet the Chicago Asian communities’ need for accurate and scien-
tific local health data, AHCI and its partners gathered new health data
about the Chinese, Cambodian, and Vietnamese populations in Chicago.
In collaboration with the Sinai Urban Health Institute, AHCI received
funding from the Illinois Department of Public Health, the United Way of
Metropolitan Chicago, and the Retirement Research Foundation to imple-
ment this project. Specifically, the Asian Surveys aimed to: (1) document
the general health status of Asian immigrants and Asian American resi-
dents in Chicago; (2) compare the results to other racial and ethnic groups
with local data from the Sinai Survey (Whitman, Williams, and Shah,
2004) and other comparable local, state, and national health statistics; and
(3) use the findings to motivate community organizations, guide targeted
interventions, and bring greater resources to the community to increase
efforts for improved health overall. To achieve these ends, AHCI partnered
with three well-established and dynamic CBOs to implement the project:
Chinese American Service League, Cambodian Association of Illinois,
and Chinese Mutual Aid Association. These organizations were pivotal to
guiding survey development, ensuring cultural sensitively, and promoting
community acceptance of the survey. They were also essential to data col-
lection and interpretation of the survey results.

Methodology

Sample Selection
Because of the diversity of the Asian population living in Chicago, AHCI
needed to select specific Asian subgroups to be surveyed. These groups were
selected based on where Asians were most populated and where there was
greatest community interest. AHCI first examined existing health and socio-
economic data, which are often displayed by Chicago’s 77 officially desig-
nated community areas. Areas with the greatest proportion of Asian adults
and the overall number of Asians living in one of the community areas were
identified based on data from the U.S. 2000 Census. Second, AHCI consid-
ered its community partners, their proximity to the location of AHCI, and
their level of support and interest in local data. Based on these factors, three
community areas were selected for the Asian Survey project.
Armour Square, home of Chicago’s largest Chinese community and
commonly known as Chinatown, was the first community area selected. It
was selected for two reasons. First, based on the U.S. 2000 Census, 61%
of its residents reported their race or ethnicity to be Asian (Bocskay et al.,
 Chicago Asian Community Surveys 101

2007). The high concentration of Asians living within a given geographic

area best facilitated use of the door-to-door study design that was modeled
after the Sinai Survey. In addition, a strong community partner, the Chinese
American Service League, is located in this area. They understood the value
of health data for the Chinese population it serves and agreed to partner in
this endeavor with AHCI. They supported the project with community rela-
tions and data collection.
Another community area selected was Albany Park. According to
the 2000 U.S. Census, it has the second largest number of Asians over-
all in Chicago, consisting of Indians, Filipinos, Vietnamese, Koreans, and
Cambodians. However, because of the smaller individual population sizes,
there are no published Census data about these Asian subgroups. They are
instead aggregated into a category of “other.” Researchers decided to work
with the Cambodian population in this community because of AHCI’s long-
standing relationship with the Cambodian Association of Illinois, located
in this community area. This partner agency has served the Cambodian
community since 1976. Unlike the relatively dense residential layout of the
Chinese population in the Chinatown neighborhood (in Armour Square),
the Cambodian population is geographically dispersed within a diverse
community area.
Third, Uptown, located on Chicago’s north side, was also chosen to be part
of the Asian survey project. Uptown is a diverse community area and histori-
cally a home to recent Asian and African immigrants. Based on the 2000 U.S.
Census, nearly 13% of Uptown residents are Asian and 7% of the Chicago Asian
population resides here (Misra et al., 2005, Bocskay et al., 2007). Uptown was
identified as a neighborhood of high need by several local foundations, which
carefully assess the social service needs of communities. In 2000, 34% of the
Uptown population was foreign-born and 25% lived in poverty. In addition,
AHCI and its community partner, the Chinese Mutual Aid Association, are
both located in Uptown. Because Vietnamese individuals represent 27% of all
Asians residing in Uptown, the largest Asian subgroup, this ethnicity was cho-
sen to be surveyed. Just as with the Cambodian population in Albany Park, the
Vietnamese population in Uptown is less concentrated.
To summarize, the three Asian ethnicities (in distinct Chicago com-
munities) targeted were the Chinese population in Armour Square, the
Cambodian population in Albany Park, and the Vietnamese population
in Uptown (Fig. 5-1). Although the community areas represented the geo-
graphic boundaries for the Asian Surveys, the project focused on gath-
ering health information from the three Asian subgroups residing within
them. The community areas are referenced by the specific Asian ethnici-
ties (i.e., Chinese, Cambodian, and Vietnamese) in the remainder of this
chapter.
Figure 5-1 Chinese, Cambodian, and Vietnamese Communities in Chicago (Top)
Chicago’s Chinatown is on the near south side in the Armour Square community area.
It is home to number of banks, Chinese restaurants, gift shops, grocery stores, Chinese
medicine stores, and so forth. It is a community hub for Chinese people in Chicagoland,
a business center for Chinese in the Midwest, as well as a popular destination for tour-
ists and locals alike. (Middle) The Cambodian Association of Illinois is comprehensive
social service organization founded in 1976. It was founded by a group of Cambodian
refugee volunteers having fled the tyranny, brutality, and torture of the Khmer Rouge
genocide in which 2 million people perished. It is the only nonprofit organization in the

102
 Chicago Asian Community Surveys 103

Questionnaire Development

The Asian Surveys sought to create a comprehensive questionnaire that

would cover a wide variety of health topics while maintaining the ability
to compare results to analogous state and national data. Additionally, from
the project’s inception, AHCI and its partners committed to ensuring that
the communities being interviewed would have input into the questionnaire
design. Because the local leaders and partner CBO staff know their commu-
nities’ health needs best, they were recruited to review the survey instrument
by participating in the study’s Project Advisory Board.

Chinese Health Survey

AHCI initially designed the Chinese Survey based on existing health sur-
vey instruments. They first used the Sinai Survey to assess those health topics
they wanted to keep (Whitman, Williams, and Shah, 2004). The Sinai Survey
was modeled after several national health surveys, including the Centers
for Disease Control and Prevention’s Behavioral Risk Factor Surveillance
System (BRFSS), the National Health and Nutrition Examination Survey
(NHANES), and the National Health Interview Survey (NHIS). Most health
measures for the Asian Surveys were taken directly from the previously
mentioned national surveys. Some questions were taken from other estab-
lished measures. For example, measures of mental health were taken from
the previously validated Center for Epidemiologic Studies-Depression Scale
(CES-D). Nutrition questions were derived from NHANES and modified by
the Project Advisory Board to offer response choices that were more appro-
priate for the Chinese community’s diet. When appropriate, questions were
adapted from New York City Community Health Survey (NYC Department
of Health and Mental Hygiene, 2005), which had also been administered
with a Chinese population. The survey only included culturally specific
questions that the Project Advisory Board determined as important to the
Chinese community’s health.
The survey instrument was translated and back-translated from English to
Chinese, and both versions were modified several times. Both the Chinese and

Chicago metropolitan area that provides bilingual programming to address the interre-
lated social and economic needs of the Cambodian-American population. (Bottom) The
elevated train stop on Argyle St. in Uptown, Chicago is on the north side of Chicago.
Chicago’s Uptown neighborhood is home to many ethnic Chinese Southeast Asian
(Vietnamese, Laotian, Cambodian, etc.) residents and businesses.
Sources: Illinois Bureau of Tourism: http://www.enjoyillinois.com/illinoismediacen-
ter/images/pics/HighRes/Chicago/chinatown_festival.jpg; Michael Golamco www.
michaelgolamco.com; Uncommon Photographers, Argyle El Stop Online http://www.
uncommonphotographers.net/?m=20090203
104 IMPORTANCE OF LOCAL DATA

TABLE 5-1 Topics Included in the Chicago Asian Community Surveys,

2006–2008

Health conditions Health behaviors Health-care access Other social or

and attitudes environmental
factors

Tuberculosis Diet/Nutrition Primary care Education

Hepatitis Smoking Health coverage Employment
Diabetes Alcohol Cancer screening Income
Hypertension HIV/STDs Vaccination English proficiency
Cholesterol Obesity Medication/ Sense of
Other diseases Accident Supplements communitya
prevention
Mental health
Self-rated health
a
Only on Cambodian and Vietnamese Asian Surveys.

English versions were pilot-tested in Mandarin and Cantonese among 20 com-

munity residents in Armour Square with the help from the community partner.
The final set of questions for the initial Chinese community survey contained
159 items and covered a range of health topics detailed in Table 5-1.

Cambodian and Vietnamese Health Surveys

The development of the survey instruments for the Cambodian and
Vietnamese populations followed a similar process. First, staff from their
respective community organizations met with project staff to review the
instrument utilized in Chinatown. The survey for the Cambodian and
Vietnamese was identical; additionally, whenever possible the same ques-
tions utilized in the Chinese survey were included in the Cambodian and
Vietnamese survey instruments. Some questions were removed and others
added according to the suggestions of community partners and based on
response rates of questions in the Chinese survey.
The principal changes in the Cambodian and Vietnamese survey instru-
ments were to the nutrition and diet section. Rather than documenting the par-
ticipants’ nutritional intake, the questions asked about the nutritional value of
certain foods (e.g., “Do you think mangos are high or low in added sugar?”).
Questions asked about foods that were common to the Asian diet, such as
rice noodles, tofu, and soy milk. Additionally, because the physical activity
section had a low response rate in the Chinese survey, it was omitted for the
Cambodian and Vietnamese instrument. Finally, a section was added to include
the Sense of Community Index in an effort to capture participants’ perception
of safety and comfort in their community (Chavis and Wandersman, 1990).
A Project Advisory Board for the Cambodian and Vietnamese surveys
functioned identically to the Chinatown Board. Members met over a period of
 Chicago Asian Community Surveys 105

5 weeks and reviewed the project’s sampling design, survey instrument, and
management plans. Questions on the survey instrument were modified according
to the Board’s suggestions. The survey instruments were translated into Khmer
and Vietnamese and back-translated into English. Additionally, each question
was reviewed independently to ensure the meaning was accurately translated.
Interviewers pilot-tested the survey instrument informally with approximately
10 community volunteers at each study partner site. Interviewers also prac-
ticed the instrument with volunteers from the community organizations and
afterward shared any difficulties with the Board. The practice sessions gave
interviewers the opportunity to administer the survey questions adhering to
protocol guidelines. Moreover, this phase of survey development offered the
interviewers and overall project an opportunity to make final changes to spe-
cific questions and phrases that were problematic during the practice inter-
views. The final set of questions for the Cambodian and Vietnamese surveys
contained 203 items and included topics listed in Table 5-1.
All three final Asian survey instruments, along with the study proto-
col and interviewer training materials, were approved by the Sinai Health
System Institutional Review Board in Chicago, Illinois.

Survey Administration
The first step of data collection was to choose a scientific sampling method
that was feasible for each community. Study staff explored a variety of poten-
tial sampling methods. Telephone and Internet surveys were two feasible
study designs; however, AHCI felt that many Asian community residents,
particularly those with heavier health burdens, would be more receptive to
face-to-face interviews. The details of how the Chinese, Cambodian, and
Vietnamese individuals were identified and selected to participate in the
survey are described below.

Chinese Survey Instrument

As previously mentioned, because the Chinese survey was conducted in
the Chinatown neighborhood of Armour Square (where the community was
densely populated with Chinese residents), it was possible to conduct random
door-to-door sampling. In collaboration with The University of Illinois at
Chicago’s Survey Research Laboratory (SRL), AHCI implemented a three-
stage probability sampling design to gather the most accurate health profile
of the Asian population within this community. In the fi rst stage, four census
tracts in Armour Square were chosen for having the highest percentage of
Asian adults living in the area according to the 2000 U.S. Census. Sampling
in these tracts increased the probability that a randomly selected individual
was Asian, and most likely Chinese. Next, 30 census blocks were randomly
selected among the four census tracts. Utilizing U.S. Postal Service data,
106 IMPORTANCE OF LOCAL DATA

SRL compiled a list of addresses for every household and apartment build-
ing on these blocks and assigned identification numbers to each household.
Every household on these randomly selected blocks were then approached to
participate in the survey as the second stage of the sample. In the third stage,
one member from each household was selected using a random selection tool
derived from the Troldahl–Carter–Bryant selection matrix (Troldahl and
Carter, 1964) for participation in the study. Random selection of household
respondents reduced selection bias and enabled a diverse sample of partici-
pants by sex and age. The selection matrix insured that household members
were selected at random, independent of who answered the door or who was
most likely at home during interviewer hours. Household members were eli-
gible if they self-identified as Asian, were at least 18 years of age, provided
written informed consent, and lived in the community for at least the past
6 months.
AHCI hired and trained eight interviewers for the Chinese Survey, five of
whom were residents of Chinatown. All of the interviewers spoke English and
either Cantonese or Mandarin. All interviewers received training on how to
follow study protocols, speak about and introduce the project, administer the
survey, and gather feedback about the questionnaire’s translation, when neces-
sary. The Sinai Urban Health Institute and SRL both assisted with the train-
ings to provide comments from their experiences in other communities.
Data collection for the Chinese health survey took place in two phases; data
was first collected from November 2006 to January 2007 and resumed again
from June 2007 to March 2008 because of funding constraints. Interviewers
visited a total of 904 households and 572 (63%) of units were eligible (i.e.,
current residencies). Interviewers subsequently made contact with 447 eligible
household members, of which 385 agreed to participate and complete the sur-
vey. The participation rate, defined as the number of interviews divided by
the number of eligible respondents, was 86.1%. Similarly, the overall response
rate, defined as the number of interviews divided by the eligible sample, was
67.2% (American Association of Public Opinion Research, 2006).
The questionnaire took about 45 minutes to complete. Interviewers con-
ducted surveys in the participants’ preferred language. Upon completion
of the survey, participants received $20 as compensation for their time.
Interviewers completed 19 blocks and collected 385 surveys in approxi-
mately 7 months of data collection.

Cambodian and Vietnamese Health Survey Instruments

Compared to the Chinese population, the Cambodian and Vietnamese
populations were far less densely populated in their respective community
areas. The relative dispersion prohibited AHCI from using the door-to-
door approach employed for the Chinese Survey. In attempt to maximize
 Chicago Asian Community Surveys 107

resources, survey the largest number of Cambodians and Vietnamese indi-

viduals, and maintain scientific sampling, AHCI elected to pilot the use of a
relatively new but scientifically established technique known as Respondent-
Driven Sampling (RDS) (Heckathorn, 1997).
RDS has emerged as an important scientific sampling method for reaching
populations that are traditionally hard to recruit. Similar to snowball sampling,
after completing an interview RDS asks participants to invite their peers to
join the study. However, RDS collects more information than snowball sam-
pling to ensure random and representative sampling. Typically, three “seeds”
are chosen to initiate the survey and then are given recruitment coupons to dis-
tribute to their peers. After the seeds are chosen, the only participants eligible
for the study are those with a coupon. Each coupon is given a serial number
and the relationship between participants and their recruits is recorded.
To begin sample recruitment, RDS seeds (individual respondents) were
chosen from a phonebook based on common Cambodian and Vietnamese
surnames. Relative to the overall size, two seeds from the Cambodian popu-
lation and four seeds for the Vietnamese were selected. Each seed was given
three coupons printed on color-coded paper. The coupons contained study
contact information, eligibility criteria, and a serial number that was linked
to the seeds’ name in a database. The seeds were asked to distribute the cou-
pons to their peers and instructed that for each coupon brought in by a new
eligible participant, the seed would receive $5. Upon completing the survey,
each new survey participant received the same instructions.
Eligible participants were 18 years of age or older; self-identified as
Cambodian or Vietnamese; spoke English, Khmer, Vietnamese, or Cantonese;
provided proof of residency in the designated community areas of Albany
Park or Uptown based on zip code; and presented a valid study coupon.
Interviewers obtained written informed consent from all new eligible par-
ticipants. Each returned coupon number was recorded in a database, and
according to RDS procedures, all new participants were asked to estimate
their social network size and to describe the type of relationship between
themselves and the referring participant. After completing the survey, par-
ticipants were compensated $20 for their time. Recruitment and interviewing
went on until the project goals were achieved. By 13 weeks, 150 interviews
with Cambodian participants were completed, and in 22 weeks, 250 inter-
views with Vietnamese participants were completed.

Survey Analyses
To make the data from the surveys more representative of the Asian popula-
tion from each community area selected, when possible survey design specific
weighting techniques were followed. The Chinese Survey data were weighted
108 IMPORTANCE OF LOCAL DATA

to the probability of selection and were age-adjusted to the 2000 U.S. stan-
dard population. Data from the Cambodian and Vietnamese surveys were
weighted to social network size using RDS Analyses Tool (RDSAT) version
5.6 (Volz et al., 2007). These survey data were weighted to respondents’ social
network sizes to obtain a population based representative sample within each
specified geographic area. All data presented in this chapter are weighted and
age-adjusted the standard population, unless otherwise noted. Age-adjusted
95% confidence interval estimates were calculated (Keyfitz, 1966).

Results

Sample Characteristics

The demographic characteristics of the three Asian study populations var-

ied (Table 5-2). The Chinese Survey respondents consisted of a large elderly
population, more than 37% of the sample was 65 years or older, and more
than 15% were 80 years or older. Cambodian survey respondents were youn-
ger and more likely to be female. Roughly half of study participants had a

TABLE 5-2 Socio-Demographic Characteristics of Chicago Asian Community

Survey Participants

Characteristic Sample Chinese Cambodian Vietnamese U.S. Asian

Size (n) 368% 150% 250% —%

Female 55.8 64.0 58.6 51.7

Age
18–44 years 28.5 48.7 28.9 57.7
45–64 years 34.3 32.8 45.5 30.5
65+ years 37.2 16.7 25.6 11.7
Education
High school or more 45.8 45.2 49.3 85.4
Annual household income
<$30,000 USD 68.9 59.9 80.7 —
Unemployed 18.0 37.8 59.1 3.4
Foreign-born 93.4 80.2 100.0 67.2
10+ years in United States a 58.2 55.8 62.7 75.4
Spoken English proficiencyb
Less than “very well” 90.3 81.7 97.3 36.1

Sources: Chicago Asian Community Survey Project, 2006–2008; U.S. Asian data come from
2005 to 2007 American Community Survey 3-year estimates for Asians alone.
Notes: All estimates in this table are weighted for the probability of selection.
a
Among participants who are foreign-born.
b
Participants who reported their first language was not English were asked to rate their English
speaking ability.
 Chicago Asian Community Surveys 109

high school education or more—notably less than the U.S. national average
of 85% for Asians (American Community Survey, 2005–2007 estimate). The
substantial majorities in all three communities reported an annual household
income less than $30,000 and Vietnamese residents reported a lower income
compared to the other respondents. They were also more likely to be unem-
ployed. The vast majority of all three Asian populations were foreign-born,
and among them, the majority had lived in the United States for more than
10 years. Compared to U.S. Asians, the study sample were more likely to be
recent immigrants and less likely to report English proficiency.

Key Health Outcomes

Results demonstrate specific health-related needs for Chicago’s Chinese,
Cambodian, and Vietnamese communities. An overview of major health out-
comes is presented in this section, with an emphasis on the topics that AHCI
and its partners have identified as areas of significant health concern.

Obesity and Diabetes

Although the overall prevalence of obesity is low among Asians, national
surveys indicate substantial variation in obesity between different Asian eth-
nicities (Barnes, Adams, and Powell-Griner, 2008). Survey respondents were
asked to report their weight and height and were considered obese if their
body mass index (BMI), calculated as weight in kilograms divided by height
in meters squared (kg/m2), based on standard CDC calculations for the U.S.
population, was 30 or greater.
Age-adjusted obesity proportions ranged from 2% among Vietnamese
respondents to 11% among Cambodian respondents (Table 5-3). These
obesity rates are approximately half that of the overall proportions for
Chicago (22%) and the United States (26%, not age-adjusted) (CDC,
2008). The Cambodian obesity prevalence was significantly higher than
the Chinese and Vietnamese proportions ( p < 0.05), but similar to the
national Asian estimate (9%). Such variation is consistent with national
surveys, indicating the need for disaggregating data for different Asian
nationalities.
In addition, studies have shown that the increased risk for cardiovascu-
lar disease, diabetes, and mortality may be more pronounced at lower BMI
values for some Asian populations (Bell, Adair, Popkin, 2002; McNeely and
Boyko, 2004; Shai et al., 2006; Wen et al., 2008), suggesting the need to
lower the BMI cut-off points to 25 kg/m2 for obesity (Deurenberg-Yap and
Deurenberg, 2003, World Health Organization Expert Consultation, 2004;
Razak et al., 2007; World Health Organization, 2009). In fact, when con-
sidering this lower cut-off point (BMI > 25), 40% of Cambodians, 33% of
110 IMPORTANCE OF LOCAL DATA

TABLE 5-3 Prevalence of Diabetes and Obesity Among Chinese, Cambodian,

and Vietnamese Residents Compared to U.S. Asians

Condition Chinese Cambodian Vietnamese U.S. Asians

% (95% CI) % (95% CI) % (95% CI) % (95% CI)

Obese (BMI 3.9 (1.9, 5.9) 11.4 (6.0, 16.8) 1.9 (0.2, 3.6) 8.9 (7.0, 10.8)
≥30 kg/
m 2)
Diagnosed 7.1 (4.3, 9.8) 12.0 (6.5, 17.5) 12.9 (8.5, 17.3) 8.9 (6.9, 10.9)
with
diabetes

Sources: Data are from the Chicago Asian Community Survey, 2006–2008; U.S. Asian data
come from National Health Interview Survey, 2007.
Notes: All estimates in this table are weighted and age-adjusted to the 2000 U.S. Census stan-
dard population. The 95% confidence interval estimates were calculated according to Keyfitz,
1966.

Chinese, and 20% of Vietnamese residents were considered be at increased

risk of poor health.
In recent years, the prevalence of diabetes among Asians has increased
more than other racial and ethnic groups, despite lower BMIs. Studies have
shown growing rates of diabetes among Asians, with even slight increases in
weight gain (McBeen, Gilbertson, and Collins, 2004; McNeely and Boyko,
2004, Shai et al., 2006). However, limited research exists to determine the
obesity and diabetes prevalence among U.S. Asian subgroups and its asso-
ciated social, cultural, and behavior risk factors. Far less is known about
Asians or Asian subgroups in an urban center like Chicago.
The survey asked several questions about diabetes and its associated risk
factors with the intention of providing these data to CBOs for improved health
programming in this area. Consistent with most national surveys, diabetes
was measured by asking whether respondents were ever diagnosed with the
condition. Table 5-3 presents the prevalence estimates for each Asian com-
munity surveyed compared to the United States.
Age-adjusted estimates of diabetes in the Cambodian and Vietnamese
communities were higher than the averages for the United States (8%,
BRFSS, 2001, not age-adjusted) overall and U.S. Asians (9%, NHIS 2007,
age-adjusted), despite very low rates of obesity. Of particular note, 13% of
Vietnamese respondents reported that they had ever been diagnosed with
diabetes, but only 2% of respondents were considered obese. The propor-
tion of obese respondents was lower among the Vietnamese compared to
the Cambodian and Chinese respondents. For all three Asian Surveys, the
diabetes prevalence was higher among women than men (data not shown).
The gender difference found in the Asian Surveys was consistent with
 Chicago Asian Community Surveys 111

other research demonstrating a more pronounced increased risk of diabetes

among women associated with BMI and weight gain (Shai et al., 2006).
Finally, participants who lived in the United States for more than 10 years
had a higher prevalence of obesity and diabetes compared with those who were
here for less than 10 years, again consistent with studies from national data
(Sanghavi-Goel et al., 2004; Oza-Frank, Stephenson, and Narayan, 2009).
In response to these data trends, the Asian Survey data now offer preva-
lence estimates for obesity and diabetes for a Cambodian, Chinese, and
Vietnamese communities in Chicago. It also draws attention to how obesity
rates should be interpreted for some Asian subgroups and what these rates
could mean to individuals who may be at increased risk of cardiovascular
disease and diabetes. Survey findings also detail other risk factor informa-
tion about diet- and nutrition-related to Asian specific foods that would be
meaningful to shaping community-based interventions that address diabetes
and other health problems in these Chicago Asian communities.

Cardiovascular Disease Risk Factors: Hypertension,

Cholesterol, and Smoking
Cardiovascular disease is the leading cause of death in the United States.
In addition to diabetes, the survey collected information on three of the most
important risk factors for cardiovascular disease: hypertension, high choles-
terol, and smoking. To assess hypertension, respondents were asked, “Have
you ever been told by a doctor, nurse, or other health professional that you
have high blood pressure or hypertension?” Respondents were also asked
about smoking. Based on the standard definition, “current smokers” were
defined by the proportion of respondents who have smoked at least 100 ciga-
rettes in their lifetime and smoke now. These cardiovascular disease ques-
tions matched the questions on the CDC’s BRFSS in an effort to ensure the
data was comparable to Chicago and U.S. figures.
The prevalence of hypertension ranged from 22% among Chinese respon-
dents to 28% among Vietnamese respondents (Table 5-4). All three commu-
nities reported proportions of hypertension that were higher than the U.S.
Asian estimate of 20% (NHIS, 2007). As expected, an increase in hyperten-
sion prevalence was also seen with older age: 24% of participants aged 50
to 65 years and 75% of participants 82 years and older reported hyperten-
sion. Interestingly, women were significantly more likely than men to report
high blood pressure (35% vs. 18%, not age-adjusted, univariate analysis).
This proportion is also double the national estimate for Asian women (15%,
BRFSS, 2005, not age-adjusted).
Although proportions reporting high blood pressure were higher than the
U.S. average for Asians, the proportions reporting high cholesterol were
lower. The prevalences of high cholesterol were 17%, 25%, and 26% for
112 IMPORTANCE OF LOCAL DATA

TABLE 5-4 Prevalence of Cardiovascular Disease Risk Factors Among

Participants

Condition Chinese Cambodian Vietnamese U.S. Asians

% (95% CI) % (95% CI) % (95% CI) % (95% CI)

Hypertension 22.1 (18.3, 25.7 (18.1, 28.4 (22.5, 19.5 (17.0,

25.9) 33.2) 34.3) 22.0)
High cholesterol 16.5 (13.3, 25.4 (18.4, 25.6 (20.9, 35.0 (33.3,
19.7) 32.4) 30.3) 36.7)
Current smoker 13.3 (9.7, 12.7 (7.4, 7.6 (4.4, 9.2 (7.4,
16.9) 18.0) 10.8) 11.0)

Sources: Chicago Asian Community Survey, 2006–2008; U.S. Asian data from National Health
Interview Survey, 2007 (for hypertension and current smoker) and Behavioral Risk Factor
Surveillance System Survey, 2005 (for high cholesterol).
Notes: All estimates in this table are weighted and age adjusted to the 2000 US Census stan-
dard population. The 95% confidence interval estimates were calculated according to Keyfitz,
1966.

Chinatown, Cambodian, and Vietnamese, respectively (Table 5-4). The pro-

portion of residents with high cholesterol from all three Asian communities
was significantly lower than the national average for Asians (35%).
Based on the 2007 National Health Interview Survey, the proportion
of Asian adults that smoke is half that of all adults in the United States
(20%, CDC, 2008, not age-adjusted). From the Asian Surveys, smoking
prevalence ranged from 8% among Vietnamese respondents to 13% among
Chinese respondents, compared to 9% for U.S. Asians (NHIS, 2007, age-
adjusted). Although estimates of current smoking in the Asian community
appear low, substantial disparities were found by gender. National Asian
data indicate that men are far more likely to smoke than women (16% vs.
4%, CDC, 2008). From the Asian Survey, 31% of Chinese and 26% of
Cambodian men were also more likely to smoke compared to only 2% of
Chinese women and 8% of Cambodian women. The smoking proportions
found among Asian men in these two Asian communities are higher than
those reported by other racial and ethnic groups nationally (except 37% of
NH American Indian/Alaska Native, CDC, 2008).

Health Insurance Coverage

In the United States, insurance coverage ensures appropriate use of health-
care services and, consequently, better health outcomes. Nationally, non-
elderly Asians are more likely to be uninsured compared to non-Hispanic
Whites. Where limited research on Asian subgroups exists, data indicate
some variation in insurance coverage by Asian subgroup (Kaiser Family
Foundation, 2008). The Asian surveys sought to determine the level of
 Chicago Asian Community Surveys 113

TABLE 5-5 Percentage of Chicago Asian Community Survey Participants with

Insurance Coverage by Community and Various Subgroups

Insured group Chinese Cambodian Vietnamese U.S. Asians

% (95% CI) % (95% CI) % (95% CI) %

18–64 years 51.1 (44.4, 57.7) 68.9 (59.8, 76.9) 69.9 (63.0, 76.2) 83
65 years and 92.0 (86.1, 95.9) 90.0 (76.5, 97.7) 95.3 (86.9, 99.0) 98
older
Male 47.2 (39.4, 55.2) 66.7 (52.5, 78.9) 71.8 (62.1, 80.3) —
Female 57.1 (50.0, 63.0) 80.2 (70.8, 87.6) 80.3 (72.9, 86.4) —

Sources: Chicago Asian Community Survey, 2006–2008; U.S. Asian data come from March
Current Population Survey, 2004–2006, three year pooled data.
Notes: Estimates in this table are not weighted by the sampling probabilities or age-adjusted to
a standard population. All 95% CI were calculated using Fischer’s Exact Methods.
Reference : Kaiser Family Foundation and APIAHF “Race, Ethnicity and Health Care” Fact Sheet,
April 2008.

health insurance in the three communities to better explain how Chinese,

Cambodians, and Vietnamese residents access and utilize health-care ser-
vices in Chicago.
Table 5-5 presents the prevalence estimates of health insurance for the
three Asian communities. Less than three-fourths of participants ages 18 to
64 years in all three communities reported some health insurance coverage.
The proportion of non-elderly adults who were uninsured was particularly
low among the Chinese population (51%). This was likely influenced by the
lower percent of respondents in this population with public insurance and
the higher proportion that were self-employed compared to Cambodian and
Vietnamese respondents (data not shown). Overall, men had lower insurance
coverage than women for all three Asian populations. In addition, given the
availability of public insurance for seniors, the proportion of respondents age
65 years and older who had insurance coverage was lower than expected in
the three surveyed communities.
The Asian Surveys also measured whether residents received culturally
and linguistically appropriate services, which is an important factor that
likely contributes to racial and ethnic disparities in access to health care.
For example, respondents were asked in what language they preferred to
communicate with their doctor. The vast majority of the Vietnamese pop-
ulation (89%) preferred to communicate in a language other than English
(Vietnamese), followed by 70% of Chinese (Mandarin or Cantonese) and
65% of Cambodians (Khmer). This is consistent with other survey find-
ings indicating that more than 80% of respondents spoke English “less than
very well.” Few had access to translator services and to compensate in the
Chinese community, survey data found that half of respondents reported that
114 IMPORTANCE OF LOCAL DATA

they “usually/always” brought a family member or friend to translate for

them. These findings have important overall implications to interventions
aimed at improving health and, specifically, to informing local health-care
delivery systems serving these Asian populations.

Utilization of Cancer Screening and Tests for Various

Infectious Diseases
One measure of how well individuals utilize health services is whether
they access routine health screenings. The survey thus assessed whether
Chinese, Cambodian, and Vietnamese residents had utilized routine cancer
screenings and screening tests for infectious diseases.
Survey results identified limited utilization of routine cancer screening as
a major health problem. For one, data were examined to determine whether
women age 40 years and older had received a mammogram within the last
2 years. Fewer than half of women from the Chinese and Cambodian sur-
veys reported that they had a mammogram in the last 2 years (Table 5-6).
These rates were about the same as that of U.S. Asians (54%) but substan-
tially lower than the overall U.S. rate (83%).
Screening for cervical cancer was also an important indicator of health.
Table 5-6 presents age-adjusted prevalence of women age 18 years and older
who had a Pap smear in the previous 3 years. Similar to mammography

TABLE 5-6 Prevalence of Diagnostic and Preventative Screenings Among

Chinese, Cambodian, and Vietnamese Participants

Chinese Cambodian Vietnamese U.S. Asian %

% (95% CI) % (95% CI) % (95% CI)

Had a mammogram 45.7 (43.8, 43.0 (34.3, 59.0 (53.2, 54.0 (47.1,
in last 2 yearsa 54.0) 50.0) 64.6) 60.9)
Had a Pap Smear in 43.1 (37.9, 48.4 (27.9, 69.8 (47.8, 63.9 (58.6,
last 3 years 48.2) 67.8) 85.3) 69.2)
Ever had a 23.3 (19.1, 31.0 (13.4, 28.7 (15.8, 34.2 (28.1,
colonoscopyb 28.1) 52.4) 44.2) 40.3)
Ever had an HIV test 13.4 (11.1, 24.8 (12.2, 26.1 (13.7, 30.9 (27.8,
15.7) 41.6) 39.6) 34.0)
Ever been tested for 59.0 (54.0, 69.5 (54.1, 87.7 (77.8, —
Tuberculosis 63.9) 86.7) 95.5)
Ever been tested for 17.9 (14.3, 13.3 (8.6, 29.2 (23.8, —
Hepatitis B† 22.1) 19.5) 35.1)

Sources: Chicago Asian Community Survey Project, 2006–2008; U.S. Asian data come from
Agency for Healthcare Research and Quality, National Healthcare Disparities Report, 2007.
Notes: Estimates are weighted and age adjusted to the 2000 U.S. population unless otherwise
noted (†). 95% confidence intervals were calculated according to Keyfitz, 1966.
a
Among women ≥ 40 years.
b
Among adults ≥ 50 years.
 Chicago Asian Community Surveys 115

utilization, less than half of Chinese and Cambodian women had a routine
cervical cancer screening. Cervical cancer screening in all three communi-
ties was low compared to the national average of 83% (BRFSS, 2002) and
U.S. Asians (64%). Consistent with national data for colon cancer screen-
ing, respondents ages 50 years and older were asked if they had ever had
a colonoscopy or sigmoidoscopy. Twenty-three percent of Chinese, 31% of
Cambodian, and 29% of Vietnamese adults reported a lifetime history of a
colonoscopy, compared to 34% of U.S. Asians and 62% of the overall U.S.
population (BRFSS 2008, not age-adjusted). For all three Asian popula-
tions, women were slightly more likely to report having had a colonoscopy
than men.
Finally, participants were asked if they had been tested for three infec-
tious diseases: HIV, tuberculosis, and hepatitis B virus (HBV). Only one-
fourth of Cambodian and Vietnamese respondents reported ever receiving
an HIV test; this number was even lower among Chinese residents. This is
in contrast to one-third of U.S. Asians (NHIS, 2007) who reported having
received an HIV test. The majority of respondents received a screening for
tuberculosis, but a lower percentage had been screened for HBV. Given the
well-documented increased risk of HBV for Asians, the low utilization of
HBV screening, particularly among Cambodian and Chinese residents, is
most concerning and highlights important work for community-based orga-
nizations serving these communities.

Mental Health and Quality of Life

Despite increased efforts to better evaluate minority health concerns, issues

of mental health and depression among Asians in the United States are poorly
understood (Ma, 2000; Collins et al., 2002). Cause-specific mortality data
has shown that suicide rates are far greater among Asians than Whites, espe-
cially among Chinese women (Liu and Yu, 1985; Yu, Chang et al., 1985).
Data suggest that Asians are less likely to seek help for their mental health
problems compared to Whites (Li et al., 1999; Takeuchi et al., 2007). There
are significant barriers to meeting their mental health needs, and one study
suggests that immigration factors such as age at immigration and time in the
United States are associated with mental health disorders (Takeuchi et al.,
2007). More research is needed to inform culturally appropriate interven-
tions to address those issues.
The mental health section of the survey included a shortened version
(10 items) of the Center of Epidemiologic Studies Depression Scale (CES-D)
(Radloff, 1977). The CES-D is a validated scale that covers a range of dif-
ferent types of depressive symptoms. An individual who responds positively
116 IMPORTANCE OF LOCAL DATA

TABLE 5-7 Mental Health Burden and Self-Rated Health among Chinese,
Cambodians, and Vietnamese

Characteristic Chinese Cambodian Vietnamese

% (95% CI) % (95% CI) % (95% CI)

CES-D 10 (score 15.1 (11.2, 19.0) 17.3 (10.6, 24.0) 13.6 (9.0, 18.2)
≥4)†
Responded posi- 83.9 (79.8, 87.5) 88.0 (81.7, 92.7) 63.2 (56.9, 69.2)
tive to at least
one depressive
symptom†
Self-rated health 36.9 (31.1, 42.7) 46.9 (36.7, 57.1) 46.2 (38.5, 53.9)
(fair/poor)

Sources: Chicago Asian Community Survey, 2006–2008.

Notes: Estimates are weighted and age-adjusted to the 2000 U.S. population unless otherwise
noted (†). 95% CI were calculated using Fisher’s Exact Method for the depressive symptoms.
Self-rated health 95% confidence intervals were calculated according to Keyfitz, 1966.

for at least four questions of the shortened version is considered to be

experiencing depressive symptoms, and it suggests that they have a high
mental health burden (Whitman, Williams, and Shah, 2004). Nationally,
20% of Black and White adults scored above the threshold for depression
(16 or higher on the 20-point CES-D scale) (Jones-Webb and Snowden,
1993).
The majority of participants reported at least one depressive symptom in
all three communities (Table 5-7). High mental health burden was observed
among 15% Chinese, 17% Cambodian, and 14% Vietnamese respondents.
Recent immigrants (those who have lived in the United States for less
than 5 years) and those with lower household income (less than $30,000)
reported higher mental health burden. Overall, CES-D scores suggest a
low burden of mental health; participants in all three surveys reported an
average of two depressive symptoms.
Using one last question to assess quality of life, respondents were asked
to assess their own health as “excellent,” “very good,” “good,” “fair,” or
“poor.” Studies have shown that one’s perception of their own health is pre-
dictive of subsequent mortality (Idler and Benyamini, 1997; Benyamini and
Idler, 1999; McGee et al., 1999). From the Asian Surveys, 37% of Chinese,
47% of Cambodian, and 46% of Vietnamese respondents reported that their
health was “fair” or “poor” (Table 5-7). These proportions were all signifi-
cantly higher than national estimates for U.S. Asians (11%, NHIS, 2007, age-
adjusted). In general, survey findings offer insight into mental health status
and quality of life of some Asian communities in Chicago. The data suggest
that many are not enjoying life to its fullest and may be experiencing some
 Chicago Asian Community Surveys 117

underlying burden of disease that is not captured by health outcomes mea-

suring disease prevalence only.

Dissemination

AHCI and its partners committed to using data collected from the Asian
surveys in a wide variety of public contexts. The key results described here
are only a small fraction of the data available and are intended to provide
a sample of the type of information now available for Chinese, Cambodian,
and Vietnamese communities in Chicago. To translate these data into mean-
ingful programs, several steps were taken to publish and disseminate the
Asian Survey findings. Since completing these Asian Surveys, findings have
been presented at national conferences, meetings of Chicago community-
based organizations, and in public health journals.
Preliminary results from the first few months of the project were presented
to the 2007 American Public Health Association (APHA) meeting (Guo et al.,
2007, Magee et al., 2007; Shah et al., 2007) and to the 2007 National HIV
Conference hosted by the CDC (Magee et al., 2007). In 2008, preliminary
findings from the final surveys were presented to the annual APHA meeting
(Shah et al., 2008; Cheung et al., 2008) and the International Conference on
Urban Health (Guo et al., 2008). Additionally, AHCI and its partners have
presented community specific survey results to each of its community-based
organization partners, Northwestern University Medical School, University
of Illinois at Chicago School of Public Health, and DePaul University.
In addition, as this chapter is being written, a summary report highlight-
ing key findings is being prepared for dissemination to Asian communities
in Chicago (The Asian Health Coalition of Illinois, 2010). The report aims
to serve as a resource for CBOs writing grants and shaping their community
efforts to prevent disease and improve health in the Chinese, Cambodian, and
Vietnamese communities of Chicago. The hope is that it will also inspire other
Asian subgroups to implement similar health surveys in their neighborhoods.
Bringing appropriate resources to the Asian communities surveyed was
also an important goal of the project. Demonstrating the community’s spe-
cific health needs through scientific surveys was an important first step toward
raising local public health funds. Publishing the survey findings in scientific
journals is an important means to reach this goal of the project. To date, one
article has been published in the International Journal of Health and Aging
Management (Simon et al., 2008) and another accepted for publication in
The Journal of Urban Health (Shah et al., Forthcoming). Future publications
will focus on specific health topics—namely, diabetes, cancer screening, and
access to care.
118 IMPORTANCE OF LOCAL DATA

Challenges and Lessons Learned

The process of developing and carrying out the Asian Surveys demonstrated
many valuable lessons to the stakeholders involved. Although the project was
overwhelmingly successful from the perspective of the community mem-
bers and CBO staff, this success required overcoming challenges. Those that
might be useful to consider for others embarking on such local health sur-
veys are described here.
First, the project was directly funded by three distinct types of agencies.
AHCI was responsible for seeking grants to fund all aspects of the survey
project and did so by submitting grants to the state government, a local non-
profit service organization, and a national nonprofit research organization.
Each supporting agency had different grant requirements, and AHCI had to
balance the agencies’ funding priorities, reporting mechanisms, and schedu
les. As a result, the project demanded significant administrative efforts from
AHCI, and project staff was required to fill various roles. Additionally,
because the project was funded by three agencies over a period of 2 years,
the Asian Survey project did not have funding for an interval of four months
in 2007 and had to suspend data collection. Future health surveys admin-
istered would benefit if the funding stream came from one principal donor
(similar to the Sinai Survey, Chapter 4).
Second, attempting to employ rigorous scientific research methodolo-
gies was challenging for CBOs that focused on providing direct services.
The three CBOs that partnered in this project had strong organizational
histories of serving their communities and were committed to the Asian
Survey project. Although they provided invaluable input to the survey
design and administration, their staff often had competing priorities
and other existing programs running concurrently to the Asian Surveys.
Without sufficient resources to support additional staff and/or time away
from their existing work, the CBO staff was pulled in several directions.
Employing scientific methods to capture a representative survey sample
required agencies to develop research infrastructure. For future surveys,
it will be important to sufficiently fund and support CBOs to partner in
such endeavors.
Finally, AHCI’s extraordinary effort to capture the health status of the
Cambodian and Vietnamese communities in Chicago is notable. They are
commended for their innovative approach to adapting RDS methodology
because these populations were so disperse and spread out. The novelty of
the RDS approach was conducive, for the most part, to meeting the objectives
of the Asian Surveys, although it had never been used before in this context.
Validation of RDS was not one of the objectives of the survey project, and
determining appropriate sample size estimates and analytic techniques for
 Chicago Asian Community Surveys 119

the RDS methods remains a limitation. Nevertheless, the Cambodian and

Vietnamese surveys represent the first documented effort to adapt RDS in a
community setting beyond its traditional sampling purposes. More research
is needed to understand the feasibility of using RDS methodology for other
community health surveys.

Conclusions

The Chicago Asian communities are ethnically and culturally diverse, con-
tinue to increase in population, and contribute significantly to the city’s
prosperity. The monitoring of health status and development of adequate
health programming are fundamental public health processes essential to
creating sustainable and healthy communities for Asians in Chicago. The
Asian Survey project sought to assess and accurately document the general
health status of three specific Asian subgroups. AHCI and its partners suc-
cessfully implemented the Asian Surveys with strong community input and
participation.
The Asian Surveys identified several areas of health concern for the
Chinese, Cambodian, and Vietnamese populations. The prevalence of dia-
betes was found to be high, especially among Asians who have lived in the
United States for more than 10 years. Another concern highlighted in this
chapter was the prevalence of risk factors for cardiovascular disease (e.g.,
hypertension, smoking, and cholesterol) found in the three Asian commu-
nities. The cardiovascular disease risk factors were particularly concern-
ing among men surveyed. Despite the prevalence of health risk factors, the
reported practice of receiving preventative health screenings was low for the
Chinese, Cambodian, and Vietnamese communities. Next, access to care
was discussed as a widespread concern for the Asian communities. Finally,
survey results suggest that the burden of mental health issues and depression
is an area of concern for the surveyed populations.
The Asian Surveys stimulated much discussion and interest from other
communities that wanted to conduct research in similar populations. More
research is needed to understand the feasibility of using RDS methodology
for community research.
The results of the project have already made important contributions
to documenting the health needs of Chicago’s Chinese, Cambodian, and
Vietnamese communities and will continue to be used to leverage support
for developing an appropriate program and policy response. The use of
local level data to bring awareness, garner financial support, and implement
programs targeted at specific health concerns constitutes an empowering
and sustainable process for communities. Most importantly, the process of
120 IMPORTANCE OF LOCAL DATA

collecting and disseminating data has the potential to improve the health of
individuals at the local community level.

Acknowledgments

Many persons and organizations were instrumental to the planning, imple-

mentation, and documentation of the Asian health surveys. The authors
would first like to thank the staff of Asian Health Coalition of Illinois
for their contributions—namely, William Cheung and Sandhya Krishnan,
Project Coordinators. Implementing the surveys in each respective commu-
nity would not have been possible without the executive directors and staff
at the Chinese American Service league, Cambodian Association of Illinois,
and Chinese Mutual Aid Association. In addition, the tireless work of the
project interviewers who were critical to the survey’s success, particularly
Tola Chuon and Sarouen Soeun from the Cambodian Association of Illinois
and Huy Tran from the Chinese Mutual Aid Association. Additional sup-
port was also provided by Survey Research Laboratory of the University of
Illinois at Chicago, most notably Karen Retzer, Ingrid Graf, and Timothy
Johnson. Finally, the staff of Sinai Urban Health Institute played a critical
role assisting with all data management and entry, notably Sheena Freeman.

Notes

1. The authors recognize the importance of including and defining Asian, Asian American,
and Asian and Pacific Islander American correctly; moreover, they know that individ-
uals conceptualize and characterize their race and ethnicity differently. The Chicago
Asian Community Surveys focused on Chinese, Cambodian, and Vietnamese popula-
tions, and this chapter uses the term Asian to describe these three races. However, the
authors intend this term to be inclusive of persons who consider their race to be Asian,
Asian American, Asian and Pacific Islander American, or a combination of these and
other races. The term Asian is used for brevity and to avoid repeating acronyms.
2. In addition, as this chapter is being written, a summary report highlighting key fi nd-
ings is being prepared for dissemination to Asian communities in Chicago.
3. To date, one article has been published in the International Journal of Health and
Aging Management (Simon et al., 2008), and additional articles are under review.

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6
COMPARING THE HEALTH STATUS OF
TEN CHICAGO COMMUNITIES

Ami M. Shah

Introduction

Over the course of 6 years, survey data—the first of its kind—were gathered
from 10 local communities in Chicago (Shah and Whitman, 2010; Benjamins,
2010; Magee et al., 2010). Each survey captured the health status of diverse
racial and ethnic populations living in different geographic areas of the city.
The data helped highlight health concerns and risk factors associated with
distinct communities and explain how a given population experienced health.
The community health surveys responded to the need for local level data in
urban centers (Simon et al., 2001), offering pertinent information on how to
shape community-based interventions and bring greater resources to poor
and underserved neighborhoods.
In addition to understanding the health of individual communities, com-
paring the health of different communities within a given city proved to be
an important strategy for uncovering and examining disparities. Such intra-
urban study offers insight into a population’s health in relative terms (Galea
and Schulz, 2006). It reflects the manner in which health is experienced
and resources are optimally allocated, which in turn affects overall health
outcomes.
This chapter has three goals. First, it briefly compares and contrasts the
methods and approaches employed to conduct ten community health sur-
veys in Chicago. Second, it examines five key results for the diverse com-
munities surveyed. Third, the chapter illustrates the value of the community
125
126 IMPORTANCE OF LOCAL DATA

survey data and comments on its implications for broader policies and pro-
grams in striving toward equitable health for all racial and ethnic groups
within an urban setting.

Background

The city of Chicago is divided into community areas (CAs). In the 1920s,
sociologists from the University of Chicago defined 75 CAs roughly corre-
sponding to generally recognized neighborhoods existing at that time. Since
then, there have been two revisions. The O’Hare airport area was annexed
by the city and one community area was divided into two. Today there are
77 officially designated Chicago CAs (The Chicago Fact Book Consortium,
1995). CAs often serve as loci for describing health in Chicago, implement-
ing community-based interventions, and allocating public health resources.
The boundaries of the CAs are aligned with Census tracks and some sur-
veillance health data. For example, data from vital records and communi-
cable disease registries can be geocoded to the CA level and have shown
substantial variation in health outcomes between some CAs (Whitman et al.,
2004). However, disease prevalence and risk factor data are not available at
the community area level. Such information would describe health behaviors
and other more recently defined social determinants of health. It would offer
suggestions about the causes of poor health and insight into where and how
to develop effective community-based interventions. Although such informa-
tion would be valuable, it is rarely available.
In response to the need for such local data, a comprehensive health survey
was first conducted in six diverse Chicago communities. The communities
were selected for study based on the homogeneity of their racial and ethnic
demographics, their geographic location, and the community’s demand for
local health data. This survey, called the Sinai’s Improving Community Health
Survey (Sinai Survey), was one of the largest population-based, door-to-door
community health surveys in Chicago. The original survey, funded by The
Robert Wood Johnson Foundation, was administered in 2002 to 2003 in six
Chicago community areas. As detailed in Chapter 3 (Shah and Whitman, 2010),
the Sinai Survey was implemented by the Sinai Urban Health Institute (SUHI)
and its many community partners. More specifically, the Sinai Survey captured
the health of a White community on the north side (Norwood Park), two pre-
dominantly Black communities (North Lawndale and Roseland) on the west
and south sides, and a predominantly Mexican community (South Lawndale).
Also included are two racially/ethnically mixed communities (Humboldt Park
and West Town), which house the largest concentration of Puerto Ricans in
Chicago. Figure 6-1 presents a map of these geographic areas.
 Comparing the Health Status of Ten Chicago Communities 127

9 1
2
12
77
0
10 13 N
11
76 4
14 3
0
15 16
17 5
6
21
18 19 20 22 7
Lake
24
Michigan
23 8
25

26 27 32
28

29 33
31 34
Sinai Community Health Survey 30 60 35
10. Norwood Park 59
23. Humboldt Park 58 36
24. West Town 57 38
61 39
37
29. North Lawndale
30. South Lawndale 56 62 63 40 41
49. Roseland 64 42
67 68
65 66
69 43
Jewish Community Survey
2. West Ridge 70 71 45
44 46
13. North Park
47 48

Asian Community Health Survey 72 73

3. Uptown 49 50 52
14. Albany Park 74 0
75 51
34. Armour Square
53 55
54

Figure 6-1 Chicago’s 77 Community Areas: Chicago Communities with Local Area
Health Survey Data

As preliminary findings from the Sinai Survey were disseminated, the

value of local health information became apparent to other communities.
To begin, the Jewish Federation of Metropolitan Chicago was inspired by
the impact of the Sinai Survey to pursue a similar health assessment for
its community in 2003. The Federation, which is the largest not-for-profit
social welfare institution in Illinois and the hub of Chicago’s Jewish com-
munity, convened Jewish community leaders and members to design a
Jewish Community Health Survey (Jewish Survey), as detailed in Chapter
4 (Benjamins, 2010). They identified the geographic area with the largest
concentration of Jewish individuals to be surveyed, selecting several neigh-
borhoods that crossed two Chicago community areas: North Park and West
Ridge (Fig. 6-1).
128 IMPORTANCE OF LOCAL DATA

Similarly, the Asian Health Coalition of Illinois witnessed the usefulness

of local data and took the initiative to gather data about three Asian com-
munities (Chapter 6). First, they worked with community partners to target
Chicago’s Chinatown, which is part of the Armour Square CA, comprised
of the largest concentration of Asians in Chicago. Thereafter, another survey
was designed to be administered to the Cambodian population in Albany Park
and the Vietnamese population in Uptown. These Asian communities were
smaller in overall population size and were less concentrated within a given
geographic area. To obtain a random sample of these populations, unique
recruitment methods were employed in partnership with community-based
organizations. From 2006 to 2008, a local health survey was administered by
the Chicago Asian Community Surveys (Asian Survey) project in these three
Asian communities, capturing the health of the Chinese, Vietnamese, and
Cambodian populations residing in Armour Square, Uptown, and Albany
Park, respectively (Magee et al., 2010).
In the end, surveys were completed in 10 Chicago communities (Fig. 6-1).
Although the designated Chicago CA boundaries may not always be con-
sistent with the distinct racial and ethnic group’s community, or neigh-
borhood, they are important to geocoding existing health data. For these
purposes, they simply provide a context to understand the surveyed popula-
tion. Table 6-1 outlines the designated Chicago CAs and the unique racial
and ethnic group represented by each survey.

TABLE 6-1 Racial and Ethnic Groups Represented Within the Selected
Chicago Community Areas

Survey Chicago Community Area Predominant Racial/

Surveyed (Colloquial Names) Ethnic Group

Sinai’s Improving Humboldt Park 50% Black,

Community Health 25% Puerto Rican,
Survey, 2002–2003 25% Mexican
West Town 50% White,
25% Puerto Rican,
25% Mexican
South Lawndale (Little Village) Mexican
North Lawndale Black
Roseland Black
Norwood Park White
Jewish Community North Park/West Ridge ( West White, Jewish
Health Survey, 2003 Rogers Park/Peterson
Park)
Chicago Asian Armour Square (Chinatown) Chinese
Community Health Albany Park Cambodian
Surveys, 2006–2008 Uptown Vietnamese
 Comparing the Health Status of Ten Chicago Communities 129

Methods

From 2002 to 2008, four major surveys were designed and implemented to
gather health data about 10 communities: the Sinai Survey, Jewish Survey,
Chicago Asian Chinese Survey, and the Chicago Asian Cambodian/Vietnamese
Surveys. Roughly two-thirds of the survey instruments had questions with
identical wording, comparable to national health surveys (e.g., Behavioral
Risk Factor Surveillance System [BRFSS] Survey, National Health Interview
Survey [NHIS]). The remaining questions were culturally appropriate and
sensitive to the unique histories and health concerns of the specific commu-
nity. All of the health surveys were comprehensive and asked questions about
disease prevalence and various risk factors, although some included more
questions than others. For example, the Sinai and Jewish Surveys included
about 500 questions, comprised of an adult and child module, and took a little
over 1 hour to complete. They were conducted using computer-assisted pro-
gramming (CAPI). The three Asian surveys included between 160 and 200
questions, comprised of an adult module only, and took about 45 minutes to
complete. They were administered by hand (i.e., paper surveys) and face-to-
face by trained interviewers. They were offered in several different languages,
each appropriate to the community surveyed. Although the Cambodian and
Vietnamese Surveys were administered in different languages, they had iden-
tical questions and employed the same methodology. Table 6-2 compares and
contrasts the different methods employed.
The sampling scheme shaped how the survey would be administered. It
also determined what geographic and racial and ethnic population the sample
selected would represent. For the Sinai Survey, individuals were selected to
participate based on age (18–75 years) and place of residence. Although the
survey instrument included questions on race and ethnicity, these data were
not used as criteria for survey participant eligibility. The Sinai Survey data
are thus representative of the population defined by the geographic boundar-
ies of each Chicago CA.
The Jewish and Asian surveys had slightly different sampling schema.
Inclusion criteria were based not only on age (18 years and older) and place
of residence but also on self-identification to a specific religious group and/or
nationality (e.g., place of origin). For these surveys, the data are representa-
tive of a population that self-identified as Jewish, Cambodian, or Vietnamese
living within a defined geographic area or neighborhood.
In addition, the size of the population was considered when determining
how best to locate individuals to be surveyed. For example, in conducting
the Sinai, Jewish, and Chinatown Surveys, there were enough individu-
als to be surveyed with a common racial and ethnic or religious back-
ground who lived within a relatively small geographic area. These areas or
TABLE 6-2 Comparison of Chicago Community Health Survey Methods: Survey Instrument, Sampling Frame, Data Collection,
Administration and Analysis

Sinai’s Improving Jewish Community Chinese Asian Survey, Cambodian and Vietnamese
Community Health Health Survey, 2003 2006–2008 Asian Surveys, 2006–2008
Survey, 2002–2003

Survey Adult module included Adult module included Adult module only, 159 Adult module only, 203
instrument 469 questions, child 475 questions, child questions questions
module included 100 module included 100
questions questions
Sampling Three-stage probability Three-stage probability Three stage probability sam- Respondent-Driven Sampling;
frame sampling design from sampling design from pling design from four Two “seeds” (individuals
six Chicago commu- designated blocks with tracts with highest concen- selected to initiate the survey)
nity areas (Humboldt high concentrations of tration of Asians (>50%) identified for Cambodian pop-
Park, Norwood Park, Jewish families in two in the Armour Square ulation and four “seeds” for
North Lawndale, Chicago community community area; From Vietnamese population using
Roseland, South areas (West Rogers these combined tracts, common surnames from the
Lawndale and West Park and Peterson Park) selected random blocks telephone book
Town) and all households were
approached
Final data Population living in A Jewish population An Asian population living A Cambodian and Vietnamese
represent the designated living in the designated in the designated block population living in the des-
community area block area between area, which comprises ignated community area of
surveyed West Rogers Park and Chinatown, assumed to be Albany Park and Uptown,
Peterson Park predominantly Chinese respectively
Eligibility 18–75 years of age; 18 years and older; 18 years and older; 18 years and older;
Resided in one of the Self-identified as Jewish Self-identified as Chinese Self-identified as Cambodian
six selected commu- or Asian, and lived in the or Vietnamese; Proof of
nity areas Armour Square commu- residency in Albany Park or
nity for at least the last six Uptown based on zip code,
months respectively; Presented with a
valid study coupon from a
referring participant (starting
with the seeds)
Survey Interviewed in English Interviewed in English Interviewed in English, Interviewed in English, Khmer,
administra- or Spanish; only; Mandarin, and Cantonese; Vietnamese, or Cantonese;
tion Participants received on Participants received $20 96% of interviews conducted Participants received $20, plus
average $50 along in Mandarin or Cantonese; $5 for each of the three
with a packet of Participants received $20 coupons that resulted in
health information another survey participant
(maximum $35)
(Continued)
TABLE 6-2 (Continued)

Sinai’s Improving Jewish Community Chinese Asian Survey, Cambodian and Vietnamese
Community Health Health Survey, 2003 2006–2008 Asian Surveys, 2006–2008
Survey, 2002–2003

Data Face-to-face interviews; Face-to-face interviews; Face-to-face interviews; Collected face-to-face by hand
collection Gathered data using Gathered data using CAPI Data gathered by hand (paper-surveys) between
CAPI between between August 2003 (paper-surveys) between September 2007 and March
September 2002 and and January 2004; November 2006 and 2008;
April 2003; Completed 201 inter- January 2007; and June Completed 150 interviews
Completed 1,699 inter- views with Jewish 2007 and March 2008; with Cambodian adults
views with adults and adults and 57 caregiv- Completed 385 interviews within 13 waves over 12
811 interviews with ers of Jewish children; with Asian adults; weeks; 250 interviews with
caregivers of children; Response rate = 51% Response rate = 67% Vietnamese adults within 35
Response rate = 43% waves over 21 weeks
Data analysis Employed probability of Employed probability of Employed probability of Employed weights based on
selection and post- selection weights selection weights social network size
stratification weights
based on sex, age,
and race of 2000 U.S.
Census
 Comparing the Health Status of Ten Chicago Communities 133

neighborhoods were well-defined (either by Chicago CA boundaries or by a

community organization). From the designated geographic area, randomly
selected blocks, households, and individuals were then selected. This, how-
ever, was not the case for the Cambodian and Vietnamese surveys. These
populations were relatively small and not as concentrated in one geographic
area. Thus, a unique sampling technique, respondent-driven sampling, was
employed to obtain (what is as close as possible to) a representative sample
of these minority populations. The final data gathered from these surveys are
representative of the Cambodian and Vietnamese populations within the zip
codes defined as part of the inclusion criteria. Additional details about each
survey methodology employed are available in earlier chapters of this book
(Shah and Whitman, 2010, Benjamins, 2010, Magee et al., 2010).
Statistical software was used to adjust for effects of the complex sampling
design for the Sinai Survey, the Chinatown Survey, and the Jewish Surveys (SAS
Institute Inc., 2004; Stata Corporation, 2003). All estimates were weighted for
the probability of selection. The Sinai Survey also included a post-stratification
weight to ensure that the sample resembled the distribution of age, sex, and race
from each CA’s population according to the 2000 U.S. Census. Post-stratification
weights were not employed for the Jewish and Asian surveys because no reli-
able comparable data for such groups were available. Data from the Cambodian
and Vietnamese surveys were analyzed using Respondent Driven Sampling
Analyses Tool (RDSAT) version 5.6 (Volz et al., 2007). These survey data were
weighted to respondents’ social network sizes to obtain a population based rep-
resentative sample within each specified geographic area.
All data presented are age-adjusted to the 2000 U.S. Standard Population.1
Ninety-five percent confidence intervals (CIs) were estimated for all response
items using statistical software, when possible, and by hand according to
Keyfitz estimation (Keyfitz, 1966) when not possible. Two proportions were
deemed statistically different from one another if their CIs did not overlap.

Comparison and Interpretation of Survey Results

Demographic Characteristics

Table 6-3 presents the demographic characteristics of the 10 communities

surveyed. For all the data tables that follow, the 10 communities are pre-
sented in a specific order based first on completion of the survey (i.e., Sinai
Survey, Jewish Survey, and Asian Surveys) and second by their racial and
ethnic composition. A brief description of each follows.
First, there are two racially and ethnically diverse communities of
Humboldt Park and West Town (Table 6-1). They increasingly face urban
TABLE 6-3 Demographic Characteristics of Ten Chicago Communities Survey, 2002–2008

Community Humboldt West South North Roseland Norwood West Ridge Armour Albany Uptown
Area Park Town Lawndale Lawndale Park and North Square Park
Park

Total Population 65,836 87,435 91,071 41,768 52,723 37,669 270,500a 7318b 10199b 8206b
Sample Size 300 303 300 304 302 190 201 368 150 250
Race/Ethnicity (%)
NH White 3 40 10 1 0 88 100 — — —
NH Black 47 9 6 94 98 0 — — — —
Hispanic- 25 25 77 1 0 2 — — — —
Mexican
Hispanic- 18 17 1 0 0 1 — — — —
Puerto
Rican
Asian-Chinese — — — — — — — 100 — —
Asian- — — — — — — — — — 100
Vietnamese
Asian- — — — — — — — — 100 —
Cambodian
Female (%) 52 47 39 58 56 52 52 56 64 59
Age (%)
18–44 yrs 68 75 78 63 54 50 39 29 49 29
45–64 yrs 24 22 19 30 30 39 41 34 33 46
65+ yrs 8 3 3 7 16 12 21 37 17 26
Annual household
income (%)
<$30,000 65 47 70 73 53 5 14 69 60 81
$30,000– 31 37 27 26 35 50 38 31c 40c 19c
69,999
≥$70,000 4 16 3 1 11 46 47 — — —
High school gradu- 60 75 44 74 78 96 99 46 45 49
ate or higher (%)
Unemployed (%) 47 33 38 49 53 34 40d 18 38 59
Foreign-born (%) 34 31 71 1 1 20 20 93 80 100

Sources: Total Population estimates come from the 2000 U.S. Census; Sinai’s Improving Community Health Survey 2002–2003; Jewish Community Health
Survey 2003; Chicago Asian Health Surveys, 2006–2008.
Notes: All data are weighted for the probability of selection to account for the complex survey design. The Sinai Survey also includes poststratification weights
based on the 2000 U.S. Census.
Sinai survey respondents had a maximum age of 75 years.
Percentages may not add up to 100 because of rounding.
Race/Ethnicity categories do not include other Hispanic, Hispanic Origin Unknown, or Other from the Sinai Survey.
Race/Ethnicity was self-reported as part of the screener to determine eligibility for the Jewish and Asian Surveys.
a
Approximate number of Jews in the Chicago metropolitan area.
b
Estimates for Asians from 2000 U.S. Census.
c
Estimates include those making ≥ $70,000; Only data above and below $30,000 are available.
d
Estimate for unemployed does not distinguish retired persons.
136 IMPORTANCE OF LOCAL DATA

redevelopment and gentrification, along with the influx of immigrants,

resulting in a change in population demographics. A greater proportion
of households in Humboldt Park had an annual household income of less
than $30,000 compared to its contiguous community of West Town. West
Town has already gentrified, with about half of its population being younger
White adults with an annual household income greater than $30,000.
The following four communities shown in Table 6-3 are racially and ethni-
cally homogenous. These include South Lawndale (mostly Mexican), North
Lawndale and Roseland (mostly Black), and Norwood Park (mostly White).
To distinguish the two Black communities, North Lawndale is on the west
side of the city, where SUHI is located, and is one of the poorest commu-
nities surveyed. Roseland is on the south side of Chicago, older, and has a
higher socio-economic status than North Lawndale.
Norwood Park is on the north side of Chicago and has the one of the
highest proportions of adults in Chicago with an average household income
greater than $70,000. The other mostly White group is the Jewish com-
munity that includes portions of two officially designated CAs: North Park
and West Ridge, often referred to as “West Rogers Park and Peterson Park”
among local residents. This community is also older than the other minority
(non-White) communities, like Norwood Park. Jewish residents surveyed in
North Park and West Ridge are similar in income and education to resi-
dents of Norwood Park. However, although not shown here, because the
majority of the Jewish residents surveyed were Orthodox Jews, the house-
holds tended to have a larger-than-average family size. Thus almost half
reported having insufficient funds for several basic needs, such as health
care and education (Benjamins, 2007). The overall socio-economic status
of the Jewish community, when taking the household composition into con-
sideration, may not be as high as assumed at first glance, especially when
compared to Norwood Park.
Finally, the three Asian communities are shown (Table 6-3). The Chinese
population surveyed had the greatest proportion of older adults compared
with any other community, and the Cambodian population tended to be youn-
ger than the other Asian populations. The Vietnamese population was by far
the poorest of all 10 communities, with 81% of the population reporting an
annual household income of less than $30,000. In addition, they reported the
highest proportion of adults who were unemployed (59%) and foreign-born
(100%).

Five Key Health Measures

Although there were literally hundreds of different health measures on the

surveys, five key health outcomes were selected for illustrative examination
 Comparing the Health Status of Ten Chicago Communities 137

and comparison: health insurance, obesity, diabetes, smoking, and breast

cancer screening. These were selected to represent common measures of
chronic diseases, health behaviors, and access to services. Health data are
presented for each community surveyed and compared to Chicago or U.S.
estimates, depending on what was available.

Health Insurance Coverage

Individuals without health insurance are less likely to have a usual source
of care, to use preventive or specialty services, to obtain needed prescrip-
tion medications, or to receive high-quality services. As a result, they are at
increased risk of poor health outcomes and death. There were several ques-
tions included on the community surveys about access to health services.
For these analyses, data on health insurance coverage were examined. All
respondents were asked, “Do you currently have any type of health insurance
or medical coverage?” This is a standard question used in national surveys
(e.g., BRFSS, NHIS, and Medical Expenditure Panel Survey [MEPS]). Figure
6-2 presents the proportions of individuals ages 18 to 64 years who reported
that they currently had any type of insurance coverage for each of the 10
communities.
The proportion of non-elderly residents (ages 65 years and younger) with
health insurance ranged from 50% among Mexicans in South Lawndale to
95% among Jews in North Park/West Ridge. In fact, the proportion with
health insurance coverage in the two White communities was significantly

100
Chicago BRFSS 2002, 73%
90

80

70

60
Percent

50
93 95
40
74
70
30 63 61 64
50 52 54
20

10

0
Humboldt West South North Roseland Norwood N.Park & Armour Albany Uptown
Park Town Lawndale Lawndale Park West Ridge Square Park

Community Area

Figure 6-2 Proportion of Non-Elderly Adults with Insurance in Ten Chicago

Communities
138 IMPORTANCE OF LOCAL DATA

higher than all of the other non-White communities and the Chicago esti-
mate (73%, p < 0.05) (Shah, Whitman, and Silva, 2006). Communities with
the largest immigrant population had the lowest insurance coverage—that
is, a little more than half of the residents in Asian communities, who were
primarily foreign-born (Table 6-3), had insurance coverage (52%–64%, Fig.
6-2). These data are comparable to the other immigrant communities of
South Lawndale (50%) and Humboldt Park (63%).
Racial and ethnic disparities in insurance coverage also exist nationally.
The factors that influence disparities nationally are likely to be contributing
to disparities observed between these Chicago communities. For example,
cost is a major barrier to insurance coverage. Many minority populations
who cannot afford private insurance may make too much money or may be
without appropriate immigration paperwork to be eligible for public insur-
ance programs. Another important factor is that non-Whites are less likely to
have employee-sponsored insurance. For example, although more than half
of the adults in South Lawndale are employed, only half had some form
of insurance coverage. These results on insurance coverage have important
implications for interpreting data on health outcomes, as described below.

Obesity
Obesity is a risk factor for adult-onset diabetes, coronary heart disease,
and several other serious medical conditions that can lead to poor health and
premature death (Must et al., 1999; Kenchaiah et al., 2002; Fontaine et al.,
2003; American Obesity Association, 2005). To assess the prevalence of
obesity for these communities, all of the health surveys asked respondents to
report their height and weight. Data were used to calculate body mass index
(BMI), a measure of weight-for-height commonly applied to classify under-
weight, overweight, and obesity in adults (Centers for Disease Control and
Prevention [CDC], 1998). For these analyses, adults with a BMI of 30 kg/m2
or greater are categorized as being obese and are presented in Figure 6-3.
About one-fourth of adults in the United States are obese, and these esti-
mates vary by racial and ethnic group and geographic region (Ford et al.,
2005; CDC, 2006). The prevalence of obesity in the 10 surveyed communities
in Chicago ranged from 2% to 41% (Fig. 6-3), with several significant differ-
ences among communities. Over one-third of the population was found to be
obese in five of the communities, which were predominantly low-income and
African American or Hispanic. These percentages were significantly higher
than the obesity prevalence in the three Asian communities and the White
community of Norwood Park ( p < 0.05), and higher than the Chicago aver-
age (22%). Specifically, residents in North Lawndale reported the highest
prevalence of obesity (41%), followed closely by residents in Roseland (39%).
The two predominantly White communities (Norwood Park [21%] and North
 Comparing the Health Status of Ten Chicago Communities 139

50
Chicago BRFSS 2002, 22%
45

40

35

30
Percent

25

20 41
39
36 36
15 29

10 21 22

5
11
4 2
0
Humboldt West South North Roseland Norwood N.Park & Armour Albany Uptown
Park Town Lawndale Lawndale Park West Ridge Square Park
Community Area

Figure 6-3 Obesity Prevalence in Ten Chicago Communities

Park/West Ridge [22%]) revealed obesity prevalence that was about half as
high as this, similar to Chicago and national survey estimates.
Obesity rates also varied among the three Asian communities. The low-
est proportion of individuals classified as obese were in the Vietnamese and
Chinese communities, with proportions of 2% and 4%, respectively. Nationally,
Asians report lower BMI estimates. However, there is evidence that cardio-
vascular disease, diabetes, and mortality associated with increased weight-for-
height are far greater at lower BMI cut-offs for some Asian groups (Bell, Adair,
and Popkin, 2002; McNeely and Boyko, 2004; Shai et al., 2006; Wen et al.,
2008). The standard BMI cut-off for obesity (BMI ≥ 30 kg/m2) may underesti-
mate the risk for increased morbidity and mortality and thus have been recom-
mended to be revised (World Health Organization Expert Consultation, 2004;
Razak et al., 2007). Note that these revisions are in need of further study as it
is still unclear whether all Asians or only some Asian subgroups are affected
by the higher health risks associated with lower BMI cut-offs. This is certainly
an important consideration in interpreting obesity data and health risks for the
residents of these Chicago Asian communities (Magee et al., 2010).

Diabetes
Diabetes is one of the major causes of premature death in the United
States and disproportionately affects some racial and ethnic minority popu-
lations. Consistent with several national health surveys, respondents were
140 IMPORTANCE OF LOCAL DATA

25
Chicago BRFSS 2002, 7%

20

15
Percent

10

16
13 12 13
12
5 11
7
5
4 4

0
Humboldt West South North Roseland Norwood N.Park & Armour Albany Uptown
Park Town Lawndale Lawndale Park West Ridge Square Park

Community Area

Figure 6-4 Diabetes Prevalence in Ten Chicago Communities

asked, “Have you ever been told by a doctor that you have diabetes or sugar
diabetes?” to measure the prevalence of diabetes. Figure 6-4 presents the
proportion of individuals who responded positively to this question in the 10
selected Chicago communities and illustrates substantial variation.
Six non-White communities reported diabetes rates that were three times
higher than the predominantly non-Hispanic (NH) White communities of
Norwood Park and West Rogers Park, and almost two times higher than the
Chicago average (Fig. 6-4). The highest rates were found among residents of
Humboldt Park and West Town (16% and 13%, respectively).
Because of the racial and ethnic diversity of these two communities, data
were also examined by specific racial and ethnic groups. Results indicated
that 21% of Puerto Ricans had diabetes compared to 15% of NH Blacks,
4% of Mexicans, and 3% of NH Whites. The Puerto Rican prevalence was
significantly higher than the Mexican ( p = 0.025) and NH White propor-
tions ( p = 0.025) (Whitman, Silva, and Shah, 2006). The prevalence of dia-
betes among Puerto Ricans from the Sinai Survey was also twice as high
as estimates for Puerto Ricans from national surveys and the highest rate
ever reported for any non-Native American population (Whitman, Silva, and
Shah, 2006; Whitman et al., 2010).
The diabetes prevalence among residents in the Mexican immigrant com-
munity of South Lawndale was unusually low. It was 5% compared to 12%
among Mexicans nationally (NDIC, 2008). This was in contrast to the diabetes
mortality rate for this community, which in 2000 was higher than the overall
Chicago estimate (40 per 100,000 individuals compared to 25 per 100,000;
 Comparing the Health Status of Ten Chicago Communities 141

Whitman, Williams, and Shah, 2004). On closer examination, the local sur-
vey offered some clarification and a greater understanding of how residents
in South Lawndale experienced health. Low insurance coverage among this
immigrant population likely explains the low diabetes prevalence found by the
Sinai Survey in contrast to the high diabetes mortality. This discovery provides
some insight on how to intervene. Residents in this community were dying
from diabetes but had never been diagnosed with it. The survey data indi-
cated that future community-based interventions would first need to make sure
individuals were appropriately screened to obtain a more accurate estimate of
prevalence; second, they would need to ensure that necessary services to man-
age and treat diabetes were available. This lack of screening is, of course, a
result of the lack of health insurance coverage and thus access to primary care
and the opportunity for diagnosis (Whitman, Williams, and Shah, 2004).
Asian Americans have also been found to be at high risk of diabetes com-
pared to NH Whites (McNeely and Boyko, 2004). In Chicago, the Asian
Surveys revealed dangerously high rates of diabetes in the Vietnamese (13%)
and Cambodian (12%) populations, despite low obesity rates (Fig. 6-3). Such
estimates of diabetes can be compared to 9% prevalence among U.S. Asians
(Magee et al., 2010).
Similarly to the experiences of Mexicans in South Lawndale, the two
Asian populations most affected by diabetes were predominantly foreign
born (Fig. 6-4). As a result, it is possible that these proportions actually
underestimate the true prevalence of diabetes because they rely on individu-
als having the opportunity to be screened for diabetes and presupposes that
they present to the health-care system for preventive services (Southeast
Asian Subcommittee of Asian American/Pacific Islander Work Group, 2006,
p. 23). Unfortunately, diabetes mortality data for Asian subgroups are not
so readily available for comparisons. It is thus difficult to understand these
high diabetes prevalence estimates. However, the health survey data offer
evidence that variation between different racial and ethnic populations in
Chicago exists and only begins to unveil how specific social and historical
factors influence the way different communities experience health.

Smoking
Smoking is known to be one of the leading preventable causes of dis-
ease and premature mortality. Individuals who smoke have a greater risk of
death from many causes compared to individuals who do not smoke. Two
questions, which are often asked on national surveys, were used to assess
whether an individual was a current smoker. These were: “Have you smoked
at least 100 cigarettes in your entire life?” and “Do you currently smoke
cigarettes?”
142 IMPORTANCE OF LOCAL DATA

50
Chicago BRFSS 2002, 24%
45

40

35

30
Percent

25

20 39
35 34
15 29

10 21
19
13 13
5
8
4
0
Humboldt West South North Roseland Norwood N.Park & Armour Albany Uptown
Park Town Lawndale Lawndale Park West Ridge Square Park
Community Area

Figure 6-5 Smoking Prevalence in Ten Chicago Communities

The greatest proportions of current smokers were documented in three

of the poorest, non-White communities: 39% in North Lawndale, 35% in
Humboldt Park, and 34% in Roseland (Fig. 6-5). The smoking prevalences
in these communities, which are mostly Black, are significantly higher
than smoking estimates in the Mexican, White, and Asian communities.
These proportions are also higher than the Chicago estimate of 24% (Shah,
Whitman, and Silva, 2006). To further put these rates in context, the propor-
tion of current smokers reported by the Sinai Survey for these three com-
munities are comparable to the smoking rates documented before the U.S.
Surgeon General first underscored the dangers of smoking. These Black
communities are thus 40 years behind the smoking cessation curve of the
country as a whole (Dell et al., 2005).
The lowest rate of smoking was observed among the Jewish population
in North Park/West Ridge (4%). This proportion is much lower than 2007
national averages for NH Whites (21%; CDC, 2008) and reflects strong cul-
tural norms against substance abuse including cigarettes, alcohol, and drugs.
Among the Asian communities, smoking prevalence ranged from 8% to
13%, compared to 10% among U.S. NH Asians in 2007 (CDC, 2008). Previous
studies have found that factors associated with risk of smoking among Asian
Americans include gender (Ma et al., 2002), unfair treatment (Chae et al.,
2008), and neighborhood context (Kandula et al., 2009). Examining these
local data by such risk factors indicate that among Chinese residents, 31% of
male adults smoked compared to only 1% of females. This male proportion
is comparable to some of the highest rates from other communities. These
 Comparing the Health Status of Ten Chicago Communities 143

rates are similar to other studies that have examined smoking prevalence
among specific Asian subgroups in other areas and offer insight on where
and how to target smoking cessation efforts in Chicago and even within indi-
vidual communities.

Breast Cancer Screening

Another measure of access to health care is the utilization of preventive
services such as breast cancer screening. A mammogram is the best tool for
early detection of breast cancer, and it is recommended by several organiza-
tions that women age 40 years and older obtain a mammogram every year.
Two questions were asked in concert to measure routine mammography uti-
lization: “Have you ever had a mammogram or breast X-ray?” and “How
long ago did you have your most recent mammogram? Was it … in the last
12 months, 2 years ago, 3 years ago, or more than 3 years ago?” To compare
with existing data, survey data were analyzed to measure the proportion of
women age 40 years and older who had a mammogram in the past 2 years,
and Figure 6-6 presents these proportions.
Results show some variability in the utilization of mammography services
among age-eligible women from the 10 different racial and ethnic commu-
nities surveyed in Chicago. In particular, Chinese and Cambodian women
had the lowest proportion accessing breast cancer screening within the last
2 years (46% in Armour Square and 43% in Albany Park, respectively)
compared to 90% of Mexican women in South Lawndale. Given the low

100
U.S., BRFSS 2002, 83%
90

80

70

60
Percent

50
90
85
40 78 79 79
74 70
30 59
46 43
20

10

0
Humboldt West South North Roseland Norwood N.Park & Armour Albany Uptown
Park Town Lawndale Lawndale Park West Ridge Square Park

Community Area

Figure 6-6 Proportion of Women (≥ 40 years) Who Had a Mammogram in the Last 2
Years in Ten Chicago Communities
144 IMPORTANCE OF LOCAL DATA

coverage of insurance in the Mexican community, this finding was surpris-

ing. However, in examining the proportion who had a mammogram in the
last year, only half of the women living in South Lawndale reported that
they had obtained a mammogram (38%), which was significantly lower than
the Chicago estimate of 67% (Shah, Whitman, and Silva, 2006).
Although there was limited variation reported in mammography history
among women living in White, Black, and Hispanic communities, some cau-
tion should be taken in interpreting these findings. Biases exist for all self-
report surveys (this is a given). Consistent with this finding, some studies have
found that all women tend to over-report mammography history and that the
degree of accuracy varies by racial and ethnic group (Lawrence, Moor, and
Glenn, 1999; Rauscher et al., 2008) and other socio-economic variables (e.g.,
age, income, and education levels) (Holt et al., 2006). Thus, although the
Chicago community survey data do not vary among the Hispanic, Black, and
White communities, the true prevalence is likely underestimated. The extent
to which reporting of mammography screening varies among the different
racial and ethnic groups is unknown.

Conclusions

Variation in local level health outcomes is at the core of this chapter. The
surveys conducted from 2002 to 2008 describe the health of 10 diverse
communities in Chicago. For the first time, communities and researchers
are able to quantify the health of local communities and racial and ethnic
groups within an urban setting not only in absolute terms but also in rela-
tive terms.
Comparison of five key health measures described in this chapter indicate
a wide range of measurements and substantiate how existing national and
city level data mask important variations in health. Substantial disparities in
health outcomes were documented by race and ethnicity and by geographic
area. For example, 21% of adults in the United States smoke, and about the
same is true for Chicago. However, in two adjacent Chicago communities,
21% of adults smoke in one and 39% in another (Dell et al., 2005; West
and Gamboa, 2010). Another example is that of breast cancer screening.
Nationally, about 83% of women age 40 years and older have had a mam-
mogram in the last 2 years, with similar estimates for Chicago. However,
less than 50% of the Chinese and Cambodian women reported that they
had received a recent mammogram. This proportion is far less than that
reported by Mexican, Black, and White women who were surveyed. Further
survey data analyses found that several other indicators similarly vary across
communities (Shah, Whitman, and Silva, 2006). Unless such differences are
 Comparing the Health Status of Ten Chicago Communities 145

routinely measured and carefully understood, public health programs cannot

optimally target interventions and resources at the community level.
In addition, survey data are important because they begin to offer expla-
nations for the causes of disparities at the local level. For example, the sur-
vey instruments asked questions about individual behaviors and their social
environment, which were specific to the Mexican or Asian communities sur-
veyed. These uniquely local data inform and guide community groups, aca-
demic centers, and other stakeholders on how to find sustainable solutions
to prioritize and take ownership of the health problems identified. Because
individuals can more readily relate to the information gathered, there is
greater potential to generate interest and even catalyze local communities to
take action. This is the next step of the Sinai model (Whitman, Shah, and
Benjamins, 2010).
Large urban centers in the United States have utilized health surveys to
better document the health of their diverse populations. Analyses of these
data have already shown substantial disparities in how racial and ethnic
groups experience health (ARHQ, 2005). However, successful translation of
such data to combat disparities has yet to be fully achieved. The local level
survey data described here offer such pertinent information to enable com-
munities in Chicago to prioritize health problems and design community-
based solutions to address them. Utilizing local data to drive change is thus
the essence of our vision for urban health improvement and the story of the
chapters to follow. Findings from these local community health surveys will
guide health interventions and shape where and how to intervene effectively.
Furthermore, it has been our experience that survey data findings, when pre-
sented in the context of other neighboring communities, underscore dispari-
ties in health and push foundations, policymakers, and community leaders
toward greater justice and fairness in their policies and programs. This strat-
egy will lead to the greatest gains in the public’s urban health and ultimately
to eliminating racial and ethnic disparities in health.

Acknowledgments

I am indebted to Dr. Steve Whitman and my colleagues at the Sinai Urban

Health Institute for 8 incredible years of learning how to transform the art of
social epidemiology to improve community health. Sinai’s public health prac-
tices inspired the Jewish Federation and the Asian Health Coalition of Illinois
to gather similar local level data. It is because of their initiative and hard work
in administering these additional surveys that we are able to examine the health
of 10 Chicago communities presented here. To this end, I thank Maureen
Benjamins and Matt Magee for managing this work so effectively. Generous
146 IMPORTANCE OF LOCAL DATA

funding was made possible to support my time for this work from The Robert
Wood Johnson Foundation and The Chicago Community Trust.

Note

1. All data shown are adjusted using the same age categories for all 10 communities.
Age categories used were: 18 to 44 years, 45 to 64 years, 65 years and older (or 65–75
years only for the Sinai Survey). Results from other published sources may have used
different age categories and thus may result in estimates that vary slightly from the
data presented here.

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Section 3

Translating Data into Community

Action

Steven Whitman, Ami M. Shah, and

Maureen R. Benjamins

Section 3 contains six chapters that each describe specific efforts to improve
health within vulnerable communities. Importantly, each of these case stud-
ies was motivated by data from Sinai’s Improving Community Health Survey.
These chapters provide a detailed account of efforts to improve health out-
comes, including smoking, diabetes, obesity, and pediatric asthma (both of
these latter outcomes were targeted in two different communities). Different
approaches are illustrated, reflecting the diversity of the communities rep-
resented in these chapters. Although some of these projects are just getting
started, some are well underway, and one has ended because of discontinued
state funding, each description provides unique insight into how communi-
ties can translate data into action.
Similarly to all others working in the fields of health care and public
health, the editors of this book would like to help all people be healthier and,
in fact, to obtain optimal levels of health. Further, although we would like
to improve health for all, we also believe that the first priority is improving
health for those whose health is worst. (This is explicit in the “Sinai Model
for Reducing Health Disparities and Improving Health,” described in the
Introduction to this book.) In this sense, this book is timely and enlightening
but not unique in its desire to improve health. It is unique, however, in the
sense that the central purpose of this book is to provide a feasible strategy
for pursuing the goals of improved health and reduced disparities.

149
150 TRANSLATING DATA INTO COMMUNITY ACTION

In each of these six chapters, survey data have identified a very impor-
tant problem that exists in a specific community of color. The underlying
schema delineated in the “Sinai Model” urges that once the community
and the health issue are selected, potential solutions must be developed and
resources obtained to improve the situation. In this way, researchers and
practitioners can begin working to reduce disparities instead of simply docu-
menting them.
The “Sinai Model” has been successfully followed in each of the six
case studies presented here. Although these are not the only interventions
that stemmed from the survey results, the selected case studies will pro-
vide examples of how different communities used the data to respond to
their individual health problems. Specifically, each chapter describes what
the survey data found, what interventions were selected, who was involved,
and how funding was obtained. Importantly, each chapter provides detailed
descriptions about the effectiveness of the intervention, the challenges con-
fronted, and the lessons learned. Through these examples it is hoped that
other communities will not only be motivated to undertake their own efforts,
but that they will also benefit from the variety of experiences described in
the following chapters.
7
WORKING TOGETHER TO LIVE
TOBACCO-FREE: COMMUNITY-BASED
SMOKING CESSATION IN NORTH
LAWNDALE

Joseph F. West and Charlene J. Gamboa

Introduction

Chicago prides itself as a “City of Neighborhoods.” There are 77 neighbor-

hoods that define the rich diversity and history of the city. North Lawndale
is one of these. Once a predominantly White middle-class neighborhood, the
community is now predominantly Black, poor, and dilapidated.
North Lawndale was the point of entry for many Eastern European immi-
grants and became home to large numbers of Blacks as early as 1960 dur-
ing what has become known as the Second Great Migration (Satter, 2009).
North Lawndale is a part of the “West Side” in common Chicago parlance.
This community is the former home to industrial giants such as Sears,
International Harvester, and Western Electric. As industry, and employment,
left the community, “White Flight” took place, and in a few short years the
community fell into rapid economic and social decline.
In 1966, the neighborhood’s poverty prompted Martin Luther King, Jr.
to pick North Lawndale as the base for the northern civil rights movement.
Following King’s assassination, rioting, crime, unemployment, and physical
deterioration led to further flight by residents and businesses (Abraham,
1994; Steans Family Foundation, 2009). In 1960, the community reached

151
152 TRANSLATING DATA INTO COMMUNITY ACTION

a height of 124,000 residents. Today, North Lawndale has 42,000 residents,

with 44% living below the poverty level, 68% below twice the poverty level,
and a median household income of $18,400.
Smoking is a pervasive public health issue for North Lawndale com-
pounded by the deeply rooted issues of race and class. Although smoking
rates in the United States and the city of Chicago have declined over the
past four decades, smoking rates in North Lawndale have not. Nationally,
about 47,000 Blacks die each year from smoking-related disease, a popula-
tion approximately the same size as North Lawndale.
This chapter begins with an introduction to the data on smoking preva-
lence for North Lawndale gathered from a comprehensive community sur-
vey. This is followed by a discussion of a community-based intervention
illustrating all of the features of its multifaceted design. The intervention
features a collaboration that started with a few community partners and the
state public health department and grew into substantial partnerships with
local community groups, schools, churches, and outreach organizations—all
focused on eliminating tobacco use in North Lawndale. Finally, the chapter
discusses some key outcomes and lessons learned from the intervention.

Community Survey Data and Smoking in North Lawndale

Methods

Community Survey
Data were obtained from the Sinai Health System’s Improving Community
Health Survey (Dell et al., 2005). The survey is described in detail in
Chapter 3. The questions analyzed in this report were those contained in
the smoking module of the survey, which were taken from the Behavioral
Risk Factor Surveillance System (BRFSS). A current smoker was defined
as a person who answered yes to both of the following questions: (1) “Have
you smoked at least 100 cigarettes in your life?” and (2) “Do you currently
smoke cigarettes?”

Data Analysis
Data were weighted to account for the probability of selection (at the block,
household, and respondent levels) and to ensure that the sample resembled
the community area demographics. Data were analyzed with Stata (Stata
Corp, College Station, Texas). A 95% confidence level was employed for all
analyses. The significance among prevalence proportions was tested with the
t-test. Trends among the results from the six community areas were tested
for statistical significance.
 Working Together to Live Tobacco-Free 153

Results
Table 7-1 presents smoking prevalence data. The proportion of self-
reported current smokers ranged from 18% in a predominantly White
community area (Norwood Park) to 39% in North Lawndale. The prev-
alence ratio between Norwood Park and North Lawndale was 2.11. Data
presented in Table 7-1 also show that a majority of current smokers (rang-
ing from 46% to 58% across community areas) reported that they tried to
quit during the last year and that most of current smokers were still trying
to stop.
The socio-economic correlates of smoking in the six communities
surveyed were generally similar to those reported in previous studies
(Northridge, Morabia, and Ganz, 1998; Nelson et al., 2003), although most
of the associations found by the current study were not statistically signif-
icant. Demographic groups that were more likely to be current smokers
included men, people living in households with lower incomes (<$30,000
per year) or without working telephones, and people without a high school
diploma. Mean and median ages for smoking initiation fell in the range of
approximately 15 to 17 years, and more than 90% of all current smokers
started smoking while they were teenagers. Most current smokers smoked
about half a pack a day.
Smoking prevalences for each community area, stratified by four
social and demographic measures, were also analyzed (data not shown).
In all six communities, men were more likely than women to smoke, but
in none of the six communities was this difference statistically signifi-
cant. However, this difference in smoking prevalence by gender among
all six communities taken together was significant ( p = 0.02). Income
showed a generally nonsignificant negative association with smoking. In
five of the communities (the exception being West Town), people living
in households with an annual income below $30,000 smoked at a higher
rate compared to those residents with a higher income. Only in Roseland
was the association of a lower household income with current smoking
significant ( p < 0.01). In four of the six communities, the lowest propor-
tion of smokers was found among people with more than a high school
education.
The proportion of households without telephone service (excluding cellular
phones) ranged from 2% to 21%. Because five of the six communities dem-
onstrated higher smoking proportions among households without telephones,
a telephone survey would have underestimated smoking prevalence in these
communities. However, the inverse association of the presence of a tele-
phone with smoking prevalence was statistically significant only in Roseland
( p < 0.025).
TABLE 7-1 Current Smoking Prevalence Proportions, Associated Prevalence Ratios, and Two Measures of Smoking Cessation
Efforts: Six Chicago Community Areas, 2002–2003

Chicago Community No. of Smoking prevalence Prevalence p Tried to quit in Still trying to quit
Area respondents (95% CI) ratio past 12 months, % at interview (%)

Norwood Park 190 0.18 (0.16, 0.21) Reference 54 57

Humboldt Park 298 0.35 (0.27, 0.44) 1.90 <0.001 58 68
West Town 303 0.32 (0.26, 0.39) 1.72 <0.001 46 49
South Lawndale 300 0.20 (0.15, 0.26) 1.09 NS 58 75
North Lawndale 303 0.39 (0.33, 0.45) 2.11 <0.001 46 70
Roseland 302 0.33 (0.25, 0.42) 1.78 <0.01 51 65

Source : Whitman S, Williams C, Shah AM. 2004. Sinai’s Improving Community Health Survey: Report 1. Chicago, Illinois: Sinai Health System
CI= confidence interval; NS = not significant.
 Working Together to Live Tobacco-Free 155

Working Together to Live Tobacco-Free: Community-Based

Smoking Cessation Intervention in North Lawndale

This North Lawndale smoking proportion among adults of 39% was among
the highest ever found in a U.S. community. As Sinai Urban Health Institute’s
(SUHI) members began disseminating overall findings from the survey,
this was one of the highlighted observations. In addition, it was repeatedly
pointed out that although Illinois was receiving $350 million a year from the
Master Settlement Agreement (Illinois Department of Public Health, 2009),
virtually none of that was going toward tobacco prevention or even health
(General Accounting Office, 2001).
In this context, the Chicago Chapter of the American Lung Association
asked SUHI researchers to participate in a press conference that would high-
light the smoking results from the survey. That press conference was held
on World No Tobacco Day 2005 at the State of Illinois Building in Chicago.
The event was attended by most of the city’s major media outlets. The cover-
age was substantial and on message. The Chicago Defender, the city’s Black
newspaper for more than a century, carried a banner front page headline
that read “Racism Drives Smoking” (Fig. 7-1). An anti-smoking activist who
spoke at the press conference noted, “First they made us pick it, now they
want us to smoke it,” and spoke about the disproportionate impact of the
targeting of mentholated cigarettes to the Black community. The American
Lung Association used the event to push for a city ordinance to require
smoke-free workplaces, including restaurants and bars in Chicago. In 2007,
the city passed this ordinance, and 1 year later the state passed a similar law
making Illinois businesses and public venues smoke-free.
Finally, based on the survey findings, the attention brought forward by the
dissemination efforts and the urging of the residents of North Lawndale, the
Illinois Department of Public Health requested a proposal for smoking pre-
vention in North Lawndale. SUHI submitted such a proposal in collaboration
with the Sinai Community Institute (SCI) and the work was funded. It would
be a 4-year multifaceted intervention for smoking cessation and prevention
in North Lawndale. SCI has been working in North Lawndale for more than
two decades as a service delivery agency of the Sinai Health System offer-
ing programs focused on health, education, training, leadership development,
case management, intervention, and prevention. They also serve as the ser-
vice agent for the county Women, Infants, and Children (WIC) program.

Breathing Freedom: Building the Community Intervention

The proposal was bolstered by an extensive literature review and 1 year of

planning and community meetings. The literature suggested that the most
156 TRANSLATING DATA INTO COMMUNITY ACTION

Figure 7-1 Local Newspaper Article Following World No Tobacco Day 2005 Event
and Press Conference for “Smoking in 6 Diverse Chicago Communities—A Population
Study” (Dell et al., 2005).

effective interventions are those that incorporate more than one type of pro-
gram. For example, the most extensive interventions may include programs
designed to educate or motivate individuals, address systematic changes in
the health-care system, and change policies related to smoking (COMMITT
I and COMMITT II 1995; Hopkins et al., 2001; Manske et al., 2004).
The proposed intervention, Breathing Freedom, emphasized a community-
based approach, which had been shown as effective in other communities
(Fisher et al, 1998; Andrews et al., 2007). The work also drew on the impor-
tance of integrating social support and faith in cessation programming for
Blacks (Ahluwalia, Resnicow, and Clark, 1998; Nolen et al., 2005).
The first step to building an effective community-based program began
with a series of meetings with community organizations to determine smok-
ing-related issues specific to the North Lawndale community that could
not be captured in the scientific literature. These early pre-implementation
 Working Together to Live Tobacco-Free 157

meetings were also important for establishing a baseline understanding of

the kind of smoking cessation services or programs available up to that point
and to what degree they had been successful.
Meetings were held with several community, health, and ministerial groups.
The meetings emphasized the importance of having an identifiable name for the
program, the importance of engaging neighborhood partners and collaborating
with other organizations, and sharing information with the community about
the program’s progress. The importance of engaging community stakeholders,
including businesses (e.g., barber shops, hair salons, and restaurants), churches,
civic leaders, and community service organizations, was also highlighted.
Using this knowledge and building from the scientific literature, the pro-
gram (aptly called Breathing Freedom) had the following 4-year intervention
(2007–2011) goals: promote quitting and not starting among youth and adults,
and reduce smoking prevalence in North Lawndale to 19% from 39%. The
program was composed of numerous components, as discussed below.

Media Campaigns and Public Education

Breathing Freedom promoted smoking cessation and its free services using
posters, flyers, billboards, classes, health fairs, and self-help kits. The media
campaign also entailed the distribution of 2,000 Pathways to Freedom books
to the community. Pathways to Freedom is a Centers for Disease Control and
Prevention smoking cessation publication tailored to Blacks (CDC, 2003).

Quitline
Breathing Freedom partnered with the Illinois Tobacco Quitline (Quitline)
for a focused promotion and data collection campaign. The Quitline offered
telephone support and counseling, along with cessation materials. Both a
proactive (provider-initiated) and reactive (smoker-initiated) approach were
used. North Lawndale residents were referred to the Quitline by a health
educator or physician, and the Quitline would follow-up the referral with a
mailing of smoking cessation materials and a phone call.

Free Nicotine Replacement Therapies (Quit Kits)

Breathing Freedom offered program participants “Quits Kits.” The kits
were packaged in 32-ounce reusable plastic mugs with the program name,
logo, phone number, and Quitline number printed on the mugs. Inside the
mugs were cessation support materials, including instructions that encour-
aged increased water consumption as a part of the cessation plan. Other
instructions included breathing exercises, stress relief, and tips on gradu-
ally reducing nicotine dependence. Also included were stress balls, nico-
tine gum, and coupons for nicotine replacement therapy (NRT) purchases.
The program also offered participants free 7-, 14-, and 21-milligram nicotine
patches (provided by the Chicago Department of Public Health). Participants
158 TRANSLATING DATA INTO COMMUNITY ACTION

wanting patches signed a consent form describing patch use and potential
side effects.

Group and Individual Counseling

North Lawndale residents wanting to quit were offered group counseling pro-
vided by either Breathing Freedom or another smoking cessation group in North
Lawndale or elsewhere in Chicago. Breathing Freedom offered one 90-minute
group session each week that was open to the public and one 90-minute group
session each week that was open to new and expectant mothers. The group ses-
sions were culturally modified workshops based on the Freedom from Smoking
model of the American Lung Association (ALA, 2009). The modifications
entailed incorporating pictures of Blacks and messages and life examples to
which the health educators believed participants could relate.
Residents could also receive individual physician-assisted smoking ces-
sation counseling. Twice a month a dedicated physician with more than two
decades of smoking cessation experience was available for a 4-hour period
to meet with patients and residents interested in quitting smoking. The
physician provided behavioral counseling and pharmacotherapy support to
patients. The physician was accompanied by a health educator who shared
smoking cessation materials with patients and offered them the group coun-
seling option. The visits could be covered by Medicaid.

Provider Education and Provider Reminder Systems

Breathing Freedom encouraged physicians to take a more active role in
encouraging patients to quit. The program provided clinician-specific smok-
ing cessation materials and Quitline referrals. Breathing Freedom’s Program
Director and Project Coordinator held grand-rounds with hospital clinicians
talking about the program and smoking cessation. The program also pro-
vided information regarding reminder systems and pharmacotherapy. In
addition the program employed the Ask, Advise, Refer strategy (Fiore et al.,
2000) with clinicians and health professionals working in the Sinai Health
System. This strategy allows clinicians and health professionals to:

• Ask patients about their smoking behavior;

• Advise patients on the importance of quitting smoking; and
• Refer patients to appropriate counseling services, which included
Breathing Freedom group sessions, the Illinois Tobacco Quitline, and a
physician dedicated to smoking cessation.

Ruth M. Rothstein Core Center

Breathing Freedom successfully piloted an intervention at the Ruth M.
Rothstein CORE Center. The CORE Center, a part of the Cook County
 Working Together to Live Tobacco-Free 159

health system, is one of the largest HIV/AIDS clinics in the United States.
Breathing Freedom and the CORE Center implemented a center-wide
smoking cessation intervention that included pharmacy services. Eligible
patients receiving their Highly Active AntiRetroviral (anti-HIV) Therapy
(HAART) prescriptions at the CORE Center pharmacy who were try-
ing to quit smoking could also receive free NRT. The intervention also
included a weekly 60-minute support group meeting and weekly clinician
follow-up.
This collaboration was the result of a ground-breaking study show-
ing cigarette smoking diminishes important benefits provided by HAART
therapy in the treatment of HIV/AIDS, resulting in elevated viral loads and
diminished T-cell counts (Feldman et al., 2006). In addition, the work was
driven by knowledge that smoking increases the risks for HIV-associated
pulmonary infections and oropharyngeal lesions and higher incidences of
AIDS-defining and non-AIDS defining malignancies. Smoking is also an
established risk factor for atherosclerosis and has been associated with cor-
onary events in patients receiving protease inhibitor therapy. In fact, as peo-
ple who are HIV-positive continue to live longer, they are dying from many
smoking-related causes (Lavolé et al., 2006; Gillison, 2009).

Women, Infants, and Children

Breathing Freedom provided smoking cessation to new and expect-
ant mothers enrolled in WIC. Cigarette smoking has been associated with
increased risk of ectopic pregnancy, placenta complications, and stillbirth
(U.S. Department of Health and Human Services, 2001). The decision to
focus on new and expectant mothers was driven by data on pregnant women
who smoke in Chicago. Table 7-2 presents the percent of births in Chicago to
mothers who smoke. Between 1989 and 2006, the percent of births to moth-
ers who smoke declined sharply for non-Hispanic Whites and Hispanics but
less so for non-Hispanic Blacks. North Lawndale in particular had a couple of
years where the percentages actually increased, and as of 2006 the rate was
more than three times the rate for White women in Chicago and was 11 times
as high as the predominantly Hispanic neighborhood of South Lawndale.
Most importantly, the smoking proportion was higher in 2006 than it had
been in 1990 and had only declined 23% in the 18-year interval.
Analysis of the WIC alcohol and tobacco assessment used by SCI during
enrollment showed WIC clients from North Lawndale smoked at a rate that
was more than twice that of other clients (Table 7-3). Literature suggests
that these rates may well be underestimations given that disclosing smok-
ing behavior during pregnancy may be looked upon unfavorably (Mullen
et al., 1991). Also, research suggests that smoking prevalence among WIC
clients is more likely to decline if smoking cessation is offered throughout
160 TRANSLATING DATA INTO COMMUNITY ACTION

TABLE 7-2 Percent of Women Who Smoked During Pregnancy in Chicago by

Race/Ethnicity, and Two Community Areas

Year All Chicago Non-Hispanic Non-Hispanic North South

Black White Lawndale Lawndale

1989 15.3 19.4 19.2 14.2 6.2

1990 12.4 16.3 15.6 9.7 4.0
1991 12.0 16.2 14.2 13.6 3.8
1992 12.8 18.0 14.7 12.1 3.5
1993 11.7 16.8 13.6 13.4 2.7
1994 10.2 14.9 12.1 10.4 2.5
1995 9.9 16.0 11.0 12.9 2.3
1996 9.9 16.7 10.1 12.8 1.9
1997 9.5 16.1 9.3 17.4 2.0
1998 8.8 15.0 8.7 18.2 2.0
1999 8.5 14.8 8.8 16.4 1.2
2000 7.8 14.3 7.4 15.7 1.5
2001 7.2 14.0 6.0 19.7 1.2
2002 6.8 13.6 6.1 16.5 1.3
2003 6.2 12.9 5.1 15.3 1.2
2004 5.6 11.7 4.7 15.6 1.4
2005 4.7 10.5 3.6 12.7 0.6
2006 4.5 9.9 3.1 11.0 1.0
% change
1989–2006 –70.6% –49.0% –83.9% –22.5% –83.9%

Source: Illinois Department of Public Health, Vital Records Data.

TABLE 7-3 Number of WIC Clients Living in Cook County and North
Lawndale who Smoke

Location No. of WIC clients No. currently smoke

County-wide 3658 198 (5.4%)

North Lawndale 344 42 (12.2%)
n 4,002 240

the course of pregnancy (Windsor et al., 1993; Yunzal-Butler, Joyce, and

Racine, 2009). There were two components for this intervention: (1) smoking
cessation group meetings were designed and scheduled exclusively for WIC
clients; and (2) the program trained WIC case managers and nutritionists
using a smoking cessation teaching guide specifically designed for them.
WIC case managers and nutritionists were then expected to work with their
clients to establish a quit plan. The guide, “Helping Mothers and Caregivers
 Working Together to Live Tobacco-Free 161

Stop Smoking: A Client Service Guide for Case Managers and Nutritionists,”
contained some simple tools. They were:

• Pregnancy and Smoking Newsletter

• Refresh Yourself! Stop Smoking—worksheet
• My Declaration of Self-Esteem—worksheet
• Positive Self-Talk to Stop Smoking—worksheet
• This is it—My Quit Day Plan—planning activity
• Ready to Quit and Ready to Plan—planning activity
• I Quit Contract—planning activity
• Illinois Tobacco Quitline Referral Form

Logic Model: Theory of Change

The underlying behavioral change model was based on the Stages of Change
Model (DiClement and Prochaska, 1982; Prochaska et al., 1988). The pro-
gram developed measures to assess changes in attitudes and willingness to
quit. Smoking assessments, outreach materials, and workshops assessments
each had tools that measured where patients were located on the Stages of
Change Model (Prochaska and DiClemente, 1983): Precontemplation (not
thinking of quitting); Contemplation (thinking of quitting); Preparation
(making an intent to quit—e.g., reducing number smoked per day); Action
(having quit at least 7 days); and Maintenance (having quit at least 30 or
more days). From these pieces we developed a logic model that outlines our
delivery plan for the entire program (see Figure 7-2).
This model was used to maintain focus on specific program outcomes and
impact related to our program goals. Breathing Freedom’s short-term outcomes
were to (1) increase awareness, knowledge, and intention to quit; (2) provide
direct cessation services to the North Lawndale community; (3) train WIC case
managers and nutritionists in smoking cessation outreach; and (4) increase calls
and referrals to Quitline. The program’s long-term outcomes were measured
as a participant having quit at three follow-up periods (3, 6, and 12 months);
increased calls and referrals to the Quitline and knowledge of telephone coun-
seling; increased number of physicians and hospitals encouraging patients to
quit and referring patients to smoking cessation programs.

Program Results

Breathing Freedom was developed as a 24-month intervention that involved

a number of community-centered activities. The program was initially
designed to be a 4-year initiative that would have included a follow-up sur-
vey to assess the intervention’s impact on changing smoking prevalence in the
 SHORT-TERM LONG-TERM
CONDITION ACTIVITIES IMPACT
OUTCOMES OUTCOMES

39% smoking Smoking cessation Increase end of Change the social

Increased awareness,
prevalence in outreach— treatment quit at 3, 6, norm
knowledge &
North Lawndale community/regular 12 months
intention to quit
workshops (8–9 week
program) Sustainable
>15% pregnant community-based
Increase number of IL
mothers smoke Provide direct smoking cessation
Quitline calls from
in North Mount Sinai cessation services and model
NL
Lawndale clinicians (referrals to resources to NL
Quitline & NRT)
Reduce tobacco-
Increase number of related morbidity and
50% smoking Train and support physician & hospital
prevalence in WIC case-manager mortality in NL
Breathing Freedom referrals
HIV+ population smoking cessation
Helpline/IL Quitline outreach
Impact policy related
Limited access to tobacco
to and Increase calls and advertisement &
NL Partnerships
availability of referrals to youth accessibility
NLCH, faith
effective IL Quitline
community, schools,
smoking
CBO
cessation
programs

Figure 7-2 Breathing Freedom Program Logic Model Excerpt

 Working Together to Live Tobacco-Free 163

neighborhood. The program’s funding was abruptly suspended midway through

the intervention because of state budgetary shortfalls and the follow-up survey
was not implemented. However, over the 24-month period, data were collected
for the number of North Lawndale residents that attended one of the program’s
workshops, received a clinical referral, or called either the program’s helpline
or Quitline and as a result made a cessation attempt. A program participant
was defined as a North Lawndale resident, Core Center patient, or WIC client
that received a quit plan, attended one or more counseling session, or called
either the program helpline or Illinois Tobacco Quitline.
The program conducted 46 education workshops, 16 partnership trainings,
and 12 community events (Table 7-4). The program also distributed 600
“Quit Kits,” received 80 incoming calls, received 33 fax referrals, and sched-
uled 53 clinical appointments. A total of 1,823 residents attended program
events of which 1,313 (72%) requested cessation plans. Using the Stages of
Change Model, the program was able to capture how many program partici-
pants moved from the Precontemplative to Action stages. Intensive follow-up
measured cessation progress by whether the participant quit (1) less than
30 days; (2) 30 to 60 days; (3) 61 to 90 days; or (4) greater than 90 days.
A quit attempt was counted when a participant either stopped smoking
for a day (24 hours) or reduced the amount of smoking by half (e.g., from
a full pack a day to half a pack a day). Eighty-five percent of participants
made at least one or more attempt to quit during the first 7 days of their ces-
sation plan. The program recorded that 467 of the 1,313 (35.6%) receiving
cessation plans quit for less than 30 days, 62 quit between 30 and 60 days
(4.7%), 33 quit between 60 and 90 days (2.5%), and 2 reported having quit

TABLE 7-4 Breathing Freedom Outreach Activities, Cessation Plans

Requested, 24-Hour Quit Attempts, and Quit Results 2008-2009

Type No. of No. of ces- 24-hr quit Quit Quit Quit

participants sation plans attempts <30 30-60 >60
requested days days days

Education 886 642 (72%) 563 (88%) 232 33 16

workshops
Partnership 278 199 (72%) 167 (84%) 105 12 7
trainings
Community 372 273 (73%) 143 (52%) 19 0 0
events
Cessation 46 13 (28%) 11 (85%) 0 0 0
clinic
Breathing 241 186 (77%) 164 (88%) 111 17 10
freedom
helpline/Fax
referrals
n 1,823 1,313 1,048 467 62 33
164 TRANSLATING DATA INTO COMMUNITY ACTION

after more than 90 days (0.15%). The remaining 57% were not able to quit at
all. These results are comparable to similar community-based programs that
offer incentives to quit, culturally sensitive materials, or free NRT to low-
income Black communities like North Lawndale. For example, “quit and
win” contests may have initial 3-month quit rates ranging from 8% to 20%,
then have 6- and 12-month follow-up rates as low as 3% and 0.2%, respec-
tively (Cahill and Perera, 2008). Like other cessation programs targeted
toward a disadvantaged community, Breathing Freedom realized a high ini-
tial participation of 70% to 80%, and then saw a gradual decline in partici-
pation and smoking abstinence (King et al., 2008).
In addition to providing residents with cessation plans, the program
was featured in four Chicago-area news stories and distributed 1,000 anti-
smoking church fans, 1,000 anti-smoking bags, 500 anti-smoking backpacks
to community youth, and 2,000 Pathways to Freedom booklets. The neigh-
borhood city councilwoman distributed program contact information to 5,000
constituents in a newsletter dedicated to anti-smoking in the community and
was a featured part of five community-wide health forums.
A total of 80 businesses, churches, community organizations, health
centers, and schools in the community received anti-smoking promotional
materials. Twenty-seven neighborhood placements of three anti-smoking and
Quitline promotional billboards also ran during the 24-month period (see
Figure 7-3). An appreciable mark of success is that prior to the program
the Quitline had received zero calls from the North Lawndale community
since the line’s inception. Over the 2-year period, the Quitline received 173
calls from the North Lawndale community. Each caller received a packet of
smoking cessation and lung health education materials from the ALA, and
if the caller left an accurate phone number, then they received a follow-up
call from a smoking cessation counselor. We were unable to discern with any
accuracy how many smokers quit as a result of calling the Quitline.
A majority of the smokers identified by this program were men (55%).
However, women made up the greater proportion of those making a quit
attempt. Also, adults that started smoking later in life (after age 18 years)
were more likely to make a quit attempt and try to stay quit longer than those
that started at a younger age. Persons that smoked half a pack a day or less,
had some education beyond high school, or were employed on a consistent
basis were more likely to make a quit attempt.
The program’s collaboration with the CORE center delivered 231 nicotine
patch prescriptions to 83 HIV-positive patients and 60 nicotine gum prescrip-
tions to 25 HIV-positive patients. There were also 55 reactive Quitline contacts
by HIV-positive patients. Twelve HIV-positive patients consistently attended
the once-a-week smoking cessation class. One person from this group stayed
smoke-free beyond 6 months. Breathing Freedom’s collaboration with SCI
delivered 16 smoking cessation workshops at designated WIC sites and four
 Working Together to Live Tobacco-Free 165

Figure 7-3 Breathing Freedom Illinois Tobacco Quitline Promotion Ads

90-minute smoking cessation trainings for 61 WIC case managers and nutri-
tionists. There were 122 WIC clients participating in the workshops: 71 (58%)
requested cessation plans and 32% of these reported making a quit attempt.
Finally, because it seemed important to program success, Mount Sinai
Hospital, a 90-year-old hospital located in North Lawndale, became a
smoke-free campus. Facilitated by Breathing Freedom, hospital administra-
tion and caregivers sought to set an example for North Lawndale residents.
Twenty-five non-smoking caregivers completed a half-day certified smoking
cessation class and 31 smoking caregivers received cessation plans, with all
making a quit attempt in the first week.

Breathing Freedom’s Community Impact and Lessons Learned

Breathing Freedom, a multifaceted community-based program, established several

different types of free services and education outreach for helping the residents of
North Lawndale quit smoking. Unlike a national or even city-wide intervention,
166 TRANSLATING DATA INTO COMMUNITY ACTION

Breathing Freedom was focused on a specific community area and worked with
a number of community organizations, churches, businesses, and civic groups in
the area to raise awareness about smoking risks. Breathing Freedom was guided
by what the epidemiological data provided about the dimensions of smoking in
North Lawndale and also by what the literature said about evidence-based effec-
tiveness of interventions across several areas. The program was culturally relevant
using materials and creating messages that were oriented for a predominantly
Black audience. From all indications, these messages were well-received.
Although an experimental design would have been ideal for this work, our
budget and timeline did not make this possible. The program, however, suc-
cessfully tracked participant readiness to quit and number of quit attempts.
Some strong evidence of the impact of the services and outreach is reflected
in the consistent number of residents the program found that were trying to
quit. The Sinai Survey, which demonstrated the urgent need for the program,
showed that 7 out of 10 North Lawndale smokers said they were trying to
quit at the time of the survey, and 46% of those surveyed had tried to quit
in the previous year leading up to the survey. Breathing Freedom found that
72% of persons attending a workshop, contacted by a health educator, or
encouraged by their physician requested a cessation plan, and just over 8 out
of 10 of them made a quit attempt in the first week.
The program also engaged new and expectant mothers involved in the
WIC program, which had not been done before in Chicago. A tool to be
used by WIC case managers specifically designed to help new and expectant
mothers quit was developed by this program.
A comprehensive smoking cessation model for HIV-positive and AIDS
patients was also developed by this program. Feedback from clinicians
involved in directly treating HIV-positive patients stated that based on work
from this program, they have learned to follow patient smoking behavior
as a cue to changes in compliance with anti-retroviral medication and/or
drug treatment program. HIV-positive and AIDS patients who consistently
attended the smoking cessation classes or requested a NRT prescription were
also seen as patients most likely to comply with treatment regimens.
The Ruth M. Rothstein Core Center and WIC program components were
unique features as they were intervention efforts that focused on specialized
populations and extended beyond the general North Lawndale community.
Another particularly unique feature of Breathing Freedom was the physi-
cian-assisted counseling. Prior to our program we were not able to identify
any other community-based smoking cessation effort that featured 8 hours of
physician-dedicated time each month to smoking cessation.
There were also some clear failures to the program that other planned
interventions can learn from. One such failure was that the program was
unable to establish a consistent weekly group intervention in the community.
 Working Together to Live Tobacco-Free 167

Although the program was able to hold workshops on a regular basis, it was
very difficult to get residents to commit to attend a group session on a regular
basis. Instead the program collaborated with a faith-based smoking cessation
counselor that prior to the program’s implementation held sparsely attended
group meetings. The combined efforts were only marginally successful.
Another weak area for the program was the physician-assisted clinic com-
ponent. Several logistic challenges hampered the start of the clinic, including
securing adequate space for patient visits, identifying appropriate times in
the physician’s schedule to consistently schedule the visits, and establishing
a subcontract and reimbursement schedule for the physician. One advantage
for establishing the clinic was having a dedicated physician be a part of
the planning process and engaged in the smoking cessation efforts through-
out. However, of the 53 clinical appointments made, only one-fourth of the
patients kept their appointments. Also none of the patients attending the clinic
returned for follow-up visits or quit. Patients making their first appointment
were clearly demonstrating a stage of change. On the other hand, retention
was dismal and there was no evidence that the clinic helped patients quit.
The actual work of the program revealed that helping residents to quit
smoking is a monumental undertaking that is both labor- and resource-
intensive. It also revealed that in an area of concentrated poverty like North
Lawndale, smoking cessation was not a subject that enlisted a significant
amount of excitement. In fact, given the magnitude of the social and domes-
tic issues such as poverty, social isolation, community violence, and jobless-
ness that many of the residents faced on a day-to-day basis, smoking seemed
to be, for many, a means of escape or self-medication. This much was voiced
by residents who would willingly admit to knowing the risks associated with
smoking but felt the risks did not outweigh the effects that smoking had on
helping them cope with anxiety and stress.
Therefore, a clear message that can be drawn from Breathing Freedom
seems to be that although such programs are desperately needed and can
have some measurable impact in raising awareness and helping people work
toward quitting, more needs to be done to help residents cope with their
daily lives as well as with the nicotine addiction itself.

Acknowledgments

This innovative initiative was made possible by several community part-

ners, including our funders the Illinois Department of Public Health and the
American Lung Association.
The authors would like to acknowledge the Sinai Health System, Sinai
Community Institute, Ruth M. Rothstein CORE Center, Respiratory Health of
168 TRANSLATING DATA INTO COMMUNITY ACTION

Metropolitan Chicago, Lawndale Christian Health Center and Cook County

Health System. We would also like to thank the supportive churches, social ser-
vice organizations, civic groups and community residents of North Lawndale.

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8
COMBATING CHILDHOOD OBESITY
THROUGH A NEIGHBORHOOD
COALITION: COMMUNITY
ORGANIZING FOR OBESITY
PREVENTION IN HUMBOLDT PARK

Adam B. Becker, Katherine Kaufer

Christoffel, Miguel Angel Morales, José
Luis Rodríguez, José E. López, and
Matt Longjohn

Data and the Origins of a Community Approach

to Obesity Prevention

Prior to 2003, very little data existed to describe childhood obesity in

Chicago and its neighborhoods. National data indicated that prevalence rates
were alarmingly high across the country and that children and families of
color experienced a higher burden than their White counterparts. Then, as
now, few data existed to describe how these disparities were reflected across
specific states, cities, or neighborhoods. In Chicago, researchers and practi-
tioners relied largely on national data until three studies were conducted to
further describe the epidemiology of childhood obesity in the city. Beginning
in 2003, epidemiologists and researchers from three institutions conducted
studies to further define childhood obesity prevalence (Fig. 8-1). The Illinois
Department of Public Health’s Healthy Smiles Initiative conducted a study

171
172 TRANSLATING DATA INTO COMMUNITY ACTION

100
Overweight Obese

80

60
Percent

48
40 42
21 24
17
20

16 18 16 17 21
0
U.S. Illinois Chicago West Humboldt
Town Park

Figure 8-1 Existing Data on the Prevalence of Childhood Overweight Obesity

Sources: aU.S. data: Prevalence presented as a weighted estimate from National Health
and Nutrition Examination Survey 2003–2004 obesity data for children age 2–5 (13.9%)
and 6–11 (18.9%).
b
Illinois data: Third graders across the state of Illinois with BMI between 85th and 94th
percentiles (18%) and >95th percentile (21%) (IDPH, 2006).
c
Chicago data: Prevalence of 3- to 5-year-olds in Chicago with BMI percentiles between
85th and 94th percentiles (16%) and >95th percentile (24%) (Mason et al., 2006).
d
Children 2–12 years based on caregiver reported height and weight (Margellos-Anast,
Shah, and Whitman, 2008).

among third graders across the state and found that approximately one in
five students was overweight or obese (IDPH, 2006). The Consortium to
Lower Obesity in Chicago Children (CLOCC; www.clocc.net) conducted an
analysis of data submitted to schools for children entering kindergarten in
Chicago and found that approximately one in four children began school
overweight or obese (Mason et al., 2006).
Although these studies helped make the case for childhood obesity pre-
vention in Illinois and Chicago, it was the Sinai Urban Health Institute’s
(SUHI) study of health and wellness in six Chicago communities that helped
to guide local practitioners to the city’s neighborhoods that were in high
need of initiatives to support healthy lifestyles and reduce childhood obesity
(Whitman, Williams, and Shah, 2004). The SUHI study found that child-
hood obesity rates in some of Chicago’s neighborhoods were as high as 60%.
Low-income communities of color had the highest rates. Among these com-
munities were Humboldt Park—a community that is 47% Black and 48%
Hispanic—and the adjacent West Town—a quickly gentrifying community
that is 47% Latino. More than 60% of children in these two neighborhoods
 Combating Childhood Obesity through a Neighborhood Coalition 173

were found to be either overweight or obese (Margellos-Anast, Shah, and

Whitman, 2008). Presentations of these data were a catalyst to action that
sparked a number of neighborhood initiatives.
The information resonated with CLOCC’s mission to protect the city’s
children from the obesity epidemic. CLOCC’s founding funder, The Otho
S. A. Sprague Memorial Institute, challenged SUHI and CLOCC to find a way
to translate the SUHI data and CLOCC’s momentum into a model, action-
oriented, community-level effort to foster healthy lifestyles. SUHI and CLOCC
identified Humboldt Park and the western part of West Town (identified by its
Latino residents as part of Humboldt Park, although it lies outside of that com-
munity area’s official boundaries) as an ideal site for this undertaking. The
result was Community Organizing for Obesity Prevention in Humboldt Park
(CO-OP HP). CO-OP HP was established in August 2004 with the Puerto
Rican Cultural Center (PRCC; http://prcc-chgo.org/) as its anchor organization.
CO-OP HP adopted the motto: “Con familias saludables, nuestra comunidad
echa pa’lante” (“With healthy families, our community can move ahead”).
The PRCC has led progressive work in the Puerto Rican section of the
Humboldt Park community for more than 40 years. A hallmark of the
PRCC’s work is fostering a culture of citizen involvement and commitment,
providing a rich context for community organizing. A variety of organiza-
tions in the community had a long-standing history of working together to
improve quality of life for residents. The SUHI study had led separately to
an emerging effort to create a “community of wellness” in Humboldt Park,
which was envisioned as an interorganizational collaboration with a broad
health-centered focus that would include healthy lifestyle promotion for obe-
sity prevention and reduction. The relationships among the key organiza-
tions, the emerging focus on health in the community, and the history of rich
community engagement enabled Humboldt Park to begin to build a model
for community engagement in the creation of community support systems
for healthy lifestyles, and so for reducing obesity.
Several other community characteristics made Humboldt Park fertile ground
for innovation and incubation of intervention strategies that could be dis-
seminated and replicated throughout the city. In addition to a concentration
of Chicago’s Puerto Rican residents, the area also includes large Mexican-
American and Black populations and thus represents a cross-section of the
dominant racial and ethnic minority groups in the city. The racial and ethnic
diversity of Humboldt Park held out the possibility that interventions developed
there would likely be culturally appropriate in other parts of the city. In addition,
the population median income is low, representing the socio-economic class
most disproportionately burdened by obesity and related chronic diseases.
One of CO-OP HP’s first strategies was to collect more data about obesity
and health in Humboldt Park. The project steering committee used focus
174 TRANSLATING DATA INTO COMMUNITY ACTION

groups to elicit qualitative information about local obstacles to healthier liv-

ing and opportunities to increase healthy habits. CO-OP HP staff and vol-
unteers with experience in the method conducted nine focus groups among
Puerto Rican caregivers of children ages 2 to 18 years, community leaders,
and adolescents; five focus groups among Mexican caregivers of children
ages 2 to 18 years; and three focus groups among Black caregivers. These
focus groups, conducted in both English and Spanish, explored behaviors
and attitudes regarding nutrition and physical activity in the neighborhood.
CO-OP HP staff and volunteers also conducted surveys in which body
mass index (BMI) and perceptions of overweight were measured during an
annual festival along the community’s main business corridor, Fiesta Boricua
on Paseo Boricua, in 2004 and 2005. Five hundred surveys were conducted
each year. Finally, a more comprehensive survey, the Community Wellness
survey, was conducted among 100 Puerto Rican and 100 Mexican-American
families concerning behaviors, attitudes, and knowledge of physical activity
and nutrition. The survey was developed by SUHI, so that the content was
tied to the larger multicommunity survey that had been done. Community
members were trained in how to conduct the survey. The survey identified
some clear problems. For example, only one in four area residents ate the
recommended five servings of fruits and vegetables a day, and one in four
children drank at least two cans of soda a day. Nearly half of area children
watched at least three hours of television a day. Two-thirds of area residents
felt unsafe walking in the community (Estarziau et al., 2006). The initial
data collection was envisioned as a first phase in an ongoing series of data
collections that would document gradual changes in lifestyle in the area and
how these changes related to CO-OP HP efforts. Data from a second wave of
the Community Wellness Study in Humboldt Park are currently being ana-
lyzed for presentation to CO-OP HP partners to use in refining intervention
approaches. Data have been shared with CO-OP HP leadership and plans are
underway for community-wide dissemination.
The resulting data from all of these collection strategies helped the emerg-
ing CO-OP HP Steering Committee to define initiatives to promote healthy
eating and physical activity for children and families in Humboldt Park.
The data revealed many barriers community members faced when making
choices about food and activity (Table 8-1).

Evolution of CO-OP HP

In response to some of the data described above, PRCC, SUHI, and CLOCC
initiated CO-OP HP in 2004. The Sprague Institute provided funding for a
full-time coordinator. PRCC brought to the group its programs, community
 Combating Childhood Obesity through a Neighborhood Coalition 175

TABLE 8-1 Barriers to Eating Healthy and Being Physically Active Reported by
Community Members in One Latino Community in Chicago

• Limited access to affordable produce

• Community retail outlets carry an abundance of high-sugar and high-fat foods
• Families have limited time to shop for healthy foods
• Little knowledge about nutrition
• No time to engage in physical activity with family
• Safety issues that prevent families from going outside or allowing children
outside to play
• Preference for devoting leisure time to watching television and playing video
games

leadership role, and social and political connections. SUHI brought its under-
standing of HP’s health and related survey data. CLOCC brought obesity
content expertise and city-wide connections to relevant programs and policy-
makers. This starting group envisioned the creation of a coalition of local orga-
nizations, with the goal of identifying obstacles to healthy eating and active
lifestyles in Humboldt Park as well as the development of a plan to reduce
those obstacles and encourage a culture of healthy living. Over time, several
organizations were added to the emerging CO-OP HP Steering Committee.

Steering Committee Membership

Bickerdike Redevelopment Corporation (Bickerdike; http://www.bickerdike.
org/) was the first to join the founding partners. Bickerdike’s mission is to
redevelop West Town, Humboldt Park, and two neighboring communities
for the benefit of and control by the lower and moderate-income residents of
those areas. The organization began by developing affordable single-family
homes and has evolved into a multifaceted driver of community development.
Bickerdike is the anchor organization for the New Communities Program of
the Local Initiatives Support Corporation (LISC; www.lisc.org). In that role,
Bickerdike was charged with developing and implementing a “Quality-of-Life
Plan” through a participatory planning process, making it a likely partner in
the CO-OP HP endeavor. The second group to join was Centro Sin Fronteras,
a local grassroots organization in the Mexican-American community with a
track record for reaching thousands of constituents at a time for varied ini-
tiatives. A third member was Association House, established in 1899 with a
continued mission to offer services to economically disadvantaged individu-
als and families in Humboldt Park and West Town. Association House car-
ries out its mission currently through providing human services, child welfare
activities, behavioral health services, and a continuing education center.
With each addition to the Steering Committee, there was a period of adjust-
ment for CO-OP HP, which had to incorporate new perspectives and priorities.
176 TRANSLATING DATA INTO COMMUNITY ACTION

Over time some of these partners have needed to focus on community issues
that were more directly aligned with their original missions (e.g., immigra-
tion policy, housing development, health more broadly) and have shifted out
of CO-OP HP leadership roles. Other partners have joined as well. Some have
stayed, others have left. Table 8-2 presents the primary partners in the CO-OP
HP initiative, their roles, and the evolution of their engagement over time. The
key partnership between CLOCC and PRCC remains the central partnership
that sustains CO-OP HP.

CO-OP HP Structure and Partnerships

Since its inception in 2004, CO-OP HP’s structure has evolved and grown.
Currently, the CO-OP HP Steering Committee receives reports and provides
input to a food subcommittee that develops strategies to improve fruit and
vegetable consumption in the neighborhood. At one time, the CO-OP HP
Steering Committee also had subcommittees focused on physical activity and
evaluation. As CO-OP HP partners who are not formally part of the Steering
Committee have become increasingly interested in these areas, steering com-
mittee members influence these efforts through partnerships rather than lead
them through subcommittees. For example, physical activity interventions
are influenced by CO-OP HP Steering Committee members through partic-
ipation on the Active Lifestyles Task Force of The Greater Humboldt Park
Community of Wellness (CoW; http://www.ghpcommunityofwellness.org/
home.aspx). Multiple community organization leaders (including PRCC’s
Executive Director) formed the CoW in response to the SUHI study about
Humboldt Park. The involvement of CLOCC and CO-OP HP staff ensures
that strategies are aligned with the work of CO-OP HP. Similarly, a number
of research and evaluation activities are carried out in Humboldt Park by the
Steans Center for Community-Based Service Learning at DePaul University
in Chicago. Although Steans Center staff and students do not participate on
the CO-OP HP Steering Committee, they frequently partner with CO-OP
HP to conduct research to support or evaluate CO-OP’s approaches.
CO-OP HP staffing has changed over time as well. CO-OP HP began
with one full-time manager and a part-time CLOCC Community Networker
in West Town provided early support. When full funding was available for
both positions, the CO-OP HP Manager became the CLOCC networker and
the current CO-OP HP Manager was hired. CO-OP HP has also added two
project coordinators. One coordinator oversees food strategies. The other
coordinates a physical activity program with modest beginnings that has
grown into a large-scale, multisite initiative. Numerous volunteers and stu-
dent interns also have contributed to the success of CO-OP HP strategies
(each of these strategies is described in more detail below). Although CO-OP
TABLE 8-2 Partners Within Community Organizing for Obesity Prevention in Humboldt Park (CO-OP HP)

Partner Organization Mission/Purpose Historical Role Current Status

Puerto Rican To serve the social/cultural needs of Chicago’s Puerto Originating Partner Anchor Organization, houses
Cultural Center Rican/Latino community; based on a philosophy of staff, coordinates all pro-
self- determination, a methodology of self-actualization grams, provides primary
and critical thought, and an ethic of self-reliance linkage to community
Sinai Urban Health To develop and implement effective approaches that Originating Partner Supports surveillance and evalu-
Institute improve the health of urban communities through data- ation efforts on ad hoc basis
driven research, evaluation, and community engagement
Consortium to To confront the childhood obesity epidemic by promoting Originating Partner Provides funding, participates
Lower Obesity healthy and active lifestyles for children throughout the in steering committee and
in Chicago Chicago metropolitan area; to foster and facilitate con- all subcommittees, provides
Children nections between childhood obesity prevention research- public health expertise
ers, public health advocates and practitioners, and the
children, families, and communities of Chicagoland
Otho S. A. Sprague To pursue the investigation of the cause of disease and the Originating Partner Provides funding through
Memorial prevention and relief of human suffering in the City of and Funder CLOCC, serves as catalyst for
Institute Chicago, County of Cook, State of Illinois new intervention models
Bickerdike To redevelop the West Town, Humboldt Park, Logan Square Joined in first Provides staff and programmatic
Redevelopment and Hermosa communities for the benefit of and control expansion support as needed; links to
Corporation by the lower and moderate-income residents of those areas LISC for funding as needed
Centro Sin To advocate for immigrants’ rights in Chicago Joined in first No longer involved
Fronteras expansion; link to
Mexican American
community
Association House To offer services to economically disadvantaged individuals Joined after first Member of steering committee
and families in Humboldt Park and West Town expansion
Norwegian To promote wellness within the family and to be dynamic Joined after first No longer involved
American partners in health with the communities we serve expansion
Hospital
178 TRANSLATING DATA INTO COMMUNITY ACTION

HP is managed and staffed by the Puerto Rican Cultural Center and guided
by a partnership between CLOCC and the PRCC, a variety of community
partners also participate in CO-OP HP meetings and initiatives. Although
the participation of these partners ebbs and flows, their contributions to the
work of CO-OP HP are critical elements of its success.

CO-OP HP Funding

A guiding principal of CO-OP HP is that initiatives should be community-

driven and sustainable. To ensure both local ownership and longevity, CO-OP
HP strategies are not highly dependent on external funding. However, staff
and some of the strategies do require financial support. The Sprague Institute
provided original funding to SUHI for CO-OP HP. In subsequent years,
CLOCC has raised funds to provide subcontracts to the PRCC for CO-OP
HP staff, projects, and promotional materials. PRCC contributes in kind, add-
ing resources to CO-OP HP intervention approaches, hosting meetings, and
providing or supplementing staff salaries. More recently, PRCC has begun
to include CO-OP HP funding in its fundraising strategies to sustain the
effort directly. Over the years, a variety of funders, in addition to the Sprague
Institute, have invested in CO-OP HP to support CO-OP HP management,
programming, environmental change strategies, and evaluation. In addition,
local partners have contributed time, money, and other resources to support
CO-OP HP initiatives. As CO-OP HP enters its sixth year, full ownership and
control, as well as fundraising responsibility, will shift to the PRCC.

CO-OP HP Intervention Strategies

Based on the data gathered through the multiple methods described above,
CO-OP HP leadership determined that in addition to supporting a coalition
of community-based organizations, it would pilot and implement a variety
of intervention approaches that would ultimately increase healthy eating and
physical activity in the community and strengthen health-related resources that
could support healthy lifestyles. These interventions are described below.

Increasing Access to Produce

To address low levels of fruit and vegetable consumption, local leaders iden-
tified both nutrition education and access to fresh produce as priorities. The
issue of local food access is understood by the PRCC as central to broader
issues of community identity, sustainability, and redevelopment. As gen-
trification moves toward the community, the PRCC and its partners work
 Combating Childhood Obesity through a Neighborhood Coalition 179

to assert community ownership of strategic spaces to protect the history

and culture of the Puerto Rican community in Chicago. In this context,
assuring food access is important in a number of ways. First, food produc-
tion in the community (including gardening and urban agriculture) can help
develop an indigenous commercial base, creating local wealth that can help
people to become property owners or afford increasing rents and stay in
the community. Second, fostering local demand for produce can help keep
local businesses operating while also changing peoples’ diets to become
healthier. Healthier residents are, in turn, more able to gain and maintain
wealth. Thus, CO-OP HP’s food goals embody the broader objectives of
local business development and wealth creation, establishing a consumer
base for these new business endeavors and using community public space
to provide goods and services that will ultimately improve the health of the
community as well as demonstrate positive uses of these spaces by and for
the community.

Farmers’ Market
One of the multifaceted produce access endeavors has been the Humboldt
Park Farmers’ Market. In the early years of CO-OP HP, numerous organiza-
tions met to develop a farmers’ market in Humboldt Park. The group was
comprised of local and external organizations. Some had the protection of
green space as a mission, some had organic food production and consumption
as a mission, some had missions related to protecting the health and well-
being of the community, and a few aimed to provide new goods and services
to the increasing population of Chicagoans moving into Humboldt Park from
other areas of the city. As CO-OP HP got established in 2004, staff met with
this farmers’ market interest group to discuss the role that CO-OP HP could
play, with a goal of ensuring that this market was primarily by and for the
people of Humboldt Park who had been in the neighborhood for generations.
Members of the group agreed to move the market from its original location
off the beaten path to a spot on the main business thoroughfare that was par-
ticularly important to the Puerto Rican community. The PRCC became the
host of the market in 2005 and renamed it El Conuco Farmers’ Market on
Paseo Boricua. The CO-OP HP manager took over logistics for the relocated
market, got the necessary buy-in from businesses that owned or rented near
the new location, took on the responsibility of advertising, arranged for the
supply of electricity and water from a nearby business, and arranged for stor-
age between market days. A partner organization, which had been involved
with the market at its previous location, managed the newly organized mar-
ket. Over time, and as CO-OP HP evolved, interest grew among some of the
original stakeholders in shifting increasing management responsibility to the
PRCC and CO-OP HP staff.
180 TRANSLATING DATA INTO COMMUNITY ACTION

Throughout its 4-year history, as is the case with many small, locally
driven markets, El Conuco has struggled to sustain sufficient numbers of
shoppers and producers. Some days, a sufficient number of shoppers would
come but not find a sufficient number of producers. The next week, after
heroic efforts, sufficient numbers of producers would arrive, but dubious
shoppers did not show up because of their experience the week prior. A great
deal of staff time went into attempts to break this “vicious cycle.” CO-OP
HP leadership began to question the wisdom of managing the market and a
number of criteria were set by the steering committee to determine how long
CO-OP HP should devote energy and resources to the market. The success
of the market, however, was important enough to the local leaders that they
persisted.
Today, the market is in a new, more visible location in the local park at a
busy intersection. CO-OP HP staff manages the market entirely. They have
shifted the market’s focus so that it is now a community market that includes
locally grown produce, flowers grown in the community and on nearby
farms, local crafts, and prepared foods. Some small, local grocery stores
also attend and sell their inventory. To align the market with CO-OP HP’s
obesity prevention goals, partners (e.g., the Chicago Partnership for Health
Promotion, University of Illinois Extension) periodically provide nutrition
education and healthy recipes at the market. Although the market continues
to struggle, it continues to survive as well. Local leaders’ commitment to the
multiple goals of the El Conuco provides the motivation to persist, even in
the face of difficult challenges.

Produce Purchase and Delivery Programs

Another food intervention of CO-OP HP is a food basket dissemination
program called La Cosecha (The Harvest). This program too has evolved
over time and meets multiple goals of local leadership. The market basket
program began as a product established by a partner organization, sim-
ilarly to community-supported agriculture programs that have emerged in
other places. Consumers ordered bags of produce weekly, and these bags
were delivered to the PRCC for local pickup. Sometimes, a local business or
clinic would order enough to justify direct delivery to that site. CO-OP HP’s
involvement in the original version of the program was to manage the order-
ing process and staff the distribution. CLOCC research staff conducted an
evaluation of the program and identified a number of challenges. For exam-
ple, consumers were not always pleased with the bags they received, which
often contained produce with which they were unfamiliar. CO-OP HP staff
tried to provide recipes, but lack of familiarity with the bags’ contents could
not be overcome by recipes alone. Attempts to change the contents of the
bags were not successful because of the logistics of the providing agency.
 Combating Childhood Obesity through a Neighborhood Coalition 181

Eventually, it became clear that a locally run program might do better at

meeting consumer needs.
In 2009, CO-OP HP relaunched the program as La Cosecha, built on a
relationship that has been developed with a local grocer who sells cultur-
ally appropriate produce to CO-OP HP at wholesale prices. CO-OP HP staff
members bag the produce and customers pick them up weekly. CO-OP HP
charges $1 per bag above cost, so that as orders increase, supplemental staff
can be brought in to help with bagging and distribution. CO-OP HP staff
has sometimes been able to arrange for bag distribution to take place inside
local bodegas/corner stores. Local leaders see La Cosecha as having two
important results: expanding local demand for produce and stimulating local
business owners to get involved in produce retail. It is hoped that ultimately
local production will supply a significant portion of local demand for fresh
produce.

Producemobile
A third food intervention in which CO-OP HP has been involved is
the Producemobile. This service is provided by the Greater Chicago Food
Depository (GCFD; http://www.chicagosfoodbank.org), a part of the national
Feed America network. In this program, GCFD sends a truck full of contrib-
uted produce to community settings for free distribution by local organiza-
tions. The local organizations organize the distribution site, manage the often
long lines of consumers, get the produce off the truck and into bags, and
clean up the location after delivery is complete. CO-OP HP staff members
coordinate one of several monthly Producemobile days in Humboldt Park
and ensure that members of the local community have continuing access to
this emergency food service.
CO-OP HP staff has also worked with CLOCC partners to provide nutri-
tion education and sample recipes to consumers during Producemobile.
In an effort to identify additional opportunities to provide services during
Producemobile delivery, CLOCC did a survey to assess if additional health-
related services would be well-received. The results indicated that consum-
ers were interested in information that would help them make the best use
of the produce they received. Other services (such as health screenings and
immunizations) were not welcomed because of long waits for produce and a
reluctance to bring children to the produce distribution site.
CO-OP HP staff and leadership continue to innovate to increase the avail-
ability of healthy food for community residents. Staff has identified three
local store owners who are willing to house a CO-OP HP produce cooler
on their premises. The coolers will be used to store surplus produce from
La Cosecha and will also make it feasible for those stores to begin to stock
produce. Staff is also working with local restaurateurs to develop a program
182 TRANSLATING DATA INTO COMMUNITY ACTION

that will publicize participating restaurants that are willing to feature items
on their menus that contain fresh produce. The PRCC has an ongoing pro-
gram at a partner high school that engages students in community gardening
and urban agriculture. CO-OP HP leadership and staff remain committed to
the idea that the combination of local supply and demand enhancement will
help to attain community goals for the use and occupation of community
space while also improving the diets, and ultimately the health, of commu-
nity members.

Physical Activity Interventions

CO-OP HP has initiated a number of strategies related to increasing physical

activity for community members. These efforts range from the delivery of
specific programs to changing the physical activity environment and work-
ing with government agencies to implement policy and systems changes.

¡Muévete!
A cornerstone of CO-OP HP’s physical activity work is the ¡Muévete!
intervention model. ¡Muévete! (Move!) began with one woman recognizing
her own urgent need for more physical activity and has become an inter-
vention strategy that is implemented in numerous settings in and around
Humboldt Park and serving hundreds of women and their children. Leony
Calderón, ¡Muévete! founder, is a young obese woman who was told by her
physician that she had elevated cholesterol and borderline hypertension.
She was told that she needed to lose weight to get these problems under
control, or she would face a lifetime of medications to control them. She
began a physical activity regime by walking around Humboldt Park, the
200-plus-acre park after which the community is named. Soon, friends and
even strangers started walking with her.
When the cold winter weather set in, Ms. Calderón took her walking
group inside. To adapt to the indoor setting, she took an aerobic instruction
class at the Chicago Park District and turned the activity into an aerobic
dance program, using Latin and other culturally relevant music to inspire the
growing number of women, and their children, participating in the program.
Since its humble beginnings in 2004, ¡Muévete! has expanded to include two
additional park-based programs, several new community- and school-based
programs, and a variety of appearances and special sessions at community
events all over Chicago.

Promoting Cycling in Humboldt Park

Increasing the numbers of community members who cycle in the com-
munity has been another physical activity initiative of CO-OP HP. The first
 Combating Childhood Obesity through a Neighborhood Coalition 183

CO-OP HP Manager expressed this goal as a desire to “make cycling sexy

for Puerto Ricans.” Efforts began with organized bike rides that included a
bike tour of murals that depict Puerto Rican history and culture. CO-OP HP’s
partner, Bickerdike, received a grant to develop a map of these local murals
that could be used in bike rides and walking tours. With the relocation of
the farmers’ market, the bike tours expanded to include the market and local
gardens. Soon other partner organizations joined in. As interest in cycling
grew, Bickerdike developed “Bickerbikes.” In 2004, this bicycle safety and
repair program for youth became West Town Bikes (http://westtownbikes.
org/), a nonprofit organization whose mission is to promote bicycling, edu-
cate youth with a focus on underserved populations, and foster and serve
Humboldt Park’s growing bicycling community. Although it maintains head-
quarters and a workspace in Chicago’s West Town neighborhood, West Town
Bikes has become a city-wide service provider for youth programs in the
city of Chicago. In a shining example of how CO-OP HP initiatives become
sustainable entities, the leaders of West Town Bikes, in collaboration with
CO-OP HP and PRCC staff, developed a for-profit business called Ciclo
Urbano. This full service community bicycle shop supports the Humboldt
Park and West Town neighborhoods. The shop focuses on affordable and
reliable transportation, offering bicycle sales, service, new and used bike
parts, and accessories. All sales from the shop support West Town Bikes’
larger mission of providing bicycle education to Chicago youth.

Skateboarding Programming and Infrastructure

CO-OP HP staff and partners have also begun to examine skateboarding as
a strategy for engaging youth in physical activity. A space behind the PRCC
was opened for skateboarders during the summer of 2008. Also in 2008,
CO-OP HP staff integrated the participants in the skateboarding group into
Open Streets, a five-community strategy to encourage active transportation
by closing major streets to motorized vehicles (described below). Although
skateboarding has yet to become a formal intervention strategy, CO-OP HP
staff continue to consider its role in physical activity programming. As of
this writing, CO-OP HP staff is monitoring the potential development of
a city skate park nearby. This park would replicate a successful skate park
built by the City of Chicago in a neighboring community.

Open Streets and Humboldt Park in Motion

As CO-OP HP physical activity programming evolved, the Greater
Humboldt Park CoW established its Active Lifestyles Task Force. The activ-
ities of the task force promote active lifestyles for adults and youth to combat
obesity and related health problems, including diabetes and heart disease. The
task force organizes events and programs focused on making the community
184 TRANSLATING DATA INTO COMMUNITY ACTION

more active. Most recently, the task force has been the primary Humboldt
Park partner in Chicago’s Open Streets initiative (http://www.activetrans.
org/openstreets). Open Streets is a day-long event during which 8 miles of
Chicago boulevards on the city’s west side are opened to nonvehicular traffic
so that community members can ride bikes, walk, rollerblade, and engage in
other forms of active transportation while enjoying the streets in their neigh-
borhoods without the usual congestion of cars, trucks, and buses. CO-OP HP
staff and partners helped to organize events along the route, including skate-
boarding clinics and a bike repair station. Motivated by the Open Streets
initiative, Humboldt Park organizations developed a series of activities to
engage participants in the park and along the route. The partners called this
series of activities “Humboldt Park in Motion” and soon agreed that this
would be a theme of their work year-round in the community.

Marketing, Publicity, and Communications

CO-OP HP staff and partners see the promotion of their many intervention
strategies and programmatic activities as an important element of their work.
Such activities can increase participation and also help to change community
norms around healthy lifestyles through visual reminders that Humboldt Park
is a community in which residents can be healthy and active. Starting early in
CO-OP HP’s history, staff used the local newspaper, La Voz del Paseo Boricua
(La Voz), to educate the community about the importance of healthy lifestyles.
La Voz is operated as a separate business by the PRCC. Each month, 10,000
copies of the paper are distributed throughout the community, and revenue is
generated through advertising. The CO-OP HP manager wrote regular articles
for La Voz on health and health-related events, covering topics such as obe-
sity, metabolic syndrome, diabetes, hypertension, and the evolving CO-OP HP
strategies that could help community residents to confront these problems.
CO-OP HP continues to promote its activities in this local newspaper
and also buys space periodically to advertise its healthy lifestyle message
(Fig. 8-2). Developed by CLOCC, the 5-4-3-2-1 Go!™ message (http://
www.clocc.net/partners/54321Go/index.html) promotes daily steps toward
a healthy lifestyle: 5 servings of fruits and vegetables, 4 servings of water,
3 servings of low-fat dairy, 2 hours or less of screen-time (e.g., television,
computer, video games), and 1 hour or more of physical activity. In addition
to these public education ads, CO-OP HP staff and partners have made sure
that community events, study results, political initiatives, and other activi-
ties related to health are also included in La Voz. CO-OP HP has also pur-
sued other outlets to promote activities and the healthy lifestyle message,
including spots on Univision, the local NPR satellite station, NBC news,
and community radio feeds.
 Combating Childhood Obesity through a Neighborhood Coalition 185

Figure 8-2 Public Education Advertisement in a Local Newspaper

Source: La Voz, January 2006 Issue.

From Programs to Systems and Environmental Change

Approaches

As public health, medical, and community practitioners increase their under-

standing of the causes and effects of the childhood obesity epidemic, inter-
vention strategies have evolved. Initial strategies focused on individual-level
factors such as knowledge and attitudes and their impact on diet and activity
behaviors. Over time, however, as the complexity of the childhood obesity
problem has emerged, interventions are increasingly based on a social eco-
logical model of public health problems (Becker, Longjohn, and Christoffel,
2008; Davison and Birch, 2001; McElroy et al., 1988). This model recognizes
the importance of the built and social environment and its role in individual
behavior. Childhood obesity prevention approaches based on social ecology
consider risk and protective factors beyond the individual to focus on fam-
ily, community, and institutional and public policy. For example, creating
and sustaining the local farmers’ market, opening Ciclo Urbano on Division
Street, and regular 5-4-3-2-1 Go! and CO-OP HP ads in La Voz all foster
access to healthy food and physical activity, change the social environment
through frequent cues to healthy living that are highly visible, and, in some
cases, create enduring changes in the community landscape.
Most recently, CO-OP HP staff and partners have been involved in devel-
oping a community garden on Humboldt Park grounds with the co-located
186 TRANSLATING DATA INTO COMMUNITY ACTION

Institute for Puerto Rican Arts and Culture. Students from the Dr. Pedro
Albizu Campus Puerto Rican High School, an affiliate of PRCC, will man-
age the garden. Produce grown in this garden will be sold in the El Conuco
market. As a sign of their commitment to the project’s development, land-
scape architects from the Chicago Botanic Garden have produced design
renderings of the garden to ensure that it is in keeping with the architectural
style of the surrounding facilities, as required. The community garden is
one of a few strategies being developed by the PRCC to sustain CO-OP HP
activities through its approach to urban agriculture (described in the “Next
Steps” section below).

Evaluating CO-OP HP

Humboldt Park Organizations and CO-OP HP staff develop programs, engage

in activities, and institute policies that increase access and educational opportu-
nities related to healthy food and safe opportunities for physical activity in the
community. CO-OP HP partners work together to enhance relationships and
expand resources in clinical settings and in interorganizational collaborative
efforts. Each of these programmatic arenas is comprised of an ever-changing
number of interventions and strategies. These interventions and strategies are
expected to result in intermediate outcomes related to individual, family, and
organizational behavior. These outcomes, over time, are expected to result in
long-term changes in health status. Evaluating these anticipated changes is
one of the most challenging aspects of the CO-OP HP effort.

The Challenges of CO-OP HP Evaluation

A combination of factors makes understanding the impact of CO-OP HP
a complex endeavor. First and foremost is that CO-OP HP does not have
sufficient funds to mount a comprehensive evaluation strategy. Intervention
approaches such as CO-OP HP require a multimethod, multidimensional
approach to evaluation to assess change at multiple levels. Multiple strategies
are needed to measure influence on individual behavior, community envi-
ronmental conditions, and institutional and local policy (Baker, Metzler, and
Galea, 2005). Evaluation at any one of these levels is expensive. Evaluation
across all of the levels requires significant time and money.
A second factor is the fluid nature of the interventions and strategies
implemented under the CO-OP HP umbrella. CO-OP HP strategies emerge
and take shape as local opportunities become available rather than as pro-
spectively planned actions that roll out in predetermined ways. Initiatives
focus on food, physical activity, or both. Standardized evaluation involves
 Combating Childhood Obesity through a Neighborhood Coalition 187

standardized methods and instruments to measure both of these complicated

human behaviors. In addition, CO-OP HP interventions occur in varied and
multiple settings (e.g., childcare settings, health-care settings, within business
and retail, in parks and schools). These settings open and close their doors as
funding dictates, sometimes welcome and sometimes prohibit external pro-
gramming, and change their emphases from time to time. Participation in
specific programs is highly variable, making the measurement of participa-
tion a challenge. With the exception of La Cosecha, in which people submit
contact information with their produce order, program staff do not have ways
of contacting participants in CO-OP HP interventions. Participation fluctuates
week-to-week. People come to a ¡Muévete! class, shop at the farmers’ market,
or receive free produce from Producemobile when they need to and when
their schedules allow. The CO-OP HP Steering Committee has made the con-
scious choice not to collect contact information from participants on an ongo-
ing basis because of the time that registration might take, the confidentiality
needs of people who have to avail themselves of free produce programs, and
concerns with immigrant status. Measuring participation alone is challenging.
Measuring change among participants is even more difficult. Previous efforts
have even interfered with participation, as when women avoided ¡Muévete!
when staff sought to weigh them in an effort to track change in BMI.
Within each of the programmatic arenas (e.g., food, physical activity), the
specific interventions are in constant flux and evolution. As opportunities
arise (e.g., funding, political will, a new partner-driven initiative) CO-OP HP
staff and leadership look for ways to connect, enhance, and leverage these
opportunities to make them stronger and more available to Humboldt Park
residents. As certain opportunities end, others emerge. Documenting and
monitoring this ever-fluctuating landscape is difficult. Evaluating the impact
of the various components on community members is even more challeng-
ing. To date, CO-OP HP leadership has chosen to monitor only those inter-
vention strategies over which they have the most influence and control and
for which the tracking of participants would not require an added dimension
to the program itself or burden on participants.

Evaluation Strategies

Tracking Change Among Participants and Partners

CO-OP HP leadership has established a number of ways to document
progress and understand the impact the CO-OP HP initiatives have in the
Humboldt Park community. In the summer of 2009, the CO-OP HP Steering
Committee revised the original CO-OP HP survey developed by SUHI
(described above) and administered it again to 200 residents in Humboldt
188 TRANSLATING DATA INTO COMMUNITY ACTION

Park. As of press time, the results have been shared with the steering com-
mittee and plans are under way to release them to the community. CO-OP
HP leadership will host a Town Hall meeting to disseminate the results of
the second wave of the survey and to share any changes that have occurred
as measured through the survey. In addition, CLOCC staff is conducting
interviews with CO-OP HP partners and other organizations in Humboldt
Park to learn about the ways that CO-OP HP facilitates interorganizational
collaboration on issues related to healthy lifestyles.
Several CO-OP HP interventions have also been evaluated as stand-alone
strategies. As described above, a survey of Market Basket consumers helped
to identify strengths and weaknesses of the intervention and led to the devel-
opment of the locally managed La Cosecha. The one-time survey among
Producemobile participants (described above) clarified the additional ser-
vices that participants would welcome and utilize. CO-OP HP staff monitors
attendance and participation in ¡Muévete!, Producemobile, and La Cosecha
to understand the reach of these interventions. The trends in participa-
tion help CO-OP HP leadership to problem-solve and make adjustments in
programming to ensure that programs are used to their maximum potential.
The tables below present trends in participation in the two key intervention
strategies that involve individual community residents.
Table 8-3 presents average monthly participation in the Produce Purchase
Program each year from 2005 when Market Basket was initiated to the middle
of 2009. Table 8-4 presents average monthly participation in Producemobile
from 2005 to 2009. Table 8-5 presents data on ¡Muevete! participation. This
table includes the total number of participant sessions (participants are counted
each time they participate, as opposed to only the first time) and the average
number of participants per class each year between the start of the program
in 2006 and the middle of 2009. Overall, these tables show that the CO-OP
HP programs that are free-of-charge experienced an increase in participation
each year, whereas the produce purchasing programs may be leveling or even
tapering off.

Tracking Change in the Social, Physical, and Institutional

Environment
Equally important to describing the effects of CO-OP HP programs is
documenting the changes that have occurred in the physical and institutional
environments in Humboldt Park. CO-OP HP has served as a catalyst that
encourages partner organizations to increase their focus on healthy lifestyle
promotion and programming. Changes are new enough that they are best
seen as promising trends. For example, more local organizations now include
healthy lifestyle promotion among their top priorities. Funders increas-
ingly view Humboldt Park as an appropriate community in which to invest
 Combating Childhood Obesity through a Neighborhood Coalition 189

TABLE 8-3 Annual Average Monthly Participation in Produce Purchase

Program

Period Average orders per month

October 1, 2005–June 30, 2006 63

July 1, 2006–June 30, 2007 77
July 1, 2007–June 30, 2008 70
February 1, 2009a –August 30, 2009 51
a
La Cosecha, a separate food basket distribution program, was initiated in February
2009.

TABLE 8-4 Annual Average Monthly Participation in Producemobile

Period Average Orders per Month

August 2005–June 2006 180

July 2006–June 2007 93
July 2007–Jun 2008 184
July 2008–June 2009 212

TABLE 8-5 Muévete Participation

Period Number of participant Average participants

sessionsa per class

January 9, 2006–June 916 18

30, 2006
July 1, 2006–June 30, 2,776 20
2007
July 1, 2007–June 30, 5,717 40
2008
July 1, 2008–June 30, 7,174 51
2009
a
Numbers reflect the total number of people in each session, not unique individuals
who participated.

because of the synergy created by CO-OP HP and its partner organizations.

For example, the Sprague Institute has funded other initiatives in the area to
support and/or reinforce CO-OP HP goals. These initiatives include nutrition
counseling and a fitness center for those with chronic conditions who visit
the local health department clinic as well as school nurse aids in Humboldt
Park schools to help with administrative functions, freeing the nurses to
conduct more prevention and disease management activities. Other CLOCC
funders have been increasingly willing to fund initiatives in Humboldt Park
because of the demonstrated commitment of local organizations to obesity
prevention strategies.
190 TRANSLATING DATA INTO COMMUNITY ACTION

Participating organizations, the PRCC chief among them, have expanded

initiatives to increase food access or physical activity beyond the CO-OP HP
partnership structure. Small businesses with products and services related to
healthy eating and physical activity are opening up or relocating within the
CO-OP HP boundaries, and existing businesses are beginning to integrate
new products or services into their business model—in particular, local res-
taurants are adding more healthy items to their menus (e.g., reducing sugar,
eliminating trans fat, introducing salads and fresh produce). Such changes
are indicators of the potential long-term sustainability of CO-OP HP’s goals,
whether or not the current structure of CO-OP HP endures. Systems for doc-
umenting these changes over time remain both a goal and a challenge for
CO-OP HP leadership and staff.

Understanding CO-OP HP: Some Lessons Learned

Over the last 5 years, CO-OP HP staff and partners have learned a num-
ber of lessons that have helped them to refine obesity prevention strategies.
CLOCC has disseminated these lessons through a number of technical assis-
tance initiatives locally and across the country; these lessons have been
especially useful as CLOCC expands the CO-OP HP strategy to two new
communities in Chicago. These lessons are presented here in the hopes that
they can support readers who are interested in established similarly holistic
and locally driven initiatives.

Maintaining a Focus on the Entire Community

Inclusivity in a racially and ethnically diverse community is a constant goal

and a constant challenge. As originally envisioned, CO-OP HP was to cut
across racial and ethnic divisions in HP, involving multiple organizations
based in various demographically defined communities in the leadership, and
fielding programs that served all who might benefit. Although some progress
was made, this remains a vision that has not been fully realized. The involve-
ment of Centro Sin Fronteras (CSF) as a partner in the CO-OP HP steer-
ing committee, and the organization’s legitimacy among Mexican-Americans,
made it possible to conduct the Community Wellness survey (Estarziau et al.,
2006) and obtain equal samples of Puerto Rican and Mexican residents. CSF’s
involvement resulted in shared management of some programs and wide pub-
licity of CO-OP HP work in the Mexican community. But over 1 or 2 years,
immigration activism increasingly absorbed the CSF leaders, who eventually
dropped out of CO-OP HP. One of the factors that contributed to this was
sparse funding, which made it impossible to keep CSF leaders in paid roles.
 Combating Childhood Obesity through a Neighborhood Coalition 191

Several efforts were made early on to bring on Black organizers to iden-

tify and engage groups in CO-OP HP. None of these efforts worked. After
several years, when CLOCC was able to hire a full-time networker for the
Black community just west of the Puerto Rican one, he became an active
participant in CO-OP HP. This allowed some activities to cross commu-
nities (e.g., the Producemobile). But for others—for example, ¡Muévete!—
strong informal boundaries required the creation of parallel activities in the
Black community. Again, limitations in funding made it impossible to offer
incentives that might have helped to bridge the divide.

Forging Connections
Embedding neighborhood activities within a broader city-based network
can enhance local efforts. As described above, many CO-OP HP pro-
grams benefitted from the involvement of organizations that were part of
the CLOCC network but not based in Humboldt Park. For example, nutri-
tion education was provided by organizations outside of the community.
¡Muévete! faced challenges from time-to-time when Chicago Park District
policies set at the central-office level did not fit with the agreements made
locally (e.g., the use of free space, programming for participants’ children).
CLOCC’s links to central office staff were beneficial in ironing out these
challenges.
Similarly, there are other organizations located within Humboldt Park
or serving the community that are not formal partners of CO-OP HP or
of CLOCC. CO-OP HP’s staffing model and budget are modest. As such,
CO-OP HP is not envisioned as the sole agent of change. One of CO-OP
HP’s goals, then, is to increase awareness of and attention to the multidimen-
sional factors that contribute to childhood obesity so that local programs,
services, and the environment will be more conducive to healthy eating and
physical activity for children and families.

Encouraging Participation and Expanding Reach

Linking action at the organizational level to benefits for community resi-
dents is a continuing challenge. Ensuring that community residents are con-
nected to available programs and services and take advantage of positive
environmental changes remains a challenge reflected in the participation
rates described earlier. Significant resources are put toward promoting pro-
grams (e.g., distributing flyers door-to-door, purchasing advertising space in
local newspapers, “tabling” at community events), yet CO-OP HP leader-
ship continues to work to increase community participation.
192 TRANSLATING DATA INTO COMMUNITY ACTION

Phases of Development
Community-driven strategies with minimal funding must be flexible enough
to take advantage of opportunities as they arise and include new partners as
they emerge. Although intervention strategies with significant funding for
planning, implementation, and evaluation over long periods of time can be
predetermined, those with minimal funding must rely on the opportunities
that arise as organizational resources, focus, and capacity shifts over time.
Programs that evolve organically are likely to experience distinct phases of
development. CO-OP HP was 5 years old in 2009, and those who have been
involved since its start can now see relatively clear but unplanned phases
in its development. The start-up phase took it from conception to a steering
committee of five or six organizations and through the wellness survey and
focus groups. The work was funded, and optimism prevailed. Funding was
obtained by all three of the leadership groups. This period was filled with
the energy of novelty and creation.
The program development phase was a more sober one. The steering com-
mittee became smaller, and the focus of work became more clearly the Puerto
Rican community. Food initiatives—including the market basket program,
Producemobile, and the farmers’ market—got off to strong starts but then hit
challenges. It is daunting to create new food distribution systems, even when
they are clearly needed. Chicago’s short growing season and dense city traf-
fic made it hard to draw a critical mass of produce growers to the farmers’
market, where prices were high for many residents. The logistics of helping
area residents to use public assistance benefits (e.g., Women, Infants, and
Children [WIC], Food Stamps) to buy produce were challenging. Area res-
ident participation was inconsistent. The idea of backyard community gar-
dening did not catch on as widely as once hoped.
One physical activity program, ¡Muévete!, grew steadily under the charis-
matic leadership of its founder. But it, too, faced serious obstacles. Its attendees
counted on it being a free program, so it generated no income and depended
on Chicago Park District willingness to provide free space. Childcare was
not available, and this proved to be a disruptive issue. Other physical activ-
ity programs, mostly related to biking, were slow to grow. Sprague fund-
ing shifted to CLOCC, and most of the fundraising came through CLOCC.
Sustainability became a real worry.
CO-OP HP is currently in its third phase of development. This is a phase
of maturation and long-term planning and, with these, of renewed energy
and momentum. Interest in the CO-OP strategy has grown in Chicago. Two
new CO-OPs have been established by CLOCC and key community partners
in other neighborhoods (one Mexican-American, one Black). Funders are
increasingly willing to invest in the model and its evaluation. Each CO-OP,
 Combating Childhood Obesity through a Neighborhood Coalition 193

although similar to the others in structure and focus, has unique character-
istics relevant to the local community context. Clearly, CO-OP HP has had
an impact on the organizations involved. Environmental changes are also
beginning to occur as all the CO-OPs seek to create long-term, sustainable
change.
Measurement of impact on community residents remains to be done and
will be a long-term challenge. Yet there is growing national consensus that
improved community health status only becomes possible when locally
based, respected organizations make long-term commitments to creating the
multicomponent environment that is needed for sustained changes in life-
style. CO-OP HP is shining a light on how that can be done.

Engaging Organizational Staff

Program success is tied to how well the vision, mission, and goals are articu-
lated to the entire staff of the host organization, beyond those who are work-
ing on the particular initiative. If organizational staff members do not see
programs and the behaviors promoted through them as important, then their
participation may be limited. Lack of participation among organizational
staff may also result in the lack of translation within the community at large.
More buy-in among organizational staff will likely lead to those staff mem-
bers promoting the programs within their own social networks. Conversely,
lack of such participation can dissuade the community at large—even if
staff members are not explicitly discouraging such participation. Community
members may be well-aware that organization staff are not participating in
the organization’s own programs and interpret that as a lack of confidence
in the program or an indication that the recommended behaviors are not that
important.
The PRCC has taken a number of steps to ensure that increasing numbers
of staff participate in the programs so that the broader community can see the
shared commitment across the organization. During monthly all-staff meet-
ings, CO-OP HP staff members promote the various healthy lifestyle inter-
ventions. At biweekly directors’ meetings, the CO-OP HP manager reports
in more detail on successes and challenges faced by CO-OP HP, and the
team discusses methods for increasing organizational involvement in CO-OP
HP programs. Data on levels of participation by PRCC staff are used to help
CO-OP HP staff identify opportunities to increase staff participation.
Although these strategies have helped, they have not fully solved the
problems. CO-OP HP staff is looking to more innovative approaches to
promoting CO-OP HP programs and the importance of healthy lifestyles.
These include the use of social networking media and implementing program
demonstrations at PRCC events.
194 TRANSLATING DATA INTO COMMUNITY ACTION

Next Steps and the Sustainability of CO-OP HP

Strategies and Philosophy

Although fund-raising for CO-OP HP has been challenging, PRCC contin-

ues to develop new ideas and plans for future projects. As previously stated,
the Urban Agricultural Initiative is a community-wide effort developed to
address the priority problems of availability and accessibility of fresh pro-
duce in the community. The future role of CO-OP HP will be to support
urban farming endeavors by providing marketing services and through the
distribution of the produce. Of the initiative’s many components, the central
goal is to engage community residents to take ownership and begin growing
the produce they consume. CO-OP HP, through the distribution mechanisms
already in place, hopes to make the produce available for sale to community
residents at the farmers’ market, through La Cosecha, to local restaurants,
and to grocery stores. As the Urban Agricultural Initiative develops, PRCC
and CO-OP HP staff hopes to rely less on the large commercial produce
suppliers to meet the growing demands of community consumption. Current
efforts will be expanded as funding allows, and new opportunities will be
leveraged as they emerge.
CO-OP HP staff envisions an intersection between the local produce grow-
ing initiatives and the cycling programs it has helped establish. CO-OP HP
and Ciclo Urbano staff have begun discussions centered on the construction
of bicycle trailers specifically designed to carry and distribute locally grown
produce to retail outlets and the farmers’ market. These same produce trail-
ers could circulate throughout the community offering produce for sale, as
was traditionally common in towns in Puerto Rico with the “Pregoneros”
(fruit and vegetable peddlers who traveled on foot) and is currently common
in Latino communities in Chicago with produce trucks and street vendors.
This envisioned strategy would not only employ community residents but
encourage them to take up bicycle riding as an alternative mode of transpor-
tation and reducing the community’s carbon footprint in the end.
Although cycling as physical activity is seen as an important distribu-
tion component of the Urban Agricultural Initiative, CO-OP HP staff is also
developing ideas for sustaining and expanding the successful ¡Muévete! ini-
tiative. Increasingly, CO-OP HP staff describes ¡Muévete! as a comprehen-
sive physical activity promotion strategy that includes not only the current
dance aerobics program but also cycling, walking, and other forms of active
transportation. For example, in collaboration with Ciclo Urbano, CO-OP HP
staff has returned to the concept of weekly bicycle rides, now named Boricua
Bikes. Building on the original model, the rides will be organized to incor-
porate tours of significant historical/cultural markers in the community (i.e.,
Mural Tours, Garden Tours).
 Combating Childhood Obesity through a Neighborhood Coalition 195

The original idea for ¡Muévete! was based on walking, and Ms. Calderón
has re-introduced walking into her personal regime as well as into the
¡Muévete! initiative, with a ¡Muévete! walking session in the morning. She
is currently exploring the possibility of a walking club during the lunch hour.
Many agencies in the community employ community residents, making
local worksites a promising context for healthy lifestyle promotion among
community members. Many of these residents, in the various methods of
data collection, cite lack of time as a barrier to regular physical activity once
they get home. Organizing walking clubs during the lunch hour would help
to address that barrier. CO-OP HP staff also envisions healthy competitions
among teams of workers, with awards at the end of a defined period of time
for combined weight lost, miles walked, or other outcomes of interest.
The CO-OP HP experience, with all of its challenges, has inspired PRCC
staff and partner organizations to support CO-OP HP strategies and develop
new strategies. A primary element of this inspiration is the fact that these
strategies were not developed with large amounts of funding and were not
imported by external organizations. Instead, CO-OP HP’s successes almost
solely result from the most important resources that Humboldt Park has:
human capital and rich cultural tradition.
As described earlier, the data collected initially by SUHI and then later by
CO-OP HP staff and partners clearly described the needs of the Humboldt
Park community relative to nutrition and physical activity. Few residents met
daily recommendations for healthy behaviors. A plethora of environmental
and access barriers made healthy lifestyles difficult for community members
to achieve. Although CO-OP HP strategies to address these needs constantly
evolve as opportunities arise and dissipate, early data provide a constant
“goalpost” on which to focus. The data also provide a rationale that CO-OP
HP staff and leadership use to engage partners, funders, and the community
at large in innovative approaches to facilitate healthy eating and physical
activity for Humboldt Park residents. New data will provide an indication of
whether CO-OP HP has helped to move Humboldt Park closer to the goal
and whether additional goals must be set.

Acknowledgments

Staff and leadership of Community Organizing for Obesity Prevention in

Humboldt Park (CO-OP HP) would like to acknowledge the following orga-
nizations who have provided financial support: The Otho S. A. Sprague
Memorial Institute, Kraft Foods, the Chicago Tribune Charities, the Michael
and Susan Dell Foundation, the Chicago Community Trust, Local Initiatives
to Support Communities (LISC) Chicago, and the Administration for
196 TRANSLATING DATA INTO COMMUNITY ACTION

Children and Families of the Department of Health and Human Services.

The authors would also like to thank the staff and partners of the Puerto
Rican Cultural Center who have volunteered for and participated in CO-OP
HP events and programs. This chapter is dedicated to the children and fam-
ilies of the Greater Humboldt Park community. Their strength in the face of
adversity is a constant inspiration.

References

Baker, Elizabeth A., Marilyn M. Metzler, and Sandro Galea. 2005. Addressing social
determinants of health inequities: Learning from doing. American Journal of Public
Health 95(4):553–555.
Becker, Adam B., Matt Longjohn, and Katherine Kaufer Christoffel. 2008. Taking on
obesity in a big city: Consortium to Lower Obesity in Chicago Children (CLOCC).
Progress in Pediatric Cardiology 25:199–206.
Davison, Kirsten K. and Leann L. Birch. 2001. Childhood overweight: A contextual
model and recommendations for future research. Obesity Review 2(3):159–171.
Estarziau, Melanie, Miguel Morales, Anita Rico, Helen Margellos-Anast, Steven
Whitman, and Katherine Kaufer Christoffel. 2006. Report on the findings and rec-
ommendations of the Community Survey in Humboldt Park: Preventing obesity and
improving our health. Online. Available: www.suhichicago.org/files/publications/K.
pdf. Accessed November 30, 2009.
Illinois Department of Public Health (IDPH), Healthy Smiles Healthy Growth, 2003–
2004. Springfield, IL, 2006.
Mason, Maryann, Patricia Meleedy-Rey, Katherine Kaufer Christoffel, Matt Longjohn,
Myrna P. Garcia, and Catherine Ashlaw. 2006. Prevalence of overweight and risk of
overweight among 3- to 5-year-old Chicago children, 2002–2003. Journal of School
Health 76(3):104–110.
Margellos-Anast, Helen, Ami M. Shah, and Steven Whitman. 2008. Prevalence of obe-
sity among children in six Chicago communities: Findings from a health survey.
Public Health Reports 123:117–125.
McLeroy, Kenneth R., Daniel Bibeau, Alan Steckler, and Karen Glanz. 1988. An eco-
logical perspective on health promotion programs. Health Education Quarterly
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Whitman, Steven, Cynthia Williams, Ami M. Shah. 2004. Sinai Health System’s
Community Health Survey: Report 1. Chicago, IL: Sinai Health System. Online.
Available: www.suhichicago.org/files/publications/P.pdf. Accessed September 25,
2009.
9
FIGHTING CHILDHOOD OBESITY IN
A JEWISH COMMUNITY

Maureen R. Benjamins

Introduction

Inspired by the power of having specific health data for one’s own commu-
nity, leaders of the Jewish community in Chicago undertook the steps nec-
essary to conduct a similar survey within the most densely populated Jewish
neighborhoods (discussed in Chapter 4; Benjamins, 2010). This unique sur-
vey, the Jewish Community Health Survey of West Rogers Park and Peterson
Park, was able to identify many health issues within the community. Of
these, childhood obesity was selected by community members as the most
important problem to address because it was found to affect a large percent-
age of children and because it foreshadowed serious health consequences for
the future. Specifically, the community survey revealed that over half of all
children in this Jewish community were overweight or obese. Unfortunately,
the consequences of being overweight are considerable, including being at
higher risk for a wide variety of health outcomes such as lowered life expec-
tancy, diabetes, heart disease, stroke, and impaired mobility, as well as social
and emotional problems (Must et al., 1999; Mokdad et al., 2003).
This chapter presents additional details about childhood obesity in this
community, including age and gender differences and possible determinants.
Following this is a detailed description of the development, implementation,
and evaluation of a school-based intervention designed to reduce obesity

197
198 TRANSLATING DATA INTO COMMUNITY ACTION

rates among children in Jewish day schools in Chicago. This intervention,

the Jewish Day School Wellness Initiative, has produced substantial changes
within the schools and students of the Associated Talmud Torah school sys-
tem over a 4-year intervention period (2006–2010). These results will be
shared, as will information on how the model has been disseminated to other
Jewish communities across the country.

Data
The survey data showed that among Jewish children ages 2 to 12 years liv-
ing in this community, 28% were overweight and an additional 26% were
obese. In other words, less than half were an appropriate weight for their
height. Children were classified as overweight or obese based on their body
mass index (BMI). BMI is calculated with a formula that uses an individu-
al’s weight and height (703 * [weight in pounds]/[height in inches] * [height in
inches]). The categorization for children was done according to the Center
for Disease Control and Prevention’s (CDC’s) “BMI-for-age” gender-specific
charts (CDC, 2009a). Specifically, the following guidelines were used:
Underweight = BMI for age < 5th percentile, Normal weight = 5th percentile ≤
BMI for age < 85th percentile, Overweight = 85th percentile ≤ BMI for age <
95th percentile, and Obese = BMI for age ≥ 95th percentile.
The height and weight data were obtained from each child’s primary
caregiver. It is important to note that only 58 interviews were conducted
for children. and of these, only 50 were older than age 2 years (and thus
old enough to use the BMI measures). Furthermore, valid height and weight
data were only available for 43 of these children. The community survey
results discussed here are based on this small sample, and these data are
unweighted.

Distribution of Weight Status

Figure 9-1 shows the percent of children in each BMI category by gender. Boys
were more likely to be normal/underweight or overweight, whereas girls were
disproportionately in the obese category. In fact, more than one-third of girls
included in this survey were obese. As a result, there were almost as many
obese children as overweight ones. It is also helpful to examine BMI status by
age group. As seen in Figure 9-2, older children (those ages 6–12 years) were
more likely to be overweight in both the Jewish survey and in a national sam-
ple compared to children ages 2 to 5 years. This trend is also seen in national
data for obesity. In contrast, the younger Jewish children were significantly
more likely to be obese. Remarkably, more than one-third of children ages 2 to
5 years were obese in this Jewish community according to the survey.
 Fighting Childhood Obesity in a Jewish Community 199

60 Total
Male
50
Female
40
Percent

30

20

10

0
Normal or Underweight Overweight Obese

Figure 9-1 Children’s Weight Status by Gender

Source: Jewish Community Health Survey, 2003.
Notes: Data represents children 2–12 years of age; N = 43.

60

50

26 21
40
36 15
Percent

13 Obese
30
10 Overweight
20
32 30
28 26
10 18 21

0
WRP U.S. WRP U.S. WRP U.S.

All children 2–5 years 6–12 years

Figure 9-2 Children’s Weight Status by Age

Source: Jewish Community Health Survey, 2003; NHANES, 1999–2000.
Notes: U.S. data is for children 2–5 years and 6–11 years of age. WRP = West Rogers
Park.

Perceived Weight Status

To better understand factors influencing childhood obesity, the primary

caregiver for each child (who was almost exclusively a parent) was asked to
describe their child’s weight. These questions showed a large discrepancy
200 TRANSLATING DATA INTO COMMUNITY ACTION

Over-
weight
24%
About
the right
weight 76%

Figure 9-3 How Parents of Overweight and Obese Children Perceive Their Child’s
Weight
Source: Jewish Community Health Survey, 2003.

between the parent’s perceptions and the child’s actual weight status. Overall,
nearly half of the parents did not correctly classify their children. This is
particularly problematic for those with overweight or obese children, where
less than one-fourth of parents of an overweight child correctly perceived
that their child had weight problems (Fig. 9-3). These results are similar
to those found in other populations (Jeffery et al., 2005). If parents can-
not adequately identify weight problems in their children, it is increasingly
important for physicians to do so. Unfortunately, the data from our survey
showed that only 24% of overweight or obese children had been advised to
lose weight by their doctor in the previous year (data not shown).

Eating Habits
The community survey also provided insight into the eating habits of chil-
dren living in this community. Several questions identified promising targets
for possible intervention. For example, more than two-thirds of all children
failed to eat the recommended number of servings of fruits and vegetables
each day (Table 9-1). Unfortunately, this percentage would be even higher if
fruit juices were not included in the question. In addition, nearly one-third of
children ate fast food at least once a week. This percentage was higher for
overweight and obese children compared to non-overweight children (38%
vs 28%, not shown). Other unhealthy eating habits were also seen. For exam-
ple, one-third of children reported eating baked goods four or more times a
week and approximately one-fourth ate chips at least this often. These find-
ings indicated that any intervention would need to focus on improving nutri-
tional habits by both increasing the amounts of healthy foods consumed and
limiting the amount of unhealthy foods that children eat on a regular basis.
 Fighting Childhood Obesity in a Jewish Community 201

TABLE 9-1 Weight-Related Issues Among Children in the Jewish

Community Health Survey
• Students and staff will demonstrate improved knowledge, attitudes, and
beliefs about nutrition and physical activity.
• Students and staff will report better dietary choices.
• Soft drinks and candy will be eliminated from school vending
machines.
• All school events for students, staff, or parents will offer healthier
options.
• Foods served during breakfast or lunch programs will have improved nutri-
tional content (such as less calories and fat, or more vitamins or minerals).
• Students will consume less baked goods, candy, and soda through
classroom-sponsored parties and other school events.
• The percentage of students who reach recommended levels of physical
activity will increase.
• The percentage of students reporting disordered eating behaviors will
decrease.

Levels of Physical Activity

Several questions were also asked about the children’s physical activity levels.
The findings showed that about half of the children (48%) watched TV for
at least an hour every day (Table 9-1). About the same percentage reported
levels of activity below the recommended amount of 1 hour or more per day.
Specifically, only 51% reported being active 1 hour or more a day. Despite
the barriers to being involved in organized sports (such as the fact that many
Jewish day schools do not have any sports teams and that observant Jews do
not participate in such activities on Saturdays), approximately 68% of chil-
dren played in some type of organized activity (such as a sports team).

Intervention

Process, Partners, and Funding

Process
The findings discussed above, along with the rest of the survey results, were
presented to all interested organizations and individuals within the Jewish
community of Chicago. Specifically, the project director from the Sinai
Urban Health Institute (SUHI) and a member of the local Jewish Federation
held open meetings with local rabbis, social service providers, health-care
providers, educators, lay leadership, and other community members and
202 TRANSLATING DATA INTO COMMUNITY ACTION

groups. These sessions were designed to share information about the surveys
and its findings, as well as to elicit feedback about how to translate this data
into actual changes within the community. Individuals attending these ses-
sions were asked two questions after being told about the survey findings:
(1) What is the most important issue to address first? and (2) Who should we
partner with to address that issue? Almost without exception, the community
members said that childhood obesity was the health problem that should be
addressed first. The most frequently suggested partner was the Jewish school
system, the Associated Talmud Torahs (ATT), although synagogues, summer
camps, and childcare sites were also mentioned.

Partners
Since the initial data collection effort in 2003 to 2004, the strong part-
nership between the Jewish Federation and SUHI has continued. In particu-
lar, members of the Jewish Federation were instrumental in finding financial
support for the proposed intervention and in helping to establish SUHI as
a trustworthy partner for the Jewish community. This latter task was espe-
cially important for this project given the inclusive nature of the Orthodox
community and SUHI’s lack of experience working with this community
in the past. For the school initiative, these two partners reached out to the
ATT, which is the only Jewish school system within the Chicago region.
It includes approximately 20 elementary, middle, and high schools. Not all
Jewish day schools in the city or metropolitan region are members of ATT,
although most of the Orthodox ones are.
The steering committee that was convened to oversee the first two phases
of the initiative (data collection and analysis) was also used to lead the school-
based obesity prevention intervention. Specifically, members came from the
Jewish Federation, SUHI (the institute’s director and the epidemiologist who
served as project director), and the ATT school system (the director of stu-
dent services). One member of the committee was from the local Orthodox
community. This committee met quarterly during the first years of the inter-
vention and as necessary afterward.

Funding
The first 3 years of the school-based intervention, the Jewish Day School
Wellness Initiative, were primarily funded by two local foundations, the
Michael Reese Health Trust and the Polk Bros. Foundation. These foun-
dations were also supporters of the data collection efforts, and both were
interested in building on their initial investments by being involved with
subsequent steps to address the health issues revealed by the survey. A small
amount of additional funding for the first year came from the Washington
Square Health Foundation, another local organization. Funding for the fourth
 Fighting Childhood Obesity in a Jewish Community 203

year came exclusively from the Michael Reese Health Trust. This foundation
funded the project as a “proactive” grant, which means that they sought out
the project and were actively involved in its development and direction.

Jewish Day School Wellness Initiative

Even before funding was received, it was necessary to find individual schools
that would be willing to serve as pilot schools for the proposed interven-
tion. This step was facilitated by a meeting with all ATT principals during
which the survey data were presented. At the conclusion of this meeting, the
principals were asked if they would be interested in participating in a pilot
study, should funding be received. All principals present (approximately 15)
indicated that they would like to participate. Two elementary schools (grades
K–8) were chosen by the grant steering committee, with input from the
ATT administration. These schools, Joan Dachs Bais Yaakov and Yeshivas
Tiferes Tzvi, were selected because they were in the geographic region of
the original community survey, their administrators were motivated to make
changes, and the schools (and school families) were considered to have
fewer resources than others within the system. Joan Dachs Bais Yaakov had
approximately 400 female students, and Yeshivas Tiferes Tzvi had approxi-
mately 250 male students.

Need for Culturally Appropriate Model

Once funded, the first challenge faced by the project staff was that inter-
ventions developed for public schools would likely be inappropriate or
ineffective in a Jewish school system because there are specific dietary,
behavioral, and belief systems that differentiate Jewish individuals from
other populations. This is particularly true for Orthodox Jews, for whom the
current initiative was developed. For example, Jews who keep kosher do not
eat pork, shellfish, or dairy and meat at the same meal. As an example of
behavioral differences, observant Jews follow modesty guidelines (Tzniut)
that affect their speech, interpersonal conduct, and mode of dressing. For
example, observant women wear skirts that fall below the knee (no pants or
shorts) and their shirts must cover their collarbone and elbows. These rules
must be followed at all times, even when exercising. Furthermore, obser-
vant women are restricted from swimming, biking, hiking, or jogging in
public or in mixed company. These are just a few examples of the many
guidelines that distinguish observant Jews from other individuals. However,
even among Orthodox Jews, interpretation of or adherence to these rules and
norms may vary by community, family, or individual.
In addition, numerous relatively unique characteristics of Orthodox day
schools made addressing childhood obesity a challenge. The most obvious
204 TRANSLATING DATA INTO COMMUNITY ACTION

limitation was the lack of culturally appropriate health materials. Perhaps

because of the difficulty of finding acceptable materials, the pilot schools
(and most other schools in the school system) had no existing health edu-
cation curriculum. In addition, day schools generally taught a “dual curric-
ulum” in which half of the day was reserved for secular subjects (such as
math, science, English, and social studies) and the other half was used for
religious studies. Thus, the shortage of time for health education that public
schools face was doubled because health classes needed to fit into one half
of the day along with all other secular subjects.
Several other school-related factors also hindered efforts in this area.
Specifically, most of the schools did not have federally funded meal pro-
grams and, as such, were not required to follow the recently established
federal policies requiring school districts to have a wellness policy and a
wellness council. In addition, the pilot schools belong to a network of schools,
not a formal school district. This means that policies have to be made by
each school instead of by a district superintendent, so no single mandate to
include health curriculum, for example, can be declared. Finally, one cul-
tural factor that plays a role in any programming or educational efforts is
that Orthodox families are unusually large. For example, the student surveys
found that students in the pilot schools had 6.4 siblings, on average. This is
in contrast to the average American household with children, which includes
just under two children (U.S. Census, 2008). Correspondingly, the families
within this school community were on limited budgets, and the parents had
greatly restricted amounts of time to attend meetings or educational events
or even to read materials sent home.

Intervention Design
For the reasons noted above, it was clear that a culturally appropriate
model of school wellness was necessary. After researching existing mod-
els, the Coordinated School Health Program (CSHP) model developed by
the CDC was selected to guide the development of the Jewish day school
intervention (CDC, 2008). Primary focus was placed on five of the original
eight components of the CSHP model: health education, physical education,
school environment, family involvement, and staff wellness. The remaining
components (health services; nutrition services; and counseling, psycholog-
ical, and social services) were deemed to be less relevant to these schools
because of their lack of formal positions or programming in these areas.
However, throughout the course of the intervention, these remaining areas
were addressed to varying degrees.
During the first year of the 2-year pilot, project staff developed or adapted
health materials to make them culturally acceptable. This included review-
ing entire health curriculum guides and adapting each lesson to remove all
 Fighting Childhood Obesity in a Jewish Community 205

TABLE 9-2 Goals and Objectives of the Jewish Day School

Wellness Initiative

Eating Habits
Eats ≥ 5 fruits or vegetables a day 30%
Eats fast food weekly 32%
Eats baked goods 4+ times per week 26%
Eats chips 4+ times per week
Activities
Watches TV ≥ 1 hour per day 48%
Active play ≥ 1 hour per day 51%
Participates in organized sports 68%

Notes: Children 2–12 years of age; n = 44.

mentions of non-kosher foods, television viewing, and other topics deemed

inappropriate or irrelevant by the school administrators. To meet the goals
outlined in Table 9-2, each of the participating schools was required to form
a health committee, write a school wellness policy, and implement at least
one project from each of the five defined intervention areas. These areas are:
health education, physical education, family involvement, school environ-
ment, and staff wellness, as described below.
Health Education Project staff selected several health curriculum guides
that had been empirically shown to improve health knowledge, behaviors, or
outcomes for use in these schools. School administrators were then given all
the choices to review and were allowed to pick the specific ones they wished
to use in their school. All lessons that included culturally inappropriate mate-
rials were adapted, and the adapted lesson plans were given to the teachers,
along with supplemental resources, in grade-specific binders. Teacher train-
ing sessions were held to familiarize staff with the materials once at the
beginning of the year for each school. Schools were instructed to implement
at least two lessons per month in all grades (K–8). In addition, special atten-
tion was given to mental and emotional health issues. Led by a mental health
consultant from a local Jewish social service agency, this part of the program
provided culturally appropriate education on body image, self-esteem, con-
flict resolution, eating disorders, and other related issues for middle school
girls. Finally, an effective health education program needs to supplement the
formal teaching of the curriculum with other related activities. The schools
were allowed to select one or more other options to implement, such as a
health tip of the day, health information in school newsletters, displays in the
hallway or cafeteria, a health fair, or creating a health section of books in the
library, among others. In all cases, the project staff was available to assist
the schools in acquiring any additional materials; for example, schools were
offered two different sets of short articles that could be included in school
206 TRANSLATING DATA INTO COMMUNITY ACTION

newsletters or given to parents or teachers throughout the year, one of which

was religiously based.
Physical Education A small grant was given to each school as part of the
intervention to implement or improve their physical education programs
or to otherwise increase the amount of physical activity that the students
received during the school day. Each school determined how to best use
this money. Uses of the money included initiating before- or after-school
activities, purchasing physical education curriculum guides or activity kits,
and purchasing fitness equipment (e.g., jump ropes, resistance bands, hand
weights, pedometers, mats, and balls). An emphasis was placed on expendi-
tures that would continue to support physical activity among students after
the grant ended.
Family Involvement The involvement of parents and other family mem-
bers was an important component of this initiative. At least one parent had
to be included on the health committee for each school, and, preferably, a
parent was selected to chair each committee. Schools were also encouraged
to make the wellness committee part of the existing parent organization
to facilitate parent involvement and improve the project’s sustainability. In
addition, many other grant activities were focused on increasing parental
knowledge concerning nutrition, physical activity, and eating disorders. For
example, the health educator was available to provide information at school
events (such as orientation or parent–teacher conferences), health fairs, and
through school newsletters that were sent home to parents.
School Environment To provide a supportive environment and to be con-
sistent with the messages being taught through health and gym classes, the
schools were expected to make changes to policies and structures related to
health. Schools were specifically encouraged to provide ample opportunities
for physical activity, allow students easy access to water, and limit exposure
to unhealthy foods such as soda and candy. In addition, schools were asked
to take steps toward the goal of prohibiting the use of foods as rewards.
This is one commonly recommended policy designed to reduce children’s
exposure to unhealthy foods, as well as to prevent unhealthy eating habits
caused by thinking of food as a reward instead of strictly as a source of
nourishment.
Health Promotion for Staff Because teachers are such important role mod-
els, a variety of health promotion seminars and activities were made avail-
able for school staff. Each school had a designated amount of the health
educator’s time to provide whatever education or training they deemed most
important. The health educator was available to speak at staff meetings or
other times. Staff were also invited to all educational sessions and activities
 Fighting Childhood Obesity in a Jewish Community 207

offered to parents. Teachers were encouraged to participate on the wellness

council, and ideas for other staff wellness changes were solicited. Several
no-cost (or low-cost) ideas were implemented for the staff during the pilot
project. For example, a bulletin board in the staff lounge was organized for
staff members at one school to post healthy recipes, and walking groups
before or after school were started.

Evaluation
The goals of the evaluation process were twofold. First, an initial assess-
ment was needed to guide the development of the project. Second, the eval-
uation enabled project staff to determine if the changes being made in the
schools resulted in any improvements in student knowledge, attitudes, behav-
iors, and/or BMI.
The evaluation involved numerous tools to best gauge the progress and
outcomes of the interventions. First, student surveys were conducted during
class to evaluate changes in self-reported behaviors, attitudes, and knowl-
edge. The questionnaires included items on average intake of different foods,
beverage intake, levels of physical activity, motivation to be healthy, body
image, and perceived support for healthy behaviors. The survey for younger
students (grades K–4) was adapted from the Hearts N’ Parks Survey, which
has been used extensively across the country to measure eating habits and
nutritional knowledge of young children (NHLBI, 2009). The survey for
older students (grades 5–8) was created using a variety of measures from
existing surveys, particularly from the Youth Risk Behavior Surveillance
System (YRBSS), which is one of the largest federal sources of informa-
tion on adolescent and child health (CDC, 2009b). New questions tailored
to the target population were also added. Surveys were also conducted for
staff members and parents. These surveys measured health knowledge,
opinions regarding health education, changes in school policies, and other
related issues.
In addition, the School Health Index, a nationally used school-level assess-
ment tool, was used to look at changes in school environment and policies
(CDC, 2009c). This tool was filled out by a team of individuals from each
school representing administration, staff, and parents. It offered summary
scores for numerous areas and related suggestions for improvement. Although
time-consuming, this tool was helpful for guiding the newly formed wellness
councils and for making the schools aware of all of the various aspects of
the school that are related to student health.
Finally, BMI was collected for all students in grades K through 8 at the
two pilot schools. For these measurements (as well as the surveys), parents
were able to “opt out” if they did not want their child or children to partici-
pate. Students were also required to give their assent as well. The height and
208 TRANSLATING DATA INTO COMMUNITY ACTION

TABLE 9-3 Health-Related Outcomes from the Student Survey for Students
in Grades 2–4

Range 2006a Mean 2008 Mean Significant

(S.D.) (S.D.) Differenceb
2nd Grade n = 61 n = 77
Nutrition Knowledge 0–7 5.11 6.09 ***
Eating Healthy 0–7 4.51 3.54 ***
Eating Intention 0–6 3.16 2.57 *
Confidence in Physical 4–12 9.21 9.73
Abilities
3rd Grade n = 66 n = 69
Nutrition Knowledge 0–7 5.36 6.19 ***
Eating Healthy 0–7 3.86 4.14
Eating Intention 0–6 2.65 3.07
Confidence in Physical 4–12 10.05 9.62
Abilities
4th Grade n = 69 n = 44
Nutrition Knowledge 0–7 5.42 5.66
Eating Healthy 0–7 3.46 3.09
Eating Intention 0–6 2.22 1.84
Confidence in 4–12 10.19 10.56
Physical Abilities

Note: *p ≤ 0.05; **p ≤ 0.01; ***p ≤ 0.001.

a
First graders were not included in the analyses since the 1st graders in year 2 did not participate
in the intervention in year 1 as kindergartners.
b
Wilcoxon-Mann-Whitney rank sum test used to determine significance of differences
S.D. = Standard Deviation.

weight measurements were taken in a private room by the part-time school

nurse, who was a member of the community.
All schools completed the surveys and the School Health Index at their
entry into the project (baseline) and then once at the end of each grant year
(years 1–4). BMI screenings were performed three times (baseline of the
pilot project, end of year 2, and end of year 3). Finally, for the process eval-
uation, all schools were required to submit quarterly reports that detailed
all health-related activities and purchases. Only results from the 2-year pilot
project are discussed here.

Selected Outcomes
Younger Student Surveys Table 9-3 shows selected health-related out-
comes for students in grades 2 to 4. The most notable change for these
grades following the intervention period was seen for nutritional knowl-
edge. Specifically, the percentage of students in grades 2 and 3 who could
correctly identify the healthiest foods increased significantly between 2006
 Fighting Childhood Obesity in a Jewish Community 209

TABLE 9-4 Health-Related Outcomes for Students in Grades 5–8 (n = 107)

2006a Percent 2008 Percent Significant

Differenceb
Knowledge
Knew fruit/vegetable
recommendations 16 34 **
Knew dairy recommendations 24 51 ***
attitudes
Unhappy with body behavior 21 16
Five fruits and/or vegetables 35 35
daily
Breakfast daily 52 49
Soda daily 24 23
Fast food weekly 25 27
Hour of activity four times a 41 62 ***
week
Exercising or dieting to lose 47 55
weight environment
Class parties involve sweets 64 70
Parents encourage exercise 31 37
Parents limit sweets 50 51
Parents limit soda 65 59
Parents exercise with children 14 10

Source : Table reprinted from Benjamins and Whitman, 2010.

Notes: *p ≤ 0.05; **p ≤ 0.01; ***p ≤ 0.001; all outcomes are dichotomous.
a
2006 data includes students in grades 5–7. 2008 data includes those same students 1 year
later, in grades 6–8.
b
McNemar’s chi-square tests used to determine significance of differences between
proportions.

and 2008. These questions asked, for example, which food was healthier:
whole wheat bread or white bread? By the end of the pilot project, 82% of
students answered all six knowledge questions correctly compared to only
57% at baseline. Seeing a change in knowledge first is common for new
health behavior interventions that often aim to improve knowledge first,
which then drives changes in intentions, and finally changes in behaviors.
Table 9-3 also reveals two other findings pointing in the opposite direc-
tion. Specifically, second graders reported eating more unhealthy foods
and that they would select less healthy foods if given a choice. Fortunately,
these negative findings were not seen for the other grades. For the rest of
the outcomes, there were no significant differences during the 2-year pilot
project.
Older Student Surveys Table 9-4 shows results for the older students
(grades 5–8). Selected measures related to knowledge, attitudes, behaviors,
210 TRANSLATING DATA INTO COMMUNITY ACTION

and environmental factors are displayed. To measure nutrition-related

knowledge, students were asked how many servings of fruits and vegeta-
bles health experts recommend eating every day. They were also asked how
many servings of dairy children should consume each day. The results show
that only 16% of students at baseline knew that they should eat five or more
servings of fruits and vegetables daily. By 2008, this number had increased
to 34% ( p < 0.01). A significant improvement was also seen for knowledge
of dairy recommendations. Specifically, the percentage who answered cor-
rectly increased from 24% to 51%, which is significant at p < 0.001. In anal-
yses not shown, it was discovered that the significant increase in knowledge
for the fruit and vegetable recommendation entirely resulted from increases
by female students. Similarly, increases in knowledge for the dairy recom-
mendation were also more significant for females. Overall differences in the
percent of students who knew this recommendation also favored girls.
To look for improvements related to mental and emotional health, students
were asked whether they were happy with their body and physical appear-
ance. Although the percentage reporting that they were slightly or very
unhappy with their body decreased from 21% to 16%, this difference did not
attain statistical significance.
Numerous questions were asked to measure intake of fruits and vegetables,
breakfast, various beverages, and fast food, among other items (Table 9-4).
Questions related to physical activity and possible signs of disordered eating
were also asked. The one significant change observed was that the percent-
age getting the recommended amount of daily activity (≥1 hour) 4 days or
more of the week increased. Overall, less than half of students reported this
level of activity before the intervention, but almost two-thirds reported it at
the end (41% to 62%, p < 0.001). Gender differences were found (not shown).
Specifically, the percentage of girls reaching this level of activity started off
lower and saw a less significant increase (36% to 53%, p < 0.01, for girls;
55% to 84%, p < 0.01, for boys).
Finally, students were asked a series of questions regarding the availability
of healthy and unhealthy foods at home and at school, as well as the extent to
which their parents encouraged physical activity. Unfortunately, no significant
changes were seen in the number of class parties that included candy, cookies,
cakes, or other sweets, nor in the limits that parents place on the children regard-
ing intake of sweets or soda. Similarly, the percentage reporting that their par-
ents encouraged them to exercise or play sports increased but not significantly.
A question about how often parents actually exercised with their children also
showed a lack of improvement as well as overall low initial numbers.
Staff Surveys All teachers were also given surveys at the beginning and
end of the 2-year pilot project. The survey for staff measured eating habits,
 Fighting Childhood Obesity in a Jewish Community 211

nutritional knowledge, physical activity, and attitudes related to nutrition. In

addition, questions were asked about classroom policies, teaching attitudes
and training, support for wellness initiatives, and participation in wellness
programming. The overall response rates were 68% (Fall 2006) and 52%
(Spring 2008). Some results are summarized below.
The percentage of staff who knew how many servings of fruits and vege-
tables children need each day did not significantly increase. New knowledge
questions in the second year showed that 61% of teachers knew the recom-
mended daily dairy intake for children and 81% knew that reduced fat milk
was healthier for children older than age 2 years. However, less than 30%
knew how much activity children should get each day.
In 2008, 59% of teachers felt that their eating behaviors influenced the eat-
ing behaviors of students. Also, 75% strongly agreed that the food students
eat during the school day affects their readiness to learn. Almost two-thirds
of responding staff members (62%) reported that they attended one or more
health education session in the last year (and 100% found these sessions
to be somewhat or very helpful). The average amount of physical activity
reported increased, whereas the percentage of staff who ate fast food two or
more times a week was cut in half. Many teachers reported improved overall
eating habits. For example, the percentage reporting fair or poor eating hab-
its decreased from 36% to 25%. Furthermore, the average amount of regular
physical activity increased. This is probably related to the fact that 68% of
responding staff members were currently trying to lose weight (compared to
57% at baseline). Significantly, of those trying to lose weight, 77% reported
that they were now exercising and eating healthier, compared to baseline
when only 42% were doing both.
The percentage reporting that they taught health lessons increased from
7% to 88%, with an average of six lessons taught the past year (range:
0–20). Overall, the perceived barriers to teaching decreased. Not hav-
ing enough time and health having a lower priority than other subjects
remained the top barriers. Of the responding staff, 40% had policies on the
nutritional content of snacks brought into their class compared to only 24%
at baseline (32% at the boys’ school, 17% at the girls’ school). More than
80% reported that the types of foods served at their class parties improved
in the prior year. In 2008, only 29% reported that they never used food
as a reward in their classroom, whereas 10% did it once a week or more.
Only half of the teachers would support a school-wide ban on this prac-
tice. Staff were more supportive of other policies, such as banning all soda
on school grounds (84% support), having a list of approved healthy snacks
(81% support), and banning the sale of unhealthy foods for fundraisers
(66% support).
212 TRANSLATING DATA INTO COMMUNITY ACTION

Parent Surveys Baseline and final surveys were mailed to all parents. These
surveys briefly measured eating habits, nutritional knowledge, physical activ-
ity, and attitudes related to nutrition. In addition, questions were asked about
the importance of health and physical education, support for wellness poli-
cies, and participation in wellness programming. The overall response rates
were 26% (Fall 2006) and 22% (Spring 2008). Because of the low response
rates, the results reported below cannot be considered representative of the
entire parent body. It is likely that those who felt most strongly about the
wellness program (either positively or negatively) were more apt to respond.
The percentage of parents who knew how much exercise children need
each day increased from 28% to 38%. Those reporting that they know and
understand current nutrition guidelines increased from 72% to 86%. The per-
centage of parents who think it is very important for schools to teach about
health increased from 65% to 79%. The percentage of parents who think it is
very important for schools to offer physical education increased marginally
from 71% to 78%. The percentage reporting that they eat fast food once a
week or more decreased from 25% to 19%. The average number of days that
parents get 20 to 30 minutes of moderate and/or vigorous exercise increased
slightly. The majority of parents responding to our survey were supportive
of healthy policies, such as a ban on soda on school grounds (90% support),
restrictions on unhealthy snacks (75% support), or a ban on using food as a
reward (80% support).
Nearly one-third of responding parents had been to a wellness council
meeting, 22% went to a nutrition workshop during orientation, 14% went
to the body image talk, and 6% had consulted individually with the dieti-
tian. The primary reason given for not attending each of these events was
not being able to (i.e., too busy or had something else to do). Almost every-
one knew when the council meetings were held and only small percentages
reported not knowing about the other activities. Finally, 92% of parents
reporting reading the health column in the school newsletter, and 89% found
it to be somewhat or very useful.
School Environment Changes As noted above, the School Health Index
(SHI) was completed by schools to assess school-level factors such as envi-
ronment, policies, organization, and curriculum. The ideal score for each
area is 100%. Results from the two pilot schools are described here.
Within the boys’ school, the largest improvements were noted in the areas
of health education, which increased from 0% to 71%, and staff wellness,
which increased from 0% to 54%. Health education scores reflected not only
having health education in each grade but also having professional develop-
ment in this area, culturally appropriate examples and activities, and cover-
ing a range of topics such as nutrition, physical activity, asthma, and tobacco
 Fighting Childhood Obesity in a Jewish Community 213

use. In addition, staff wellness improved greatly, especially in the areas of

nutrition education and training in first aid and CPR. More work was needed
for staff in the areas of health screenings and stress management and fitness
programs. Family involvement improved from 28% to 67%. The boys’ school
improved their family education, involvement in programs, and involvement
in planning meals. Work was needed to improve community access to school
facilities during non-school hours. Finally, the category of school policies
and the environment increased from 54% to 80%. A few improvements
included better communication of health and safety policies to parents and
staff, maintaining a safe physical environment, and the prohibition of using
physical activity as a punishment or food as a reward.
The girls’ school also showed the largest improvements in health edu-
cation (from 0% to 86%). Specifically, health education was now taught in
every grade, with appropriate staff training. The school administrators felt
they needed to work on getting more culturally appropriate examples and
activities, giving the students opportunities to practice their skills, and using
more active learning strategies. Big improvements were also seen for the cate-
gory of physical education (PE) (from 36% to 92%). Although the school was
nowhere near the 150 minutes of weekly physical activity recommended by
the National Association for Sport and Physical Education and other groups,
or the daily PE required by Illinois state law, they improved greatly by hiring
a trained and credentialed PE teacher who followed a sequential curriculum,
kept students moving, and made the class more enjoyable. Of the other areas,
staff wellness moved from the lowest category to the middle (17% to 54%),
family involvement increased from 39% to 50%, and school policies and the
environment improved from 63% to 83%. This latter increase was the result
of greater restrictions on unhealthy foods, new written policies on health and
safety, a safer physical environment, and professional development on health
risks like asthma.

Prevalence of Overweight and Obese Students The impetus of this school-

based initiative was the high level of childhood obesity in West Rogers
Park/Peterson Park identified by the Jewish Community Health Survey (see
Chapter 4; Benjamins, 2010). Although the results from this survey suggested
that more than half of all children ages 2 to 12 years in this community
were overweight or obese, these elevated rates were fortunately not found in
the pilot schools. This discrepancy may result from differences between the
community sample and the school population, the modes of data collection
between the community survey and the school data (i.e., proxy report vs.
measurement), or the individuals who declined to participate.
As noted above, BMI was collected for each student at the beginning of
year 1 of the pilot study (2006), at the end of year 2 (2008), and at the end of
214 TRANSLATING DATA INTO COMMUNITY ACTION

90 2006 2009
80
70 80
73
60
Percent

50
40
30

20 27
10 20

0
Normal or Underweight Overweight or Obese

Figure 9-4 Overall Weight Status by Year: Results of the Jewish Day School Wellness
Initiative Pilot Study
Note: Differences are significant at p < .05 based on McNemar chi-square tests.

year 3 (2009). BMI changes from the beginning of year 1 to the end of year
3 were examined. Participation rates at both time-points were high (88% and
84%, respectively, for boys; 91% and 88%, respectively, for girls), despite
many vocal objections from parents and students when the screenings were
announced. Those students who lacked parent consent or who declined
screening themselves were more likely to be overweight (assessed obser-
vationally by the nurse or project director) than those who were screened.
Thus, the estimates reported below likely underestimate rates of overweight
and obesity in the schools.
Although measurements for one time or the other were available for more
than 400 students, only 295 students had valid BMI data in both 2006 and
2009. The following findings are based on this sample. The results show
that the percentage of students classified as overweight or obese was sig-
nificantly lower at the end of year 3 than it was at the beginning of year 1
(Fig. 9-4). Specifically, 27% of students were classified as overweight or obese
in 2006, whereas only 20% were in this category in 2009. When examining
this difference more closely, the data show that 70 students were overweight
or obese in 2006 but moved into the normal or underweight category by
2009. Conversely, only 35 students were in the normal or underweight cate-
gory in 2006 but in the overweight or obese category in 2009. Analyses by
gender show that this change was primarily driven by boys. (The decrease
in percentage of overweight or obese girls was not significant.) Analyses by
grades show that the change was seen more frequently in younger grades
compared to older ones.
 Fighting Childhood Obesity in a Jewish Community 215

In addition to actually measuring students, the project staff originally

planned to analyze height and weight data from existing surveillance sys-
tems required by the state. Data would come from child health examination
forms for students entering the schools in kindergarten and those entering
sixth grade. The goal of analyzing this data was twofold. First, establishing
a system to collect and analyze the data would allow schools to begin their
own surveillance of obesity and related health risks within their student body.
Second, the data would provide baseline information for each school, which
could then be used as a comparison for all future years. These data were
not planned to measure changes in BMI over the intervention year (because
they are only collected once per year). However, several problems arose with
this plan. Most importantly, the schools were not interested in collecting this
type of data, nor in setting up a system to do it in the future. In addition,
they were concerned with the legal ramifications of using such data. Finally,
several of the schools were also reluctant to do anything that would associate
their wellness program with “obesity prevention” instead of maintaining a
more pro-social and positive image promoting overall wellness. For these
reasons, plans for setting up such a surveillance system were dropped.

Post-Pilot Activities
As alluded to above, the Jewish day school wellness project was able to
continue past the 2-year pilot intervention. Specifically, following the com-
pletion of the pilot intervention, funding was obtained to expand the newly
created model to three additional elementary schools (Akiba Schechter, Arie
Crown, and Hillel Torah). Together, nearly 2,000 children in grades K through
8 participated during this phase of initiative. As with the pilot intervention,
the expanded initiative focused on changes in the areas of health education,
physical education, school environment, family involvement, staff wellness,
and mental health. Subsequently, a fourth and final year was granted to the
project (2009–2010) to expand to all of the remaining schools in the school
system, including high schools.
In addition, a planning component was added to the project in this final
year to begin coordinating the funding, management, and roles of all health-
related services within the school system. Specifically, this component of
the project entailed taking a comprehensive inventory of all social and men-
tal health services, disability services, nursing services, and wellness-related
programming within each school and system-wide. Project and school sys-
tem staff also examined how the components work together (or do not) and
how they are funded in an effort to assess efficiencies, collaboration, and
sustainability. It was acknowledged that linking these services would enable
the system to better continue the work started during the wellness initiative,
as well as to identify other health-related gaps or overlaps in the system.
216 TRANSLATING DATA INTO COMMUNITY ACTION

Sustainability
One of the main areas of focus of the project in the third and fourth years
of the intervention was creating sustainable changes to continue benefiting
students beyond the grant period. Several strategies were used to accomplish
this, and examples are given here. To begin, schools were strongly encour-
aged to make the wellness council a subcommittee of their existing parent
organization. Beyond facilitating the sustainability of the mission, this was
considered useful for increasing parent familiarity with the program and pro-
viding a natural means by which to find volunteers for wellness activities and
events. Schools were also encouraged to focus on making policy changes that
would set standards for years to come. Some policies that were promoted
included prohibiting the use of foods as rewards, establishing guidelines for
appropriate snacks, making school campuses soda-free, and prohibiting the
sale of candy for fundraisers. To further encourage the continuation of school
changes, the project staff worked with school administrators and parents to
share information about available grants related to school wellness. Practice
writing grants was facilitated by making the schools write small grant appli-
cations to receive any grant funds from the project in the final year.
The schools were also left with a large amount of culturally appropri-
ate educational materials that were collected, adapted, or created during the
intervention. These resources included general materials for guiding schools
in the implementation of a wellness program, as well as teaching resources
and educational materials for parents. The teaching resources included the
curriculum guides and grade-specific binders with adapted lessons and sup-
plemental materials that all teachers were provided during the intervention.
All of these materials (with the exception of the posters and copyrighted
curricula) were put on a CD and given to each school.
Finally, during the final year of the intervention, the project partners
embarked on a planning process to determine how to best maintain and
extend the critical infrastructure to sustain health-related activities and
gains within the member schools. At the end of the planning period, strate-
gic recommendations were developed to specifically address how to sustain
this wellness initiative and how to effectively and efficiently leverage exist-
ing resources. The resulting plan also identified strategic new directions and
funding needed to comprehensively address health and mental health needs
in the Jewish day school system of Chicago.

Challenges and Lessons Learned

As with any intervention, many obstacles were faced during the develop-
ment, implementation, and expansion of this initiative. Fortunately, many
 Fighting Childhood Obesity in a Jewish Community 217

of the challenges that confronted the project during the initial years were
addressed in later years. Some of the bigger issues are described below,
along with resolutions whenever they existed.

Creating a Positive First Impression

A critical challenge faced by this initiative was building support within
each school as the project got underway. Creating a good first impression
was difficult because of the intervention’s goal of reducing childhood obe-
sity, a notoriously sensitive topic and one many parents found threatening.
To make it even more difficult, the first grant activity visible to parents and
students was the BMI measurements. This led people (primarily female stu-
dents and their parents) to hastily conclude that our goal was to make all
of the children “skinny,” instead of focusing on eating healthy and being
active. This was despite the project’s name being the “Jewish Day School
Wellness Initiative” and no explicit mention of obesity in any project materi-
als or activities. In addition, several schools had bad experiences in the past
with well-intentioned but poorly executed parent groups addressing nutrition
or other health issues. For example, one school’s “nutrition committee” was
poorly received by other parents at that school because of its progressive
ideas and aggressive strategies. These parents did not want anyone, espe-
cially outsiders, coming to be the “food police.” Overcoming these obstacles
was a slow process. Fortunately, positively received events, such as family
activities and the purchase of new gym equipment, increased both parent and
student satisfaction and, thus, receptiveness to subsequent changes. Offering
education for the students, parents, and staff also improved perceptions of
the program.
In addition, the whole concept of school wellness was new to many mem-
bers of the Orthodox school communities. At the beginning of the grant,
almost none of the schools in the school system had a health curriculum,
health-care professionals on staff, food service staff, trained PE teachers,
or sports teams. In other words, they had no health-related resources within
their schools. At the same time, the schools were isolated from existing
external resources because of cultural issues, and they were exempt from
recent federal school wellness mandates because of their lack of a school
lunch program. As a result, many staff and parents lacked general health-
related knowledge and had a limited understanding of the importance of
school wellness programs. Working to first develop motivation and enthusi-
asm to achieve the project goals was necessary prior to providing any educa-
tion or making any school changes. Initially focusing on the importance of
wellness (as opposed to specific strategies) emerged as an important compo-
nent of the project’s success.
218 TRANSLATING DATA INTO COMMUNITY ACTION

Importance of Being Culturally Sensitive

When working with any racial or ethnic minority community, it is obvi-
ously important to respect their rules, values, and customs. Being from out-
side of the community, the project staff was only able to achieve this by
having an “insider” from the schools (and thus, from the community) to
inform them of these important cultural guidelines. Having a liaison was crit-
ical throughout all 4 years of the initiative for familiarizing project staff with
community norms and shaping grant goals and methods to be most benefi-
cial for the community. Having organizational partnerships was also key to
the acceptance of this initiative. Partnering with the local Jewish Federation
brought credibility and greater opportunities for funding. Partnering with the
school system (instead of just individual schools) also increased the project’s
credibility and sustainability.

Logistical Challenges
In addition to the broad challenges discussed above, the project also faced
more specific obstacles related to the administration, implementation, and
evaluation of the grant. For example, the project staff quickly realized that
as the project expanded, they had increasingly little control of the health
education component. It was difficult (and even impossible in some schools)
to meet with all of the staff in charge of teaching health lessons to train
them, answer questions, and get feedback. In addition, the requirement to
teach at least two lessons a month was not always enforced by the admin-
istration, and teaching logs from teachers were completed erratically and
perhaps not accurately. Thus, it was challenging to enforce and evaluate the
health education component once the project expanded beyond in initial two
pilot schools.
Project staff also had a difficult time ensuring that all of the project require-
ments were met by each school. This was important to know to approve
school expenses and to document project activities. To address this after the
first year, the schools were required to turn in a quarterly report that listed
all project activities. This allowed the schools to keep a log of what they had
accomplished and helped the project staff be aware of activities that were
conceived and implemented by the individual schools. Grant funds were tied
to these quarterly reports, so that the schools not only had to complete the
required activities but also document them to receive any money.

School and Community Engagement

Finally, the importance (and difficulty) of engaging members of the com-
munity must be discussed. From the start, this was a community-driven proj-
ect. To begin, the Jewish Community Health Survey was initiated by the
 Fighting Childhood Obesity in a Jewish Community 219

Jewish Federation and supported by local religious and lay community lead-
ers in 2003. Moreover, a group of community leaders and key stakeholders
defined the geographic boundaries of the community to be surveyed, helped
to adapt the survey questionnaire for this community, and wrote introductory
letters to respondents to encourage participation (more details in Chapter 5).
An important indicator of community support was the fact that the survey
cooperation rate was an impressive 75%. Following this, leaders from the
local community were instrumental in interpreting the results of the empiri-
cal findings and determining which health concerns were most urgent. This
communication took place through a series of meetings with over 100 com-
munity agency representatives and religious leaders in 2004 to 2005. Through
these meetings, the project leaders were also able to identify individuals and
groups who were interested in being involved in the intervention phase of
the project. Finally, the day school intervention was initiated because of the
community members’ concern about problems related to childhood obesity.
Within the intervention itself, all project activities were selected by each
school’s wellness council, which generally included school administration,
staff, and parents.
In addition, changes to the intervention model and materials were made
each year of the initiative, based on feedback from the administrators, staff,
students, and parents of participating schools. The feedback, which came
through meetings, surveys, calls, and other means, allowed the project staff
to continually provide new or improved materials and activities. For exam-
ple, one challenge was to engage teachers in the overall school efforts and
help them understand the influence of nutrition and exercise on the students’
classroom behavior and achievement. The principals maintained that staff
meetings were too busy to allow for meaningful education, so a monthly
newsletter for teachers was developed instead. In this way, health education,
ideas, and resources were made available to all teachers at all schools every
month. This process of continually improving the intervention also allowed
the schools to implement changes or activities not originally envisioned. This
served to not only improve the effectiveness of the intervention but also to
increase the schools’ buy-in for the overall project.
A related challenge was reaching parents to provide education to them and
to seek their involvement in various aspects of the initiative. In this commu-
nity in particular, the larger-than-average family sizes result in greater parent
responsibilities for childcare. Financial constraints limited both the parents’
and the school’s ability to provide childcare for such events. To address this,
a concerted effort was made to bring the health education messages to events
that were already taking place (i.e., orientation and parent–teacher confer-
ences). In addition, the monthly wellness updates that were developed for
teachers were adapted to be relevant for parents as well. Many schools also
220 TRANSLATING DATA INTO COMMUNITY ACTION

included their own information, gathered by staff or the school nurse, in

weekly parent newsletters. Furthermore, teachers were encouraged to make
parental participation a requirement of homework assignments for the health
lessons.
Finally, another one of the primary challenges to this initiative was some-
thing that is familiar to everyone who has worked in or with a school.
Namely, the competing interests and limited resources (including staff time)
of schools make any efforts to bring about changes difficult. After the pilot
years (during which the model and materials were developed), the project
staff purposefully adjusted their role to providing resources and advice, rather
than implementing actual projects within any of the schools. This was both
a matter of logistical necessity and an effort to increase the self-sufficiency
of the schools. This was very challenging for the schools that were already
taking steps outside of their comfort zone and now needed to solicit help
from parents or other organizations within their community. This approach
obviously required greater school initiative and independence. Although the
schools professed a desire to address wellness issues, this goal is fairly long-
term in nature and somewhat abstract and, therefore, is often a lower priority
compared to test scores and other immediate demands. Furthermore, like
many changes within schools, movement is often driven by one or two indi-
viduals. Identifying these individuals was a challenge for almost all of the
participating schools.
Proof that the schools and communities were successfully engaged in the
initiative was seen at an event sponsored by the project’s funders and orga-
nized by the project staff at the beginning of year 4. Specifically, all 10
participating schools were invited to take part in a meeting to share success
stories, discuss challenges, and provide an update for the funders, school
system administrators, and other interested individuals. This 3-hour event
included a presentation by the project director regarding the results of the
first 3 years of the initiative, updates on specific components of the inter-
vention, a panel of representatives from each of the schools that had par-
ticipated in past years regarding their “success stories,” and a presentation
from the director of the Chicago public school system’s school health depart-
ment about what their schools were doing. Importantly, ample time was set
aside for questions, comments, and discussion throughout the event. Each
school was asked to send at least one administrator, teacher, and parent, and
approximately 50 individuals attended.
The event was notable in several ways. To begin, all participating schools
were represented, despite the challenges of setting aside that amount of time
during a school day. More importantly, all individuals who attended were
very interested in the issues discussed and motivated to continue making
changes within their respective schools. Individuals took notes, requested
 Fighting Childhood Obesity in a Jewish Community 221

more information, asked insightful questions, and generally demonstrated

their engagement with issues related to children’s wellness. Of particular
interest was the panel of principals sharing their successes. For example, one
principal discussed how Orthodox boys do not typically have the skills to
play sports, so after-school activities run by volunteer parents were designed
to teach them skills such as how to throw a football or catch a baseball.
Another individual discussed how a family running event could be held at
no cost to the school by getting local stores to donate T-shirts, refreshments,
and advertising. As a final example, one principal explained how their school
moved from almost exclusively using candy for rewards and fundraisers
to the selling of vegetable peelers to fund the most recent eighth grade
class trip.
One of the main themes that emerged from these discussions was that
the intervention was helpful in bringing about a cultural shift within this
community. Evidence for this change in community norms and practices
was given through several examples. For example, all principals and teach-
ers strongly agreed that they noticed students bringing in healthier snacks
and lunches. In addition, many parents and teachers described improvements
in the nutritional content of foods offered at both school and non-school
events. As another sign of the spread of this initiative beyond school walls,
one mother noted that the local kosher grocery store had greatly increased
the amount of whole wheat products it offered. Although these changes are
impressive (and not necessarily all a result of the project), many individuals
noted that much work still needed to be done to spread the changes even
further. For example, the possibility of working with local restaurants and
caterers to provide healthier options was raised.
This event was a great opportunity for schools to interact with each other,
for funders to better appreciate the achievements their support enabled, and
for project staff to gather large amounts of feedback. The gathering of all
interested parties for a structured event with built-in time for discussion
could be a useful model for other intervention projects to follow.

Conclusions

This chapter describes how one religious community used data gathered by
a population-based survey to motivate real changes within their community.
The effort expended to make this school-based initiative culturally appropri-
ate and community-driven was rewarded by signs of a cultural shift toward
health seen at the end of the intervention. Although the various short-term
evaluations showed that the intervention was successful in certain areas (such
as lowering the percentage of overweight and obese students in the pilot
222 TRANSLATING DATA INTO COMMUNITY ACTION

schools and improving levels of nutritional knowledge), the overall effec-

tiveness will be determined by how well the schools continue incorporating
the wellness curricula, policy changes, and activities. Broader shifts in cul-
tural norms within this inclusive community will also be critical to support
changes within schools, families, and individuals. However, it is too early to
know if the progress seen at the individual, organizational, and community
levels will be sustained.
The success of this initiative can also be considered on a larger scale.
Specifically, one of the primary goals of the project was to develop a model
and materials that would be appropriate for Jewish day schools across the
country. This represents more than 200,000 students in approximately 750
schools in the United States, and this number continues to rise (Schick,
2005; NCES, 2008). It is hoped that this wellness movement will not only
be sustained within the day school system of Chicago but that the model
created here will continue to be used for other Jewish schools. Based on
responses to presentations made at national conferences and on the requests
for information received by project staff, this is already beginning to hap-
pen. For example, another city with a large Jewish population has asked to
use our survey data, model of day school wellness, school questionnaires,
and other project information to replicate this project within their day school
system. Funding is still being pursued for this new initiative, but it appears
as if many other schools will benefit from the experiences of the current
project. As the national attention to childhood obesity continues to swell,
it is hoped that all day schools are likewise motivated to improve student
health. If the model of school wellness and the culturally appropriate materi-
als made available through this project can in any way assist these schools to
overcome the many barriers to school wellness that exist, this initiative will
be considered a success.
Finally, although the main outcomes of interest within this intervention
were related to nutrition, physical activity, and body image, it is hoped that
the structures left in place within this school system will allow other health-
related issues to be addressed more effectively. Using day schools to educate
children and reach their parents may be a worthwhile strategy for address-
ing other challenging problems identified by the community survey, such as
depression and domestic violence.
This initiative has demonstrated that with adequate guidance and support,
schools are willing to broaden their focus from a child’s intellectual develop-
ment to overall well-being that incorporates emotional, social, and physical
dimensions. In accordance with the Jewish teaching to guard one’s health,
these schools can help students, staff, and families make healthier choices
and, thus, improve their health now and in the future.
 Fighting Childhood Obesity in a Jewish Community 223

Acknowledgments

This ambitious initiative could have only been accomplished with the help of
numerous individuals and organizations. To begin, I would like to acknowl-
edge the funders again because of their consistent and generous support of
the project. In particular, the Michael Reese Health Trust and the Polk Bros.
Foundation have been invaluable for both their financial support as well as
their overall guidance. Elizabeth Lee, Senior Program Officer at the Michael
Reese Health Trust, was especially helpful throughout the four years of the
project. I would also like to acknowledge assistance from colleagues at the
Jewish Federation, Joel Carp, David Rubovits, and Dana Rhodes, as well as
the director of the Sinai Urban Health Institute, Steven Whitman. Their input
as members of the grant’s steering committee helped to ensure that the pro-
ject would be accepted by the community and that it was part of the broader
agenda to improve well-being within the Jewish community of Chicago. I
would also like to acknowledge two project staff members, Ashley Biscoe
and Lindsay Weil, for their hard work and expertise in adapting or creat-
ing the culturally appropriate health education materials for this project and
for their assistance with other logistical needs of the project. Finally, many
thanks are due to the administrators, teachers, parents, and students of the
Associated Talmud Torahs school system. The efforts of the principals and
staff of the two pilot schools are especially appreciated. In addition, Debbie
Cardash, Director of Student Services at Associated Talmud Torahs, can-
not be thanked enough for her support of this project and her work with
the schools and parents to facilitate community acceptance. The efforts and
input of all of these individuals drove this initiative and deserve the credit
for all of the positive changes seen.

References

Benjamins, Maureen R. 2010. The Jewish Community Health Survey of Chicago:

Methodology and key findings. In: Urban health: Combating disparities with local
data, eds. Steven Whitman, Ami M. Shah, and Maureen R. Benjamins. New York,
NY: Oxford University Press.
Benjamins, Maureen R. and Steven Whitman. 2010. A culturally appropriate school
wellness initiative: Results of a two-year pilot intervention in two Jewish schools.
Journal of School Health. 80(8): 378–386.
Centers for Disease Control and Prevention (CDC). 2008. Coordinated School Health
Program. Online. Available: http://www.cdc.gov/HealthyYouth/CSHP/. Accessed
February 2, 2008.
Centers for Disease Control and Prevention (CDC). 2009a. Clinical growth charts.
Online. Available: http://www.cdc.gov/growthcharts/clinical_charts.htm. Accessed
October 7, 2009.
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Centers for Disease Control and Health Promotion (CDC). 2009b. YRBSS: Youth Risk
Behavior Surveillance System. Online. Available: http://www.cdc.gov/HealthyYouth/
yrbs/index.htm. Accessed February 25, 2009.
Centers for Disease Control and Health Promotion (CDC). 2009c. Welcome to the School
Health Index. online. Available: https://apps.nccd.cdc.gov/shi/Default.aspx. Accessed
February 25, 2009.
Jeffery, Alison N., Linda D. Voss, Brad S. Metcalf, Sandra Alba, and Terence J. Wilkin.
2005. Parents’ awareness of overweight in themselves and their children: Cross sec-
tional study within a cohort (EarlyBird 21). British Medical Journal 330:23–24.
Mokdad, Ali H., Earl S. Ford, Barbara. A. Bowman, William H. Dietz, Frank Vinicor,
Virginia S. Bales, and James S. Marks. 2003. Prevalence of obesity, diabetes, and
obesity-related health risk factors, 2001. Journal of the American Medical Association
289(1):76–79.
Must, Aviva, Jennifer Spandano, Eugenie H. Coakley, Alison E. Field, Graham Colditz,
and William H. Dietz. 1999. The disease burden associated with overweight and obe-
sity. Journal of the American Medical Association 282(16):1523–1529.
National Center for Education Statistics (NCES). 2008. Digest of Education Statistics,
2007 (NCES 2008-022), Chapter 1. U.S. Department of Education.
National Heart, Lung, and Blood Institute (NHLBI). 2009. Hearts-N-Parks Y2K train-
ing manual. Online. Available: http://www.nhlbi.nih.gov/health/prof/heart/obesity/
hrt_n_pk/hnp_tm.pdf. Accessed February 2, 2009.
Schick, Marvin. 2005. A Census of Jewish Day Schools in the United States, 2003–2004.
New York, NY: The AVI CHAI Foundation.
U.S. Census Bureau, Housing and Household Economic Statistics Division, Fertility &
Family Statistics Branch. 2008. AVG3. Average number of people per family house-
hold with own children under 18, by race and Hispanic origin, marital status, age, and
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www/socdemo/hh-fam/cps2008.html. Accessed April 14, 2010.
10
DISPROPORTIONATE IMPACT OF
DIABETES IN A PUERTO RICAN
COMMUNITY OF CHICAGO

Steven Whitman, José E. López, Steven K.

Rothschild, and Jaime Delgado

Introduction

The prevalence of diabetes in adults in the United States has been steadily
increasing from 4.9% in 1990 to 6.1% in 2004 (Mokdad et al., 2000;
Behavioral Risk Factor Surveillance System [BRFSS], 2005). Diabetes
prevalence is higher in U.S. non-Hispanic Blacks and Hispanics com-
pared to non-Hispanic Whites (Centers for Disease Control and Prevention
[CDC], 2003a). Puerto Ricans have a particularly high prevalence of diabe-
tes. One report, using a BRFSS methodology, produced a prevalence esti-
mate of 9.6% for Puerto Rico, whereas a 2000 survey implemented with a
similar methodology produced an estimate of 11.3% for Puerto Ricans liv-
ing in New York City (Perez-Cardonna and Perez-Perdomo, 2001; Melnik
et al., 2004).
Mortality from diabetes also exhibits substantial racial/ethnic dis-
parities. In 2002, the age-adjusted mortality rates for diabetes were:
25.4 per 100,000 population for the entire United States, 22.2 for non-
Hispanic Whites, 50.3 for non-Hispanic Blacks, and 35.6 for Hispanics.
Furthermore, the diabetes mortality rate for people living in Puerto Rico
was 69.5 (Kochanek et al., 2004), three times the mortality rate of the
mainland United States.
225
226 TRANSLATING DATA INTO COMMUNITY ACTION

Chicago is home to more Puerto Ricans than any U.S. city other than
New York. Sinai’s Improving Community Health Survey (Sinai Survey)
(Whitman, Williams, and Shah, 2004), from which much of the data in this
chapter are derived, included the largest Puerto Rican community in the city
(Humboldt Park/West Town or HP/WT).
This chapter comprises three parts:

• First, data are presented describing the diabetes epidemic in the HP/WT
area and the prevalence is stratified according to various demographic
and risk factors. To better assess the impact of diabetes on this commu-
nity, diabetes mortality rates are also calculated. In each of these cases,
derived data are compared to local and national rates.
• The second part of this chapter discusses how the community took own-
ership of these data and their implications, disseminated them widely,
and converted the bad news of the data and the energy of the com-
munity into funding for an intervention, which is now in place. This
intervention offers an opportunity to reverse the terrible damage being
wrought by diabetes in the community and also to shift the ideological
manner in which community-based interventions are considered.
• The final part of this chapter offers some observations and
implications.

The Data

Methods

Survey
The survey from which the prevalence data were obtained is described in
detail in Chapter 3 (Shah and Whitman, 2010). As noted, West Town and
Humboldt Park were among the six community areas surveyed in the Sinai
Survey. These two areas are contiguous and are home to about 26,000 Puerto
Ricans (23% of Chicago’s total Puerto Rican population). These residents
view themselves as being part of the same community and are treated as
such (HP/WT) in this report. It is essential to note here that these two offi-
cially designated community areas were included in the survey both because
they are among the most diverse in the city and also because previous work
of the Sinai Urban Health Institute (SUHI) with this community suggested
such placement might result in meaningful collaborations. As just one exam-
ple, when SUHI was planning its survey, a Community Advisory Board was
convened to select the topics and questions that would appear on the survey
(Shah, Benjamins, and Whitman, 2010). One of the co-authors (JD), who has
 Disproportionate Impact of Diabetes 227

worked in HP/WT much of his life, was one of the leaders of the Board. He
is also the director of the project that emerged out of all of this work and that
is described below in some detail.

Data Collection
The race and ethnicity of survey respondents were measured by self-
identification. Diagnosed diabetes was measured, consistent with the BRFSS
survey, as those responding “yes” to the survey question, “Have you ever
been told by a doctor that you have diabetes?” Women who had been told
that they had diabetes only during a pregnancy were not included among
those with diabetes. Body Mass Index (BMI) was calculated by using self-
reported height and weight (BMI = kg/m2). Respondents were categorized
into: not overweight (BMI < 25.0), overweight (25.0–29.9), and obese (≥30)
(NIH, 1998).

Data Analysis
Data for denominators for mortality rates and prevalence proportions were
drawn from the U.S. Census 2000 files. Mortality data were abstracted from
Illinois Vital Records Death Files, which were provided to us by the Chicago
Department of Public Health. Deaths from diabetes consisted of all deaths
with an underlying cause coded as E10 through E14 under the International
Classification of Diseases, 10th Revision (Hoyert and Lima, 2005). All mor-
tality rates were age-adjusted to the U.S. standard 2000 population.
Consistent with other studies in this literature, the prevalence proportions
in this analysis were not age-adjusted. The sampling weights employed in this
analysis account for differential probabilities of selection and we employed
post-stratification of the sample to resemble the 2000 Census distribution of the
population for each of the community areas. Data were analyzed using STATA
v8 to account for the sampling design effects (Stata Corporation, 2003).
The statistical significance between two prevalence proportions or two
mortality rates was examined with a t-test. A 95% level of significance was
employed for all analyses.

Results

Prevalence
Of the 603 people who were interviewed in HP/WT, 595 people had no
missing study data, and 104 identified themselves as Puerto Rican. The
Puerto Rican residents of this community tended to be young and female
(57.3%), have more than an eighth-grade education (82.7%), and be born in
Puerto Rico (58.6%) (Table 10-1).
228 TRANSLATING DATA INTO COMMUNITY ACTION

TABLE 10-1 Non-Gestational Diabetes Prevalence by Risk Factors for Puerto

Ricans in Humboldt Park-West Town (n = 108), 2002–2003

Total (%) Prevalence (%) 95% CI P

Age (in years)

18–44 65.0 13.1 (5.4, 28.4) 0.106
45–64 27.7 34.4 (12.2, 66.4)
65+ 7.3 34.5 (10.5, 70.2)
Gender
Male 42.7 12.5 (4.8, 28.9) 0.158
Female 57.3 27.1 (11.1, 52.5)
Education
≤ 8th Grade 17.3 33.6 (16.6, 56.3) 0.126
≥ 9th Grade 82.7 18.4 (7.7, 37.8)
Nativity
Puerto Rico 58.6 15.7 (9.4, 25.0) 0.383
United States 41.4 25.1 (9.2, 52.3)
Weight Status
Obese 33.2 33.4 (18.2, 54.1) 0.023
Non-Obese 66.8 14.8 (5.5, 34.3)
Family History of
Diabetes
Yes 43.2 32.5 (12.9, 61.0) 0.064
No 56.8 12.3 (5.8, 24.0)
Health Insurance
Uninsured 23.3 10.8 (2.1, 40.3) 0.357
Insured 76.7 23.0 (10.3, 46.0)
Total 20.8 (10.1, 38.0)

Source : Sinai’s Improving Community Health Survey, 2002–2003.

The risk for diabetes was also high in this community, as 33.2% of the
residents were found to be obese and 43.2% had a family history of diabe-
tes. The majority of the residents had health insurance (76.7%). A detailed
summary of additional markers of socio-economic status may be found in
Chapter 3 (Shah and Whitman, 2010).
The prevalence of physician-diagnosed diabetes in Puerto Ricans living
in this community was 20.8%. The prevalence proportions for other people
in these two communities were 3.1% for non-Hispanic White adults, 14.5%
for non-Hispanic Black adults, and 4.1% for Mexican adults (Table 10-2).
The Puerto Rican prevalence was significantly higher than both the Mexican
( p = 0.025) and White proportions ( p = 0.025).
Table 10-3 compares the diabetes prevalence found among Puerto Ricans in
HP/WT to those found for Puerto Ricans living in other areas. Puerto Ricans
in HP/WT (20.8%) report a prevalence about twice as high as Puerto Ricans
 Disproportionate Impact of Diabetes 229

TABLE 10-2 Non-Gestational Diabetes Prevalence in Humboldt Park-West

Town, by Race/Ethnicity, 2002–2003

Group N Prevalence (%) 95% CI

All 595 9.0 (6.4, 12.7)

Puerto Rican 104 20.8 (10.1, 38.0)
Mexicana 97 4.1 (1.4, 11.4)
Non-Hispanic Whitea 154 3.1 (0.7, 13.2)
Non-Hispanic Black 163 14.5 (9.4, 21.8)

Source : Sinai’s Improving Community Health Survey, 2002–2003.

Note : aThe Puerto Rican rate was significantly higher than Mexican ( p = .025) and non-Hispanic
White rates ( p = .025)

TABLE 10-3 Non-Gestational Diabetes Prevalence Among

Puerto Ricans in Recent Years, Various Reports

Humboldt Park-West Town, 2002–2003 20.8%

New York City, 2000 11.3%
Puerto Rico, 1999 9.6%
Puerto Rico, 1998–2002 9.3%

Source : Sinai’s Improving Community Health Survey, 2002–2003.

living in New York City (11.3%) and Puerto Rico (9.6% and 9.3%) (Melnik
et al., 2000; Perez-Cardonna and Perez-Perdomo, 2001; CDC, 2004).
Diabetes prevalence varied by associated risk factors (Table 10-1).
Prevalence was significantly higher among obese people ( p = 0.02) and mar-
ginally significantly higher among those with a family history of diabetes
( p = 0.06). It was also higher (but not significantly) among older people,
females, those with fewer years of education, those born in the United States,
and those with insurance.

Mortality
Table 10-4 presents diabetes mortality rates by geographic area and race/
ethnicity. Note that the diabetes mortality rate for Puerto Ricans (67.6 per
100,000 population) in HP/WT is consistent with the high prevalence. As
can be expected, the Puerto Rican mortality rate caused by diabetes is sig-
nificantly higher than the rate for Mexicans ( p = 0.006) and non-Hispanic
Whites ( p = 0.002) and higher than for non-Hispanic Blacks ( p = 0.11) in the
same community. The rate is also more than twice the rate for all of Chicago
( p = 0.006) and the United States ( p = 0.002). Although the Puerto Rican
rate in HP/WT is similar to that found among Puerto Ricans in the rest of
Chicago and Puerto Rico, it is 50% higher than that found in Puerto Ricans
living in the United States ( p = 0.12).
230 TRANSLATING DATA INTO COMMUNITY ACTION

TABLE 10-4 Age-adjusted Diabetes Mortality Rates by Race/Ethnicity in

Recent Yearsa

Total NHW NHB Mexican Puerto Rican

Humboldt Park-West 36.1 22.0† 42.2 23.0† 67.6

Town, 1999–2001
Chicago 1999–2001 31.2b 23.8 37.9 41.7 70.9
United Statesc 2000 25.2b 22.0 53.4 39.0 45.4
Puerto Rico 2000 — — — — 69.5

Source : Sinai’s Improving Community Health Survey, 2002–2003.

Notes: aRates are per 100,000 population
b
Significantly different (p < 0.05) when compared to the Humboldt Park-West Town Puerto
Rican mortality rate
c
Excludes Puerto Rico
NHW = Non-Hispanic White; NHB = Non-Hispanic Black

TABLE 10-5 Age-adjusted Mortality Rates (per 100,000 Population) from

Diabetes for Consecutive 3-Year Intervals for Humboldt Park-West Town Puerto
Ricans, Chicago, and the United States

1998–2000 2001–2003 Change

HP-WT Puerto Ricans 66.0 76.1 15.3%

Chicago 30.6 31.1 1.6%
United States 24.4 25.3 3.7%

Source : Sinai’s Improving Community Health Survey, 2002–2003.

Note : HP-WT = Humboldt Park-West Town.

Table 10-5 presents the mortality rates from diabetes for consecutive
3-year intervals (slightly different from the interval employed in Table 10–4)
surrounding the 2000 census for HP/WT, Chicago, and the United States.
Note that although the rates for Chicago and the United States increased by
small but notable amounts, the rates among Puerto Ricans in the community
increased by 15.3% during this interval.

Discussion
Although the prevalence of diabetes is consistently found to be much higher
for Hispanics than for non-Hispanic Whites, the prevalence observed in this
community of Puerto Ricans in Chicago (20.8%) is the highest reported dia-
betes prevalence we have been able to locate for Puerto Ricans. This preva-
lence is twice as high as findings for Puerto Ricans living on the island or in
New York City (Table 10-3).
It is relevant to note that the relationship to virtually every risk factor exam-
ined in this report (Table 10-1) is consistent with findings from other studies
 Disproportionate Impact of Diabetes 231

showing increased prevalence among older people, females, those with fewer
years of education, those born in the United States, obese people, those with a
family history of diabetes, and those with health insurance (Lethbridge-Cejku,
Schiller, and Bernadel, 2004; BRFSS, 2005). The direction of the relation-
ships of these risk factors to diabetes prevalence is also identical to other stud-
ies of diabetes among Puerto Ricans (Perez-Cardonna and Perez-Perdomo,
2001; Melnik et al., 2004). Of particular note is the high prevalence of obesity
(33.2%) and family history of diabetes (43.2%), both important risk factors for
diabetes, found in this community. The prevalence of obesity among Puerto
Ricans in this study is higher than that of the United States (25%) and may
thus be contributing to the increased diabetes prevalence rate (CDC, 2003b).
It is compelling that this elevated prevalence corresponds to a greatly ele-
vated diabetes mortality rate of 67.6 (per 100,000 population). This is more
than twice as high as the rate for Chicago (31.2) and almost three times as
high as the rate for Illinois (25.4) and the United States (25.2). It is also
noteworthy that this Puerto Rican mortality rate is virtually identical to that
found in Puerto Rico, but studies there have found the prevalence to be only
about half what has been found in this community (Perez-Cardonna and
Perez-Perdomo, 2001; BRFSS, 2004; Kochanek et al., 2004). One plausible
hypothesis for the lower prevalence on the island, despite the elevated mor-
tality rate, is disproportionate underdiagnosis. However, we are not aware of
evidence to support or contradict this.
This elevated diabetes mortality carries with it an alarming observa-
tion. For example, if this mortality rate of 67.6 prevailed for the United
States as a whole, then diabetes would be the second-leading cause of
death in the country, trailing only heart disease but well ahead of all
separate types of cancers (e.g., lung, breast, colorectal) and cerebrovascu-
lar diseases (Kochanek et al., 2004). Given the already extraordinary—
and growing—burden of diabetes in this country, it is a sobering thought
that in this Puerto Rican community, the impact may already be three
times greater than it is for the country as a whole (Saydah et al., 2002;
Black, 2002).

Methodological Issues
There are important methodological issues to consider when examining
the results from this study. First, consistent with virtually all the other liter-
ature in this field, we did not age-adjust our prevalence estimates. Our own
data, along with that from the CDC, suggest that such adjustments generally
increase prevalence by about 10%, although this estimate is quite variable
(CDC, 2003b). For example, if we had age-adjusted our estimates (to the
2000 standard U.S. population), the prevalence for Puerto Ricans would have
risen from 20.8% to 22.6%, an increase of 8.7%.
232 TRANSLATING DATA INTO COMMUNITY ACTION

Second, our sample did not include residents over the age of 75. Because
diabetes generally increases with age, this may bias the prevalence estimates.
However national data show that the prevalence is similar for those ages 65
through 74 and those ages 75 and older (CDC, 1999). Therefore, the bias
may be minimal.
Third, it is well-established that self-reporting of physician diagnosis
underestimates the true prevalence of diabetes by 33% to 40% (Harris et al.,
1998; CDC, 2003a; CDC. 2003b). Using the 33% adjustment, an estimate of
the actual prevalence of diabetes among Puerto Ricans in this Chicago com-
munity could be as high as 31% for adults between the ages of 18 and 75.
Fourth, because one must see a physician to obtain a physician diagnosis
of diabetes, lack of insurance would tend to minimize the prevalence esti-
mates derived in this study. Indeed, 24% of the Puerto Ricans in the survey
were without insurance, and these uninsured individuals had a reported dia-
betes prevalence that was less than one-third of those with insurance. This
dynamic would serve to even further elevate the estimate of the actual prev-
alence of diabetes among Puerto Ricans in this community.
Finally, because of the small sample size (n = 104), the confidence limits
around our estimates were wide. However, to determine statistical signifi-
cance, we did not employ overlapping confidence intervals because this tech-
nique is more conservative (i.e., rejects the null hypothesis less often). Rather,
we used the z-test in testing all the comparisons in this analysis (Schenker
and Gentleman, 2001). Despite this effort, because of a small sample size,
we failed to see some statistically significant differences that we otherwise
may have obtained.

Implications
The continuing disparities in diabetes prevalence and mortality demon-
strated here are inconsistent with the (at least) 25-year-old national initia-
tives to reduce disparities in general and for diabetes in particular (U.S.
Department of Health and Human Services, 1991; U.S. Department of Health
and Human Services, 2000). These disparities exist despite continued calls
for improvement in screening and treatment for diabetes (Diabetes Control
and Complications Research Group, 1993; Nathan and Herman, 2004). As
the prevalence increases and more people become obese and acquire the
disease earlier in life, diabetes-related complications and mortality will only
increase. Of paramount concern would be the upstream issue of prevention.
As McGinnis has aptly noted in his foreword to a supplementary issue of the
American Journal of Preventive Medicine devoted to diabetes control: “… as
perhaps with no other disease is the importance of the link between clini-
cal and community interventions so clear. The potential for gain against the
 Disproportionate Impact of Diabetes 233

toll of diabetes is great, but only if we pair aggressive clinical interventions

with equally aggressive community action fundamental to broad lifestyle
changes” (McGinnis, 2002).
The elevated prevalence and mortality from diabetes in Puerto Ricans
have largely gone unnoticed in the literature. Understanding why the dia-
betes prevalence and mortality rates for Puerto Ricans in HP/WT are twice
as high as those of other communities is imperative. Almost certainly, the
answer to this question will include reducing the prevalence of obesity,
increasing diabetes education and early screening and diagnosis, and provid-
ing access to effective treatment.
This study revealed local level disparities in diabetes prevalence and mortal-
ity and thus offers an opportunity to improve the situation. Established guide-
lines and resources already exist that can improve the quality of diabetes care
(Hu et al., 2001; Task Force on Community Preventive Services, 2002; Coffey,
Matthews, and McDermott, 2004). One of our goals in conducting the six-com-
munity survey was to provide robust data that would empower researchers, ser-
vice providers, and community members to work collectively to address health
problems in Chicago’s neighborhoods. In the HP/WT neighborhood, the find-
ings of this study had exactly that impact, as described in the next section.

The Community Response

First Steps

As described in Chapter 3 (Shah and Whitman, 2010), the data from the sur-
vey were collected in 2002 and 2003. When the preliminary findings were
developed, they were discussed with several community-based organizations
that had helped implement the survey and with whom the researchers had
working relationships. The response was most energetic. For example, the
Puerto Rican Cultural Center (PRCC), which had been calling for the mean-
ingful use of research data and community control of health interventions,
started to informally disseminate and talk about the findings the same day the
data became available. (The Executive Director of the PRCC (JEL) is one of
the authors of this chapter.) Consistent with this effort was the establishment
of the coalition called the Greater Humboldt Park Community of Wellness
(COW), which contained several organizations (including the PRCC) work-
ing on health issues in the HP/WT community and which was dedicated to
addressing both the medical as well as the social determinants of health.
Soon the results from the survey became a guide for health improvement in
the area, and several hundred copies of the report describing these results
(Whitman, Williams, and Shah, 2004) were widely distributed.
234 TRANSLATING DATA INTO COMMUNITY ACTION

Two community forums were held the by the COW in March and November
of 2004 (one of which was sponsored by the City Council of Chicago) to
discuss these reports. Over 200 community residents attended each event.
There was wide community support and heated debate about which topics
on the survey were most important and which were most amenable to effec-
tive action. Topics that were discussed included pediatric asthma, obesity,
depression, and diabetes, among others (Figs. 10-1 and 10-2).
At the beginning of 2006, researchers from the Sinai Urban Health
Institute learned that a paper submitted to a peer-reviewed journal about
diabetes in HP/WT had been accepted for publication and would appear in
the December 2006 issue. This is the paper that forms the basis for the first
part of this chapter (Whitman, Silva, and Shah, 2006). Upon learning of the
publication date, the study investigators realized that they did not want the
paper to appear and bring only more bad news to the community. It was thus
decided, with the leading participation of several other members of the com-
munity, to convene the “Humboldt Park Diabetes Task Force.” Twenty-one
people representing community-based organizations, medical institutions,
and advocacy groups (e.g., the American Diabetes Association, the Illinois
Kidney Foundation, the PRCC, the COW, Mount Sinai Hospital) served on
the Task Force. One of the authors (SKR) chaired the Task Force. Data from
the study were shared with faculty at a nearby academic health center with
no prior significant engagement with the HP/WT community, and this cata-
lyzed the participation of experts in endocrinology and preventive medicine
in the Task Force work.
The Task Force met twice a month in a restaurant in the community. In
the end, the group produced the report entitled Diabetes in Humboldt Park:
A Call to Action (The Humboldt Park Diabetes Task Force, 2006). The report
was prepared in time to coincide with the date of publication of the journal
article. Thus, instead of the news being limited to the devastating impact of
diabetes in Humboldt Park, equal attention was given to the community’s
demand for action. Action steps called for in the Task Force report included:

1. Increasing awareness of diabetes and making diabetes a community-

wide priority, through: recruitment of an oversight board; engagement
of community groups in the design and implementation of efforts to
increase awareness of diabetes in the community; conducting a social
marketing campaign; and the hiring of outreach workers.
2. Defining the scope of the problem by implementing a community-wide
screening campaign for case-finding of persons with diabetes and also
for those at risk of developing diabetes, and sharing these findings with
the community on a regular basis.
 Disproportionate Impact of Diabetes 235

Figure 10-1 Agenda for the Chicago City Council Hearings, March 9, 2004, to pres-
ent data about health inequities in Chicago’s communities

3. Implementing a program of primary prevention to reduce the number

of people who develop diabetes. This program would include the crea-
tion of a community diabetes education center, an intervention program
for children identified as “at risk,” and the development of multifaceted
interventions aimed at diet, physical activity, and behavior change based
in worksites and other settings in the community.
236 TRANSLATING DATA INTO COMMUNITY ACTION

Figure 10-2 Invitation letter to the Humboldt Park Health Summit, November 9,
2004, to introduce and discuss the establishment of a “Community of Wellness.”

4. Improving medical care for people with diabetes by engaging health-

care providers in a collaborative network to improve diabetes care, with
continuing medical education and quality improvement projects.
5. Helping people with diabetes take better care of their health through
resources such as a “diabetes information clearing house,” free diabetes
 Disproportionate Impact of Diabetes 237

self-management education programs, and community-based resources

to support healthful decision-making regarding nutrition and physical
activity for persons with diabetes and their families.

The Press Conference and Summit

On December 6, 2006, both the journal article and the report were released
at a press conference held at Association House, a social service agency in
the HP/WT community. The press conference was attended by over 300 peo-
ple, including every elected official from the community—at the city, county,
state, and federal level (Figs. 10-3 and 10-4). There was an overwhelming
response that ranged from anger about the disparity to urgency about the
need to take action. The energy of the attendees drove the next step, a plan to
further increase community awareness of diabetes and to get input into how
to respond to the findings. At this event it was announced that a Diabetes
Summit would be held in the community in March (2007), and volunteers
were solicited to join the Task Force and help plan the Summit. The purpose
of the Summit would be to exchange ideas and information with the com-
munity and to make plans for mitigating the damage being done by diabetes
in the community.
In response to this request, many individuals stepped forward and vol-
unteered. These people met twice a month for the next 4 months, this time
early on Friday mornings at a different community restaurant over break-
fast. The Diabetes Summit was held on March 16, 2007, in a community
church (see Fig. 10-5 for the brochure publicizing the event). In advance of
the event, Univision, the television station with the largest news audience in
Illinois (in any language), asked to meet with Task Force members. Upon
understanding the situation, they agreed to run a news segment describing
the upcoming Summit for all 4 nights of the week leading up to the Friday
of the event. Over 600 people attended the day-long Summit and learned
about the dimensions of the problem, as described by the epidemiology, how
to attempt to manage the disease, and where and when to receive screening
and other health information. In one sense the Summit became a rally of the
many people in Humboldt Park living with or directly impacted by diabe-
tes. The Summit also provided a structure for broader community reaction
and input (interpretation) to the findings and the proposed solutions (Figs.
10-6–10-8).
The reach of the Summit was far greater than even the 600 people who
attended. One indication of the diffusion into the community came a few
days later when a teacher at a public school in the community found the
phone number of one of us (SW) on the Web and called to ask if someone
238 TRANSLATING DATA INTO COMMUNITY ACTION

Figure 10-3 Flyer for a meeting at Association House, December 6, 2006, to address
the high prevalence of diabetes among Puerto Ricans living in the Humboldt Park and
West Town Community Areas of Chicago.

would come to talk to her seventh-grade class because her students were ask-
ing about the commotion generated by the interest in diabetes. In response,
a presentation was made in front of an assembly of all three seventh-grade
classes in the school. Exactly what was accomplished that day is unclear,
but two observations stood out. First, it appeared that almost everyone in
the community was talking about the problem of diabetes. Second, seventh
graders are very funny and very energetic. Many other presentations and
discussions also took place in the community and the city as a whole in the
months that followed.
 Disproportionate Impact of Diabetes 239

Figure 10-4 Article in “Extra,” a Chicago Hispanic newspaper, about the December 6,
2006 meeting at Association House to discuss the high prevalence of diabetes among
Puerto Ricans living in Chicago.
Source: Extra, December 7, 2006, p. 8

Making Something Happen

The increased community interest and momentum generated by the Summit

made it clear to the Task Force that an intervention was needed—sooner rather
than later. The ideal intervention was described in the Task Force report. It
consisted of selecting a 72-block area of HP/WT and making the reduction of
diabetes and its complications the highest possible health priority by imple-
menting measures of primary, secondary, and tertiary prevention. Most impor-
tantly, the Task Force included key community leaders and organizations
committed to impacting the ideology and culture of the community to help
make diabetes a primary concern, thus facilitating “ownership” of the commu-
nity’s health (Ansell, 2010). This is envisioned as an example consistent with
Freire’s conscientization (Freire, 1972; Elias, 1976). Intervening in the entire
HP/WT area was not feasible because it was too large (consisting of 108,000
people). The selected 72-block area contains 37,000 people, 27% Mexican,
33% Puerto Rican, 13% Black, 16% White, and 11% Hispanic people of other
origins. The project quickly acquired the community name of the “Block-by-
Block Project,” and people would routinely ask Task Force members about it
as they walked down the street. And they are still talking about it.
Figure 10-5 Front cover of the Program for the Summit on Diabetes, March 16, 2007,
held in response to the “Call to Action” of public health workers, community activ-
ists, local politicians and health researchers concerning high diabetes prevalence among
Puerto Ricans living in Chicago.

240
 Disproportionate Impact of Diabetes 241

Figure 10-6 Poster Advertising “Entre Nosotros,” the Summit held on March 16,
2007, in Humboldt Park, to address the problem of alarming rates of diabetes.

Initially one of the district’s state legislators and a supporter of these

efforts placed funding in the state budget, which was approved. However,
the Illinois state budget started running out of money, and thus, although
approved, the project was not funded. Toward the end of 2008 the Polk Bros.
Foundation of Chicago (http://www.polkbrosfdn.org/) invited members of
the Task Force to make a presentation to its Board. This resulted in a 1-year
planning grant for the “Block-by-Block Project.”
While all of this was going on, the authors, in collaboration with the
Humboldt Park COW and the PRCC, submitted a substantial proposal to
the U.S. National Institutes of Health for a community-based participatory
research project to implement the “Block-by-Block Project.” This project was
funded for $2,000,000 for 4 years starting in mid-2009. It is worth noting
Figure 10-7 Photograph of the speakers at the “Entre Nosotros” event on March 16,
2007, which appeared in La Raza, a local Hispanic newspaper.
Source: La Raza, April 7, 2007, p. 34.

Figure 10-8 Article and photographs from the “Entre Nosotros” event, March 16,
2007, appearing in La Voz del Paseo Boricua, a local newspaper dedicated to “Informing
and Advocating for the Preservation of a Little Bit of Our Homeland.”
Source: La Voz Del Paseo Boricua, April 2007, p. 1.

242
 Disproportionate Impact of Diabetes 243

that the submitted proposal received very good scores. However, there was
one substantial concern: that the community support for this project was so
strong and well-organized that this project may not be replicable. We will
deal with this “dilemma” when we come to it. Meanwhile, we enjoy its suc-
cess and potential.

Observations and Implications

In a book like this that is so concerned with praxis, it makes sense to reflect
on the events described above. The introduction to this book presented what
we call the Sinai Model for trying to bring about health equity. Many of the
aspects of the work described in this chapter conform to this model:

• Data that turned out to be provocative were gathered at the local

level;
• the community (in this case HP/WT) was involved in the mission of the
survey and the creation of the questions contained in the survey;
• data and findings were made available to the community as quickly as
possible. A common complaint communities have of research studies is
the huge time gap between when the data are gathered and when they
are put into action. We refused to repeat such an error;
• because the community was so engaged in these efforts (and indeed
was leading them), huge community forums were held. These, in turn,
brought out all the politicians and the Spanish language media;
• the attention to the problem of diabetes was elevated by a very public
dialogue extending even to middle school students. A concept put for-
ward by the community and associated researchers was that an effort
was being made to shift the ideology surrounding diabetes. All indica-
tions are that this effort is beginning to be successful;
• funders took note at the state level, among foundations and at the NIH;
and
• substantial funding was acquired and the intervention has begun.

In all of this work, the power of the people in the community and the com-
munity-based organizations cannot be overestimated. In fact, these early
successes can also be described by what did not happen rather than by what
did. For example, in the 5 years or so described above, never once were there
any “turf battles” or any competition among community organizations, poli-
ticians, or medical institutions. And, although everyone was disappointed
about how slowly this process moved, no one criticized anyone for this.
Much of this resulted from the fact that throughout the process the people of
244 TRANSLATING DATA INTO COMMUNITY ACTION

the community remained in charge. It was not that researchers, physicians,

and medical centers were nice, well-intentioned people (they were) but that
the choice was not theirs to make. They could join the community efforts or
they could go home. Fortunately, they have chosen to join.

Acknowledgments

This project could not have been done without the support, time, and dedica-
tion of the HP/WT community, the community-based organizations that were
the engine of the work (and who are named above), members of the Task
Force, and researchers at the Sinai Urban Health Institute. Generous funding
for this project was provided by the Robert Wood Johnson Foundation (Grant
# 043026) and the Chicago Community Trust (Grant # C2003-00844), in
addition to the grants from the Polk Bros. Foundation and NIH described
in the text.

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11
PEDIATRIC ASTHMA IN BLACK AND
LATINO CHICAGO COMMUNITIES:
LOCAL LEVEL DATA DRIVES RESPONSE

Helen Margellos-Anast and

Melissa A. Gutierrez

Background

Asthma is a chronic respiratory disease characterized by swelling and nar-

rowing of the lung airways. The airways of people with asthma are sensitive
and react to different stimuli called triggers. Some examples of triggers for
asthma include cigarette smoke, allergens (e.g., pollen, pet hair, etc.), mold,
cockroaches, and rodents. Although asthma can be a detrimental disease
if not managed properly, it can be controlled via the proper use of medica-
tions, trigger avoidance, early recognition of symptoms, and appropriate and
timely response to symptoms. When asthma is well-controlled, people with
asthma and their families can live healthy and productive lives. This chap-
ter discusses how local-level data pertaining to the prevalence and effects of
pediatric asthma in six diverse Chicago communities led to culturally appro-
priate action to improve asthma outcomes among children living in some of
the city’s most affected communities.

Epidemiology of Asthma
Asthma is the most common chronic disease of childhood, affecting 14% of
U.S. children under age 18 years (10 million) and resulting in more school days
247
248 TRANSLATING DATA INTO COMMUNITY ACTION

missed than any other disease (Centers for Disease Control and Prevention
[CDC], 2009a; Akinbami, 2007). In 2003, children missed 12.8 million days
of school because of asthma (Akinbami, 2007). Poorly controlled asthma can
result in increased utilization of urgent health care and therefore substantial
health-care costs. In 2004, children younger than 18 years had 754,000 emer-
gency department (ED) visits (103 per 10,000) and 198,000 hospitalizations
(27 per 10,000) for asthma (Moorman et al., 2007). Asthma medical expendi-
tures (hospitalizations, ED visits, physician services, and medications) in the
United States were estimated at $14.7 billion in 2007 (National Institutes of
Health, National Blood, Lung and Heart Institute, 2007).
Asthma prevalence rates nationally are known to be highest among Puerto
Rican children (31%), followed by non-Hispanic Black children (17%); they
are lowest among Mexican children (10%) (CDC, 2009a; Lara et al., 2006;
Akinbami, 2007). Notably, between 1980 and 2001, the mortality rate result-
ing from asthma increased among Black children despite significant improve-
ments in medications and knowledge of how to control the disease over the
same interval. By 2001, Black children were 5.6 times more likely to die
from asthma than non-Hispanic White children (Gupta, Carrión-Carire, and
Weiss, 2006). Black children are also over 3.5 times more likely to visit
the ED for asthma-related problems than are non-Hispanic White children
(263.6 per 10,000 vs. 73.0 per 10,000) (Akinbami, 2007).

Motivation for the Survey

In the time leading up to Sinai’s Improving Community Health Survey

(Sinai Survey), which took place between September 2002 and April 2003
(see Chapter 3) (Shah and Whitman, 2010), data had begun to emerge sug-
gesting that Chicago might be among the cities hardest hit by asthma, with
higher than national asthma-related mortality and morbidity rates (Weiss
and Wagener, 1990; Marder et al., 1992; Targonski et al., 1994; Thomas
and Whitman, 1999; Mannino et al., 2002). In 1996, the asthma hospital-
ization rate for Chicago was 42.8 per 10,000, more than twice the U.S. rates
(Thomas and Whitman, 1999). In addition, the 1996 age-adjusted asthma
mortality rate in Chicago was 4.7 times higher in non-Hispanic Blacks
than in non-Hispanic Whites (Thomas and Whitman, 1999). A study in the
nation’s largest city, New York City, had demonstrated that hospitalization
and mortality rates varied by neighborhood (Carr, Zeiel, and Weiss, 1992).
Chicago, the nation’s third largest city, has 77 officially designated commu-
nity areas (Chicago Fact Book Consortium, 1995), many of which are quite
segregated. Therefore, one might ask if asthma prevalence and severity rates
vary by community area in Chicago.
Sources such as the National Health Interview Survey (NHIS), the
Behavioral Risk Factor Surveillance System (BRFSS) Survey, the National
 Pediatric Asthma in Black and Latino Chicago Communities 249

Hospital Ambulatory Medical Care Survey (NHAMCS), and the Illinois

Health Care Cost Containment Council (IHCCCC) provide a great deal of
information about the prevalence, morbidity, and costs associated with pedi-
atric asthma on the national and state level. Vital statistics data allows for
the analysis and display of asthma mortality data by smaller geographical
areas such as city, community, and neighborhood, whereas hospitalization
rates can be broken down to the zip code level. However, at the time when
the Sinai Survey was being conceived, there was little other information
available regarding asthma prevalence or severity at the city or community
level. It was therefore not known, for example, whether reports of higher
asthma morbidity and mortality in certain inner city populations compared
with others could be attributed to differences in asthma prevalence or, rather,
to differences in the severity and control of the disease. The lack of commu-
nity-level information pertaining to asthma prevalence, severity, and control
was a substantial deficit, and one that needed to be addressed if interventions
aimed at preventing the development and exacerbation of the disease were to
be appropriately targeted to those most at risk.
Therefore, obtaining data on pediatric asthma that could inform local-
level interventions and policy to quell the epidemic was a priority of the
Sinai Survey.
This chapter pursues three main purposes:

1. First, local-level data pertaining to the prevalence, morbidity, severity,

and control of asthma in children age 12 years and younger living in
the six surveyed communities in Chicago are presented. Data are com-
pared with existing city and national estimates whenever possible.
2. Second, the findings of the survey are discussed in the context of the
action that resulted from them. Specifically, the survey findings led
directly to the development of interventions to address the dispropor-
tionate burden of asthma suffered by certain communities and groups
of people and offered insight on how to combat the epidemic on the
local, city, and state level.
3. Third, the lessons learned along the way and their implications are
presented.

The Data

Methods
The survey from which the data were obtained is described in detail in
Chapter 3 and the demographics of each surveyed community are presented
250 TRANSLATING DATA INTO COMMUNITY ACTION

in Table 3-2 (Shah and Whitman, 2010). In households where a child (12
years and under) resided, the interview included a pediatric component
addressed to the primary caregiver of one randomly selected child. The
child module of the survey contained 22 questions specific to pediatric
asthma. The question of asthma prevalence (i.e., how many children have
asthma) was pursued in three ways. First, the lifetime prevalence of asthma
was assessed by asking whether the child had ever received a diagnosis of
asthma. The question used was: “Have you ever been told by a doctor,
nurse, or other health professional that your child had asthma?” and is a
slight modification of the question used by the National Health Interview
Survey (NHIS). Next, the prevalence of asthma episodes and attacks was
assessed by asking the question: “During the last 12 months, has your
child had an episode of asthma or an asthma attack?” This question also
comes from NHIS and is worded exactly the same. Finally, to approxi-
mate the prevalence of undiagnosed pediatric asthma in these communi-
ties, questions from the validated Brief Pediatric Asthma Screen (BPAS)
were included (Wolf et al., 1999). The BPAS consists of four questions
that, when answered in a certain combination, reveal that the child likely
has asthma.
A number of questions were intended to determine the burden that pediat-
ric asthma exerts on certain communities. For example, there was a series of
questions intended to assess whether children with asthma had their asthma
under proper control. The National Heart, Lung, and Blood Institute’s
(NHLBI) standards for properly controlled asthma were used as the crite-
ria (NHLBI, 1997; 2002). A child was determined to have poorly controlled
asthma if any of the following criteria applied:

1. Four or more asthma attacks in the past 12 months;

2. Four or more wheezing episodes in the past 12 months;
3. Five or more nights of disturbed sleep in the past 30 days;
4. Four or more incidents of urgent health resource utilization in the past
12 months (e.g., sum of emergency department/urgent care center visits,
hospitalizations, and urgent clinic visits);
5. Having had asthma symptoms severe enough to limit speech to only one
or two words at a time between breaths within the past 12 months.

Finally, the data were analyzed considering data from the adult survey
about cigarette smoking in the household to determine the proportion of
children with asthma who were consistently exposed to the universal trigger
of secondhand cigarette smoke (see Chapter 7 for more information) (West
and Gamboa, 2010).
 Pediatric Asthma in Black and Latino Chicago Communities 251

Data Analysis
All observations were weighted to account for the probability of selection (at
the block, household, and respondent levels) and to ensure that the sample accu-
rately reflected the socio-demographic characteristics of the base populations
per the 2000 Census. Data were analyzed using SAS version 9 (SAS Institute
Inc., 2002–2003), which allows for sampling design effects to be considered.

Results

Prevalence
The prevalence of physician-diagnosed asthma in the six communities
ranged from 6% in South Lawndale to 20% in West Town, with four of
the six communities exceeding the national rate of 12% during the same
time-interval (Centers CDC, 2009b). Caregivers who did not report that their
child had ever been diagnosed with asthma were screened via the BPAS
(Wolf et al., 1999). Those who screened positive for asthma via the BPAS
likely had asthma. Figure 11-1 presents the proportion of children with diag-
nosed asthma, screened asthma, and the combined total in each commu-
nity. The prevalence of diagnosed asthma could be seen as the low end of a
range, whereas the total of those with a diagnosis and those with screened
asthma could be seen as the high end of the range. The combined total will
be referred to as potential asthma from this point forward. The prevalence
of potential asthma exceeded 20% in four of the six communities: Humboldt
Park (28%), West Town (28%), North Lawndale (23%), and Roseland (23%).

35 Physician Diagnosed Screeneda USb 12%

30
25 8
11
Percent

20 7 8
15
6
10 20 6
17 16 15
5 9
6
0
Humboldt West South North Roseland Norwood
Park Town Lawndale Lawndale Park

Figure 11-1 Proportion of Children with Physician-Diagnosed and Screened Asthma

by Community Area
Source: Sinai’s Improving Community Health Survey, 2002–2003.
Notes: aScreened positive for asthma via Brief Pediatric Asthma Screen.
b
Comparison data is the prevalence of physician diagnosed asthma, National Health
Interview Survey, 2003.
252 TRANSLATING DATA INTO COMMUNITY ACTION

40
Physician Diagnosed Screeneda USb by Race/ Ethnicity
35
30
13
25
Percent

20 9
15 21 8
10 5
16
5 9 12
0
Mexican Puerto Non-Hispanic Non-Hispanic
Rican Black White

Figure 11-2 Percent of Children with Physician-Diagnosed and Screened Asthma by

Race/ Ethnicity
Source: Sinai’s Improving Community Health Survey, 2002–2003.
Notes: aScreened positive for asthma via Brief Pediatric Asthma Screen.
b
Comparison data is the prevalence of physician diagnosed asthma, National Health
Interview Survey, 2003.

In other words, in four of the six surveyed communities, the prevalence of

pediatric asthma might be twice as high as it is for the United States as a
whole (12%) (CDC, 2009b).
When the data are presented by race and ethnicity (Fig. 11-2), the highest
rates of potential asthma are among Puerto Rican (34%) and non-Hispanic
Black (25%) children. These trends resemble what is found nationally, with
Puerto Rican and non-Hispanic Black children having the highest rates. But,
although the trend is similar, the rates are higher among surveyed Chicago
children than they are nationally, where 27% of Puerto Rican and 17% of
non-Hispanic Black children have physician-diagnosed asthma (Akinbami,
2006; Lara et al., 2006, Akinbami, 2007).
These survey findings were the first to officially document the prevalence
of asthma in certain Chicago communities that had long been suspected of
suffering an immense asthma burden. Around the same time that the find-
ings of the Sinai Survey were being analyzed and prepared for dissemina-
tion, preliminary findings from the Harlem Children’s Zone asthma study
were highlighted on the front page of The New York Times (April 19, 2003).
The article reported that “One of every four children in central Harlem has
asthma, which is double the rate researchers expect to find and, researchers
say, is one of the highest rates ever documented for an American neighbor-
hood.” However, the prevalence of asthma was equally high for several of the
Chicago neighborhoods surveyed, especially for Black and Puerto Rican chil-
dren. Thus, what made front-page news in The New York Times is an every
day reality for children living in certain Chicago communities. Later findings
 Pediatric Asthma in Black and Latino Chicago Communities 253

from the Harlem Children’s Zone revealed that 30% of screened children had
potential asthma (Nicholas et al., 2005). Several other studies that have since
been conducted in Chicago (Quinn et al, 2006; Shalowitz et al., 2007; Gupta
et al., 2008) and other big cities (Simon et al., 2003; Nicholas et al., 2005)
have corroborated that the prevalence of asthma in inner-city, minority, dis-
advantaged communities approaches, and even exceeds, 25%.

Asthma Burden and Control

In addition to having a higher prevalence of asthma, it has been docu-
mented that minority children living in inner-city communities also suffer
disproportionately from it, as shown by their morbidity and mortality rates
(Weiss and Wagener, 1990; Halfon and Newacheck, 1993; Finkelstein et al.,
1995; Lara et al., 2006;). Findings from the Sinai Survey lend further evi-
dence to this assertion. For example, between 26% and 54% of children with
diagnosed asthma in five of the communities had asthma that could be con-
sidered poorly controlled per the NHLBI’s standards, as shown in Table 11-1
(NHLBI, 1997; NHLBI, 2002). This finding is not surprising given that in
most surveyed communities, more than 50% of children with an asthma diag-
nosis were not currently using a controller medication1 (Table 11-1). In fact, in
four of the communities, more than 40% of children with diagnosed asthma
did not have access to any medication (Table 11-1). It is extremely dangerous

TABLE 11-1 Asthma Burden and Control for Children with an Asthma
Diagnosis by Community Area

Outcome Humboldt West Town South North Roseland

Park Lawndale Lawndale
(%) (%) (%) (%) (%)
Poorly Controlled 54 26 44 33 39
Asthmaa
No Controller 52 76 54 80 78
Medication
No Controller 16 50 48 38 73
or Rescue
Medication
Children with 48 20 12 48 61
potential
asthmab who
live with a
smoker

Source : Sinai’s Improving Community Health Survey, 2002–2003 (Norwood Park was omitted
because only five children had an asthma diagnosis).
Notes: aAs defined by the National Heart Lung and Blood Institute.
b
Potential Asthma is defined as physician diagnosed plus screened positive per the Brief Pediatric
Asthma Screen.
254 TRANSLATING DATA INTO COMMUNITY ACTION

70 Potential Asthma No Asthma Symptoms

60
50
Percent

40 65
62 55
30
45 40 60
20
31 31 27
10 22 25
16
0
Humboldt West South North Roseland Norwood
Park Town Lawndale Lawndale Park

Figure 11-3 Percent of Children with at Least One Emergency Department Visit in
the Last 12 Months by Asthma Status
Source: Sinai’s Improving Community Health Survey, 2002–2003.

for a child with asthma to not have access to a quick-relief medication,1 which
could save his/her life in case of an attack. In Roseland, a shocking 73% of
children with diagnosed asthma did not have access to a single medication.
The Sinai survey data supports findings by other researchers suggesting that
children from poor, inner-city, and minority communities with asthma exert
a great toll on the emergency health-care system (Halfon and Newacheck,
1993; Singh et al., 1993; Finkelstein et al., 1995; Woodruff et al., 1999; Rand
et al., 2000). Figure 11-3 shows the proportion of children who went to the ED
at least once in the past year, dividing the children into those with potential
asthma and those without any symptoms of asthma. Note that in four of the
six surveyed communities, more than 50% of children with potential asthma
indicated having used the ED in the past year. In all cases, ED use by children
with potential asthma exceeded ED use among children with no asthma symp-
toms, and in many instances children with potential asthma were two to three
times more likely to use the ED than children with no symptoms (Fig. 11-3).
The detrimental effects of tobacco smoke on children who have asthma have
been well-established (Chiomonczyk et al., 1993). In fact, exposure to cigarette
smoke, whether primary or secondary, is recognized as the one universal trig-
ger of asthma. Nonetheless, the survey revealed that in three of the surveyed
communities, the proportion of children with potential asthma living with a
smoker approached or exceeded 50% (Table 11-1). Given the high smoking
rates in several of these communities (see Chapter 7) (West and Gamboa,
2010), children with asthma are likely to be frequently exposed to secondhand
smoke, further exacerbating the burden asthma exerts on their lives.

Implications
It has been well-established that Chicago is one of the cities hardest hit by
the surging asthma epidemic (Weiss and Wagener, 1990; Marder et al., 1992;
 Pediatric Asthma in Black and Latino Chicago Communities 255

Targonski et al., 1994; Thomas and Whitman, 1999; Naureckas and Thomas,
2007). However, prior to the Sinai Survey, there was no hard evidence to
back up the prevalent suspicion that children living in Chicago’s most dis-
advantaged, minority communities might bear the greatest burden. The
Sinai Survey provided that evidence when it revealed that one of every four
children in four of the surveyed Chicago communities likely had asthma.
Furthermore, children in poorer and minority communities surveyed tended
to have asthma that was poorly controlled, meaning they often suffered
needlessly as a result of the disease.
Although asthma is a chronic disease and cannot be cured, it can be con-
trolled with proper medications, symptom monitoring, and trigger avoidance.
When asthma is well-controlled, children can live normal and productive
lives, reaching their full potential. However, when it is not, the effects stem far
beyond the immediate to potentially compromise a child’s long-term health
and quality of life. For example, some of the potential short-term effects of
poorly controlled asthma might be that the child does not sleep well at night
and therefore is not fully alert when at school, he/she may miss school fre-
quently (which often results in the parent missing work), and he/she may not
be able to play fully nor participate in structured activities or sports. The
short-term consequences have potential long-term effects, including remodel-
ing of the lungs, resulting in a greater risk for future lung disease; compromis-
ing the quality of education that the child receives, thereby affecting his/her
future career prospects; and impairing social skills and self-confidence.
Although no one familiar with asthma in Chicago was surprised by the
immense burden revealed by the Sinai Survey, those outside the asthma com-
munity were now mobilized to provide the resources necessary to address
the situation. Several additional studies followed that substantiated the survey
data discussed herein and definitively proved that children in poor, minority,
urban communities are at an increased risk of having asthma and of suffer-
ing needlessly from poorly controlled asthma (Nicholas et al., 2005; Quinn
et al., 2006; Shalowitz et al, 2007; Gupta et al., 2008).
Local-level data reveal disparities in asthma prevalence, severity, and man-
agement, which are likely attributable to a combination of personal, social,
and environmental factors. Furthermore, national and city-wide data may
seriously underestimate the prevalence of pediatric asthma in urban com-
munities. Poorly controlled asthma in childhood has grave economic and
social ramifications, not only for the individual child but also for their fam-
ilies and the community. Interventions and policies are most effective when
they target communities most in need and when they consider the social and
environmental context of the problem. Armed with local-level data, commu-
nity leaders and policymakers may foster effective health planning and bring
greater resources to these marginalized communities.
256 TRANSLATING DATA INTO COMMUNITY ACTION

The Response: Data Drives Change

The Sinai Survey took place in 2002 to 2003, with the first report document-
ing key findings from the survey published in 2004 (Whitman, Williams,
and Shah, 2004). The report was quickly disseminated to those with a vested
interest in the findings, particularly to community partners, researchers,
funders, and policymakers. The months immediately following the survey
were devoted to making numerous presentations on the key findings of the
survey and discussing those findings with stakeholders. Chapter 3 presents
more details on these activities. Briefly, the pediatric asthma findings gen-
erated substantial buzz among all audiences to which they were presented,
both community and professional. The perceived importance of the findings
to the local, asthma professional community is evident in the fact that the
data were presented at the unveiling of the Chicago Asthma Action Plan on
World Asthma Day (May 1, 2004). Significant media attention followed the
release of the data (Fig. 11-4) and the Chicago Asthma Action Plan. Some
of the specific headlines included: “City ‘sick with asthma,’ but experts have

Figure 11-4 Article in the Chicago Sun-Times highlighting the pediatric asthma find-
ings of Sinai’s Improving Community Health Survey
Source: Jim Ritter, “Puerto Rican, black child asthma soaring: Racial, economic chasm in
Chicago’s health seen in study,” Chicago Sun-Times, January 8th, 2004, Metro Section.
 Pediatric Asthma in Black and Latino Chicago Communities 257

plan to get well” (Chicago Sun Times, May 4, 2004) and “Chicago told it has
an asthma epidemic” (Chicago Tribune, May 5, 2004). The survey findings,
their implications, the work of other Chicago-area researchers, and efforts
to reduce asthma disparities were also highlighted in a special feature enti-
tled “Waiting to Inhale,” published by Chicago Reporter in September 2004
(vol. 33, no. 7). The survey findings also generated an interest in conducting
future research to substantiate its findings. Finally, the survey findings mobi-
lized researchers and communities toward action to address the problem.
A multitude of interventions followed. Those instigated by the Sinai Urban
Health Institute (SUHI) and Sinai Children’s Hospital (SCH) are discussed
in greater detail below.

Sinai Urban Health Institute Pediatric Asthma Interventions

SUHI and SCH have been working together since July 2000 to address
the unacceptable burden poorly controlled asthma has on the communities
served by the Sinai Health System. The Sinai Health System is located in
the poor, predominately Black community of North Lawndale, where the
survey revealed that nearly one of every four children likely has asthma. Not
only are children in North Lawndale more likely to have asthma than many
of their counterparts in other Chicago communities, but the survey also
revealed that only 15% of children in North Lawndale with diagnosed symp-
tomatic asthma are on proper medications and that nearly half are exposed
to tobacco smoke on a daily basis.
Although the survey data would not become available until 2004, the
high volume of children coming through Sinai’s Emergency Department for
asthma, combined with the experiences of area physicians with many poorly
controlled asthma patients, led to the establishment of the first Pediatric
Asthma Initiative (PAI-1) in 2000. A series of four comprehensive asthma
interventions, each building on the successes and shortcomings of its prede-
cessors, have followed and have resulted in substantial knowledge about how
best to address the suffering resulting from asthma in poor, minority, urban
communities. A description of each of these efforts and their outcomes fol-
lows, highlighting the improvement that these programs have made in the
lives of several hundred children, their families, and the community.
The Community Health Worker (CHW) Model is an integral part of each
of the interventions. CHWs are laypeople who live in the community that the
project serves. They share a cultural and communal connection with those
targeted by the intervention. As a result, they are often better able to establish
the relationship of trust needed to successfully identify and address barriers
to proper disease management. CHWs do not need to have any prior expe-
rience in the field, as they are trained by the program to teach children and
258 TRANSLATING DATA INTO COMMUNITY ACTION

their families how to more effectively manage asthma. Other synonymous

terms include community health educator, peer educator, lay health educa-
tor, promotora de salud, and outreach educator, among others. Several pub-
lished literature reviews have summarized the findings from studies assessing
the effectiveness of CHWs in preventing (primary prevention), identifying
(secondary prevention), and managing (tertiary prevention) various chronic
diseases (Swider, 2002; Nemcek and Sabatier, 2003; Persily, 2003; Andrews
et al., 2004; Brownstein et al., 2005; Lewin et al., 2005; Norris et al., 2006).
Each of the interventions described on the following pages has included a
sound evaluation component, with findings documenting significant improve-
ments in asthma control as indicated by decreased asthma morbidity (e.g.,
urgent health resource utilization, ED visits, and symptoms). Subsequently,
several of the interventions also were associated with increases in quality of
life, self-efficacy, and asthma knowledge. In short, the lives of the families
served by the projects have dramatically improved. A brief synopsis of each
project follows in chronological order, ending with the most comprehensive
intervention to date, Healthy Home, Healthy Child: The Westside Children’s
Asthma Partnership. Table 11-2 provides demographic and baseline charac-
teristics of the participants of each of these programs.

Pediatric Asthma Intervention-1 (PAI-1)

SUHI and SCH first responded to the pediatric asthma problem plagu-
ing the Westside of Chicago in July 2000 with the launch of the original
Sinai PAI-1 (Karnick et al., 2005). The central hypothesis of this sequential
randomized clinical trial was that the most economic and effective path to
maximizing the health status of inner-city children with asthma is through
a process of case-specific, one-on-one reinforced health education combined
with case management services. Study participants included children (1–16
years) with asthma who were randomized into three groups: Group One
(G1) received a single, one-on-one asthma education session with a trained
CHW; Group Two (G2) received the same initial asthma education session,
but that education was reinforced on a monthly basis via phone calls; and
Group Three (G3) received reinforced asthma education with the addition
of case management. All participants in each group received an evaluation
by a pediatric pulmonologist at their initial visit to ensure proper medical
management. The initial education session occurred during this visit and,
therefore, in a clinic setting.
Two hundred twelve children were enrolled in the project, of which 165
(78%) completed the 9 months of follow-up. Table 11-2 summarizes partici-
pant characteristics and demographics. Participants were generally high uti-
lizers of urgent health-care services, with the average child having two ED
visits and one hospitalization for asthma in the year prior to enrollment.
TABLE 11-2 Sinai Urban Health Institute Pediatric Asthma Intervention Characteristics, Participant Demographics, and Baseline Data

PAI-1a PAI-2b CPATCEc (Chicago Sample)

Funding Period 7/01/2000–5/31/2002 11/01/2004–8/31/2006 4/01/2006–12/31/2008
Funder Michael Reese Health Trust Illinois Department of Public Illinois Department of Public
and Crown Foundation Health Health
Participant Recruitment Sinai Patients African American Children living Children living on the Westside
on the Westside of Chicago and Southside of Chicago
Location of Visits Clinic Participant’s Home Participant’s Home
Race/Ethnicity 66% Non-Hispanic Black 100% Non-Hispanic Black 61% Non-Hispanic Black
34% Hispanic 30% Hispanic
7% Hispanic Black
2% Mixed
Age (mean) 6 years 7 years 7 years
Gender (% male) 59.9% 57.1% 55.1%
% Medicaid/All Kidsd Insured 89.0% 95.7% 74.8%
Total Enrolled in Study 212 70 334
Number Completing Follow-up period 165 50 234

Nighttime Symptoms in the past — 4.0 3.5

2-weeks at baseline (mean)
Emergency Department Visits in the year 1.9 3.1 2.4
prior to baseline (mean)
Sum Urgent Health Resource Utilizatione 5.7 6.5 5.3
in the year prior to baseline (mean)

Notes: aPediatric Asthma Intervention-1.

b
Pediatric Asthma Intervention-2.
c
Controlling Pediatric Asthma Through Collaboration and Education.
d
All Kids is a state run health insurance program available to all children in the state of Illinois.
e
Sum of urgent health resource utilization variables (hospitalizations, ED visits, and urgent clinic visits).
260 TRANSLATING DATA INTO COMMUNITY ACTION

TABLE 11-3 Outcome Data for Sinai Urban Health Institute Pediatric Asthma
Interventions - PAI-1, PAI-2, and CPATCE

Outcome PAI-1(n = 165)a PAI-2 (n = 50)b CPATCE—Chicago

Sample (n = 234)c
Asthma EDd Visits 64.0% decline* 73.5% decline* 49.5% decline*
Asthma 81.0% decline* 71.4% decline* 60.6% decline*
Hospitalizations
Urgent Health 67.6% decline* 69.3% decline* 53.9% decline*
Resource Utilization
Nighttime Asthma — 51.6% decline* 57.7% decline*
Symptoms
Quality of Lifee — Increased by Increased by 0.54*e
0.8*e

*Statistically significant p < 0.05 per Wilcoxon signed rank sum test for non-parametric data
Notes: aPediatric Asthma Intervention-1 (PAI-1). Percentages are based on the difference between
means at baseline and data collected through nine months of follow-up and extrapolated out
to represent one year post-baseline.
b
Pediatric Asthma Intervention-2 (PAI-2). Percentages are based on the difference between means
at baseline and data collected through one year post baseline.
c
Controlling Pediatric Asthma Through Collaboration and Education (CPATCE). Percentages are
based on the difference between means at baseline and data collected through 6 months of
follow-up and extrapolated out to represent one year post-baseline.
d
ED = Emergency Department.
e
An increase of 0.5 is clinically significant.

Participants in all three groups utilized significantly fewer urgent health-

care services in the follow-up year. Averaged across all three groups, the
magnitude of the decline in utilization was substantial: about 81% for hos-
pitalizations, 69% for hospital days, 64% for ED visits, and 58% for urgent
clinic visits (Table 11-3). Although there were no statistically significant dif-
ferences between study groups for four of the five main outcome measures,
G3 participants consistently improved to a greater degree than G1 or G2.
Furthermore, the PAI-1 project also proved to be cost-effective. In fact, the
G3 intervention resulted in an estimated $4,778 saved per patient/year over
costs incurred during the baseline year. This translates to $13.29 saved per
dollar spent on the intervention. The findings of PAI-1 were published in the
Journal of Asthma (Karnick et al., 2005).
The findings of PAI-1 clearly support the utility and cost–benefit asso-
ciated with the combined provision of health education utilizing a CHW
and case management services for pediatric patients who are high utilizers
of urgent health-care services. Other studies have also supported the util-
ity of individualized, case-specific asthma education and case management
provided by health professionals (e.g., nurses, social workers, CHWs, and
others in improving asthma outcomes) (Butz et al., 1994; Evans et al., 1999;
 Pediatric Asthma in Black and Latino Chicago Communities 261

Greineder, Loane, and Parks, 1995; Greineder, Loane, and Parks, 1999;
Hughes et al., 1991; Kelly et al., 2002; Stout, White, and Rogers, 1998).
Lessons Learned and Challenges Several important lessons learned via
PAI-1 have proved instrumental in the development of subsequent Sinai
interventions. First, because PAI-1 preceded the Sinai Survey, the baseline
data provided a first glimpse into how asthma impacted the lives of children
living in the communities served by the Sinai Health System. PAI-1’s eligi-
bility criteria did not require that a child have poorly controlled asthma, yet
the average participant had been to the ED nearly twice in the year prior to
enrolling and had utilized urgent health-care services of some sort (e.g., ED,
hospitalizations, and urgent clinic visit) nearly six times. This information
strengthened the desire for asthma-specific data from these communities that
could be used as a benchmark for the evaluation of future interventions.
Second, PAI-1 suggested that even a one-time, individualized asthma edu-
cation session with a CHW could result in improved asthma control. Whereas
G3 participants consistently improved to the greatest degree, the basic inter-
vention provided to G1 participants was also associated with improved out-
comes. Therefore, it is important to target the approach to the needs of the
person being served, but some intervention is better than nothing at all. It
should be noted, however, that the interpretation of the results is compli-
cated by the fact that all study participants saw a pulmonologist upon enroll-
ment, making it difficult to separate out how much of the noted improvement
among participants resulted from health education/case management and
how much resulted from changes in medical management. However, evi-
dence has consistently pointed to the need for education in addition to the
proper prescribing of medications in properly managing asthma. Both the
NHLBI guidelines (NHLBI, 1997; 2002) and an expert panel report of pol-
icy recommendations (Lara et al., 2002) have emphasized the importance of
health education/case management in addition to better prescribing in max-
imizing asthma control. Therefore, it is unlikely that the dramatic improve-
ments noted would have been observed with medication changes alone.
Third, primary care providers face many obstacles to applying the NHLBI
asthma treatment guidelines to patient care, particularly in the inner city,
where reimbursement for services often is at or below the cost of deliver-
ing quality care. Realistic mechanisms and incentives are needed to ensure
that patients receive care consistent with the NHLBI standards. Medicaid
funding support for health education, with or without case management, is a
realistic program for improving quality of life and asthma care in the inner
city while reducing public expenditures.
There were certain methodological challenges associated with PAI-1 that
should be mentioned. For one, funding constraints limited the follow-up
period to 9 months. As such, 9 months of follow-up data was extrapolated
262 TRANSLATING DATA INTO COMMUNITY ACTION

to 12 months to make comparisons with the baseline year. Although sea-

sonal trends in asthma symptoms, severity, and health resource utiliza-
tion have been documented in the literature (Thomas and Whitman, 1999;
Weiss, 1990) an analysis of PAI-1 data by season showed no trend, making
it unlikely this limitation affected the results. Second, the study is limited by
the fact that the baseline data was collected retrospectively and that all data
was collected via participant recall. Therefore, the ability of the caregivers
to accurately remember information may have affected findings (i.e., recall
bias). Social desirability bias may also have been a factor given that the
CHW was responsible for some of the data collection and respondents may
have wanted to answer favorably to please the CHW. However, given the
main outcomes assessed (e.g., ED visits, hospitalizations, etc.) are generally
memorable, and given the extent of improvement between the baseline and
follow-up year, it is unlikely that the overall conclusion of the evaluation was
impeded upon by these limitations.
A final notable challenge involves the fact that the intervention occurred
in the clinic and over the phone. Given asthma is a condition that can be
affected immensely by the home environment, it was difficult to fully and
completely educate the family on environmental triggers that might be
aggravating the child’s asthma without going into the home. Also, it was
possible that by conducting the intervention in a clinic setting, some of the
most vulnerable children were being missed because of the fact that they
were unlikely to be seen in the clinic and might be relying predominantly on
the ED for asthma care.

Pediatric Asthma Intervention-2 (PAI-2)

In 2004, with pilot funding from the Illinois Department of Public Health
(IDPH)2, SUHI and SCH were able to implement a project to assess the
feasibility and effectiveness of an approach utilizing CHWs making home
visits in improving asthma management among Black children with severe
asthma living in inner-city neighborhoods. This pilot funding was stimulated
directly by the pediatric asthma findings of the Sinai Survey (Figs. 11-1,
11-2, 11-3; Table 11-1). The developed approach built on the successes and
limitations of PAI-1, while also considering the existing literature pertain-
ing to effective asthma interventions with inner-city children (Butz et al.,
1994; Garret et al., 1994; Stout, White, and Rogers, 1998; Kelly et al., 2002;
Kinney et al., 2002; Morgan et al., 2004). It was also felt to be imperative
that this next intervention should occur primarily in the family’s home.
The pilot project, PAI-2, utilized CHWs recruited from the same inner-
city, predominantly Black communities served by the project and trained to
serve as asthma educators. The CHWs sought to teach and empower chil-
dren and their families to more effectively manage asthma. The education
 Pediatric Asthma in Black and Latino Chicago Communities 263

provided to the family was individualized and was provided in the family’s
home whenever possible. The CHW also aimed to facilitate the establish-
ment of a relationship with a primary care provider. The CHWs did not
need to have any prior experience with asthma. Rather, the intent was to
locate individuals with a cultural connection to the target communities and
a passion for positively impacting the lives of the people living within those
communities. Once the CHWs were identified, they participated in a 5-day
intensive asthma training class conducted by a certified asthma educator who
specializes in training asthma CHWs. In addition to the formal training ses-
sions, the selected CHWs received further training by working closely with
their supervisor, who was also the Pediatric Asthma Educator for SCH.
Methods Participants were recruited primarily from the ED and inpatient
units of SCH and also via referrals from community physicians. Eligible
children had severe, poorly controlled asthma, were between the ages of 2
and 16 years, and were Black (because of funding requirements). The CHWs
conducted three to four home visits over a 6-month period with each partic-
ipating family. The CHW also served as a liaison between the family and
the medical system, helping to bridge the gap between parents and medical
providers—particularly primary care providers. When necessary, the CHW,
in consultation with her supervisor and appropriate Sinai staff, also provided
basic case management services.
The success of PAI-2 in meeting its goals was evaluated using a pre–post
test methodology with each child serving as his/her own historical control.
Participants were followed for 1 year post-baseline for evaluation purposes.
The main outcomes assessed included asthma symptom severity (in the past
2 weeks), frequency of asthma-related emergency health resource utilization,
caregiver quality of life (Juniper et al., 1996), asthma-related knowledge of
the caregiver, and the belief (self-efficacy) of the caregiver that he/she is able
to manage the child’s asthma (Telleen, 2000). Other outcomes of interest
included whether the intervention was effective in decreasing the number of
triggers to which the child is exposed and whether medications were being
used correctly. Another project goal involved ensuring that each participat-
ing child had an Asthma Action Plan (AAP) signed by his/her physician.
An AAP is a set of individualized instructions that detail how a person with
asthma should manage the condition at various stages. The CHW would not
only ensure that the family had an AAP but that the caregiver and child
(given that the child exhibits a certain level of comprehension) understood
how to implement the AAP.
Results Between November 15, 2004 and July 15, 2005, 70 children were
enrolled into PAI-2. Table 11-2 displays the baseline characteristics and
demographics of enrolled participants. Participants were often high utilizers
264 TRANSLATING DATA INTO COMMUNITY ACTION

of emergency health services, as evidenced by the fact that the average par-
ticipant had visited an ED, been hospitalized, or visited a physician for wors-
ening asthma 6.5 times in the year prior to participation. Fifty-four percent
of enrolled children lived with a smoker. Fifty-eight (83%) completed the
6-month intervention phase. The outcome analysis was limited to the 50
(71%) children who completed the entire 12-month evaluation phase.
The findings strongly suggest that the primary goal of improving asthma
control and thus decreasing asthma-related morbidity and improving quality
of life was met. With regard to asthma-related morbidity, the specific out-
comes examined included four symptom-related variables, asthma exacerba-
tions, wheezing episodes, and urgent health resource utilization. Statistically
significant improvements were noted for the majority of examined outcomes.
For example, the frequency of nighttime asthma symptoms decreased from
3.1 nights of disturbed sleep in the 2 weeks preceding the baseline visit to an
average of 1.5 nights of disturbed sleep per 2-week interval over the course
of the 12-month follow-up. This is a 52% decrease in nighttime symptom
frequency (Table 11-3). Daytime symptom frequency decreased by a simi-
lar magnitude. Urgent health resource utilization also decreased significantly
over the follow-up period. For example, ED visits decreased from 3.4 times
in the year prior to the study to 0.9 in the year following, a 74% decrease
( p < 0.05; Table 11-3).
The study’s second primary goal was to improve the family’s quality
of life. A validated tool, the Pediatric Asthma Caregiver’s Quality of Life
Questionnaire was used to assess progress toward this goal (Juniper et al.,
1996). The caregiver’s quality of life is an indicator of the impact of improved
asthma control on the family’s overall well-being. Caregiver Quality of Life
scores increased significantly from 5.2 (out of a maximum of 7) at the time
of enrollment in the intervention to 6.0 ( p < 0.05) by month 12. Other studies
have suggested that changes of this magnitude are associated with clinically
significant improvements in asthma outcomes (Juniper et al., 1994).
The project also had four secondary goals (variables on the pathway to
successfully meeting the primary goals). Over the follow-up period, improve-
ments were noted for the majority of outcomes utilized in measuring the
intervention’s progress in meeting these secondary goals. Specifically, asth-
ma-related knowledge improved significantly, exposure to asthma triggers in
the home decreased (most notably, exposure to secondhand cigarette smoke),
medication use improved, and there was a notable increase in the obtainment
of AAPs.
The PAI-2 project was also associated with substantial cost savings. In
fact, the intervention was associated with an estimated $2,561.60 saved per
participant per year. This translates to $5.58 saved per dollar spent on the
intervention.
 Pediatric Asthma in Black and Latino Chicago Communities 265

Lessons Learned and Challenges Several important lessons were learned

through the process of this pilot intervention. First, having a CHW from the
target community who shares a cultural connection with participants is vital
in establishing the relationship of trust needed to ensure the acceptability of
the intervention and its success. Second, when hiring a CHW, one should
look for an individual who possesses a true passion for giving back to the
community, is willing to take initiative and go the extra mile in ensuring that
families have the information and resources they need, and is able to think
critically and problem-solve. It is important to devote time upfront in prop-
erly training CHWs and to also make a commitment to ongoing continuing
education. Third, home visits help ensure that the most vulnerable of fam-
ilies, and therefore those most in need of intervention, are reached. Fourth,
many children have multiple caregivers, and the intervention will be most
effective when as many of the people as possible who are involved in the
child’s daily care are educated.
The project experienced certain challenges worth mentioning. One sub-
stantial challenge involved the transient nature of the target population and
the instability of their lives. Many of the caregivers who participated lived
with another family member or friend and, therefore, did not have total con-
trol over the environment in which they lived. Many families were seeing
multiple physicians (i.e., seeing whichever physician was convenient at the
time), and as a result most children did not have an established relation-
ship with one doctor who was managing their asthma. Finally, the level of
cigarette smoke exposure to which participating children were subjected
on a daily basis was extraordinarily high, with 31% of caregivers reporting
their child was exposed to cigarette smoke at least once a day and 54% of
children living with a smoker. Evaluation findings suggested that cigarette
smoke exposure significantly decreased between baseline and the 12-month
follow-up, with 17% of caregivers reporting their child was exposed to ciga-
rette smoke at least once daily ( p < 0.0001) and 46% of children living with
a smoker ( p = 0.0215). It is difficult to conclude whether these were true
changes or were the results of social desirability bias.

Conclusion The findings suggest that individualized, one-on-one asthma

education provided by a trained, culturally competent CHW in the home
environment is an effective means of improving asthma management among
inner-city Black children with poorly controlled asthma. The pilot study
provided evidence of improved asthma outcomes, quality of life and asth-
ma-related knowledge, and decreased exposure to triggers among families
participating in the intervention. Given the degree of improvement in urgent
health resource utilization combined with the relative low cost of the inter-
vention, the PAI-2 model is also cost-effective. Nonetheless, further studies
266 TRANSLATING DATA INTO COMMUNITY ACTION

are needed to affirm the results and assess whether the model can be trans-
lated to other high-risk populations.

Controlling Pediatric Asthma Through Collaboration and

Education (CPATCE): a Statewide Initiative
Introduction The promising results of PAI-2 led the IDPH2 to incorporate
the PAI-2 Community Health Educator model as a key component of a larger
state-wide initiative, Controlling Pediatric Asthma through Collaboration
and Education (CPATCE). CPATCE sought to improve asthma manage-
ment among high-risk children in Illinois, thereby reducing asthma-related
health-care expenditure and asthma-related morbidity and mortality. The
CPATCE initiative was launched in the spring of 2006. SUHI and SCH
were funded to serve as the coordinating, training, and evaluation entity for
the initiative.
CPATCE expanded the PAI-2 CHW model to six additional areas tar-
geted by IDPH because of disproportionately high asthma hospitalization
rates (above the State average). Each target area also had an established
asthma consortium within it that was funded to implement the Sinai
CHW model in that area. The six areas selected to participate are diverse
in terms of urbanicity, race/ethnicity, and socio-economic status. Table
11-4 shows the program delivery areas and their corresponding asthma
consortia.
Methods SUHI and SCH undertook three specific activities as part of this
expansion. First, the PAI-2 CHW model was expanded locally to continue
addressing the unique needs of disadvantaged, minority children with asthma

TABLE 11-4 Controlling Pediatric Asthma through Collaboration and

Education Site Areas and Asthma Consortia

Site Name City/County Area Type

Sinai Urban Health Institute Chicago, Cook Co., IL Metropolitan
& Sinai Children’s Hospital
Chicago Asthma Chicago, Cook Co., IL Metropolitan
Consortium/Respiratory
Health Association
Decatur Area Asthma Decatur, Macon Co., IL Small Metropolitan
Collation
Bureau/Putnam Asthma Bureau Co., Putnam Rural
Team Co., IL
Rockford Asthma Coalition Rockford, Winnebago Small Metropolitan
Co., IL
Northwestern Asthma Knox Co., Henry Co., Rural
Consortium Stark Co., IL
Washington County Washington Co., IL Rural
 Pediatric Asthma in Black and Latino Chicago Communities 267

living in Chicago. The expansion resulted in the program being offered to

all children with poorly controlled asthma living in targeted neighborhoods
as opposed to only Black children (as in PAI-2). More CHWs were hired,
including a CHW fluent in Spanish. Also, SUHI/SCH worked closely with
another CPATCE-funded Chicago site, the Chicago Asthma Consortium/
Respiratory Health Association of Metropolitan Chicago (CAC), to more
completely cover the “hotspots” of asthma in Chicago. Second, SUHI/SCH
established the Sinai Asthma Education Training Institute (SAETI) to coor-
dinate the training of CHWs at the six new sites, and the implementation of
the Sinai CHW model on a wider scale. An asthma training curriculum was
developed and adapted to meet the needs of the different sites. The interven-
tion process was standardized, and a formal education guide was assembled.
This education guide was to be used by CHWs in conducting their home
visits. Third, SUHI served as the primary evaluator of the initiative’s suc-
cess for each participating site. Results were carefully monitored at all sites
to ensure that the program met its goals, efforts were effective, and findings
would guide future work.
CPATCE utilized CHWs from the communities targeted by the inter-
vention to deliver case-specific asthma education in the home environment.
Once identified, the CHWs participated in an 18-hour train-the-trainer
asthma workshop hosted by SAETI. Each site then began recruiting for their
respective program. Recruitment sources utilized by different sites included
EDs, inpatient units, physician referrals, Women Infant and Children (WIC)
programs, daycares, pharmacies, and schools, among others. Eligible chil-
dren were between the ages of 2 and 16 years, had a prior diagnosis of
asthma, and had severe, uncontrolled asthma as defined by NHLBI guide-
lines (NHLBI, 2002).
The CHWs met with families three times over a 6-month period. The
education was tailored to the family’s unique needs and was provided in
the family’s home whenever possible. Each session lasted between 60 and
90 minutes. Although the primary caregiver was the main focus of the edu-
cation, the asthmatic child was also included in an age-appropriate manner
whenever possible. Other caregivers of the child were also frequently present
and included in the educational session. The CHW also served as a liaison
between the family and the medical system, encouraging caregivers to see
their child’s primary care physician (PCP) regularly, providing referrals to
those without a PCP, and working with PCPs in the development and teach-
ing of an AAP.
The project’s goals were evaluated using a pre–post test methodology with
each child serving as his/her own historical control. Data collection time-
points and methodology differ slightly between SUHI/SCH and the other
sites. At SUHI/SCH, data was collected at baseline, every month following,
268 TRANSLATING DATA INTO COMMUNITY ACTION

and at the two subsequent home visits. At each of the other sites, data was
collected at baseline, the 2-month home visit, via phone at 4 months post-
enrollment, and at the 6-month home visit. SUHI/SCH also collected data
for 1 year following the baseline visit; however, for the sake of clarity, this
chapter presents data through 6 months of follow-up for all sites.
Because CPATCE’s goals were similar to its predecessor, PAI-2, the out-
comes assessed were the same, including asthma symptom severity, asth-
ma-related emergency health resource utilization, caregiver quality of life,
asthma-related knowledge of the caregiver, and the belief (self-efficacy) of
the caregiver that he/she is able to manage the child’s asthma. Because of
advances in scale development, a new self-efficacy tool was used in the
CPATCE study (Bursch et al., 1999).
Results Five of the six new sites implemented the intervention to some
degree. One of the asthma coalition was unable to successfully implement
the CHW model in their small rural community. Washington County is a
rural county and had the smallest population of all selected target areas
(15,124 per 2005 Census estimates), with are only about 3,800 children in
the entire county. The local health department is small and was already
overcommitted. It also proved difficult to establish buy-in for the program
from both local professionals and community members. In fact, all of the
rural counties struggled to implement the intervention to the full degree.
This is discussed further in the “Lessons Learned and Challenges” Section
below.
Four hundred fifty-five children were enrolled into CPATCE statewide
between October 2006 and June 2008, of which 326 (72%) completed the
entire 6-month intervention and data collection follow-up. Two hundred thir-
ty-six of the enrolled children were from Sinai, whereas 98 were from CAC.
These two sites combined created a larger Chicago sample (n = 334). Table
11-5 presents the demographic characteristics of study participants from the
three sites with large enough sample sizes to protect personal information
and annonymity. Table 11-2 provides the demographic characteristics of the
combined Chicago sample. Two hundred and thirty-four (70%) of Chicago
participants completed the entire 6-month intervention phase.
The findings described herein are for the pooled Chicago sample of Sinai
and CAC participants, a sample representing many of the asthma “hotspots”
in the city. The Decatur Area Asthma Coalition had similar findings to
those of the Chicago sites, but these are not presented in this chapter. The
remaining three sites did not have a large enough enrollment to analyze data
through 6 months.
Findings indicate that Chicago-area CPATCE participants improved sig-
nificantly with regard to urgent health resource utilization between the year
 Pediatric Asthma in Black and Latino Chicago Communities 269

TABLE 11-5 CPATCE Participant Demographics and Baseline Characteristics

by Site

CACa Decatur Sinai

(n = 98) (n = 84) (n = 236)
Race/Ethnicity
non-Hispanic Black 90% 65% 49%
Hispanic Black 4% 0% 8%
Hispanic 3% 0% 41%
non-Hispanic White 0% 20% 0%
Mixed race/ethnicity 3% 15% 2%
Age (mean) 8 years 7 years 7 years
Gender—% male 44% 55% 59%
Insurance
Medicaid/All Kidsb 64% 97% 79%
Education of Caregiver
High School Grad. or less 39% 67% 60%
Nighttime Symptoms in the 3.4 3.7 3.6
past 2-weeks at baseline
(mean)
Emergency Department Visits 2.2 2.1 2.5
in the year prior to baseline
(mean)
Sum Urgent Health Resource 4.4 5.7 5.7
Utilizationc in the year prior
to baseline (mean)

Notes: aChicago Asthma Consortium.

b
All Kids is a state run health insurance program available to all children in the state of Illinois.
c
Sum of urgent health resource utilization variables (hospitalizations, ED visits, and urgent clinic
visits).

prior to and the year following the intervention (Table 11-3). For example,
Chicago participants experienced a 50% decrease in ED visits and a 61%
decrease in hospitalizations. On average, participants also experienced sta-
tistically and clinically significant increases in quality of life and asthma
knowledge and significant reductions in the presence of asthma triggers. One
key component of the model is to improve the relationship between the client
and a primary care provider. It is therefore interesting to note that the data
show a significant increase in regular asthma clinic visits. These increases
lend power to the notion that the Sinai CHW model bridges the gap between
the patient and the primary care provider.
Lessons Learned and Challenges A large state-wide initiative of this
nature provides a wealth of information on successes and challenges. Several
key lessons were learned through the process of implementing and evaluat-
ing CPATCE. First, a coordinating site is vital to the success of a multisite
270 TRANSLATING DATA INTO COMMUNITY ACTION

project such as this. SUHI’s role as the coordinating, training, and evalua-
tion site for the project was crucial to the successful roll out of the project.
Second, sufficient time and resources need to be allocated specifically to
establishing relationships within the community, publicizing the program,
securing buy-in, and identifying viable recruitment sources. When adequate
time and resources are not allocated to these activities, recruitment and
retention suffer. It is also virtually impossible to successfully implement a
community-based intervention without support and buy-in from community
leaders. To ensure success, the entire community must be saturated with
information about the program, and activities must coordinate with existing
programs and services. The most important method to improving retention
is for the CHW to simply establish a good relationship with the family and
to gain the family’s trust.
Although the intervention was a great success in three of the seven sites,
the more rural communities faced some problems in implementing the
model that are worth noting. Specifically, the implementation of the CHW
model within rural Illinois communities proved to be particularly challeng-
ing. Although CHW models have been utilized effectively in other rural
communities both in the United States and other countries, it does not seem
that Illinois rural communities are ready to embrace this approach. Given
a CHW model may be ideal in supplementing coverage within medically
underserved rural communities, hopefully this mindset will change over
time. However, considerable resources would need to be devoted to over-
coming barriers and establishing support for a CHW model in rural Illinois
communities.
Conclusions The results of CPATCE show that the SUHI CHW model
translates well to other urban and metropolitan environments. Although this
particular project had difficulty in rural communities, there is no reason to
believe that CHW models cannot and do not work in rural environments.
CHW models have been used extensively in both rural and urban communi-
ties (Butz et al., 1994; Kelly et al. 2002; Kinney et al., 2002; Krieger et al.,
2004; Morgan et al., 2004; Butz et al., 2005; Krieger et al., 2005; Martin et
al., 2006). Unfortunately, CHW interventions are not often vigorously eval-
uated. It is vital that more resources be devoted to both the implementation
and evaluation of CHW models in both rural and urban environments so
that findings can impact policy, resulting in sustainable programs. Despite
the fact that only three of the six sites were able to implement the model
with enough participants to allow for evaluation, the consistency of findings
between PAI-2 and CPATCE sites strongly suggest that culturally appro-
priate CHWs are an effective means of improving asthma management in
urban and smaller metropolitan areas.
 Pediatric Asthma in Black and Latino Chicago Communities 271

Healthy Home, Healthy Child: The Westside Children’s

Asthma Partnership (HHHC)
Background Nine years of experience by SUHI/SCH aimed at improving
asthma management among children living in disadvantaged communities
has led to two important conclusions: (1) CHWs are effective in establish-
ing relationships of trust with the families they serve and consequently are
in a position to comprehensively address the barriers families face in prop-
erly managing a child’s asthma; and (2) the social and economic issues that
impede a family’s ability to manage asthma are complex and often require
expertise that goes beyond that of a medical professional or CHW. Therefore,
in September 2008, with funding from the CDC3, SUHI/SCH initiated its
most comprehensive initiative to date: Healthy Home, Healthy Child: The
Westside Children’s Asthma Partnership (HHHC).
HHHC aims to translate the Seattle-King County Healthy Homes
(SKCHH) Phase I (Krieger et al., 2004; Krieger et al., 2005) environmen-
tal intervention model into one that is culturally appropriate and effective
for children with poorly controlled asthma living on Chicago’s Westside.
The SKCHH project (Phase I) sought to reduce asthma-related morbid-
ity by reducing exposure to indoor asthma triggers among low-income
children with asthma living in urban households. The approach utilized
CHWs who were trained to serve as Community Home Environmental
Specialists. A total of 274 low-income households with a child 4 to 12
years who had persistent asthma were enrolled and randomized into either
a high- or low-intensity intervention. The high-intensity group received
seven home visits over the course of a year. The home visits entailed
structured home environmental assessments, preparation and teaching of
an AAP, social support, and a full set of resources to reduce exposures
(e.g., allergy-control pillow and mattress encasements, smoking cessation
counseling, etc.). Those in the low-intensity group received a single CHW
visit and some supplemental materials. Evaluation fi ndings suggested that
those in the high-intensity group improved to a significantly greater degree
with regard to caregiver quality of life, urgent health resource utilization,
and actions to reduce dust in the home. The methods and findings of the
SKCHH have been published (Krieger et al., 2004; Krieger et al., 2005).
Two other significant initiatives have included components of the SKCHH
approach within an intervention utilizing CHWs making home visits and
have also yielded significant improvements in outcomes (Spielman et al.,
2006; Parker et al., 2008).
Although the SKCHH project has demonstrated considerable success in
the Seattle-King County Community among diverse minority, lower-income
populations, the communities on Chicago’s Westside offer a different cli-
mate in which to implement the intervention, evaluate its effectiveness, and
272 TRANSLATING DATA INTO COMMUNITY ACTION

document the process and feasibility of translating the model to other popu-
lations. HHHC is utilizing a collaborative approach drawing on the strengths
of several partners and incorporating full and meaningful participation by
the community.
Intervention The HHHC intervention works with children between the
ages of 2 and 14 years with poorly controlled asthma as well as their caregiv-
ers. Children must live in one of Chicago’s Westside, predominantly Black
communities to participate in the program. HHHC seeks to empower fam-
ilies to make the changes necessary to improve their child’s asthma man-
agement and, thereby, the family’s quality of life. The Sinai CHW home
visit model remains at the heart of the approach. The home visits focus on
both improving asthma management by educating caregivers and children
to better manage asthma medically while also addressing the disproportion-
ate presence of asthma triggers in the home environment. CHWs work with
families to set achievable goals that will move them toward optimal health.
Figure 11-5 presents the intervention model in more detail.
Partners in this endeavor include the Chicago Asthma Consortium (CAC),
Health & Disability Advocates (HDA), the Metropolitan Tenant’s Organization

Healthy Home, Healthy Child

Outreach & Initial contact Referrals to Follow-up
Recruitment /Home Visit Partner Agencies Home Visits Outcomes

Community Outreach Assess Eligibility Metropolitan Tenants Monthly follow-up Primary Goals
Organization and data collection
Presentations Reduced asthma
phone calls
Health Fairs Housing Issues: Morbidity and
Baseline Visit Mold, Pests, Leaks Mortality
Schools / Daycares
Informed Consent Lead
Workshops
Data Collection: Improved Quality
Community Events Tenants Rights Home Visits:
Health Resource of Life
Tenant / Landlord
Utilization, Symptoms, 3, 6, 9, 12-Month
Negotiations
Quality of Life,
Data Collection:
Medication Use, etc.
Recruitment Mortality, Morbidity,
Asthma Education:
Quality of Life,
ED / Inpatient What is asthma, asthma Secondary Goals
Asthma Knowledge,
Physicians / Clinics symptoms, how to use Health & Disability Self-Efficacy, Decreased Number
Community Outreach devices and Advocates Medication Use, of asthma triggers
Schools / Day Cares medications, etc.
Home Environment due to improved
Assess Family’s Legal Needs
Community Partners Checklist, etc. home environment
Needs Social Security
Advertisement/
Develop Asthma Income Benefits Improved asthma-
Self-referrals Asthma Education:
Improvement Plan Special Education / Asthma symptoms, related knowledge
504 Plans asthma triggers, Improved primary
Medicaid / trigger avoidance, caregiver’s self-
Baseline Visit #2 Healthcare Benefits proper medication efficacy
use, smoking
Data Collection: Empowered
cessation, etc.
Home Environment families
Checklist Update Asthma Improved
Asthma Education: Improvement Plan Medication Use
Asthma triggers, green
cleaning
Update Asthma
Improvement Plan

Community Input & Engagement

Figure 11-5 Healthy Home, Healthy Child Intervention Model

 Pediatric Asthma in Black and Latino Chicago Communities 273

(MTO), and the Sinai Community Institute (SCI). The CAC, established in
1996, is a coalition of medical and public health professionals, business lead-
ers, government agencies, community-based organizations, and individuals
dedicated to improving the quality of life for people with asthma through net-
working, information sharing, and collaboration. HDA, a nonprofit legal and
policy organization based in Chicago, Illinois, protects and promotes health-
care access, healthy housing, and income security for low-income popula-
tions, including children and their families, people with disabilities, and older
adults. For more than 20 years, the MTO, a nonprofit organization, has edu-
cated, organized, and empowered tenants to have a voice in the decisions that
affect the availability and affordability of safe and decent housing. MTO is
the largest organizer of tenants in Chicago and serves more than 15,000 ten-
ants annually. The SCI, located in North Lawndale, is committed to improv-
ing the overall health of Chicago residents by implementing a comprehensive
array of health improvement and social service programs. All SCI programs
address social, economic, and environmental factors that influence the health
of residents of Chicago’s Westside communities.
Each of these partners brings unique strengths to the project. MTO provides
support in training CHWs to conduct a thorough environmental assessment
and to work with families in modifying the home environment and behaviors
to reduce exposure to asthma triggers. A MTO Housing Advocate handles
environmental situations beyond the expertise of the CHW. Attorneys work-
ing for HDA provide pro bono assistance in resolving housing and other
issues requiring legal intervention. A Community Advisory Board comprised
of community leaders, representatives, and residents has been assembled by
SCI and CAC to inform the project and its approach.
The program objective is to significantly impact asthma-related measures
of morbidity, urgent health resource utilization, and quality of life. Therefore,
progress is being monitored toward two primary goals (to decrease asth-
ma-related morbidity and to improve quality of life) and three intermediate
goals (to decrease the number of asthma triggers in the home environment,
to improve asthma-related knowledge of the child’s primary caregiver, and
to improve the caregivers’ confidence in their ability to properly manage
asthma).
To introduce the HHHC program to the community, a launch event was
held in the North Lawndale community on May 5, 2009. The HHHC Launch
Event garnered much media attention. Several stories appeared on local tele-
vision and radio stations, including WBBM-TV CBS 2 Chicago and WBEZ-
Chicago Public Radio. A news article by Agnes Jasinski appeared in the
Chicago Tribune on May 15, 2009, entitled, “Program makes asthma a little
easier to live with: Health educators visit homes to help families eliminate
274 TRANSLATING DATA INTO COMMUNITY ACTION

asthma triggers.” Figure 11-6 presents another article that appeared in the
local communtiy newspaper, the North Lawndale Community News.
Enrollment began February 2009 and will continue for 17 months, ending on
June 30, 2010. HHHC hopes to help 300 families living on Chicago’s Westside
to better manage their child’s asthma by improving medical management while
also reducing the presence of triggers in the home. By building on the strengths
and expertise of several partners, HHHC is now poised to address many of the
barriers that limit a family’s ability to properly manage asthma and is therefore
optimally positioned to make an impact on the lives of children with poorly
controlled asthma living on Chicago’s resource poor Westside.

Figure 11-6 Article in the North Lawndale Community News, a local community
newspaper, published following Healthy Home, Healthy Child’s launch event
Source: Krista Christophe, “Sinai Urban Health Institute Kicks off Free Asthma Care in
North Lawndale,” North Lawndale Community News, May 14th–20th, 2009, Volume 11,
Issue 20.
 Pediatric Asthma in Black and Latino Chicago Communities 275

Conclusions: Implications and Next Steps

The United States has long recognized the presence of health disparities
(U.S. Department of Health and Human Services, 1990; U.S. Department
of Health and Human Services, 2000; Keppel, Pearcy, and Wagener, 2002;
Agency for Healthcare Research and Quality, 2006; Keppel, 2007) and has
even made a commitment to eliminating such disparities (U.S. Department
of Health and Human Services, 2000). In Chicago’s minority and poor neigh-
borhoods, these disparities and the injustices they represent persist (Silva
et al., 2001; Margellos, Silva, and Whitman, 2004; Orsi, Margellos-Anast,
and Whitman, 2010). Asthma is one condition that disproportionately affects
poor and minority children living in inner-city neighborhoods. Although the
prevalence of pediatric asthma nationally increased by 4% per year between
1980 and 1996, it has since stabilized, with approximately 12% of U.S. chil-
dren suffering from physician-diagnosed asthma (CDC, 2009a). Meanwhile,
children in four of the six Chicago communities included in the Sinai Survey
were twice as likely to have asthma as children nationally (CDC, 2009a)
or in Chicago as a whole (Gupta, Carrión-Carire, and Weiss, 2006). Not
only are they more likely to have asthma— they are also more likely to
have asthma that is poorly controlled and to suffer needlessly from a condi-
tion that can be managed. These findings are consistent with other studies
documenting disparities in prevalence and control of asthma by race/eth-
nicity and suggest that rates and effects are highest in disadvantaged, urban
communities (Weiss and Wagener, 1990; Marder et al., 1992; Targonski
et al., 1994; Thomas and Whitman, 1999; Simon et al., 2003; Nicholas et al.,
2005; Akinbami, 2006; Gupta, Carrión-Carire, and Weiss, 2006; Lara et al.,
2006; Quinn et al, 2006; Akinbami, 2007; Naureckas and Thomas, 2007;
Shalowitz et al, 2007; Gupta et al., 2008). These survey findings support the
need for local-level data by documenting that national- and city-level esti-
mates often mask disparities on the local level. It is difficult to develop and
appropriately target interventions and policies without specific information
on the communities most in need of them.
Among the factors postulated as contributing to the disproportionate
asthma burden experienced by inner-city, minority populations are genet-
ics (Lester et al., 2001), environmental exposures (Infante-Rivard, 1993;
Huss et al., 1994; Eggleston, 1998; Eggleston, 2000; Lanphear et al., 2001;
Gruchalla et al., 2005; Eggleston, 2007), prenatal exposures (Di Franza,
Aligne, and Weitzman, 2004), and access to and quality of care (Crain
et al., 1998; Shields, Comstock, and Weiss, 2004; Greek et al., 2006).
Although genetics may play a role in the increased burden of asthma expe-
rienced by certain populations, the evidence suggests a genetic predisposi-
tion combined with early environmental exposure as the pathway to asthma
276 TRANSLATING DATA INTO COMMUNITY ACTION

symptoms (Eggleston, 2000; Chan-Yeung et al., 2005). Children living in

poor, inner-city neighborhoods often reside in substandard housing, resulting
in increased exposure to asthma triggers and allergen sensitization (Gelber
et al., 1993; Infante-Rivard, 1993; Willies-Jacobo et al., 1993; Sarpong et al.,
1996; Eggleston, 2000; Ashley et al., 2006; Krieger, Takaro, and Rabkin,
2007). Furthermore, the detrimental effects of tobacco smoke on children
who have asthma have been well-established (Chiomonczyk et al., 1993).
The Sinai Survey data shed light on some of these potential contributing
factors, allowing for a more appropriate response.
A recent Cochrane Review of 38 asthma interventions targeting 7,843
children who were enrolled into an educational intervention following a
visit to an ED concluded that subsequent ED visits and hospitalizations were
significantly reduced among intervention participants as compared to con-
trols (Boyd et al., 2009). However, the studies examined varied widely with
regard to the intensity of the intervention, the person providing the education
(lay person, nurse, social worker, etc.), the location of the education, and the
degree of focus on different aspects of asthma management. No definitive
conclusions could be drawn about the specific characteristics of a successful
program. This is hardly surprising given that the review included studies
conducted in several different countries and in a wide array of communities.
What might be appropriate and effective in one community cannot necessar-
ily be translated to another, and local level data pertaining to both the pres-
ence of health conditions and their contributing factors are vital to ensuring
the most appropriate approach is utilized.
In recent years, the use of CHW (a.k.a. community health educators, lay
health educator, peer educator, promotoral de salud, etc.) to improve access
to health-care services, health knowledge, health outcomes, and health behav-
iors has become a frequently utilized model among underserved populations.
Employing community members as CHWs is a novel way to ensure that
the approach is culturally appropriate while also helping to empower dis-
advantaged communities by building them up from within. As documented
above, SUHI has implemented and evaluated a series of pediatric asthma
interventions utilizing CHWs and has found the model to be effective and
well-accepted by urban communities.
Asthma expenditures were estimated at $14.7 billion in 2007 in the United
States (National Institutes of Health, NHBLI, 2007). Although this amount
includes costs for care provided in hospitals, ED, physician services, and
medications, the greatest portion is associated with urgent health resource
utilization that could be avoided if asthma were properly controlled. The
CHW model has been demonstrated to effectively improve asthma manage-
ment and decrease urgent health resource utilization among children with
poorly controlled asthma living in urban communities. Given the potential
 Pediatric Asthma in Black and Latino Chicago Communities 277

cost savings associated with implementing the model, it should be reim-

bursed via Medicaid and other insurers, allowing for wider implementation
and sustainability.
CHWs have the potential of reducing health-care costs while also making
a greater positive impact on the communities in which they live and serve.
Furthermore, they empower communities to take control of their own health
and inspire a sense of community by building the community from within.
Ultimately, CHW programs encourage children with asthma to live healthy
and productive lives so that they may grow to be productive and active mem-
bers of their community and society overall.
One novel aspect of the Sinai Survey is that community members were
included in each and every phase of the process, beginning with the selection
of survey topics and questions and continuing to the interpretation of find-
ings and the inception of approaches to improve community health based on
the findings (Shah and Whitman, 2010). Although SUHI’s pediatric asthma
work initially began prior to the survey being completed, it has been greatly
strengthened over the years as it has continued to evolve into a true partner-
ship with the community.
Unfortunately, health disparities continue to persist in the United States,
with certain communities experiencing a disproportionate and unjust preva-
lence of disease and poor health. Within these communities live real people
and children who may be suffering simply because of where they live or the
material resources that they have (or don’t have). As demonstrated in this
chapter, asthma is a condition that exerts an excessive burden on children
living in certain communities. Although we do not know how to prevent
children from acquiring asthma, we do know how to help them control their
disease so that they can live full and productive lives. Findings from the
Sinai Survey and the ensuing attention to pediatric asthma, along with the
development of culturally appropriate interventions, have made the promise
of improved health a reality for children with asthma living in burdened
communities in Chicago and Illinois. It is the hope and expectation of the
SUHI that the Sinai Model of identifying a health disparity and working
with communities to best address it will result in the development of suc-
cessful interventions (such as the ones described in this chapter), proliferat-
ing to other communities across the United States.

Acknowledgments

This work could not have been done without the dedication and time of staff
members of the Sinai Urban Health Institute and Sinai Children’s Hospital,
especially Gloria Seals, who has been instrumental in Sinai’s asthma work
278 TRANSLATING DATA INTO COMMUNITY ACTION

from the very beginning. Dr. Steve Whitman, Director, Sinai Urban Health
Institute, and Dr. Dennis Vickers, Chairman, Sinai Department of Pediatrics,
have provided invaluable, continual support and guidance to the projects
described herein. Generous funding for the interventions was provided by
The Michael Reese Health Trust, The Illinois Department of Public Health,
and The Centers for Disease Control and Prevention. The support of partner
agencies (who are named above) has been crucial in making each of these
interventions a success especially that of the Chicago Asthma Consortium,
the Respiratory Health Association of Metropolitan Chicago and the Sinai
Community Institute. Finally, we would like to thank all participating fam-
ilies whose invaluable feedback helped shape and inform our interventions,
enabling us to better serve the community.

Notes

1. Controller medications (also called preventive or maintenance medications) are gener-

ally taken once or twice a day every day (as prescribed) to control and prevent asthma
symptoms. Most work by reducing inflammation and sensitivity inside the airways.
Controller medications do not work quickly and do not provide immediate relief of
asthma symptoms. Controller medications come in a variety of formats, but inhaled
steroids are the most common type. Other types include: Leukotrien modifiers, long-
acting beta agonists, and immunomodulators. Quick Relief medications (also called
reliever medications, rescue medications, short-term medication, and bronchodilators)
act quickly to relief asthma symptoms that have already started. These medications
work to expand and relax the bronchial airways. They usually work within minutes
to provide immediate relief of asthma symptoms such as coughing, chest tightness,
shortness of breath and wheezing.
2. This research was supported in part by grants from the Illinois Department of Public
Health (Grant Numbers 001-48230-440-0105 & 733-48230-4900-0000). The views
expressed are those of the authors and do not necessarily represent the views of the
funding agencies.
3. This research was supported in part by grants from the Centers for Disease Control
and Prevention (Grant Number 5R18EH000355-02). The views expressed are those of
the authors and do not necessarily represent the views of the funding agencies.

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Disparities with Local Data, eds. Steven Whitman, Ami M. Shah, and Maureen R.
Benjamins. New York: Oxford University Press.
Whitman, Steve, Cynthia Williams, and Ami M. Shah. 2004. Sinai’s Community Health
Survey: Report 1. Chicago, IL: Sinai Health System.
Williams, Seymour G., Diana K. Schmidt, Stephen C. Redd, and William Storms. 2003.
Centers for Disease Control and Prevention. Key clinical activities for quality asthma
care: Recommendations of the National Asthma Education and Prevention Program.
Morbidity and Mortality Weekly Report 52(RR06):1–8.
Willies-Jacobo, Lindia J., Joyce M. Denson-Lino, Angela Rosas, Richard D. O’Connor,
and N. W. Wilson 1993. Socioeconomic status and allergy in children with asthma.
Journal of Allergy and Clinical Immunology 92(4):630–632.
Wolf, Raoul L., Carolyn A. Berry, Trimina O’Connor, and Lenore Coover. 1996.
Validation of the brief pediatric asthma screen. Chest 116(4 Suppl 1):224S–228S.
12
HUMBOLDT PARK: A COMMUNITY
UNITED TO CHALLENGE ASTHMA

Molly Martin and Juana Ballesteros

Asthma Disparities in Puerto Rican Children Nationally

and Locally: Defining the Problem

Puerto Rican children experience the highest asthma prevalence and mor-
bidity rates of any racial/ethnic group (Centers for Disease Control and
Prevention [CDC], 2002; CDC, 2004; Akinbami, Flores, and Morgenstern,
2006; Loyo-Berrios, Orengo, and Serrano-Rodriguez, 2006). Data from the
National Health Interview Survey collected from 1997 to 2001 reported an
overall prevalence rate of 26% in Puerto Rican children ages 2 to 17 years,
compared to 16% in Black children, 13% in White children, and 10% in
Mexican children (Akinbami, Flores, and Morgenstern, 2006). Asthma
attack rates over the past 12 months showed a similar pattern: 12% for Puerto
Rican children compared to 8% in Black children, 6% in White children,
and 4% in Mexican children (Akinbami, Flores, and Morgenstern, 2006).
Rates on the island of Puerto Rico appear to be even higher, with 46% of
elementary school children reporting an asthma diagnosis and 32% reporting
a wheezing attack requiring emergency room care (Loyo-Berrios, Orengo,
and Serrano-Rodriguez, 2006).
The reasons for this disparity are not fully understood, although genetic
and environmental factors play a role. Genetics determine individual asthma
severity and atopy (Blumenthal and Blumenthall, 2002; Cookson, 2002). The
genomic regions influencing asthma are slightly better understood for Blacks
than for Latinos, but this remains an area of needed exploration for minority
285
286 TRANSLATING DATA INTO COMMUNITY ACTION

populations (Scirica and Celedón, 2007). Puerto Ricans and Mexicans are
frequently combined into one group of “Hispanics”; however, their asthma
prevalence rates vary dramatically, and differences have been shown in their
responses to asthma medications (Stevenson et al., 2001) and in sensitivity
to allergens (Celeón et al., 2004). This suggests differences in underlying
genetics and severity between the two groups. Indoor environmental expo-
sures, or “home asthma triggers,” are related to asthma prevalence rates in
Puerto Ricans (Celeón et al., 2004) and contribute to exacerbations (Huss
et al., 1994; Freeman, Schneider, and McGarvey, 2003; Findley et al., 2004;
Gruchalla et al., 2005). It is possible that an interaction of a genetic dispo-
sition with early life physical and social environmental exposures contrib-
utes as well (Lara et al., 1999). A recent study comparing clinical ratings
of pediatric asthma severity in Island Puerto Ricans, Rhode Island Puerto
Ricans, Rhode Island Dominicans, and Rhode Island Whites reported Island
Puerto Rican children had significantly milder asthma than the other groups.
However, Island Puerto Rican children had more emergency department vis-
its than the other groups, which may be a function of health-care access on
the island (Esteban et al., 2009).
Similar disparities have been documented in Chicago, which is home to
one of the largest Puerto Rican populations in the mainland United States.
Humboldt Park is the historic home of the Chicago Puerto Rican community.
A rich and dynamic community with a long history of activism, Humboldt
Park is racially and ethnically diverse, with Blacks, Mexicans, Puerto Ricans,
and Whites living side-by-side. United States 2000 Census Data for Humboldt
Park showed the population to be 48% Black (31,207) and 48% Latino (31,607),
with 37% of Latinos claiming Puerto Rican heritage. When including the sur-
rounding neighborhoods, the Puerto Rican population in 2000 was estimated
at approximately 65,000. In addition, Humboldt Park is recognized for having
some of the most robust community-based organizations anywhere in the city.
There is an active communal life, and the community identity is reinforced by
its own newspaper, its own radio station, and its own charter high school.
When selecting the community areas for the Sinai’s Improving Community
Health Survey (Sinai Survey), the diversity of Humboldt Park and its contig-
uous neighbor West Town were key factors in the decision to include these
two community areas in the study. The details of the survey development
are discussed in Chapter 3 (Shah and Whitman, 2010), and the specifics
of the asthma portion are described in Chapter 11 (Margellos-Anast and
Gutierrez, 2010). As shown in Figure 11-1 in Chapter 11 (Margellos-Anast
and Gutierrez, 2010), the pediatric asthma prevalence rates were highest in
Humboldt Park and West Town (17% and 28%, respectively). When broken
down by ethnic groups (Fig. 11-2, Chapter 11, Margellos-Anast and Gutierrez,
2010), Puerto Rican children had the highest asthma prevalence rate of all
 Humboldt Park 287

Asthma Prevalence
Less than 9.0%
Between 9.0–12.5%
Between 12.6–16.8%
Between 16.9–20.0%
Greater than 20.0%

Figure 12-1 Pediatric Diagnosed Asthma Rates in Chicago and the Target Communities
(Blown-Up Area)
Source: Gupta, Ruchi S. 2009. Unpublished data, Children’s Memorial Hospital, Chicago,
Illinois.

groups. Twenty-one percent of Puerto Rican children had diagnosed asthma

and another 13% had a positive asthma screen for a potential total asthma
burden of 34%. The asthma burdens for Black, White, and Mexican children
were 25%, 20%, and 14%, respectively. These rates have subsequently been
confirmed by another study that surveyed elementary school children and
found dramatic variations in asthma prevalence by community boundaries
(Fig. 12-1, Gupta et al., 2008).

Addressing Asthma Disparities for Puerto Rican

Children Nationally

Despite clear evidence of the highest asthma morbidity and mortality of

any racial or ethnic group in the United States, specific interventions that
target Puerto Ricans are severely lacking. Only three intervention studies
in this population could be found. Tatis and colleagues conducted a clinic-
based asthma education intervention in a population of Latino adults in New
York City (Tatis, Remache, and DeMango, 2005). Their intervention was
288 TRANSLATING DATA INTO COMMUNITY ACTION

associated with reduced emergency department and hospital utilization and

improved asthma-related quality of life. However, the study had many limi-
tations. Although the target community had a large Dominican and Puerto
Rican population, ethnicity was not defined further than Latino. The study
was not a randomized controlled trial; the control group consisted of non-
responders. Outcomes were collected from emergency department records
(Tatis, Remache, and DeMango, 2005). Cloutier and colleagues tested a clin-
ic-based intervention for Black and Latino children in Connecticut, where the
predominant Latino ethnicity was Puerto Rican. They reported the Latino
children sought medical care more often and filled more prescriptions than
the Black children. Their intervention appeared to reduce health-care utili-
zation in both groups (Cloutier et al., 2008).
The most rigorous study to date with Puerto Rican children was con-
ducted in Puerto Rico. The investigators used a randomized controlled trial
to compare home education from asthma counselors to written education
sent in the mail. The asthma counselor group had more symptom-free nights
and less emergency room visits or hospitalizations. However, no differ-
ence was seen in symptom-free days, activity limitations, and medication
use. Study limitations included a short intervention phase and self-reported
outcomes (Canino et al., 2008). These studies, especially the third study in
Puerto Rico, provide us with some preliminary evidence to inform dose and
duration of future interventions with Puerto Rican children, but much more
research is needed.

The Community Begins to Unite: The Greater Humboldt Park

Community of Wellness Asthma Task Force

The Sinai Survey results intensified Humboldt Park leaders’ focus on health.
In particular, the Puerto Rican Agenda, an informal group of politicians,
social service agency staff, community leaders, and residents concerned with
the Humboldt Park Puerto Rican community decided to take on health as one
of its focus issues in 2003. At the time the Sinai data were released, the New
Communities Program (NCP) of the Local Initiatives Support Corporation/
Chicago supported community development in multiple Chicago neighbor-
hoods, with intentions to include Humboldt Park. Their goal is to rejuvenate
challenged communities, bolster those in danger of losing ground, and pre-
serve diversity in the path of gentrification through the creation of a 5-year
Quality-of-Life strategic plan. Many of the ideas of the Puerto Rican Agenda
Health Committee were brought to and adopted by the NCP Healthcare
Subcommittee. As a result, health was prioritized as an essential compo-
nent of community development. In May 2005, the Humboldt Park NCP
 Humboldt Park 289

plan named seven strategies addressing education, wellness, families, land

use, youth, safety, and job training. The Greater Humboldt Park Community
of Wellness (GHPCW) was formed by members of the NCP Health Care
Subcommittee and the Puerto Rican Agenda Health Committee to ensure
implementation of the wellness strategy within a 5-year plan. The GHPCW
gained strength when the Puerto Rican Cultural Center (a community-based
organization that has served for more than 35 years as a catalyst for address-
ing some of the most important historical events of the Puerto Rican diaspora
and Latino communities in Chicago) and the Sinai Urban Health Institute
(SUHI) joined. They were further strengthened by the Near Northwest
Neighborhood Network/Humboldt Park Empowerment Project’s decision to
rely on the GHPCW for health-oriented community-based partnerships.
The GHPCW defines itself as a grass-root, community-based health coali-
tion serving the Chicago community areas of Humboldt Park and West Town.
It takes a community-organizing, health promotion, preventive, collaborative,
partnership-building, holistic, and community strengths-based approach at
improving the community’s health. GHPCW membership currently includes
community members and more than 60 organizations, including health-care
providers, human service agencies, advocacy groups, research institutions,
schools, and institutions of higher education. The GHPCW organized its
members into eight Task Forces, one for each prioritized disparity: asthma,
mental health, oral health, HIV/AIDS, obesity, diabetes, school health, and
health careers. Task Forces were charged with education, advocacy, service
coordination, and project implementation as described in Table 12-1.
As the GHPCW grew and strengthened, it became known as the umbrella
organization for community-wide, broad-based collaborative interventions
impacting health in the greater Humboldt Park area. This caught the attention
of some people outside of the community who wanted to come into the com-
munity and tap into its well -organized assets. For the most part, experiences
and relationships with these individuals, including university-based research-
ers, were collaborative and mutually beneficial. However, there were occasions
where researchers did not quite understand how to work with communities in
equitable research relationships. This prompted the GHPCW to draft a doc-
ument entitled “Values, Principles, and Protocols Guiding Research in the
Greater Humboldt Park Community.” The specific goals of these principles/
protocols are to provide an agreed standard of research conduct that:

• clarifies, in advance, expectations of the research process and outcomes

for everyone involved;
• fosters mutual exchange of information, ideas, skills, and appreciation;
and
• builds a foundation for effective research relationships.
290 TRANSLATING DATA INTO COMMUNITY ACTION

TABLE 12-1 Greater Humboldt Park Community of Wellness Task Force Activities
Task Forces
Asthma, Mental Health, Oral Health, HIV/AIDS, Obesity, Diabetes, School
Health, Health Careers
Activities
1. Educate themselves and the community at large about each of these
disparities. Educate regarding disease prevalence compared to other
communities and across race and ethnicity within the community, regarding
socio-economic contributors to health, and regarding disease prevention,
self-care, medical screening diagnosis and treatment. For health careers,
educate about health labor needs. Also prepare individuals for higher
education and/or employment in health careers.
2. Advocate for changes in neighborhoods, and in city and state practices,
policies and budgets, if these changes would improve the health status of
our community.
3. Coordinate existing services among the numerous health and human service
organizations. Service coordination crosses many sectors: public health
departments and private non-profits; research institutions and community
organizations; health, human services and advocacy organizations.
4. Implement community intervention projects to actually change the health,
educational or employment status of individuals in our community. Projects
are typically developed through collaborative processes. When a project is
ready for funding and subsequent implementation, Community of Wellness
staff assists with preparing grant applications, and fosters a collaborative
approach to project implementation.

The GHPCW Asthma Task Force

The Asthma Task Force first convened in the summer of 2007. Initial mem-
bers included parents, representatives from local community-based organiza-
tions such as Association House of Chicago (one of the oldest and largest of
the original settlement houses in the city, providing social services to over
20,000 individuals annually), and West Town Leadership United (an organi-
zation that develops leadership, advocacy, and the organizing skills of local
parents). Other initial members include the Respiratory Health Association
of Metropolitan Chicago (a prominent lung health advocacy agency, for-
mally the American Lung Association of Metropolitan Chicago) and two
academic research centers (Rush University Medical Center and SUHI). The
Task Force worked to strengthen existing collaborations, initiate a process
to develop new collaborations, and secure funding to reduce asthma in the
community.
Informed by research and the expertise of the members, the Task Force
decided the most effective way to impact asthma was to focus on outreach
and education. Specifically, the Task Force aimed to educate the commu-
nity on the impact of asthma, disease self-management, and how to access
medical care and pharmaceuticals. Efforts targeted the entire family, not just
 Humboldt Park 291

children with asthma. Furthermore, schools were identified as a potential

focal point where asthma education could be centralized and most effectively
reach many of the local asthma stakeholders (e.g., children, parents, teachers,
administrators, community-based organizations, and local health-care provid-
ers). As the efforts of the Task Force strengthened and became more visible,
its membership grew. The Task Force built strategic relationships with newer
stakeholders, including a large academic research institution (Northwestern
University) and the Chicago Public Schools Office of Specialized Services.
Since 2007, the Task Force members have worked together to leverage
each other’s strengths, capabilities, and expertise to meet a common goal—a
reduction in the high prevalence and morbidity rates of asthma for children
living in Humboldt Park and West Town. This has resulted in the successful
implementation of two research initiatives to gather even more comprehensive
data on cultural, social, and community factors impacting asthma, a CDC-
funded community-wide asthma education project, and a National Institutes
of Health (NIH)-funded intervention study for asthma (Table 12-2).
Looking ahead, the Task Force will be continuing its work with local
schools as well as affordable housing developers to make the school and
home environments asthma friendly. The Task Force will seek out funding
and projects to educate tenants and landlords on integrated pest manage-
ment, low allergen building options, and smoke-free buildings.

Community-Based Participatory Research Projects

that Emerged

A Community–Academic Partnership for Asthma Control

in Humboldt Park
Principal Investigators: Ruchi Gupta, MD (Children’s Memorial Hospital),
and Juana Ballesteros, RN BSN MPH (Greater Humboldt Park Community
of Wellness)
The Sinai Survey provided preliminary data on asthma, but asthma prev-
alence and severity in the schools remained unclear. There was also min-
imal understanding of mediating community factors or the availability of
asthma resources within the schools for children and families. A partnership
to address these issues was created between the Asthma Task Force of the
GHPCW and Dr. Ruchi Gupta, a pediatrician and researcher at Children’s
Memorial Hospital. Other key research team members included Maureen
Damitz from the Respiratory Health Association of Metropolitan Chicago
and Dr. Molly Martin from Rush University Medical Center. Funding was
obtained from the Alliance for Research in Chicagoland Communities of the
Northwestern University Clinical and Translational Sciences Institute.
TABLE 12-2 Summary of Asthma Research in Humboldt Park from 2005 to 2009

Title Project Funding Source Principal Investigator Relevant other Investigators and Partners Outcomes

A Community- Alliance for Research Ruchi Gupta, MD* Molly Martin, MD* (Rush University Asthma prevalence
Academic in Chicagoland (Children’s Memorial Medical Center), Maureen Damitz* and control in
Partnership Communities of Hospital) and Juana (Respiratory Health Association of schools. Violence
for Asthma the Northwestern Ballesteros, RN Metropolitan Chicago) and asthma.
Control in University Clinical and BSN MPH* (Greater
Humboldt Translational Sciences Humboldt Park
Park Institute Community of
Wellness)
The Impact of Robert Wood Johnson Ruchi Gupta, MD* Juana Ballesteros, RN BSN MPH* Violence and asthma.
Community Foundation Physician (Children’s Memorial (Greater Humboldt Park Community Intervention
Factors on Faculty Scholars Hospital) of Wellness) and Maureen Damitz* development.
Childhood Program (Respiratory Health Association of
Asthma Metropolitan Chicago)
Severity
Chicago Public Centers for Disease Project Manager: Chicago Asthma Consortium and Asthma prevalence in
Schools Control and Lilliana De Santiago* Juana Ballesteros, RN BSN MPH* schools. Increased
Asthma Prevention (Chicago Public (Greater Humboldt Park Community asthma training for
Management Schools) of Wellness), Respiratory Health school educators.
Project Association of Metropolitan Chicago,
Lenore Coover, Safer pest Control
Project
The Chicagoland Chicago Asthma Stephen Samuelson, Juana Ballesteros, RN BSN MPH* Community
Asthma Consortium MPA (Chicago (Greater Humboldt Park Community of perceptions of
Network Asthma Consortium) Wellness) asthma.
(CAN)
Humboldt
Park Town
Hall Meeting
A Qualitative Rush University Molly Martin, MD* Puerto Rican families’
Exploration of Department of (Rush University perceptions of
Asthma Self- Preventive Medicine Medical Center) asthma.
Management
Beliefs and
Practices in
Puerto Rican
Families
La Comunidad National Institutes of Molly Martin, MD* Greater Humboldt Park Community Intervention testing
Unida Health (Rush University of Wellness, Puerto Rican Cultural for Puerto Rican
Retando el Medical Center) Center, Near Northwest Neighborhood children.
Asma/The Network, and Lilliana de Santiago*
Community (Chicago Public Schools)
United to
Challenge
Asthma

Note : *Member of Greater Humboldt Park Community of Wellness Asthma Task Force.
294 TRANSLATING DATA INTO COMMUNITY ACTION

A survey tool was developed, tested, and implemented in two area Chicago
Public Schools. The two schools were selected because their student body
was a good representation of school age children in Humboldt Park based
on socio-economic, racial, and ethnic indicators. Almost 500 parents at two
local Chicago Public Schools completed the survey tool to: (1) determine
asthma prevalence and control; (2) understand community factors poten-
tially contributing to asthma including issues of safety, pollution, and access
to care; and (3) assess both the availability of resources for students with
asthma and the degree of trust parents have in these resources.
The design of this research project utilized a Community-Based Participatory
Research approach. Critical to the successful completion of 494 surveys was
the trusted relationship between the GHPCW and the school administrators.
This relationship did not develop during this project—it was brokered by a
long-time, local resident who served as school organizer for the Near Northwest
Neighborhood Network/Humboldt Park Empowerment Partnership (NNNN/
HPEP). For the last 20 years, NNNN/HPEP has been organizing around the
issues of affordable housing, church, employment, economic development,
health, education, safety, and youth services. The NNNN/HPEP school orga-
nizer had worked for several years with local schools to organize and empower
parents as well as to facilitate adult development opportunities for them. The
trust parent leaders had in this school organizer made it easy to have them
understand the importance of the project and gain their support. Also critical to
the successful implementation of the surveys was the logistical, on-the-ground
support offered by the Chicago Public Schools Health Assistants. These posi-
tions are unique to schools in Greater Humboldt Park as part of a pilot project,
funded by the Otho S.A. Sprague Memorial Institute, to improve health ser-
vices to Chicago Public School students. The Health Assistants’ training was
supported by a grant from the Centers for Disease Control and Prevention (see
the Chicago Public Schools Asthma Management Project).
Although this was not a random survey of the city, results found that the
prevalence of asthma in these two schools was 25%. This is very similar
to the rate of 28% documented previously in the Sinai Survey. Smoking
occurred in one of every four homes, 75% of respondents found motorized
vehicles idling in their neighborhood on a regular basis, two of every three
respondents noted feeling unsafe in their community, 80% reported feelings
of nervousness or stress, and 60% of respondents prevented their children
from playing outside because of neighborhood violence.
The dissemination of these findings occurred at several levels. They were
included in another grant application that was subsequently funded by the
Robert Wood Johnson Foundation (see next section). They will be published
in an academic medical journal Gupta et al. 2010. Finally, findings have been
taken back to the community. They have been presented at community forums
 Humboldt Park 295

and distributed in the schools to parents. Currently, the GHPCW is working

with other community organizations to facilitate the formation of Wellness
Councils within the schools, which are mandated by the No Child Left Behind
Act of 2001. Their purpose is to oversee the implementation of the local school
wellness policy, as well as to develop and implement an annual evaluation.
Wellness Councils require representation of all school health stakeholders:
school principal, key teachers, community-based organizations, No Child Left
Behind Committee members, local school council member, bilingual commit-
tee members, school nurse, school counselor, food service representative, and
students. Wellness Councils will offer the sustained infrastructure needed to
effectively address the findings of the survey at the school level.

The Impact of Community Factors on Childhood Asthma Severity

Principal Investigator: Ruchi Gupta, MD (Children’s Memorial Hospital)
Using the methods and results of the “A Community-Academic Partnership
for Asthma Control in Humboldt Park,” Dr. Gupta applied for the Robert
Wood Johnson Foundation Faculty Scholar Award. She received this award
for the period from July 2009 to June 2012. She proposed to explore the
contributions of socio-environmental factors in asthma health disparities.
First, she will use an existing city-wide Chicago dataset to identify commu-
nity factors influencing childhood asthma severity and disparities. Second, a
survey will be developed and validated to assess the relevance in Humboldt
Park of significant factors determined to impact asthma severity in Chicago.
This survey will be administered to a minimum of 2000 residents. After
completion of the survey, focus groups will be conducted with approxi-
mately 30 local residents to explore which potential strategies and resources
are critical to address the community factors identified previously. Results
will be used to identify potential strategies for a future community-based
asthma intervention in Humboldt Park. She will partner with GHPCW and
the Respiratory Health Association of Metropolitan Chicago to achieve
these aims.

Chicago Public Schools Asthma Management Project

Recipient: Chicago Public Schools
At the same time as the GHPCW and Dr. Gupta were beginning their
survey of the Humboldt Park schools, the Chicago Public Schools received a
larger grant to better address asthma in their schools. Chicago Public Schools
was awarded the CDC “Improving Health and Educational Outcomes of
Young People” Cooperative Agreement grant. Lilliana De Santiago leads this
project and is also a member of the GHPCW Asthma Task Force. During
296 TRANSLATING DATA INTO COMMUNITY ACTION

this grant cycle (2008–2013), Chicago Public Schools will focus efforts on
creating district-wide sustainability through intensive asthma training for
school nurses and district level personnel. Training will also be provided
to all clinical personnel such as social workers, psychologists, occupational
therapists, speech therapists, and physical therapists. Online trainings, edu-
cational materials, and resources are currently being developed and dissemi-
nated to reach all areas of the city and to provide ongoing capacity building
to all school personnel and families of students with asthma.
A component of this project requires a more intensive approach to com-
munity outreach and education on asthma. Chicago Public Schools currently
is working with 12 schools in the Greater Humboldt Park Community to pro-
vide continuing asthma management education to school staff, parents, and
students with asthma. Data analysis on the prevalence of student’s asthma at
these schools is being closely monitored as well as student impact. As the
project expands it will move into other areas of the city with a high preva-
lence of asthma.
The overall goals of the project are to:

1. Increase capacity through district-wide professional development on

asthma management.
2. Increase capacity through education and outreach within targeted
schools in communities with a high burden of asthma.
3. Educate schools on asthma-friendly environmental practices that reduce
risk factors contributing to asthma episodes in students.

To date, the project has sponsored trainings for more than 200 school
psychologists, 65 school nurses, 165 physical instruction teachers, more than
300 school personnel in the Greater Humboldt Park schools, and more than
300 students in the Greater Humboldt Park schools. In addition, 750 Chicago
Public Schools and affiliated schools have received educational posters (e.g.,
Asthma First Aid, Help Your Child Breath Easier at School, and Please Help
Me Breathe I Need My Inhaler).

The Chicagoland Asthma Network Humboldt

Park Town Hall Meeting
The GHPCW organized and moderated two focus groups in the community to
better understand perceptions of asthma. These focus groups—one in English
and one in Spanish—were initiated by the Chicagoland Asthma Network
(CAN), which is a Task Force of the Chicago Asthma Consortium. The focus
groups were conducted in Humboldt Park during March 2009 with the goal
of learning about the community’s health-care experiences, communication
 Humboldt Park 297

with health-care providers, perspectives on asthma health-care disparities,

and how they would like to receive information. CAN used this information
to create a “Plan for Reducing Asthma in Chicago,” a manageable list of tasks
designed to reduce asthma disparities in the Chicagoland area.
When asked about barriers to obtaining good health care, participants first
discussed money and insurance. They felt their care was limited by their finan-
cial resources and that the insurance process was difficult to navigate and under-
stand. About half of participants were happy with the communication they had
with their doctor. The others were not and said this was related to the quality of
care they received. “They speak in ‘doctor talk’ that I can’t understand.” “They
only write prescriptions.” One person said, “I can’t speak with my doctor on the
phone; the receptionist will only take messages.” Some participants described
a lack of translation and how they felt this was disrespectful. Situations were
described where families waited a long time for rushed, incomplete doctor vis-
its. They expressed a need for more clinics and more specialized care, espe-
cially for asthma. Finally, they described transportation barriers—especially
for those with disabilities—and a lack of understanding of how their insurance
benefits may provide for transportation to medical appointments.
When asked where they would like to receive health information in addi-
tion to their doctor’s office, participants said in their home, the church, local
newspapers, fliers in the mail, and through the schools. They listed several
ways to reduce health-care disparities. These included reducing pollution,
pesticides, and cigarette smoking. The schools need to be involved addressing
environmental issues therein. Finally, the political officials and all leaders in
the community need to participate in the effort to reduce asthma disparities.

A Qualitative Exploration of Asthma Self-Management Beliefs

and Practices in Puerto Rican Families
Principal Investigator: Molly Martin, MD (Rush University Medical Center)
Dr. Molly Martin, an investigator with specific interests in Latino health,
asthma interventions, and community research, saw the Sinai Survey results on
their release. Intrigued with the incredibly high prevalence, morbidity, and lack
of interventions among Puerto Ricans, she met with the Sinai Study’s leader,
Dr. Steven Whitman, and a community leader in Humboldt Park to discuss pos-
sible research opportunities. The discussion resulted in two specific needs:

1. A need for asthma interventions specifically directed toward Puerto

Rican children; and
2. A need to train and employ community members as health educa-
tors to build community capacity for asthma management and health
education.
298 TRANSLATING DATA INTO COMMUNITY ACTION

A qualitative study (Martin et al., 2010) and behavioral randomized con-

trolled trial resulted directly from this discussion.
Several questions needed to be answered before an intervention could
be finalized. The first question was to determine what specific asthma self-
management behaviors were being performed by children, adolescents, and
their caregivers. This information was essential to know who the intervention
should target. Second, it was important to know the specific beliefs inform-
ing asthma self-management behaviors in Midwest Puerto Rican families.
Asthma beliefs had been described for Puerto Ricans in the Northeast but
never in the Midwest. An intervention would only be successful if it recog-
nized and worked within the belief structure of the participants. Therefore,
this structure needed to be described.
Dr. Martin presented the Sinai data and her literature review to the GHPCW
Asthma Task Force on August 16, 2007. They agreed on the study design and
questions and invited her to join the Task Force. Key informant interviews
were conducted first to inform the topics and frame the questions. The key
informants were recommended by local physicians and by GHPCW Asthma
Task Force members. They included a local general pediatrician in private
practice, a pediatrician from a mobile asthma van, two Puerto Rican par-
ent educators from a community-based organization that is a member of the
GHPCW (NNNN), and a Puerto Rican school organizer. Interviews were per-
formed in the informants’ language of choice (which was English) and were
audio-recorded.
The questions framed by the interviews were then used to describe the
focus group discussions. Three focus groups were conducted in the fall of
2007 in community schools. The first focus group consisted of Puerto Rican
parents of children with asthma (13 participants). The second group con-
tained Puerto Rican children with asthma in local elementary schools that
run from kindergarten through eighth grade (three participants). Both groups
were recruited by parent educators from NNNN. The third focus group of
Puerto Rican adolescents with asthma was organized by the Puerto Rican
Cultural Center (PRCC). The PRCC recruited nine participants who were
students in their alternative high school. One of the parent coordinators from
NNNN felt strongly that a separate elementary school in the neighborhood
should be approached because this specific school did not receive as many
programs as the other schools. Within this school, a local health-care system
(Erie Family Health Care) ran a small clinic. Nursing staff from the school
clinic contacted parents and recruited seven participants for a final elemen-
tary school group held in February 2008. All focus groups were conducted
by a Puerto Rican bilingual moderator who was affiliated with the PRCC,
with the exception of the final elementary school group that was moder-
ated by Dr. Martin. The parent focus group was conducted in both English
 Humboldt Park 299

and Spanish, whereas the other groups were in English. Groups were audio-
recorded, and participants were reimbursed $25 for their time.
Audio-recordings from the key informant interviews and focus groups
were professionally transcribed and translated into English when appropriate.
Transcriptions were analyzed using naturalistic inquiry methods that include
an initial data review for topical coding and a second analysis for exploring
relationships among the coding categories (Lincoln and Guba, 1985; Ryan
and Bernard, 2000).
The first theme that emerged was asthma self-management behaviors of
youth and caregivers. When participants were asked who actually managed
the children’s asthma and at what age, parents and informants agreed that
children were assuming the management responsibilities for their asthma at
younger ages than the parents ideally felt the children should. There were
reasons for this. Parents felt that children needed to be able to care for them-
selves in case a parent could not be there. However, parents also stated that
this was an unfair burden on young children. The adolescents discussed how
developing asthma skills at a young age could be a good thing because it
better prepared children for the future.
These parent and informant reports of behaviors were mirrored in the
responses of the children. Each elementary and high school participant
reported they typically self-administered their medication. The elementary
school children received more assistance from their parents. The high school
group described how their asthma had been better controlled when their par-
ents helped them. Several stated they wanted more parental help now because
their asthma was so uncontrolled. The key informants suggested that transi-
tions into adulthood in this community could be difficult because parents
often lacked resources to prepare their children to manage their asthma.
The second theme that emerged was related to beliefs influencing asthma
self-management behaviors. Participants had extensive knowledge of asthma
triggers. When attacks occurred, they preferred management techniques
involving manipulation of the environment or emotions. Relaxation was the
most discussed method for treatment of asthma attacks. Also discussed were
changes in temperature, going inside, and wearing additional clothing when
it was cold outside—all of which suggest attempts to repair imbalances.
Participants generally tried to avoid all asthma medications mostly because
of fears of overmedication and side effects.
Other themes emerged that helped to guide subsequent intervention design.
All participants voiced a need for more education on asthma. They not only
wanted education for the families and children with asthma but also for the
community in general and for the schools. The purpose of this education was so
that people without asthma could help create an asthma-friendly environment
by reducing triggers, reducing stigmas, and providing emergency assistance
300 TRANSLATING DATA INTO COMMUNITY ACTION

when needed. Repeatedly mentioned was a specific need for education regard-
ing cigarette smoke. Conversely, key informants and focus group participants
identified multiple areas of strength and support in their community. The
greatest assets identified by these groups were family and the schools.
The results of this qualitative study were presented to the GHPCW and
at grand rounds for several local hospitals. The data are in publication and
were incorporated into a grant to the National Institutes of Health which was
subsequently funded. This study, Project CURA, is described next.

Project CURA

La Comunidad Unida Retando el Asma/The Community

United to Challenge Asthma
Principal Investigator: Molly Martin, MD (Rush University Medical Center)
Project CURA began in the spring of 2009 and involves collaborations
between Rush University Medical Center, PRCC, NNNN, the GHPCW,
and the SUHI. Funding for this study comes from NIH. Project CURA is a
behavioral randomized controlled trial of Puerto Rican children with asthma
that tests two interventions to improve asthma self-management. Results of
the intervention are not available because the study just began, but the fol-
lowing is a description of the study design.
The study contains two cohorts: one cohort of 50 elementary school chil-
dren (grades K–8) and one cohort of 50 high school children. Half of the
participants in each cohort will receive a community health worker (CHW)
intervention, whereas half receive mailed information. A control group will
receive written asthma education (but no individualized self-management
training) on the same schedule as the CHW group. Primary outcomes
include asthma medication adherence and home asthma triggers. Outcomes
will be assessed in all participants pre-randomization, immediately after the
4-month active intervention phase, and 8 months after the active intervention
phase completion to determine sustainability (see Fig. 12-2).
To ensure community representation in the project and an appropriate level
of sensitivity to community values and beliefs, a community advisory board
was assembled in collaboration with the community partners. Board mem-
bers include representatives from each of the community partners (PRCC,
NNNN, and GHPCW), a Puerto Rican adolescent physician, a pediatrician
with asthma expertise, a representative of the Chicago Public Schools, and
three Puerto Rican parents of children with asthma. The community advisory
board facilitates planning of the project, community education and outreach,
data interpretation, and proper dissemination of results. Board members meet
in person every 3 months to discuss the progress of the study.
 Humboldt Park 301

CHW CHW CHW CHW

Visit 1 Visit 2 Visit 3 Visit 4
Randomization

CHW Arm
Recruitment
Mailing Arm

Mailing 1 Mailing 2 Mailing 3 Mailing 4

1st Data
4 month 2nd Data 8 month 3rd Data
Collection
Active Intervention Phase Collection Maintenance Phase Collection
and Skin Testing

Figure 12-2 The Community United to Challenge Asthma (Project CURA) Study
Design

To participate in the study, participants must be of self-identified Puerto Rican

heritage, in school, and between ages 5 and 18 years; have persistent asthma;
and have poorly controlled asthma. The CHW group will receive a home visit
by a trained asthma CHW each month for 4 months. At the CHW home visits,
the CHW will spend 1 to 2 hours with the family. The CHW will educate them
on the core curriculum, which covers general asthma facts, controller medica-
tions, inhalers and spacers, symptom recognition, asthma triggers, and access
to care. The CHW will tailor the education to the specific needs of each family
and create behavior change plans that incorporate self-management techniques
such as self-monitoring, environmental rearrangement, enlisting social support,
and problem solving. The families in the mailings group will receive written
materials in English and Spanish by mail once a month for 4 months. These
materials will address the same core curriculum as the CHW home visits.
One of the project goals is to build community capacity for asthma. To
achieve this goal, Project CURA began by training Puerto Rican asthma
CHWs Advertisements for the training began in the summer of 2009 in a
local newspaper and through the community partner list serves. Two initial
training sessions were planned (12–15 hours each). These trainings were con-
ducted by an experienced asthma educator from the Sinai Asthma Education
Training Institute. The curriculum included information on asthma patho-
physiology, symptoms, triggers, and environmental control, management, and
medications. This training addressed how to approach families and keys to
successful home visiting. The trainings also included a 1.5-hour lecture from
Safer Pest Control, which is an organization that provides training on inte-
grated pest management. Fifteen people attended some of either the week-
day or weekend trainings, and 13 completed the training. Four people were
selected from those who completed the initial training for subsequent train-
ing. Two would be CHWs on Project CURA, and two would be back-up
CHWs. Another 12 hours of training were then conducted on asthma medica-
tions again, self-management skills, behavior change plans, and the research
302 TRANSLATING DATA INTO COMMUNITY ACTION

protocol. CHWs were evaluated for competency to perform the intervention at

the end of this training using a standardized role play. The final two Project
CURA CHWs then shadowed more experienced asthma CHWs from SUHI.
The two primary outcomes are medication adherence and home triggers.
These are measured at baseline, immediately post-intervention (month 5),
and after a maintenance phase (month 12). Other outcomes are collected as
potential mediators of change. These are described in Table 12-3.
One of the main goals of this project is to build the community capacity
in the area of health. This process is ongoing, but accomplishments include
the training of the CHWs and the hiring of three research assistants. The
research assistants are all Puerto Rican and have connections to the target
community. The community partners participated fully in their selection.

TABLE 12-3 Data Collected in the Community United to Challenge Asthma

(Project CURA) Study
1. Screener: Asthma control and severity
2. Skin test: Dust mite mix, cockroach mix, mold mix, cat, dog, mouse
3. Home data collection #1
a. Demographics of child and caregiver: age, sex, race/ethnicity, place of
birth, time lived in mainland US, education level, school lunch, marital
status, home ownership, caregiver language acculturation
b. Access to care: Child insurance and location for medical care
c. Home triggers:
i. Self-report of behaviors, smoking, animals, pests
ii. Home inspection for pests, smoke, mold, dust, cleaning projects
iii. Dust collection for dust mite, cockroach, cat, dog
iv. Child saliva collection for cotinine
d. Medicines
i. Self-report and visual inspection
ii. Medication administration observation
iii. Adherence to inhaled corticosteroid over 3 weeks using Doser or counter
e. Asthma symptoms and control
f. Emergency care use: Hospital, emergency, urgent care, oral steroid bursts
g. School absences
h. Self-Efficacy: Caregiver and child
i. Health Beliefs: Caregiver
j. Life Stress: Caregiver and child
k. Social Support: Caregiver and child
l. Depression: Caregiver and high school participants
4. Telephone follow-up: every month except home visit months
a. Emergency care use: Hospital, emergency, urgent care, oral steroid bursts
b. School absences
5. Home data collection #2 (Month 5)
a. Same as #1 except
i. Remove demographics
ii. Add acculturation of caregiver and child, violence/trauma for caregiver
and high school participants
6. Home data collection #3 (Month 12)
a. Same as #1 except remove demographics
 Humboldt Park 303

The education and support provided to the research assistants and CHWs
during the implementation of Project CURA will allow them better oppor-
tunities at the completion of the study. Currently, recruitment for the study
involves all of the neighborhood schools, clinical sites, and service agencies,
which helps to spread the word about asthma. Finally, at the completion of
the study, results will be presented to all study partners and local agencies.
They will be printed in the local Puerto Rican newspaper La Voz, which has
a large distribution list. If indicated, discussions with community members
will be conducted in open forums. Finally, the results will be used to gener-
ate more funding opportunities and programs for the community.

Lessons Learned in Humboldt Park

The asthma experience in Humboldt Park serves as a model of Community-

Based Participatory Research. The GHPCW arose organically with the assis-
tance of a community development program. The GHPCW Asthma Task
Force was created as a direct result of the needs identified by the Sinai Study
data. Because the GHPCW takes a collaborative approach in all that it does, it
builds off of the already existing strong community assets, social capital, and
community cohesion, and it takes a shared collective approach to the com-
munity’s health and wellness. By leveraging these resources and assets, its
efficacy as a health coalition becomes far greater than the sum of its parts.
The GHPCW wants to ensure that all research conducted in Greater
Humboldt Park addresses the community’s priorities, ensures that research
does not harm community residents, offers job opportunities to residents, sup-
ports the local economy, and ensures proportional distribution of resources.
As a result, the GHPCW has managed to position itself as the gatekeeper for
health-related research in the community. Investigators wishing to work in
Greater Humboldt Park must approach the GHPCW as collaborators on proj-
ects. This ensures an early understanding about how research should be con-
ducted in and with the community. Academic institutions can attempt research
in this community without going through the GHPCW, but recruitment and
data collection would be very difficult without support from the community.
Besides ensuring the research conducted within its community is ben-
eficial to and involves its community, the GHPCW serves another role—
research coordinator. This role emerged naturally as multiple investigators
from competing academic centers approached the community to conduct
asthma research. Often in research, several separate teams work on the
same research question. This can be beneficial in terms of replicability,
but it can also be a waste of resources and a burden on participants. The
GHPCW Asthma Task Force succeeded in bringing multiple competing
researchers to the same table, where they planned research projects that were
304 TRANSLATING DATA INTO COMMUNITY ACTION

complementary and slightly overlapping but addressed different core areas

of asthma disparities. All investigators now benefit from their own work and
the work of the others. The community reaps the most benefit by receiv-
ing high-quality useful information, services, and opportunities from a wide
variety of sources. The organization of the GHPCW has ensured that asthma
research projects inform each other, complement each other, and build off of
each other, making the most effective and efficient products possible.
Can this model of asthma research be replicated in other communities?
The environment of Humboldt Park may be unique in several aspects. The
community is very diverse in terms of race and ethnicity. The community
income level is low, it is considered medically underserved, and it lacks suf-
ficient health professionals. However, the community level of organization is
very high. Leaders have been organizing around political issues for decades,
resulting in the formation of multiple strong community-based organizations.
These trusted organizations are linked by political and social justice ideol-
ogies. The establishment of the GHPCW was a natural extension of these
organizations into the area of health and wellness. The subsequent success of
research projects within this organizational structure is not surprising, despite
the fact that community residents are not familiar with the research process.
Trust in the community organizations is strong enough to overcome barriers
of fear, economics, and discrimination. Another factor in the success of the
research to date has been the high prevalence and morbidity of asthma within
the community, and the community’s awareness of this. Organizations and
individuals, motivated by data from the Sinai Survey and by their own experi-
ences with asthma, were very supportive of research on this issue.
Communities aiming to replicate this model should consider the importance
of a strong community base. This is essential for building trust in populations
that are unfamiliar with the research process and distrustful of academic insti-
tutions. Research should focus on disease areas that are identified by the com-
munity as being high-priority. Finally, community leaders and members should
be involved in all stages of the research process. Their voices need to be heard,
their ideas implemented, and their efforts compensated appropriately.
The GHPCW has established a research model that is not only successful
but also sustainable. Leaders and investigators from all over Chicago are rec-
ognizing the strength of this community and this model. The current asthma
projects are only the beginning. Future work is already being planned to
potentially conduct more testing of asthma interventions, interventions aimed
at co-morbid asthma and obesity, violence prevention and asthma, and the
genetics of asthma. The structure of the GHPCW allows it to work with mul-
tiple partners and to implement projects on its own as well.
Asthma for children in Humboldt Park will improve. When that happens,
it will be a result of the work done by many investigators. More importantly,
 Humboldt Park 305

it will also be the result of the work done by the residents themselves and
their leaders.

Go to the people, live with them, love them, learn from them, work with them, start
with what they have, build on what they know, and in the end when the work is
done the people will say , we have done it ourselves.—Lao Tzu

Acknowledgments

Significant contributions were made to this chapter by Maureen Damitz at

the Respiratory Health Association of Metropolitan Chicago, Ruchi Gupta at
Children’s Memorial Hospital, Lilliana De Santiago from the Chicago Public
Schools, and Stephen Samuelson, Joel Massel, and Amy Miller from the
Chicago Asthma Consortium. Funding for the Community United to Challenge
Asthma Study comes from National Institutes of Health. Specifically, 1R21
HL087769-01A1 from the National Heart Lung and Blood Institute, and
1R21HL087769-01A1 from the American Recovery and Reinvestment Act.

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Section 4

Implications
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13
COMMUNITY-BASED HEALTH
INTERVENTIONS: PAST, PRESENT,
AND FUTURE

Leah H. Ansell

Introduction

Background

A community-based health intervention is theoretically an effective strat-

egy to combat disease because it incorporates factors beyond the individual
that contribute to disease manifestation. Unlike more reductionist research
designs that focus on a single risk factor, this holistic view of disease encom-
passes the complex and often intangible disease determinants. The theoreti-
cal appeal of this study design, however, has not translated as well to real-life
circumstances. Years of findings from studies using various elements of a
community design have demonstrated inconsistent outcomes, with few suc-
cesses and many failures. Despite these sobering results, many researchers
remain convinced that a thoroughly planned and well-executed intervention
truly based in the community is the best way to proceed to reign in the dam-
age being done by many diseases.
A critical analysis of past community-based interventions is integral to
the design of more effective interventions in the future. This is the purpose
of this chapter. A number of community-based initiatives targeting different
diseases and risk factors have been selected for this analysis, although it is not
intended to be a complete review of all community-based health campaigns.
Included are the five best-known community interventions for cardiovascular

309
310 IMPLICATIONS

disease (CVD) as well as studies targeting HIV, obesity, smoking, and diabe-
tes. These studies were selected for two major reasons. First, they were well-
planned and executed and had sound study designs and analyses. Second
was the extent and manner in which they engaged the community. The CVD
studies will be a major focus of this chapter as they are the most prominent
and comprehensive community-based prevention trials to date.
The chapter begins with a discussion of the definition of community inter-
ventions and how the community is conceptualized in the designs of various
studies. Next is a comprehensive analysis of the rationale for community-based
interventions. The following section offers a brief summary of the two pioneer
CVD studies of the 1970s that served as the impetus for the three major tri-
als that were carried out in the United States in the 1980s. These latter trials
are summarized and explored in greater depth. What were the strengths and
weaknesses of the interventions? To what extent was the community engaged?
The following section is a review of other community-oriented trials in areas
such as HIV, smoking, diabetes, and obesity. The chapter concludes by delin-
eating the elements of community campaigns that seem to enhance interven-
tion impact and facilitate sustainability of change. Finally, this information is
assembled within the context of the current theories regarding community-
based participatory research, with the hope that this information will allow
interventionists to move community projects forward more effectively.

What Is a Community-Based Health Intervention?

Community-based health interventions are defined as “experiment[s] in which

the unit of allocation to receive a preventive or therapeutic regimen is an
entire community” (Last et al., 1995, pg. 34). Community-based intervention
campaigns are designed to influence the knowledge, attitudes, and behaviors
of a defined population by employing multiple interventions that integrate
the organic social, cultural, and environmental dynamics that contribute to
health (Wilcox and Knapp, 2000). A central tenet of community interven-
tions is to imbed programs into the local, state, and national health promo-
tion infrastructure to enhance sustainability (Elder et al., 1993; Mittelmark
et al., 1993; Verheijden and Kok, 2005).
There are many terms used in the literature to describe community-based
interventions, and the vocabulary can be confusing and problematic. In this
chapter, various terms will be used interchangeably to describe community-
based interventions, including “community-oriented campaigns/interven-
tions/initiatives,” “community-based campaigns/interventions/initiatives,” and
“community interventions.” The emphasis in this chapter is not the semantics
but rather distinguishing interventions from one another in regard to the nature
of the intervention and the extent to which the community was engaged.
 Community-Based Health Interventions 311

Thus, with the growing number of community-based interventions in

the past 40 years, it is important to highlight the varying interpretations
of what “community-based” signifies in a study’s design. The five major
CVD campaigns discussed in the upcoming sections employed multifac-
eted interventions in an entire community, and outcomes were measured
at the community level. A key distinction is that such interventions were
directed at an entire community rather than only those who were high-
risk. Alternatively, many of the more recent community-oriented demon-
stration projects tended to focus on a single behavioral goal or disease or
to deliver the intervention to specified population subgroups rather than the
entire community. Although these latter interventions use elements of the
community in their design (such as support groups, local health awareness
campaigns, and the construction of parks or gyms to facilitate the adoption
of healthy behaviors), they are not truly based in the community. In this
sense, they do not address prevention in the same manner as the programs
targeting entire communities.

Rationale of Community-Based Health Interventions

As was briefly discussed in the preceding section, community-based health

interventions are considered to be a promising strategy to quell the growing
prevalence of chronic disease in certain populations. What are the factors and
observations that contribute to this theory? A major component of the rationale
is that health behaviors and outcomes are the result of a complex amalgam-
ation of factors. Nancy Krieger (1990, 1994, 2001, 2007) and others contend
that disease may best be viewed within the context of one’s biological make-up,
individual behavior, environmental context, and broader societal forces such
as discrimination, poverty, and disparity in the health-care system (Williams,
1990; Schooler et al., 1997; Jack et al., 1999; Smedley, Stitch, and Nelso, 2003;
Mechanic, 2005; Williams and Jackson, 2005; Israel et al., 2006; Shaya, Gu,
and Saunders, 2006). Although community-wide interventions cannot address
the physiological processes of disease, they can influence the environmental,
social, and behavioral patterns that contribute to the manifestation of disease.
Below is a summary of the chief reasons why community-oriented health cam-
paigns are considered to be a promising mechanism of health intervention:

• Health behavior is influenced by the familial, social, and cultural envi-

ronment in which one lives (Aiken and Mott, 1970; Warren, 1972;
McLeroy et al., 1988; Andersson, 2003).
• The diffusion of health information is enhanced when all sectors of
the community are involved (Farquhar, 1978; Shea and Basch, Part I,
1990).
312 IMPLICATIONS

• Community interventions are a cost-effective and feasible strategy to

disseminate health information to a large, diverse population (Farquhar,
1978; Hancock et al., 1997).
• Community interventions enable individuals to learn practical methods
for modifying behaviors within the context of the stresses of their every-
day lives (Farquhar, 1978).
• Targeting an entire community rather than a small number of high-risk
individuals can have a greater impact on reducing a disease’s prevalence
on the population level (Rose, 1981, 1992).
• Results of community interventions can be better generalized to a diverse
population than those of more controlled clinical trials (Farquhar, 1978;
Sorensen et al., 1998; Glasgow, Vogt, and Boles, 1999).
• Primary prevention efforts are essential to diminishing the rate at which
new individuals become high-risk (Smedley and Syme, 2001; Syme,
2004).

These observations offer compelling reasons to employ community-oriented

research projects as an intervention strategy to combat disease.

The First and Second Generation CVD Community-Based

Intervention Trials

The Major CVD Trials of the 1970s and 1980s

The first generation of community-based health promotion campaigns were

conceptualized in the 1960s with the intention to reduce the growing rates
of CVD at the population level. The pervasiveness of CVD in the United
States, the many etiologic risk factors, and their well-established relationship
to individual and social behaviors made CVD an ideal focus for these first
community-based interventions (Rose, 1981; Lefebvre, Harden, and Zompa,
1988; Shea and Basch, Part I, 1990; Parker and Assaf, 2005). Based in part
on evidence presented by prominent epidemiologist Geoffrey Rose (1992)
as well as concepts from social ecology theory (Bandura, 1969 and 1971;
Kotler and Zaltman, 1971), it was hypothesized that by targeting the entire
community, widespread sustainable health changes could be achieved.
The very first programs of the 1960s followed almost exclusively a med-
ical framework, which emphasized targeting high-risk individuals only
(Blackburn, 1983). The strategy evolved during the 1970s and 1980s, in part
because of the seminal Framingham Heart Study (initiated in 1948) that
presented epidemiological surveillance data demonstrating that individual
behaviors were associated with coronary heart disease (Dawler, 1980). The
 Community-Based Health Interventions 313

new approach shifted the target of such programs from high-risk individuals
to entire communities, with the strategy of modifying both individual behav-
iors and also the social environment in which behaviors develop.
The two major pioneer community-based CVD campaigns were conducted
in the early 1970s in North Karelia, Finland, and three small communi-
ties near Stanford University in California. Both studies employed multi-
faceted interventions to address the behavioral and social risk factors for
CVD and were successful in reducing the CVD burden in the intervention
communities.
The North Karelia Project (NKP) delivered an intervention to citizens in
North Karelia whose residents were, on average, of low SES and had one of
the highest rates of CVD mortality in the world. This region was compared
to a matched reference community. The campaign was initiated at the request
of community members who were concerned about the high rates of CVD in
their province. Central campaign features included a mass media education
program, risk factor testing, tracking and follow-up, as well as integrating
the intervention community programs with primary medical care (Salonen,
Puska, and Mustaniemi, 1978; Tuomilehto et al., 1980; Puska et al., 1998; N.
Record et al., 2000; Parker and Assaf, 2005). Significant sustained reduc-
tions were found in smoking prevalence, cholesterol levels, blood pressure,
and CVD morbidity and mortality rates as compared to a matched reference
community (Puska et al., 1983; Shea and Basch, Part II, 1990; Schooler et
al., 1997; Vartiainen et al., 2000).
The Stanford Three-Community Project (STCP), which was conceptu-
alized and implemented concurrently with the NKP, also had a significant
impact on intervention community members’ health-related behavior. The
aims and interventions were similar to those of the NKP, with the exception
of primary medical care integration, which was not a focus of the STCP
(Farquhar et al., 1977). Instead, the major thrust was a rigorous mass media
campaign, reaching the entire community through radio, television, bill-
boards, and mail. The STCP compared two intervention communities (both
of which included the media campaign and one that additionally received
individual and group counseling) to a reference community, which received
neither intervention. Significant favorable changes were observed for smok-
ing rates, blood pressure, cholesterol, CVD knowledge, saturated fat intake,
and CVD risk (Farquhar et al., 1977; Fortmann et al., 1981; Shea and Basch,
Part II, 1990).
The two projects demonstrated that natural entities within a community,
including health professionals, political leaders, local institutions, and citi-
zens, could work together to shift the trajectory of unhealthy trends. These
studies provided the impetus and basic framework for the three other major
community-based CVD campaigns that were conducted in the United States
314 IMPLICATIONS

in the early 1980s. The Stanford Five-City Project (SFCP), the Pawtucket
Healthy Heart Program (PHHP), and the Minnesota Healthy Heart Program
(MHHP), all of which were funded by the National Heart, Lung, and Blood
Institute, incorporated many strategies from the first generation of studies
(NKP and STCP) to test their effectiveness within larger, diverse U.S. popu-
lations. These are described below.

Theoretical Basis, Methodology, and Design

The SFCP, PHHP, and MHHP methods, design, and results are summarized
briefly below, as they have been described extensively elsewhere (Carlaw
et al., 1984; Farquhar et al., 1985; Fortmann et al., 1986; Assaf et al., 1987;
Carleton et al., 1987; Lasater, Lefebvre, and Carleton, 1988; Luepker et al.,
1994; Carleton et al., 1995; Murray, 1995; Luepker et al., 1996; Winkleby,
1996). The studies used concepts from social ecology theory to guide pro-
gram development and implementation. This broad theory integrates several
multidisciplinary perspectives to address the interactive biological, individ-
ual, and environmental factors that influence health. It is beyond the scope
of this chapter to review these theoretical foundations. Several references are
listed below for those seeking more extensive background (Bandura, 1969,
1971; Kotler and Zaltman, 1971; Lefebvre et al., 1987; Flora and Farquhar,
1988; Shea and Basch, Part I, 1990).
The studies shared many organizational similarities (Table 13-1). Each
utilized a quasi-experimental design because randomized city selection
was precluded by constraints concerning independent media outlets and the
need for cities to share similar demographic characteristics. Outcomes were
measured using data from a longitudinal cohort study, independent samples,
and epidemiologic surveillance of CVD morbidity and mortality.
The studies also shared similar objectives. Each primarily sought to
achieve a lasting reduction in the prevalence of CVD health behavioral risk
factors and a significant decline in CVD morbidity and mortality. The inter-
ventions addressed many of the risk factors known to contribute to CVD,
including poor nutrition, sedentary lifestyle, cigarette smoking, elevated
serum cholesterol levels, and hypertension. All involved the following health
promotion intervention strategies to varying degrees: education through mass
media (print and/or electronic media), groups, schools, worksites, and med-
ical settings; weight loss or smoking contests, and restaurant and grocery
store menu/shelf labeling (Lefebvre, Harden, and Zompa, 1988; Hunt et al.,
1990; Shea and Basch, Part II, 1990).
The studies differed, however, in the emphasis of intervention programs,
process measures, and maintenance efforts. In regard to program empha-
sis, the SFCP intervention utilized electronic and print media to deliver the
TABLE 13-1 Comparison of the Study Characteristics of the Stanford Five City Project, the Pawtucket Healthy Heart Program, and
the Minnesota Healthy Heart Program

Study Characteristic Trial

Stanford Five City Project a Pawtucket Healthy Heart Programb Minnesota Healthy Heart Programc

Participant Random selection of eligible Random selection of eligible Random selection of eligible
selection participants (12–74 years participants (18–64 years old) participants (25–74 years old)
old who live in household through city directory of households through census-identified blocks.
for at least 6 months and city street lists in comparison city Further randomization included
of year) through city the selection of geographically
directories of households adjacent groups of five
households
Location Northern California; New England; Intervention: Pawtucket, Upper Midwest; Intervention:
Intervention: Salinas and Rhode Island; Reference: unnamed Mankato, Minnesota;
Monterey; Reference: San New England community Fargo-Moorhead, North Dakota/
Luis Obispo, Modesto, Minnesota; Bloomington,
Santa Maria Minnesota; Reference: Winona,
Minnesota; Sioux Falls, South
Dakota; Roseville, Minnesota
Community type Small towns Mid-sized blue-collar towns Isolated towns, mid-sized cities,
and suburban areas
Population Salinas: 80,000; Monterey: Pawtucket: 70,000; Reference: 100,000 Isolated towns: 30,000; Suburban
45,000; San Luis Obispo: areas: 80,000; Cities: 110,000
34,000; Modesto: 130,000;
Santa Maria: 40,000
Racial/ethnic makeup Intervention: 88% non- Pawtucket: 1.4% Black; Reference: 2.7% Not Available
Hispanic White; Reference: Black
80% non-Hispanic White
Education level Intervention: 11.8–14 years; Pawtucket: 50% had graduated from Intervention: 64% had graduated
Reference: 12.5–14 years high school; Reference: 38% from high school; Reference:
53%
(Continued)
TABLE 13-1 (Continued)

Study Characteristic Trial

Stanford Five City Project a Pawtucket Healthy Heart Programb Minnesota Healthy Heart Programc

Average income Intervention: 43% of families Pawtucket: $16,000; Reference: $14,000 Not Available
made <$20,000/year;
Reference: 51.4%
Years of study 1978–1992 1980–1993 1980–1991
Years of intervention 1980–1986 1982–1990 1981–1989

Sources: aFarquhar et al., 1985; Fortmann, Taylor, and Winkleby, 1993; Winkleby, Feldman, and Murray, 1997; Fortmann and Varady, 2000.
b
Weisbrod et al., 1991; Carleton et al., 1995.
c
Lefebvre et al., 1987; Luepker et al., 1994; Weisbrod, Pirie, and Bracht, 1992.
 Community-Based Health Interventions 317

majority of the campaign’s educational messages. These strategies served a

smaller role in PHHP and MHHP; the media were used instead to increase
awareness about CVD and provide information about available programs
and opportunities for involvement (Mittelmark et al., 1986). Unlike the
SFCP, systematic risk factor screening programs, referrals for medical care,
and individual counseling were central features of the PHHP and MHHP
(Lasater, Lefebvre, and Carleton, 1988). The PHHP was distinctive in that
churches served as a major modality of campaign information and programs.
Additionally, although all three campaigns used lay volunteers to deliver seg-
ments of the intervention, this was a major emphasis of the PHHP. Unique
features of the MHHP included risk-factor tracking and participant follow-up.
The MHHP also devoted the majority of their efforts to face-to-face interac-
tion (Schooler et al., 1997).
Process measures were organized, monitored, and evaluated for each study
to ensure the fidelity of the interventions and that the programs were deliv-
ered appropriately (Wolff, 2001). Each study had distinct methods to evalu-
ate the effectiveness and reach of their programs. This ongoing assessment
provided feedback to the study investigators to modify a specific program’s
strategy or delivery when it was needed. Pirie and colleagues (1994) outlined
a typology of several process measures employed in community-oriented
health promotion interventions. This schema has been adapted to pertain to
the specific objectives of this chapter.

• Formative evaluation: assessing the specific characteristics and needs

of the target population in the design stages of the study to ensure that
program messages are appropriate, understandable, and applicable
• Quality assurance: monitoring program implementation to ensure that
the programs are meeting their intended purpose and to examine study
participants’ satisfaction
• Assessment of delivered intervention dose: quantifying the number
of programs or program messages disseminated in the intervention
community
• Assessment of received intervention dose: quantifying the number of
programs or program messages actually received by the target and com-
parison communities; this includes programs or messages coming from
sources unaffiliated with the campaign
• Impact of intervention subcomponent: assessing whether subsets of the
multifaceted interventions are having their anticipated impact and how
they are contributing to the overall program results
• Community impact: determining how community organizational units
perceived the intervention impact on the community
318 IMPLICATIONS

Table 13-2, also adapted from Pirie et al., 1994, presents a summary of
some of the process measures used by the three studies as they fit into the
categories listed above.
Investigators of all three campaigns recognized the importance of inter-
vention monitoring systems to evaluate the progress and reach of the indi-
vidual programs. However, because community-based programs followed a
synergistic approach, it was extremely difficult to determine the contribution
of individual programs to the overall results (Mittelmark et al., 1993). As a
result, investigators relied on various methods to ensure the programs were
serving their intended purpose. Formative evaluation was integral to the
design of the campaigns’ interventions. The PHHP developed the most elab-
orate participant-tracking system, which enabled investigators to identify the
strengths and weaknesses of programs and to adapt and rapidly implement
necessary changes. The SFCP and the MHHP used more informal methods
to ascertain this information.

Outcome Measure Results

Throughout and after the completion of the studies, substantial literature
emerged deconstructing the successes and failures of the CVD trials. By
examining many of these articles, it became evident that investigators often
arrived at remarkably different conclusions, although virtually all of the lit-
erature post-study completion concluded that no substantial health improve-
ments had occurred. Much of the discrepancy between investigators’ analyses
stems from the data used for evaluation. Data were collected at several inter-
vals during and after each study. Additionally, data were collected for both
longitudinal cohorts and cross-sectional samples. Researchers, thus, had sev-
eral options of data sets from which to choose. The results of a paper that
used data comparing the “peak intervention” to baseline, for example, may
have differed greatly from a paper that compared “post-intervention” data to
the baseline. As emphasized earlier, one of the principal goals of commu-
nity-based interventions is to achieve sustainability of the programs and, as
a result, longevity of behavioral and health change. Thus, the outcomes of
most interest are those that were evaluated after the interventions had ended.
These findings are elucidated in the subsequent paragraphs and tables.
The major goals of the SFCP were to achieve a lasting reduction in the
prevalence of CVD risk factors and a significant decline in CVD morbidity
and mortality (Winkleby et al., 1996). However, the results of the study indi-
cated that despite the multifaceted interventions employed, the intervention
showed limited, variable, and often insignificant impact in engendering these
changes. Table 13-3 presents these.
TABLE 13-2 Comparison of the SFCP, PHHP, and PHHP Evaluation Methods

Process Measure Trial

Stanford Five City Projecta Pawtucket Healthy Heart Minnesota Healthy Heart
Programb Programc
Formative Evaluation Focus groups, interviews, Focus groups, interviews with community Focus groups, interviews, pilot
surveys, pilot tests, in-depth agencies, analysis of baseline risk factor tests, community analysis to
analysis of baseline risk data assess resources
factor data
Quality Assurance Informal system of interviews Follow-up telephone surveys of Exit interviews, follow-up phone
with program participants participants calls, telephone surveys of
and community members participants and those who
declined to participate
Assessment of Delivered Tabulated the number of Database tracked participants’ contacts Tabulated attendance at
Dose face-to-face and media through contact cards to determine program events and audience
messages delivered, media the number and nature of participants, characteristics, evaluation
ratings for television local newspaper content tracking for studies of randomly selected
programs, content analysis health-related articles population samples,
of newspapers in treatment Community Education
and reference cities, Monitoring System
Community Education
Monitoring System
Assessment of Received Telephone surveys of entire Telephone surveys to assess program Telephone surveys of entire
Dose community to assess and message awareness, newspaper community to assess program
program and message content analysis for health related and message awareness
awareness, content articles and cigarette advertisements,
analysis of newspapers in
intervention and reference
cities

(Continued)
TABLE 13-2 (Continued)

Process Measure Trial

a
Stanford Five City Project Pawtucket Healthy Heart Minnesota Healthy Heart
Programb Programc
interviews with health agencies to
document secular trends for CVD
interventions carried out by other
agencies
Impact of Intervention Experimental and Experimental and quasi-experimental Experimental and quasi
Sub-component quasi-experimental studies studies of individual programs experimental studies of
of individual programs individual programs
Community Impact Institutional changes were Surveys of physicians, assessment Telephone surveys of providers
evaluated through interviews of changes of food availability in of health promotion programs
with key individuals supermarkets and restaurants, in communities and worksites,
regarding alterations in newspaper content analysis restaurant managers, and
organization structure and physicians
policies

Sources: aFlora et al., 1993; Fortmann et al., 1993; Schooler, Flora, and Farquhar, 1993; Schooler, Sundar, and Flora, 1996.
b
Assaf et al., 1987; Lefebvre et al., 1987; Lefebvre et al., 1988; Carleton et al., 1995; Carleton, Lasater, and Assaf, 1995.
c
Shea and Basch, Part II.
TABLE 13-3 The Stanford Five City Project Major Objectives and Results

Objectives Results

Significant decline in CVD morbidity and mortality rates declined

CVD morbidity and uniformly; three-year follow-up revealed that CVD
mortality rates morbidity and mortality rates were maintained
or improved in treatment cities while they
leveled out or rebounded in reference cities.
However, differences were not significant except
in coronary heart disease risk for women in
intervention cities
Decline in Body Mass BMI rose uniformly. The increase was significantly
Index (BMI) smaller in the treatment communities in the
cross-sectional surveys, but not in the cohort.
Three-year follow-up revealed no significant
between-city difference among women and a
significant difference in men, favoring control
cities
2% decline in relative Weight increased uniformly; no significant
weight between-city differences
Increase in physical No significant between-city difference
activity
9% decrease in smoking Significant declines in intervention cities in the
frequency cohort by study’s end; none noted in the
independent samples. Three-year follow-up
revealed that rates leveled or increased in
treatment cities, while declines in control cities
continued. Between-city differences were not
significant
Decline in alcohol Alcohol consumption declined uniformly; rates were
consumption not maintained at three-year follow-up
Increased CVD Treatment cities had significantly greater net
knowledge improvements in CVD knowledge as compared
to reference cities in the independent samples.
At three-year follow-up, CVD knowledge had
improved uniformly, but the improvements were
significantly greater in the reference cities
4 % decline in Significant intervention improvements in the
cholesterol levels cohort up to the third survey; effect dissipated
by the fourth survey. No significant between-city
difference in cholesterol levels at three-year
follow-up
7% reduction in blood Blood pressure declined uniformly; significant
pressure (BP) difference noted only in cohort. Three-year
follow-up revealed that improvements were
maintained in the intervention cities only.
Significant between-city differences were
observed among men only

Sources: Farquhar et al., 1990; Fortmann et al., 1990; Taylor et al., 1991; Fortmann, Taylor, and
Jatulis, 1993; Young et al., 1993; Winkelby, 1994; Winkelby et al., 1996; Young et al., 1996;
Parker and Assaf, 2005; Verheijden and Kok, 2005.

321
322 IMPLICATIONS

Results from the 3-year follow-up revealed that there were, for the most
part, no significant differences in CVD morbidity and mortality between
treatment and reference communities (Winkleby et al., 1996). Although
there were declines in sodium intake, smoking frequency, alcohol con-
sumption, cholesterol levels, and blood pressure (BP) in the intervention
communities, these trends were also evident in the reference communi-
ties, and the between-city differences were not significant. During the
intervention, treatment cities in the independent samples had significantly
greater net improvements in CVD knowledge than control cities. After
the follow-up, however, the improvements shifted and were significantly
greater in the reference cities. Maintained significant differences were
observed in a few cases, such as a decline in BP among men in treat-
ment cities. School-based interventions, although not depicted in the table,
had notable success at 1-year follow-up. Among the students in interven-
tion classes, significant changes were observed in healthy behaviors and
health knowledge (Fortmann et al., 1993; Mittelmark et al., 1993). Like
the SFCP, the PHHP aimed to reduce the prevalence of CVD risk factors
and thus CVD morbidity and mortality rates (Carleton et al., 1987). The
data presented in Table 13-4, most of which were collected 3 years after
the program ended, similarly demonstrate very limited support for achiev-
ing these goals.
No sustained statistically significant between-city differences were
observed in physical activity, smoking prevalence, CVD knowledge, cho-
lesterol levels, or BP in the PHHP. Although at-peak intervention CVD
morbidity and mortality rates were significantly lower in the intervention
community, the difference had disappeared in 3-year post-intervention. The
projected CVD risk declined in each city, but the difference was not signif-
icant. The same trends were evident in the cohort data. BMI was the only
risk factor for which the between-city difference was significant. Although
BMI rose among all individuals in both communities, the increase was sig-
nificantly smaller in Pawtucket. However, this result was limited to males,
younger persons, and individuals with lower education levels. Positive treat-
ment effects were noted among those who participated in the church-based
education component of the intervention compared to baseline. Significant
improvements were observed in dietary behaviors and practices as compared
to baseline levels.
The MHHP results largely mirror those of the SFCP and the PHHP. These
are presented in Table 13-5. Consistent with the findings of the two afore-
mentioned studies, very few statistically significant between-city differences
were observed in the MHHP. Improvements were noted in smoking preva-
lence among women and those who received school-based interventions and
also physical activity (Perry et al., 1992).
TABLE 13-4 The Pawtucket Healthy Heart Program Major Objectives and
Results

Objectives Results

15% reduction in total fatal and CVD risk declined uniformly. A small but
non-fatal CVD event rates significant between-city difference was
noted during peak intervention, but
this effect dissipated by the three-year
follow-up
2% reduction in BMI BMI increased uniformly. There was a
statistically significant relative change
between cities in independent samples
post-intervention among males, young-
persons, and those with less education
Increased physical activity No significant between-city difference
30% reduction in proportion of Prevalence declined uniformly; the
active smokers between-city difference was not significant
Increased CVD knowledge CVD knowledge increased uniformly; the
between-city difference was not significant
6% reduction in cholesterol Mean cholesterol levels fell uniformly; there
levels was no significant between-city difference
6 mmHg reduction in blood No significant between-city difference
pressure

Sources: Carleton et al., 1995; Derby et al., 1998; Eaton et al., 1999; Gans et al., 1999; Verheijden
and Kok, 2005.

TABLE 13-5 The Minnesota Healthy Heart Program Major Objectives and Results

Objectives Results

15% decline in CVD morbidity CVD mortality declined uniformly; no

and mortality rates significant between-city differences
Decline in BMI Increased uniformly; no significant
between-city difference
50 kcal/day increase in physical Small variable differences noted in
activity intervention communities; no significant
between-city differences
3% decline in smoking Uniform decline among men; no significant
prevalence between-city difference. Small significant
decline in women in independent samples
of intervention cities, but limited evidence
of an intervention impact in the cohort
7 mg/dL reduction in cholesterol Mean cholesterol levels fell uniformly; levels
levels were lower in intervention communities
during the first three yrs. but higher in final
2 years. None of the between-city
differences were significant
2 mmHg decline in blood pressure No significant between-city differences

Sources: Luepker et al., 1994; Lando et al., 1995; Luepker et al., 1996; Schooler et al., 1997.

323
324 IMPLICATIONS

TABLE 13-6 A Comparison of Intervention Impact and Penetration in the

Stanford Five City Project, the Pawtucket Healthy Heart Program, and the
Minnesota Healthy Heart Program

Trial

Stanford Five City Pawtucket Healthy Heart Minnesota Healthy Heart

Projecta Programb Programc

• 59% recalled • 42,000 individuals (59%) • 60% of adults

seeing televised participated in one or more participated
public service programs in screening
announcement • 55% received screening and education
• 21% recalled services only programs
television programs • 10.6% participated in • 30% received
• 40%–60% recalled exercise programs face-to-face
various print interventions
education materials • 4.1% of smokers
• Each resident was participated in
exposed to ~5 smoking cessation
hours/year of the programs
study’s educational compared to 3.1%
messages in comparison areas

Sources: aFarquhar et al., 1990; Flora et al., 1993; Fortmann et al., 1995; Parker and Assaf,
2005.
b
Eaton et al., 1999; Merzel and D’Afflitti, 2003.
c
Luepker et al., 1994; Murray, 1995; Schooler et al., 1997.

Finally, Table 13-6 presents information regarding the reach of the inter-
ventions within the targeted communities. Under the circumstances of most
health-related controlled clinical studies, it is relatively simple to tabulate
the “dose” of intervention a participant receives (Flora et al., 1993). A mul-
ticomponent community intervention, on the other hand, involves many
intangible elements such as electronic delivery of the campaigns’ programs
or educational messages or even person-to-person communication. However,
the developers of the SFCP, the PHHP, and the MHHP implemented several
measures to evaluate the penetration and reach of their efforts.
It was difficult to recruit and engage a large proportion of the targeted
populations for each study. For the SFCP, electronic media was the major
thrust of information dissemination, but less than 60% of the population
recalled seeing the televised public service announcements and only 21%
recalled seeing the educational television programs. Although each resident
was exposed to an average of 5 hours of the study’s educational messages
per year, this number pales in comparison to the inundation of the televi-
sion advertisements individuals view yearly, estimated at that time to be
approximately 292 hours (Farquhar et al., 1990; Fortmann et al., 1995).
 Community-Based Health Interventions 325

The PHHP and the MHHP closely tracked the number of individuals par-
ticipating in the campaign’s events. The emphasis of the interventions for
these campaigns was on direct education and group programs. Participation
rates for each were relatively well-documented. Nearly 60% of Pawtucket
residents participated in one or more of the campaign’s events; just over half
received screening services only. Similarly, 60% of adults in the MHHP par-
ticipated in the screening and education programs, and 30% received face-
to-face interventions.
The intervention programs had difficulties permeating the deeply
entrenched social, cultural, and environmental fabric of the communities.
Less than 60% of targeted populations in the SFCP and the PHHP recalled
campaign educational messages or participated in any one of the campaigns’
programs. The penetration data present the fundamental difficulty of these
community interventions: their inability to demonstrate an active engage-
ment with the target population.

Comparing the First and Second Generation CVD Campaigns

The paucity of significant findings in the second generation of CVD inter-
ventions (the SFCP, the PHHP, and the MHHP) stands in contrast to the
successes of the first generation (the NKP and the STCP) interventions
of the 1970s. How can this discrepancy be explained? In the exploration
of the pertinent literature, many investigators have found it instructive to
consider the unique contexts and circumstances, such as the target popula-
tion, setting, and timing in which the studies took place (Blackburn, 1983;
Schooler et al., 1997; Lindholm and Rosén, 2000; McLaren et al., 2007).
First, there were notable differences between the populations targeted in
the earlier and later trials. The NKP, for example, was conducted in a
region of Finland where the prevalence of CVD risk factors and the risk
of coronary heart disease was one of the highest in the world (McAlister
et al., 1982; Luepker et al., 1996). The targeted populations of the sec-
ond generation trials (the SFCP, the PHHP, and the MHHP), conversely,
were generally at or below the average risk for CVD (Winkleby, Fortmann,
and Rockhill, 1992; Carleton et al., 1995; Fortmann and Varady, 2000).
Although there were secular downward trends for CVD risk in the earlier
and later studies, individuals in the studies of the 1970s (whose CVD risk
was much higher to begin with) had more potential for detectable improve-
ment, as it may have been more feasible to move from very high-risk to
high- or moderate-risk as opposed to moving from moderate-risk to low-
risk (Luepker et al., 1996).
Similarly, differences also existed between the earlier and later populations
regarding nutritional practices. For example, in the first generation studies,
326 IMPLICATIONS

declines in saturated fat intake could be achieved through relatively simple

behavioral changes, such as substituting low-fat milk with whole milk and
replacing butter with healthier oils. By the onset of the second generation
studies, many individuals had already implemented these behavioral changes.
The later campaigns’ nutritional programs advocated behavior changes that
may have been more difficult to adopt, such as reducing meat and cheese
intake, drinking only non-fat milk, and encouraging vegetarianism (Fortmann
et al., 1993).
Second, it is important to consider the setting in which the studies were
conducted. The governmental regulation of medical services in Finland may
have engendered an environment in which citizens were more receptive to
programs endorsed by the government (McAlister et al., 1982; Elder et al.,
1993; Schooler et al., 1997). Thus, large-scale policy changes may have been
more feasible. One example of governmental involvement was the offering
of economic incentives to food producers and distributors in North Karelia
to produce and distribute low-fat dairy products to the population. The uni-
versal health-care system of Finland may have also been a more conducive
environment for implementing successful community-wide campaigns and
achieving long-term health improvements.
A third consideration is the contextual circumstances of the studies.
Although the second generation studies began only 10 years after the ini-
tiation of the NK and STC projects, by the onset of the later studies, CVD
had become a much greater concern in the public sphere. National and
local health organizations and the media had begun campaigns to promote
awareness about the risks of CVD-associated behaviors. Many commu-
nities in the second generation of studies had already been exposed to
CVD-related education programs. Some cities even had institutionalized
programs aimed at reducing CVD behavioral risks, such as the control
of smoking in public places (Elder et al., 1993; Mittelmark et al., 1993;
Winkleby, Feldman, and Murray, 1997; Merzel and D’Afflitti, 2003). As a
result, the second generation CVD prevention trials’ educational messages
may have lost their novelty and prominence, as they could not overcome
the synchronized efforts and messages of external campaigns aimed at the
same issues.
Despite these noted differences, there were fundamental problems that the
first and second generation of CVD trials shared. These include methodolog-
ical constraints, lack of community involvement, and the confounding influ-
ence of secular trends. However, despite the similarities of the constraints
in the first and second generation of CVD trials studies, the unique circum-
stances during which the first generation studies were conducted may have
enabled the detection of significant changes in outcomes between interven-
tion and reference communities.
 Community-Based Health Interventions 327

Why did the Second Generation of U.S. Community Intervention

Studies Fail?
The notable successes of the NKP and the STCP trials compared to lack of
findings in the second generation trials raises two major questions: What
specific factors contributed to the failures of these campaigns? More impor-
tantly, given the disappointing outcomes, how do interventionists proceed in
the future with community-based prevention interventions?
With regard to the failures of the second generation trials, many explana-
tions have been proposed. The four most prominent explanations include:
design and methodological constraints, the limited scope of the interven-
tions, the presence of powerful secular trends, and the lack of community
input and integration (Fortmann, Flora, Winkleby, 1995; Winkelby, Feldman,
and Murray, 1997; Merzel and D’Afflitti, 2003; Parker and Assaf, 2005).

Design and Methodological Constraints

Fundamental limitations of all observational studies include the dif-
ficulty of establishing satisfactory control and analysis measures (Murray
et al., 1994). As previously mentioned, the need to identify comparable
demographically matched intervention and reference communities renders a
randomized controlled trial, considered to be the gold standard of interven-
tional research, nearly impossible (Farquhar, 1978; Berkowitz, 2001). Thus,
despite covariate analyses to control for confounding variables, if differences
were present between the two groups, the conclusion that the difference was
the result of the intervention’s efforts cannot exclude the possibility that the
changes resulted from factors beyond the intervention.
It has also been suggested that using morbidity and mortality as the major
outcome measures in community prevention trials is not an appropriate end-
point. Lindholm and Rosén (2000) claim that various impediments inherent
to community-based studies, such as reference group contamination, pop-
ulation mobility bias, and time-lag bias (the period of time needed for risk
factor reduction to have full impact), limit the potential to detect significant
differences in hard end-points such as morbidity and mortality. Similarly,
Berkowitz (2001) contends that traditional research evaluation methods may
be too indiscriminate to detect such differences.

Intervention Limitations
A second criticism of the second generation trials’ designs was that the
interventions may have been too broad and not sufficiently intensive. These
interventions were not generally refined or tailored to the diverse subgroups
of the target population and thus unlikely to be effective. The interventions
may have raised awareness about CVD issues in general but had a limited
328 IMPLICATIONS

impact in inducing changes in deeply ingrained behavior among a heteroge-

neous population (Merzel and D’Afflitti, 2003). For example, although the
SFCP developers were cognizant of the large Hispanic population in the
treatment communities and designed Spanish education materials for them,
they may have overlooked the need to tailor the delivery and content of their
messages to this culturally distinct subgroup of the population.
Additionally, certain segments of the population may be more receptive
to change than others, and it is important to recognize this distinction when
developing interventions (Winkleby, Flora, and Kraemer, 1994; Ribisl et al.,
1998). For example, research consistently indicates that there is a disparity
in CVD mortality rates, with those who are White, educated, and of higher
SES less likely to die from cardiovascular diseases compared to minority
groups with lower education and SES levels (Smedley, Stith, and Nelso,
2003; Shaya, Gu, and Saunders, 2006). Pearson et al. (2001) contend that
the populations at highest risk for CVD tend to be more resistant to change,
underscoring the need to tailor health interventions to specific subpopula-
tions within a broader community-wide intervention. The broad interventions
of the second generation CVD trials, which targeted large, diverse popula-
tions, may have had more success had they identified population subgroups
and designed specific intervention programs for them.
Building upon Pearson and his colleagues’ postulation, Winkleby, Flora,
and Kraemer (1994) decided to explore this issue of tailoring for the SFCP.
They stratified individuals from the intervention communities into four dis-
tinct groups based on changes in their CVD risk factor score, comparing
those who exhibited the most positive change to those who exhibited the least.
Group I consisted of older adults who had the highest baseline BP and cho-
lesterol levels. This group was found to be the most motivated and responsive
to the campaign’s interventions. Groups II and III were comprised mostly of
younger individuals with moderate levels of responsiveness and receptivity
to programs put forth by the campaign. Group IV was 40% Hispanic and
had the lowest education levels, SES, and baseline CVD knowledge. This
group also had the highest smoking rates and was at highest risk for CVD.
Individuals in this group were found to be the “most resistant” to change.
It is essential to explore and understand why certain high-risk groups are
least receptive to change to develop strategies to reduce the health burdens
that disproportionally afflict them. Several variables may contribute to this
disparity, including lack of leisure time, inadequate resources, and compet-
ing priorities besides CVD reduction. For example, although CVD may be
the leading cause of death in a community, if residents live in an area with
a high crime rate or high unemployment, they may perceive these threats
to be greater than that of CVD (Elder et al., 1993; Stokols, 1996; Hancock
et al., 1997).
 Community-Based Health Interventions 329

Secular Trends
It is widely acknowledged that strong secular health trends may have
eclipsed the potential intervention effects in the community-oriented inter-
ventions of the 1980s (Murray, 1995; Susser, 1995; Winkleby, Feldman, and
Murray, 1997; Merzel and D’Afflitti, 2003; Parker and Assaf, 2005). The
second generation of CVD interventions were implemented during a period
when health-related issues such as smoking, diet, and exercise at the forefront
of the public health movement in the United States. The same social forces
that led to the concept of population-wide health interventions during the
1970s also stimulated independent public health campaigns across the United
States, targeting many of the same health issues promoted by the CVD tri-
als. Although all three second generation CVD trials observed declines in
CVD morbidity and mortality and cigarette smoking and saw increases in
CVD knowledge in the experimental communities, the same trends were
observed in the control communities, reflecting a broader national improve-
ment in CVD-related attitudes and behaviors. The concomitant efforts of the
campaigns’ interventions and the secular effect of systemic changes expe-
rienced in U.S. society during the same time period may have nullified or
concealed any of the campaigns’ true intervention effects.

Modest Community Engagement

A fundamental difficulty in population-wide health promotion interventions
is genuinely engaging the community in the design, implementation, and main-
tenance stages of the programs. Comprehensive collaboration with community
members should encompass their active participation in all stages of the cam-
paign and engender a sense of ownership. The achievement of a true sense of
community ownership of public health campaigns has been an elusive chal-
lenge, however, as organizations external to the community generally select the
health concern to be targeted as well as the intervention strategies (Jackson et
al., 1994; Green, Daniel, and Novick, 2001). This can be especially problematic
because community residents and local leaders, rather than external program
developers, know and understand the characteristics and needs of their own
community. Community stakeholders are best suited to select effective inter-
ventions and targets because of this innate knowledge. Additionally, when a
community is empowered and motivated to confront an issue affecting their
population, as was observed for CVD in the NKP, community members and
local organizations seem to be more receptive to the intervention programs.
To illustrate varying degrees of community engagement in the SFCP, the
PHHP, and the MHHP, Table 13-7 compares aspects of engagement, includ-
ing the presence of a community board, community involvement in issue
selection, program development, implementation, and maintenance.
TABLE 13-7 A Comparison of the Level of Community Engagement in the Stanford Five City Project, the Pawtucket Healthy Heart
Program, and the Minnesota Healthy Heart Program

Trial

Stanford Five City Projecta Pawtucket Healthy Heart Programb Minnesota Healthy Heart
Programc

Community Board A Community Board, comprised A Church Advisory Board (CAB), A Community Advisory
of local leaders and residents comprised of church leaders, Board, comprised of
representing various segments of provided resources to parishes that community leaders who
the population, was responsible wanted to participate in heart health were identified through
for advisory, directory, and programming formative analysis,
gate-keeping roles coordinated education
activities and formed
smaller task forces to help
develop program activities
Community No No No
Involvement in
Issue Selection
Community No Yes Yes
Involvement
in Program
Development
Community Local organizations delivered the Volunteers and local organizations, with Volunteers carried out
Involvement in majority of the campaign’s a strong emphasis on churches, were many of the programs.
Implementation messages responsible for carrying out many of Additionally, project
the programs staff worked with
physicians and health
care professionals to alter
practice in the healthcare
settings
Community The “Community Health Program maintenance was an Three years post-research
Involvement Promotion Program of Monterey established objective; specific details phase, 61% of MHHP
in Program County” was established were not enumerated about the programs were operated
Maintenance to continue the campaign’s extent of the maintenance phase by local providers
programs after the study ended, beyond the continuance of certain
but dissolved three-years after. program elements through the local
The Monterey County Health Parks and Recreation Department
Department took over at this
point.

Sources: aShea and Basch, Part II, 1990; Jackson et al., 1994; Schooler et al., 1997.
b
Carleton et al., 1987; Lefebvre et al., 1987; Shea and Basch, Part II, 1990.
c
Blackburn, 1983; Bracht, 1988; Shea and Basch, Part II, 1990; Weisbrod, Pirie, and Bracht, 1992; Bracht et al., 1994; Jeffery et al., 1995.
332 IMPLICATIONS

All three campaigns established community advisory boards to help with

different aspects of the intervention programs. Each board served a dis-
tinct function. The SFCP board, for example, was used for general advisory
purposes. The PHHP board, on the other hand, was comprised of church
leaders who helped to allocate campaign materials and deliver educational
programs. The MHHP advisory committee was formed through extensive
formative analysis of the community, in which leaders in the community
were identified and asked to sit on the committee. The board was active in
coordinating activities and forming smaller task forces to address different
components of the intervention campaign.
Despite efforts to facilitate community engagement in all phases of the
campaigns, a recurring problem was that often, the partnerships between local
entities and the study investigators were externally imposed and devoid of
real community input and direction. This resulted in the campaign research-
ers selecting the intervention targets and methods of delivery rather than the
community itself. Over time, the investigators did attempt to incorporate the
community in other dimensions, such as certain aspects of program develop-
ment (PHHP and MHHP) and the implementation of intervention programs.
The PHHP, in particular, was responsive to data it received from its tracking
system. The PHHP leadership found that there was a slow rate of organiza-
tional involvement, group participation, and volunteer recruitment, in addition
to minimal penetration of the program’s efforts into the greater community
during the initial phases of the study. This feedback helped shape the next
phase of the study, which focused on community-wide programming in addi-
tion to the organization-based efforts (Lefebvre et al., 1988).
All campaigns included in their design a maintenance phase to shift the
CVD intervention programs from the study designers to local resources.
This transition proved to be a complicated undertaking, as members of the
transition team encountered various barriers that impeded a smooth shift
of responsibilities. According to Jackson and her colleagues (1994), for the
SFCP in particular, these barriers included interagency competition for lim-
ited resources, insufficient time and resources for the established agencies
to raise funds and organize program continuance, and conflicts with agen-
cies’ established programs and objectives that were often dictated by state
and national organizations. Still, local organizations continued to carry out
a number of campaign programs after the formal intervention concluded.
The engagement of the community in the planning stages of the interven-
tion, throughout the campaign and after the intervention ends, may lead to
more positive results. As discussed above, although the second generation
CVD interventions incorporated the community in several aspects of the
interventions, each also had gaps in fundamental areas, most strikingly in
the selection of issues and the method of delivery of campaign programs.
 Community-Based Health Interventions 333

Community Trials Beyond CVD: HIV, Smoking,

Diabetes, and Obesity

It is instructive to examine community-based trials that address health issues

beyond CVD. Although not an exhaustive review of the literature, the hope is
that by illuminating some of the successes and failures of these campaigns,
strategies for improving community-wide interventions can be developed for
many public health concerns. It is important to reiterate that although the
projects that will be discussed in the subsequent paragraphs followed a gen-
eral community intervention framework, many differ from the CVD studies
of the 1970s and 1980s in that they target high-risk groups only or individu-
als already presenting with the disease or risk factor.

HIV Campaigns

Community-oriented efforts to curtail the mounting prevalence of HIV

were first implemented in the early 1990s. The results of a small number
of comprehensive community-based studies conducted across the United
States demonstrated that these interventions were often successful in mod-
ifying high-risk behaviors such as sexual practices and/or injection-related
drug use (Kelly et al., 1991; Kelly et al., 1992; Holtgrave et al., 1995; AIDS
Community Demonstration Projects, 1996; Kegeles, Hays, and Coates, 1996;
Kelly et al., 1997). These findings, which provide evidence for the potential
of community-wide prevention programs to bring about changes in health-
related behaviors, stand in contrast to the CVD prevention campaigns of the
1980s discussed in the previous sections.
Interestingly, the HIV and CVD studies shared many structural and orga-
nizational similarities. These included similar theoretical approaches that
served as the basis of the quasi-experimental study design, intervention strat-
egies, data collection and analysis, and minimal emphasis on policy changes
(Janz et al., 1996; Merzel and D’Afflitti, 2003). Moreover, large favorable
secular trends were present in both the CVD and HIV studies.
What elements of the HIV-focused prevention efforts distinguish it from
the CVD campaigns and what can be gained from their experiences? An
excellent analysis by Merzel and D’Afflitti (2003) addresses these questions.
Their main observations are summarized below. It is important to note that
there are inherent differences between the nature of the diseases and the
targeted populations, which may render HIV a more promising target of
community interventions. First, HIV is communicable and can be contracted
through relatively few incidents of high-risk behavior; even a small lapse
can have dire consequences. CVD, conversely, is characterized by a complex
interaction of risk factors, multiple risk factor etiology, and a substantial time
334 IMPLICATIONS

delay between risk factor exposure and disease manifestation. Thus, because
HIV poses a more “immediate” threat and can generally be avoided through
concrete behavior changes such as condom use, there may be a greater moti-
vation for modifying behavior and adopting safer practices.
A second notable difference between HIV and CVD campaigns is the
target population. Unlike the CVD campaigns that delivered interventions
to a large, diverse community, the HIV campaigns targeted relatively small
homogenous population subgroups. As a result, HIV interventions were
designed specifically for those subgroups most at risk of becoming infected
with HIV.
Despite these fundamental differences, important lessons can be gained
from the experiences of the HIV campaigns. First, a major feature of HIV
community programs was the extensive use of formative research in the ini-
tial stages of the studies. Such analyses enabled researchers to define dis-
crete population subgroups that were most in need of interventions as well
as to identify key leaders and community members to help promote and
disseminate the campaigns’ messages (Higgins et al., 1996). With the help
of the community members and leaders, the researchers were able to develop
highly tailored interventions that addressed the specific needs and the social
environment of the targeted populations. This strategy may be useful for
future CVD studies. As discussed earlier, it may also be beneficial to iden-
tify distinct subgroups of the population and design targeted strategies to get
them engaged in addition to the generalized population-wide interventions.
A second distinction is the emphasis of HIV campaigns on altering the
normative practices and social milieu in which behaviors are shaped. A
number of researchers sought to modify attitudes and behavior by design-
ing interventions that involved “peer role models” from the target popula-
tion in the implementation and endorsement of the risk-modifying programs
(Simons et al., 1996; Kelly, 1999). An assessment of 37 HIV prevention cam-
paigns found that the use of trained community peer role models whose life
circumstances and characteristics reflected those of the target population was
one of the most important factors influencing the acceptance of health mes-
sages (Janz et al., 1996). Although the second generation CVD interventions
also used community volunteers to deliver many of the campaign programs
and messages, the HIV campaigns had a strong emphasis on identifying and
training trustworthy community role models to provide education on health
information and behavioral change techniques. The shared experience that
these peer educators had with the target group might have contributed to
their success.
The success community HIV prevention campaigns have had in modifying
behaviors and norms and curtailing high-risk behaviors reveals the potential
for community-wide interventions to bring about health improvements at the
 Community-Based Health Interventions 335

population level. Major lessons from the HIV campaigns include the need
to identify distinct subgroups of the target population and to understand the
ways in which they can be actively engaged. Additionally, such studies show
the promise of using community peers or “role models” to deliver the pro-
grams in all stages of the campaign and to help modify social attitudes and
norms.

Smoking Campaigns
Community-based prevention programs that targeted cigarette smoking have
also been attempted with variable results. Gnich (2004) conducted a compre-
hensive literature review of community initiatives in which smoking cessa-
tion was a component or the chief target of the intervention. She found that
although a majority of studies demonstrated significant behavioral outcomes
in at least one area, the magnitude of the impact was minimal and smaller
than anticipated.
For example, the well-known COMMIT trial had mixed outcomes. The
study was a randomized, controlled, community- based effort that sought to
increase the “quit rate” among heavy cigarette smokers as well as to reduce
smoking prevalence in 11 intervention communities (COMMIT I and II,
1995). The intervention included education through the media and commu-
nity events, cessation efforts, and involvement of health-care providers, work
sites, and local organizations. Results of the 4-year effort indicated that the
intervention did not significantly alter quit rates among heavy smokers. A
modest but significant intervention effect was noted, however, among light-
to-moderate smokers, particularly among the least educated subgroup, sug-
gesting that an exclusive focus on smoking reduction may have promise in
this dimension.
Another study, the “Neighbors for a Smoke Free North Side,” sought to
reduce smoking prevalence in three low-income, predominantly Black neigh-
borhoods in St. Louis (Fisher et al., 1998). The 2-year intervention involved
smoking cessation classes, door-to-door efforts, community programs, and
the media. Smoking prevalence declined significantly in intervention com-
munities as compared to reference neighborhoods. The results suggest prom-
ise in targeting more homogenous city neighborhoods and refining strategies
that meet the needs of area residents.
However, the drastic 50% reduction in smoking prevalence over the last
50 years, when nearly half of the U.S. population smoked, did not occur
because smokers enrolled in cessation classes or participated in smaller-scale
smoking reduction campaigns, such as those mentioned in the preceding
paragraphs. Rather, the reduction was the cumulative effect of broad pub-
lic health and public policy changes that have been implemented over many
336 IMPLICATIONS

years. These have drastically altered the social environment and thus the
public perception of smoking (Syme, 2004, 2007). Such large-scale policy
efforts were initiated in response to a growing literature that documented the
harmful effects of tobacco use. The public health policies and environmen-
tal constraints include bans on smoking in public places, targeting the dan-
gers of secondhand smoke, a rise in cigarette prices and taxes, anti-tobacco
advertising, restrictions on tobacco advertising, and lawsuits against tobacco
companies (Smedley and Syme, 2001; McLeroy et al., 2003; Brownson,
Haire-Joshu, and Luke, 2006).
The widespread systemic changes that occurred over the past 60 years
were instrumental in altering the perception of tobacco use and thus greatly
reducing the number of smokers in the United States. The successes high-
light two important lessons. First, large-scale efforts that address complex
behaviors and deeply embedded social norms may require a longer period
of time for large-scale changes to be observed. Second, widespread pol-
icy changes may be necessary to alter the normative environment in which
behaviors are developed.

Diabetes Campaigns
Community-based health initiatives have also been carried out for Type 2
diabetes. These studies have served as a guide in the design of the Sinai
Urban Health Institute (SUHI) Type 2 Diabetes Prevention project (Whitman
et al., 2010). A major distinction will be the role of the community in the
projects’ designs. The diabetes studies delineated below generally targeted
and recruited individuals already exhibiting Type 2 diabetes, rather than
entire communities or high-risk groups. Despite this difference, there are
lessons to be learned from their efforts. Of particular interest is the fact
that the diabetes studies demonstrated greater success in modifying some of
the same unhealthy behaviors that were targeted in the CVD studies of the
1970s. What strategies were employed that seemed to facilitate the favorable
changes?
Satterfield et al. (2003) conducted a systematic literature review of com-
munity-based interventions conducted from 1990 to 2001 in which the aim
was to reduce diabetes onset and complications associated with the disease.
Their search revealed a sparse collection of studies in this domain, partic-
ularly in areas of primary prevention. This review illuminated the need for
further research, given the growing burden of Type 2 diabetes, particularly
among minority groups and low-income individuals who are disproportion-
ately affected (Smedley, Stith, and Nelso, 2003; Marshall, 2005).
Since 2001, when the Satterfield et al. review was conducted, several
interesting studies were carried out that targeted minority populations
 Community-Based Health Interventions 337

with diabetes. These studies demonstrated appreciable success in amelio-

rating behavioral risk factors associated with diabetes. Two examples are
diabetes campaigns conducted in Detroit and Charlotte. Racial and Ethnic
Approaches to Community Health 2010 (REACH), an initiative through the
Centers for Disease Control and Prevention (CDC) in which the aim was
to eliminate racial and ethnic disparities in health, implemented successful
diabetes programs in these cities (DeBate et al., 2004; Two Feathers et al.,
2005; Kieffer et al., 2006; Plescia, Herrick, and Chavis, 2008). The REACH
Detroit partnership employed a multifaceted community-based approach to
target Black and Latinos in low-income neighborhoods of Detroit. Although
participants were recruited through hospitals and community clinics, the
intervention was based on the major principles of community-based partici-
patory research. A steering committee was established that was comprised of
health leaders, health-care providers, researchers, and REACH Detroit staff.
Extensive focus groups were conducted with community residents to guide
all aspects of the intervention. The central strategic feature was using com-
munity support groups to educate and teach techniques for healthy diabetes-
related behaviors. The vast majority of the selected participants participated
in at least one of the intervention programs. Significant differences between
intervention and reference groups were found in diabetes-related knowledge
(e.g., dietary behavior vegetable and whole-grain bread consumption, cook-
ing practices and soda consumption) and HbA1c levels.
The Charlotte REACH program, which targeted an area that was 90%
Black, also had favorable results. Significant declines in physical inactivity
and tobacco use among women and middle-aged adults were observed by
study’s end (DeBate, 2004; Prescia, 2008).
The results of both REACH 2010 studies suggest that a culturally sensi-
tive, community-wide health campaign delivered by local residents can sig-
nificantly improve glycemic control and improve risk factors associated with
diabetes. The positive outcomes may partly result from the cultural tailoring
of the intervention materials for the targeted Black and Latino communities,
the use of local community members in all stages of the campaign, and the
frequency and nature of the intervention’s educational classes.
Another intervention with similar methods of the REACH studies, known
as the Starr County Border Health Initiative (Brown and Hanis, 1999; Brown
et al., 2002), targeted Mexican-Americans in a community bordering Texas
and Mexico. The emphasis of the intervention included weekly educational
sessions in addition to support groups. Peer role models with Type 2 diabetes
were utilized to advocate in support the campaign for behavioral modifica-
tion strategies.
The experimental group had significantly lower HbA1c and fasting blood
glucose levels at 6 and 12 months in addition to higher diabetes knowledge
338 IMPLICATIONS

scores when compared to a reference group. The study demonstrates the

effectiveness of a culturally sensitive campaign on improving diabetes out-
comes of Mexican-Americans.
Another campaign targeting a largely Hispanic population with diabetes
was the Hispanic Chronic Disease Self-Management Initiative, a 6-week
randomized community-oriented trial (Lorig, Ritter, and Gonzalez, 2003).
Trained community health workers delivered support groups in Spanish at
local settings, discussing the disease and offering techniques for maintain-
ing a healthier lifestyle. A 4-month post-intervention follow-up revealed
improvements in health behaviors, health status, and self-efficacy in addi-
tion to reductions in health-care utilization. After 1 year, improvements were
maintained or improved.
Like Blacks and Hispanics in the United States, Native Americans also
suffer disproportionately from Type 2 diabetes. The “Strong in Body and
Spirit” campaign was designed for Native-American adults with diabetes
living in New Mexico (Gilliland et al., 2002). The intervention integrated
both clinical care and community participatory principles. A major focus of
the intervention was incorporating traditional Native-American values and
foods. By the end of the study, participants in the intervention group had bet-
ter glycemic control and less weight gain than those in the control group.
A final study of note conducted in a low-income urban community in
Norway is distinguished from the diabetes campaigns above because it
incorporated the community to a greater degree in its design (Jenum et al.,
2006). The campaign promoted physical activity as a means to reduce diabe-
tes complications. The intervention included exercise classes, culturally sen-
sitive health counseling, walking groups, and education programs. Broader
environmental changes included new signage and development of walking
trails and improved street lighting to increase accessibility to and feasibility
of exercise. Individuals in the experimental arm of the study significantly
improved on the frequency of physical activity, cholesterol levels, and blood
pressure and glucose levels in men.
These studies, with a focus on diabetes and behavioral change across a
number of diverse communities, underscore the idea that individuals and
communities who are disproportionately burdened with a disease can be
effectively targeted and their health outcomes improved.

Obesity Campaigns

Obesity has also been a target for community-based campaigns, as its onset is
largely determined by behavior. Similarly to the previously mentioned health
campaigns, the degree of community engagement has varied from study to
study. One recent study stands out because it involved genuine community
 Community-Based Health Interventions 339

engagement and collaboration and had remarkably positive outcomes. A

12-year campaign was carried out in two communities in northern France
with the aim to curtail the country’s overweight and obesity epidemic in
children (Westley, 2007; Levi, Segal, and Juliano, 2008; Romon et al., 2008;
Katan, 2009). By involving every sector of the small intervention community,
including the mayor and the local government, shop owners, school teachers,
doctors, nutritionists, caterers, restaurant owners, sports associations, and the
media, substantial benefits were observed. Five years into the study, the prev-
alence of overweight in children in the intervention town had fallen to 8.8%,
whereas it had risen to 17.8% in the neighboring reference towns, reflecting
the greater national trend. Intensive efforts by the intervention communities
included building new sports facilities and playgrounds, training teachers
to deliver school-based nutrition classes, offering healthy cooking classes
and individual counseling to families, mapping out and highlighting walking
paths, hiring sports instructors, and instituting a comprehensive referral and
feedback system. This approach, known as the EPODE Study, is currently
being employed in 200 towns across Europe.
The results suggest that a multifaceted community-based intervention tar-
geting a single risk factor, conducted over a long period of time, and genu-
inely owned by the community can significantly improve population health
outcomes.

Future of Community Interventions

The modest results of the community-based CVD campaigns of the 1980s

raise questions about the future of broad public health targeted interventions
to combat chronic disease. One interpretation would simply be that commu-
nity-based health campaigns are ineffectual forms of interventions. However,
the results of the health campaigns discussed in the preceding section seem
to indicate the potential viability of this design for certain outcomes. Such
community-based interventions should not be abandoned but must be modi-
fied to encompass recommendations from recent studies and address modern
circumstances.
A community health promotion campaign is a valuable strategy for reduc-
ing the burden of disease because it incorporates the inextricably bound
elements that contribute to disease, including one’s environment and social
interactions. Unlike more reductionist-controlled clinical trials that generally
involve a homogenous group of participants, community-wide campaigns
target representative populations within their natural social and cultural set-
ting (Glasgow, Vogt, and Boles, 1999; Minkler, 1999). If interventionists can
move beyond their focus on the individual and acknowledge the complex
340 IMPLICATIONS

mediating forces that shape behavior and health, then future researchers may
have more success involving the community as an “empowered partner” to
improve health outcomes (Syme, 2004).
This chapter’s examination of the CVD trials and health promotion inter-
ventions targeting HIV, smoking, diabetes, and obesity has helped to illu-
minate elements that have contributed to the successes and failures of these
public health campaigns. Enumerated in the succeeding section are four
major recommendation areas based on the lessons learned from the studies
reviewed.

Recommendation 1: Select the Target Condition to Foster

Improved Health
The modification of deeply ingrained habits and behaviors requires volun-
tary sustained effort on the part of the individual. Based on the outcomes of
the community-based trials reviewed, enduring favorable health and behav-
ioral changes were facilitated by the presence of two inherent characteristics:
the “urgency of behavior change” and the presence of a feedback system.
The “urgency of behavior change” characterizes the immediacy of the
threat. The redeeming health benefits or the “pay-off” for modifying behav-
ior to avoid certain diseases or risk factors may take years to manifest or
may produce negligible perceptible improvements in a person’s lifetime. An
instructive analogy is the situation of anti-hypertensive medications used to
lower one’s blood pressure. Although the long-term physiological benefits
of the medications, such as stroke and cardiac arrest risk reduction, are sig-
nificant, the associated side effects (frequent urination, erectile dysfunction,
persistent cough, etc.) or lack of perceptible improvements may prevent one
from taking the medication regularly. Thus, the deleterious consequences
of CVD and other chronic diseases may be sufficiently remote and delayed
such that individuals place greater value on the short-term satisfaction of
engaging in their deeply entrenched behaviors.
Another consideration in the selection of a target condition is whether a
feedback system is in place or can be developed. A feedback system is a use-
ful component in interventions because it provides participants with imme-
diate information regarding their behavioral changes. With diabetes, for
example, the post-meal feedback from blood glucose tests enables individu-
als to see how the food they ingest affects their glucose levels. Accordingly,
they can alter their food intake based on this number. A feedback system can
be established in other ways as well. The Franklin Cardiovascular Health
Program, a small-scale community-based intervention (initiated in 1974)
conducted in towns throughout Maine, demonstrated positive outcomes
for CVD over 20 years (N. Record et al., 2000). A unique feature of this
 Community-Based Health Interventions 341

program was an emphasis on physician and nurse involvement. In addition to

genuine community-wide education efforts, frequent individual clinic visits
with nurses provided participants with risk factor screening and tracking,
counseling, referrals for medical care, and active client follow-up. The study
authors cite this intensive feedback system as a contributor to the demon-
strated enduring health changes.
Future investigators may want to consider these elements when selecting a
disease or risk factor to target when employing a community-based research
approach.

Recommendation 2: Conduct Formative Research and Design

Refined Interventions for Target Population Subgroups
The segmentation of a diverse population into more distinct subgroups has
been shown to enhance program impact on attitudes and behavior (Slater
and Flora, 1991; Schooler et al., 1997). Thus, extensive formative research to
assess the make-up and needs of the community should be a focus of future
interventions. For example, individuals with low education levels and SES,
many of whom are racial or ethnic minorities, are at high risk for developing
and dying from heart disease, yet these individuals are often the hardest to
reach (Winkleby, Flora, and Kraemer, 1994). When population subgroups
at high risk for developing disease are identified, they must be targeted
specifically.

Recommendation 3: Emphasize Primary Prevention and Focus on

the Social Determinants of Health
Reversing poor health trends requires effective primary prevention programs.
A major feature of future interventions should be to develop better preven-
tive measures and proactive strategies to reduce population-wide risk of dis-
ease. Even if interventionists could successfully mitigate the health problems
plaguing individuals already exhibiting disease risk factors, this would not
necessarily diminish the rate at which new individuals become “high-risk,”
thus propagating the cycle (Smedley and Syme, 2001; Syme, 2004). Instead
of focusing exclusively on individual risk factors and secondary prevention,
interventionists should seek to address the underlying forces that cause and
perpetuate disease.
In addition, it may be important to consider strategies that incorporate
both community-oriented health promotion principles to address the social
and behavioral determinants of health as well as local primary medical prac-
tice. Diseases such as CVD that are characterized by complex etiologies may
require this amalgam of approaches. The NKP and the previously mentioned
342 IMPLICATIONS

Franklin CVD Campaign in Maine demonstrated notable success following

such an integrated strategy.

Recommendation 4: Multifaceted Intervention Strategies for

Sustained Change
The success of future campaigns may depend on a synergistic approach that
utilizes various channels within the community to promote the intervention’s
messages once the research phase ends. Communities are diverse entities and
each resident responds differently to the intervention’s programs (Winkleby,
1994). Therefore, multiple strategies should be employed to ensure broad
reach and longevity of behavior change.
Additionally, many of the CVD campaigns demonstrated favorable behav-
ioral health trends during the apex of the intervention, but the effect often
dissipated in sync with the gradual conclusion of the study. Thus, sustained
interventions that become integrated into standard practice of the commu-
nity are likely an essential ingredient of successful community campaigns.
This was demonstrated in the community-wide pediatric obesity study in
France; the community itself was empowered to continue the nutritional- and
physical activity-centered programs endorsed by the campaign.
It has been widely argued that a facilitating factor to achieve such sus-
tainability is the inclusion of structural, policy, and environmental change
strategies (Schwartz et al., 1993; Jeffery et al., 1995; Stokols, 1996; Israel
et al., 1998; Glasgow, Vogt, and Boles, 1999; Green, Daniel, and Novick,
2001; Smedley and Syme, 2001; Brownson, Haire-Joshu, and Luke, 2006;
Doyle, Furey, and Flowers, 2006). These strategies have the capacity to ben-
efit all individuals exposed without requiring much active and voluntary
effort on their part. The NKP and the tobacco initiatives of the past 50 years
have revealed the potential for policy interventions to facilitate change in the
social environment in which behaviors are formed.
Although the universities and institutions that carry out community
research are not necessarily in the position to influence broad policy changes,
there is promise for this dimension to be explored and developed. One such
example, mentioned previously, is The Border Health Strategic Initiative, a
community-based effort to curtail the growth of diabetes among Hispanics
living in Arizona–Mexico border communities (Cohen, Meister, and de
Zapien, 2004; Meister and de Zapien, 2005; Hill et al., 2007). A major fea-
ture of this campaign was the establishment of special action groups (SAGs)
whose purpose was to advocate for policy and infrastructure change in their
communities. SAG leaders were employed to influence policy by mobiliz-
ing large numbers of residents to attend city council or board of supervisors
meetings. They successfully facilitated policy change in the communities,
 Community-Based Health Interventions 343

TABLE 13-8 Summary of Facilitating Factors in Successful Community Based

Campaigns

• Selecting a target condition for which there is great personal motivation and
relative ease of instituting changes
• Presence of a feedback system within the intervention as well as on the
individual level
• Segmenting a diverse target population into more homogenous subgroups
and design distinct interventions that address their individual characteristics
and needs
• Emphasis on primary prevention
• Selecting appropriate start and end points to assess physical and behavioral
change
• Effective integration of social and cultural interventions with primary medical
care
• History of positive working relationship between research organization and
community (including local organizations, government, business owners, and
community members)
• Identifying and employing trustworthy community peer role models to
endorse the behavioral changes of the intervention and deliver segments of
the intervention
• Major emphasis on planning and facilitating a transfer of responsibilities from
campaign designers to local organizations
• Including in the design a sub-committee to work towards achieving broader
policy and environmental changes within the community

which led to the development of parks and walking trails and the creation of
healthier food options at local grocery stores.
Thus, embedding an intervention’s messages within the social and envi-
ronmental fabric of the community may be a major facilitating factor needed
to sustain efforts through time and to ensure lasting change.
The four major recommendation areas delineated in the preceding para-
graphs may point a way forward as interventionists embark on genuine com-
munity-based endeavors in the future. To enhance the planning and design
of such campaigns, a concise summary of 10 facilitating factors exhibited in
successful campaigns is presented below (Table 13-8).

Conclusion: Community-Based Participatory Research,

Engagement, and Translational Science

In recent years, health promotion research campaigns utilizing communi-

ty-based participatory research (CBPR) approaches have gained support
and acceptance in the field of public health. A major feature that distin-
guishes participatory research from other public health community efforts
is the notion that the community is viewed not as the setting in which
344 IMPLICATIONS

an intervention is carried out but rather as an active partner throughout the

research process (Higgins and Metzler, 2001; Metzler et al., 2003). This col-
laborative partnership is enhanced when there is a history of prior positive
relationships between the “external” organization leading the project and the
community itself (Schooler et al., 1997; Israel et al., 1998; Lantz et al., 2001;
Israel et al., 2006).
And although CBPR may be considered an idealized or perhaps a roman-
ticized model of public health research, it is important to consider how the
theoretical underpinnings are translated into practical intervention strat-
egies and “real-life” circumstances. This chapter’s examination of studies
employing participatory approaches has revealed that although intervention-
ists may have recognized the importance of involving the community in all
phases of the campaign, most were unable to achieve genuine community
engagement.
Given the rising incidence of disease with significant social etiological
components in recent years, strategies directed at cure alone will be inade-
quate to stem their rapid trajectory. This observation is the basis for much
of Geoffrey Rose’s research. The thesis of his seminal book “The Strategy
of Preventive Medicine” (1992), a culmination of much of his earlier work
is that health interventions are most effective if they focus on communities
rather than individuals. His main points are summarized below:

1. In general health conditions exist on a continuum in a population;

2. Medicine or health care pays most attention to a “disease” that is
defined as existing beyond a cut-point of the distribution in an extreme
tail (e.g., glucose tolerance test > 140 o diabetes or blood pressure >
140/90 mm Hg o hypertension, etc.). Rose referred to this as the “indi-
vidual approach” or the “high-risk strategy”;
3. Paying most (or all) of our attention to this extreme part of the distri-
bution does not allow us to work with the remainder of the population
to help improve its health and to truly prevent disease. Rose referred
to working with the entire distribution of people as the “population
approach” and urged us to consider the “continuum of risk”; and
4. Rose’s conclusion is that preventive medicine must embrace both of
these approaches but argues that “of the two, power resides with the
population strategy.”

Thus, the path is available for improved health for all people. As often
as possible, it should employ a community-based approach, and whenever
possible, it should regard the community as agent in pursuing and creating
its own health and destiny. One must regard the failed community-based
 Community-Based Health Interventions 345

interventions around cardiovascular disease outcomes as one might view a

failed treatment for a disease, not as a clarion call to abandon community
interventions but, rather, a time to redouble efforts to design more effective
community participatory-based interventions—ones that truly engage with
the community in their own improvement efforts. The lesson from Rose’s
work is that population based interventions have to be the major focus
of disease reduction strategies. The lesson from the literature review on
CBPR is that for these population based public health efforts to be effec-
tive they need to engage the community in a meaningful manner. The path
to meaningful public health improvement in the United States can best be
achieved by applying Rose’s strategies with true CBPR efforts.

Acknowledgments

I would like to acknowledge Dr. Steve Whitman and the Sinai Urban Health
Institute team for their support and feedback in making this chapter possible.
It was an honor working with and learning from them.

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14
THE FUTURE HOLDS PROMISE

Steven Whitman, Ami M. Shah, and

Maureen R. Benjamins

Introduction

Although this book is finished, more remains to be said. Much writing about
science, epidemiology, and public health takes place in journals. This pub-
lishing process is well-defined and understood by those tens of thousands
of individuals who regularly read and write for such journals, which almost
always specify the length of the articles they will accept (often as short as
5–10 pages). As a result of this limitation, writers of these articles learn
quickly what must be omitted to save room. There is thus rarely space to
explain how the idea of an article emerged, who took part in the conver-
sations, how many false steps were taken until the idea was shaped, how
considerations of funding were involved, and a great deal more. These are
essential concepts for many involved in research; thus, not being able to put
these issues on display for colleagues is a serious limitation in how this pub-
lishing process works.
As the various successes (and failures) in the wake of Sinai’s Improving
Community Health Survey (Sinai Survey) emerged, the question of how to best
tell the full story became a prominent one. We started our dissemination efforts,
as one usually does, by publishing several reports and articles describing the
work. These have been referenced frequently in the previous chapters and will
not be repeated here. However, as these publications emerged, the full story and
the lessons did not. In addition to the issues listed above, the inter-relationships
of the various articles often were unexamined. Perhaps most importantly, the

355
356 IMPLICATIONS

interventions that were implemented found only little place in these journal
articles. We thus thought that a book would allow us to tell the more complete
story, which we hoped (and still expect) will help others who want to be part of
the efforts to improve health in vulnerable communities.
Ironically, now that the book is complete, 13 chapters later, there is still
much that needs to be said to portray the full richness of the events sur-
rounding the Sinai Model so that we can optimally move ahead. This con-
cluding chapter is an attempt to include some additional dimensions to the
story the authors of the chapters in this book have tried to convey.

The Goal of the “Sinai Model”

The Sinai Model, described in the Introduction (Whitman, Shah,

Benjamins, 2010), presents a strategy for gathering meaningful data,
which in turn can help structure interventions and attract resources in an
effort to improve health for vulnerable communities and reduce health
disparities. In Chapter 2, Dell and Whitman (2010) noted that dispari-
ties in health are more than differences. They are inequities that could
be avoided. These disparities occur for many reasons, but at their core,
they reflect omnipresent inequities in power and resources. These are
variously referred to as fundamental causes (Link and Phelan, 1995) or
distal factors (Krieger, 2008). It is bad enough to structure a society so
that some people can afford flat screen televisions and automobiles while
others cannot, but when the structure of a society systematically limits the
health, well-being, and life span of entire groups of people, that should be
seen as intolerable and unacceptable (Whitman, 2001).
Mount Sinai Hospital, where the editors of this book work, is located in
one of the poorest communities in Chicago. Although Chicago is a very
diverse city of 3 million people, that diversity is restrained by an enormously
segregated community structure, resulting in a city that has been labeled
as “hyper-segregated” (Massey and Denton, 1993). Notably, Mount Sinai
Hospital sits on a corner between a Black community area (North Lawndale)
and a Mexican community area (South Lawndale). Both communities are
very poor, and thus so is Mount Sinai. Many residents of these communities
have no insurance (Shah and Whitman, 2010), and far too many will not
even live long enough to be eligible for Medicare. Many of their lives are too
short and too filled with debilitating illness.
This is the problem that confronted us as we tried to think of a strategy
to improve health for these (and other) vulnerable communities. It was
hoped that if community-level data could be acquired, these data could
 The Future Holds Promise 357

guide efforts to improve health. The Sinai Survey produced such data and
improvement efforts are very much underway, as detailed by the six case
studies in Section 3.

Successes and Challenges

The successes that have occurred thus far are initial ones. Several are described
in preceding chapters, and some others have not yet been discussed:

1. The first survey of six community areas was replicated in a Jewish

Community and three Asian communities, bringing the total of diverse
surveyed communities to 10.
2. More communities in Chicago—notably the Laotian, Indian, and
Pakistani communities—have expressed interest in trying to raise
funds to also replicate the survey.
3. Perhaps most importantly, many interventions have been funded as a
result of the survey. These involve issues such as smoking, diabetes,
obesity, and pediatric asthma. Each one of these is impressive. Taken
together, they present an affirmation of the Sinai Model and all of its
possibilities.
4. As a direct result of the survey, many other grants and initiatives have
been pursued by local foundations, health clinics, churches, and com-
munity organizations. These include areas such as arthritis, pediatric
obesity, and cancer screening.
5. A diabetes intervention for a very poor Black community (North
Lawndale) has just recently been funded, modeled on the one for mostly
Hispanic Humboldt Park (Whitman et al., 2010). The establishment of
this intervention and the receipt of funding have been important events.
Now, substantial efforts to prevent diabetes are underway in two very
poor Chicago communities and both have emanated directly from the
Sinai Survey data.
6. The Greater Humboldt Park Community of Wellness (Martin and
Ballesteros, 2010) was shaped around the Sinai Survey findings and
now is widely seen as the pre-eminent community-based health orga-
nization in Chicago. In fact, as this book goes to press, the National
Institutes of Health has just issued a call for proposals for “Building
Sustainable Community-Linked Infrastructure to Enable Health
Science Research,” and the Community of Wellness is being consulted
frequently by groups eager to submit a proposal and to replicate its
success.
358 IMPLICATIONS

7. Multiple Chicago health foundations have told us that numerous pro-

posals they have received are based on the Sinai, Jewish, and Asian
Survey findings.
8. It is common now for community-based organizations and universities
to mount health surveys in Chicago communities, an occurrence that
was relatively rare just a few years ago.
9. Various medical center projects have been taken to task by community
groups that established themselves in the context of the survey data.
These challenges have been substantial, and ideology is beginning to
shift about how one regards community interaction, indirect costs, and
other related areas.
10. Many presentations have been made about survey findings. In fact, they
number more than 150 and still counting. For example, the authors orga-
nized a panel workshop at the 2006 annual meeting of the American
Public Health Association on the topic of local data. Speaking at the
panel were representatives of New York City, Los Angeles, the Centers
for Disease Control and Prevention (CDC), and Chicago.
11. Groups in other cities, counties, and states have approached us for
copies of our materials and advice on how to mount replications of
the Sinai Survey. These include the Philadelphia Health Management
Corporation, Winnebago County Department of Public Health in
Rockford (IL), Los Angeles County Department of Public Health,
Sullivan County Regional Health Department in Tennessee, Minnesota
Department of Public Health, Morehouse School of Medicine, and
Delaware Department of Public Health, to name a few.
12. The Sinai Urban Health Institute participated in various surveys that
were assembling an inventory of cities that have gathered local area
surveys on health issues. For example, we corresponded with promi-
nent researchers from Rand, Inc. for the Primary Prevention Project
in Washington D.C. and with the Canadian Alliance for Regional Risk
Factor Surveillance network that was administering a survey on local-
level chronic disease risk factor surveillance systems.

Although it is early in the process, there have thus far been important areas
where the Sinai Survey and its sequellae have suggested that some important
opportunities have not been brought to fruition. These challenges include the
following:

1. Some of the 10 surveyed communities have not yet been able to mount
any interventions related to the survey findings. In some cases, there are
no strong community-based organizations (CBOs) to lead this effort;
in one community, there are too many CBOs and they have not been
 The Future Holds Promise 359

able to coordinate efforts; and, in two cases relatively strong CBOs that
work in other areas have not been able to include health as a focus,
even in the face of likely funding.
2. The widely acknowledged challenge of sustainability has already con-
fronted several initiatives. For example, the smoking prevention effort in
North Lawndale (see Chapter 7), implemented in the face of one of the
highest smoking rates documented in recent decades, lost its state funding
two years into a five-year project when the current economic crisis
hit Illinois and additional resources could not be located to continue.
Other interventions described in Section 3 will certainly face issues of
sustainability in the near future.
3. We have no way of knowing how health changes in a community over
time. For example, did some measures improve while others grew
worse? Did all improve or grow worse? Thus, replicating the survey
after 10 years would be an invaluable event. If we are able to accom-
plish this, then this item will move dramatically from the challenges
category where it now sits to the success category above.

Meeting the Need for Local Health Data Elsewhere

The effort described in this book to gather local level data and to assess
the health of communities is, of course, not the only one of its kind.
There are a growing number of agencies that are gathering such data in an
effort to improve health (Simon et al., 2001; Fielding and Frieden, 2004;
Frieden, 2004).
At the national level, there are efforts to examine the health of smaller
geographic areas. For example, the CDC, which conducts state-based health
surveys (BRFSS), designed the Selected Metropolitan/Micropolitan Area
Risk Trends Project to mathematically estimate health-related prevalence
proportions in smaller geographic areas (CDC, 2009). These data have been
studied at selected metropolitan and micropolitan statistical areas. In addi-
tion, there is the Community Health Status Indicators Project, developed by
the Department of Health and Human Services (U.S. Department of Health
and Human Services, 2009). This includes a health profile of over 3,000
counties in the United States and allows for a comprehensive and systematic
measurement of health across counties. This is an important effort for per-
formance monitoring and comparisons. Although these data are most useful
to compare health outcomes from BRFSS for different regions within the
United States, the utility of these data in guiding plans and policies at the
local community or neighborhood level is unknown.
360 IMPLICATIONS

Efforts put forth by the state of California are also noteworthy. UCLA’s
Center for Health Policy and Research in collaboration with the California
Department of Public Health, the Department of Health Care Services, and
the Public Health Institute conducts the nation’s largest state health survey:
the California Health Interview Survey (CHIS). It is conducted and funded
by various state and federal agencies along with several private founda-
tions. CHIS is an invaluable data resource used by researchers, advocates,
public health professionals, and others to understand the health of residents
in smaller geographic areas within the state at the county and health ser-
vices planning area. In addition, analyses of data for diverse populations by
race/ethnicity (Kagawa-Singer et al., 2007; Meng et al., 2007; Holtby et al.,
2008), age (Chen et al., 2005; Wallace, Lee, and Aydin, 2008), or immi-
gration status (Ortega et al., 2007; Wallace, Mendez-Luck, and Castañeda,
2009) are also available in numerous reports, journal articles, policy briefs,
and other publications (UCLA Center for Health Policy Research, 2009).
Results are used to guide local, state, and national health policies, and
impact at the policy level is most notable (UCLA Center for Health Policy
Research, 2009). In addition, efforts to utilize data as a tool for community-
level change have been exemplary. For example, data are available about
Los Angeles County’s Service Planning Areas and regional areas within
the county and are used to direct programs and resources to communities
most in need through formation of planning councils. In addition, there are
other public health programs, such as the Building Healthy Communities
Program funded by the California Endowment, that are organizing local
communities to create healthy environments and increase access to needed
health programs and services to address disparities in certain geographic
regions and ethnic groups.
Another example comes from Seattle. Seattle’s King County Department
of Public Health conducts a health survey every 3 years (http://communities-
count.org/) and analyzes data by region and Health Planning Areas, which
were defined in consultation with Department of Neighborhoods (Communities
Count, 2008). Results from these surveys have been used to guide planning
and community-based programs for improved health, such as Seattle Partners
for Healthy Communities and the Eastside Human Services.
In addition, sound work is taking place in New York City where they are
gathering local level health information and documenting disparities. The
NYC Department of Health and Mental Hygiene, Division of Epidemiology,
Bureau of Epidemiology Services conducts city-level health surveys (e.g.,
NYC Community Health Surveys and NYHANES) and provides data on the
health of New Yorkers, including neighborhoods within boroughs and city-
wide estimates on chronic disease and behavioral risk factors. In addition to
city-wide surveys, another local health survey conducted in Harlem found
 The Future Holds Promise 361

that the smoking prevalence there (42%) was notably different from the rate
in New York State as a whole (25%) and even the rate among non-Hispanic
Blacks residing in the state (25%) (Northridge et al., 1998). In this instance,
racial and ethnic smoking data at the state level did not reveal any differ-
ences, but locally there were serious disparities. These surveys allow us to
document disparities, which in turn enables local communities to take action
to improve matters.

Community-Based Interventions

A very important issue not discussed much in this book, but about which
we have learned a fair amount while participating in the projects described
in Section 3, is how to select the interventions that offer the most potential.
This is a topic we pursue now, finding helpful formulations in the work of
Geoffrey Rose.
In the 1970s and 1980s, several major community-based interventions
for improved cardiovascular health were put into place in the United States.
They are referred to as “community-based” because the goal was to alter
morbidity and mortality for the entire targeted communities rather than just
for sick or high-risk people. McLeroy and his colleagues present a helpful
delineation of the various definitions of “community-based” (McLeroy et
al., 2003). These projects were very well-funded and led by some of the best
epidemiologists and interventionists. Yet they failed rather substantially
(Susser, 1995; Merzel and D’Afflitti, 2003; Hawe, Shiell, and Riley, 2009).
Ansell (2010) summarizes these trials and the huge resulting literature that
emerged in the wake of these efforts. For quite a long time, such commu-
nity-based efforts were shunned but are now gradually making a comeback
and are growing in different areas, such as diabetes and HIV (Merzel and
D’Afflitti, 2003). This comeback is a positive development.

Geoffrey Rose: “Sick Individuals and Sick Populations”

Geoffrey Rose’s seminal work is a book entitled The Strategy of Preventive

Medicine (1992) and is a culmination of much of his earlier work (Rose, 1985;
Rose and Day, 1990). The central point of the book, that interventions are
often most effective if they focus on communities rather than individuals,
emerges from these basic observations:

1. In general, health conditions exist on a continuum in a population.

2. Medicine or health care pays most attention to a “disease” that is
defined as existing beyond a cut-point of the distribution in an extreme
362 IMPLICATIONS

tail (e.g., a fasting blood sugar level over 125 mg/dL indicates diabetes,
or a blood pressure level over 90/140 mm Hg indicates hypertension).
Rose referred to this as the “individual approach” or the “high-risk
strategy.”
3. Paying most (or all) of our attention to this extreme part of the distri-
bution does not allow us to work with the remainder of the population
to help improve its health and to truly prevent disease. Rose referred
to working with the entire distribution of people as the “population
approach” and urged consideration of the “continuum of risk.” This
theme was examined in one of his earlier papers entitled “Sick indi-
viduals and sick populations” (Rose, 1985).
4. Rose’s conclusion is that preventive medicine must embrace both of
these approaches that are each effective in different ways “… but, of the
two, power resides with the population strategy.”

There is very substantial literature discussing these formulations of Rose

(e.g., Charleton, 1995; Ebrahim and Lau, 2001; Schwartz and Diez-Roux,
2001; Weed, 2001; Doyle, Furey, and Flowers, 2006; Harper, 2009). Some of
these critiques agree with Rose, pointing us toward the “population strategy,”
and some disagree, favoring the “high-risk strategy.” These calibrations of
an optimal strategy, as absolutely essential as they are, nonetheless miss the
recurring theme of political necessity that courses through Rose’s book. This
theme is well worth pursuing.

Shifting Ideology
When trying to help improve the health of people in the community, we
believe that THE key task is to facilitate a shift from the community as
object (which doctors and public health professionals can act upon) to the
community as subject (which acts on its own behalf). The community will
only be genuinely engaged when this process is facilitated. Thus, for exam-
ple, if a community decides that it is interested in diabetes, as Humboldt
Park did (Whitman et al., 2010), or even if a community can be convinced
that it is in its best interest to focus its attention on diabetes, then the role
of public health professionals should be to offer technical assistance (e.g.,
medical or epidemiological) but to otherwise turn the issue over to the
community.
The goal here would be to arrange matters so that people in the commu-
nity talk to their family members and neighbors about diabetes much the
same way they always do about assorted other issues like the presidential
election, the death of Michael Jackson, or the fire that burned down a house
on the block. These discussions might involve, for example, diabetes-friendly
 The Future Holds Promise 363

cooking, the best way to be active, or how to check your blood sugar level
in the least painful way. We see this as a shift in ideology because mem-
bers of this vulnerable community, so often oppressed or acted upon, can
now be active participants in pursing and shaping their own health. This shift
will allow such “subject communities” to organize themselves in a manner
that will be able to mitigate risk factors, broadly defined, for morbidity and
mortality.
Thus, the community must be a genuine partner, preferably even
the leader, in such efforts. This, we believe, is the essence of effective
community-based work for improved community health. Further, we
believe failure to understand this is the main reason that the cardiovas-
cular interventions in the 1970s and 1980s failed. They simply did not,
in any meaningful manner, engage the communities in which they were
intervening. They communicated with the community, they used some
community institutions, and they distributed messages to the commu-
nity, but in the end they regarded the community as an object rather
than the subject, and thus these massive projects failed. This, by the
way, remains the leading dynamic to this day at many medical centers
across the country that aim to engage the community (because that is
required by multimillion-dollar translational research grants) but more
often only succeed in enraging the community.
In addition to helping improve health, such a shift in ideology will likely
work to improve other aspects of the community. For example, a community
organized for better health will also be able to use that empowerment to fight
for better housing or education, for example. Some view this as idealistic, not-
ing that such a view “… hinges on a romanticised view of certain communities
that, far from exhibiting potential for networks, exist on the edge of regular
conflict” (Doyle, Furey, and Flowers, 2006). We do not believe the ability to
empower vulnerable communities is “romanticized.” In fact, we believe it is
possible and necessary for improved health as well as for overall well-being.
Notably, this notion of shifting ideology and empowerment is fully consonant
with the concept of conscientization and genuine education put forward by
Freire and his colleagues (1976). This brings us back to Rose.

Rose and the Politics of Community Engagement

Rose finds his idea of the relationship of the “population strategy” to be

interconnected in many ways with the political dynamics of the commu-
nity. These ideas are stated with such clarity and eloquence that we quote
Rose extensively rather than paraphrasing him. The page numbers next to
the quotes are from the recently re-issued edition with commentary by Kay-
Tee Khaw and Michael Marmot (Rose, 2008).
364 IMPLICATIONS

1. “The visible tip of the iceberg of a disease can be neither understood

nor properly controlled if it is thought to constitute the entire problem”
(p. 45).
2. “… in order to grasp the principles of public health one must under-
stand that society is not merely a collection of individuals but is also
a collectivity, and the behavior and health of its individual members
are profoundly influenced by its collective characteristics and social
norms” (p. 96).
3. “Yet in truth the deviants are simply the tail of the population’s own
distribution; they belong to each other and society is one, whether it
likes it or not” (p. 99).
4. “This position [that individuals are solely responsible for their health
and their fate] conveniently exonerates the majority from any blame
for the deviants, and the remedy can then be to extend charity towards
them or to provide special services. This is much less demanding than
to admit a need for general or socioeconomic change” (p. 130).

In the end, Rose provides two overarching observations that we believe to

be essential:

1. “The aim of all of these endeavors is to help a vulnerable minority of

individuals. A rescue operation of this nature may be highly appropri-
ate, but it can no more solve the problem of mass diseases than fam-
ine relief can solve the problem of hunger in the Third World. The
strategy is symptomatic, not radical. The radical strategy is to identify
and if possible to remedy the underlying causes of our major health
problems” (Preface to the original edition, Rose, 1992).
2. Rose closes his book with these words: “The primary determinants
of disease are mainly economic and social, and therefore its remedies
must also be economic and social. Medicine and politics cannot and
should not be kept apart” (Rose, 1992, p. 161).

One reason why Rose’s political analyses are infrequently discussed

(Weed, 2001, being a prominent exception) may have to do with the follow-
ing quote of his:

“This prevalent view [that the majority has no responsibility for the deviants – ed]
may be convenient but it is based on a false assumption, as well as being manifestly
ineffective. As illustrated earlier in previous chapters, the ‘deviant tail of trouble
makers’ belongs to the parent population. The problem groups do not arise inde-
pendently … These are facts, and they imply that the occurrence of deviance and
its associated distress reflect population-wide characteristics, and hence that pre-
vention calls for acceptance of collective responsibility. As Dostoevsky wrote, ‘We
 The Future Holds Promise 365

are all responsible for all.’ The implications are unwelcome and most people reject
them. The population strategy of prevention involves an unpopular moral choice”
(Rose, 1992, p. 120).

Rose also begins his book with this quote from Dostoevsky, which clearly
has great meaning for him. Our main community partner in the work that
takes place in Humboldt Park (Whitman et al., 2010; Becker et al., 2010;
Martin and Ballesteros, 2010) is the Puerto Rican Cultural Center. Its
members are energetic in quoting the Puerto Rican national heroine, Dona
Consuelo Corretjer, as saying that one’s task is not “to live and let live” but
rather “to live and help to live.” What an interesting path it is that runs from
London to San Juan, from epidemiology to community activism.

Community Engagement
This, then, is the reason we find Rose’s theory so compelling, a theory that
can instruct us how to improve population health. Indeed, as Rose notes, it
is a radical approach, not a symptomatic one. It can lead us to the root of the
problem, and this is the direction in which our community colleagues have
led us. It is rather straightforward (“convenient,” Rose says) to treat individu-
als in our office, to abstract them from the community setting into a medical
center. And clearly there are many times when this is necessary and useful.
But it is not prevention. Prevention in the community requires the commu-
nity and will work best when it asks all to be responsible for all.

Making Things Better

There are any number of well-known quotations that call for action to
improve society, including those cited above of Dostoevsky (from The
Brothers Karamazov) and Corretjer. In this context, there have been wide-
spread discussions about whether it should be the goal of epidemiologists
to help to make things better by means beyond research, such as activ-
ism and/or involvement in more general public health efforts (Rothman
and Poole, 1985; Weed, 1999; Savitz, Poole, and Miller, 1999; Marks,
2009; Kreiger, 1999). This is an important question for the field to debate.
However, the larger question is not so much whether the task should be
left to epidemiologists, public health workers, or others but rather how
can we get it done. Consistent with this larger discussion is one of Karl
Marx’s best-known theses, that “The philosophers have only interpreted
the world, in various ways; the point, however, is to change it,” (Marx,
1845, re-published in 1959).
366 IMPLICATIONS

Changing the world, in however small a manner, was our goal when
we initiated Sinai’s Improving Community Health Survey. Our expectation
was that the data we gathered would be able to guide us through the morass
that is poor health caused by racism and poverty in many of Chicago’s
communities. It was not a secret that large disparities exist. We only had
to look out our windows (Whitman, 2001) or analyze life expectancy data
for different groups to appreciate this reality. We also had no interest in
implementing still one more study that would produce many more papers
and reports with no discernible impact on the lives of the people we wish
to serve.
Thus, once data were collected we knew that we had to gather resources in
an effort to make actual improvements. Out of this emerged the Sinai Model,
a model that has at its essence the dictums of Dostoevsky, Corretjer, and
Marx, a model that holds improved health as its goal. Thus far, our pursuit has
gone quite well. As the results from the interventions described in Section 3
emerge, some efforts appear to be changing important processes, some appear
to be changing important outcomes, and some appear to be ineffective.
Whether all of these interventions succeed or not, we are convinced that
the Sinai Model is an effective way to improve health in vulnerable commu-
nities and thus to reduce disparities, a proclaimed overarching goal of the
United States. We believe that the future holds promise, that the potential is
there if we pursue it. We also believe that looking away and walking away
from the problem will not make anything better. The problem has to be con-
fronted with energy and resources.
We hope this book has helped elucidate the issues of disparity and health
inequity as well as demonstrate a model that, if pursued in genuine part-
nership with community, might eventually lead to a long and healthy life
for all.

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INDEX

alcohol consumption, 321–22 Cambodian and Vietnamese

Jewish community, health profile of, Community Health Survey
86, 88 Instruments, 106–7
WIC clients, 159 challenges and lessons learned, 118–19
alcoholism program, 15 Chinese Health Survey Instrument,
Amendment to the Immigration and 105–6
Nationality Act (1965), 14 Community areas surveyed, 100–101,
arthritis, 45, 62–63, 82, 90, 357 127–28
Jewish community, 82 demographic characteristics, 108,
Arthritis Foundation of Chicago, 63 133–36
Ashkenazi Jews, 89 dissemination and reactions, 117
Asian Health Coalition of Illinois health outcomes, 108–17, 136–45
(AHCI), 98, 100–101, 103, 105–7, partnerships and funding, 100
109, 117–18, 128 (see also Asian questionnaire development and
communities, health survey of ) administration, 103–7
Asian communities, health survey sample selection, 100–102, 129
of (Chicago Asian Community Asian Survey. See Asian communities,
Survey) health survey of asthma (see also
administration of, 105–7 pediatric asthma)
analyses, 107–8 Jewish community, 82, 212, 213
background and rationale, 99 prevalence in Chicago, 251–53

371
372 INDEX

Behavioral Risk Factor Surveillance cancer prevalence, in Jewish

System (BRFSS), 32, 73, 103, 129, community, 82
137, 152, 225, 248 cancer screening
bipolar disorder, 82 Asian communities, 114–15
Black and Minority Health Report, colonscopy, 80, 114–15 (see also
19–20 colon cancer screening)
“blame-the-victim” ideology, 9 Jewish communities, 80
Block-by-Block Project, 241 (see mammography, 51, 114, 143–4
also Humboldt Park/West Town (see also breast cancer screening)
diabetes epidemic) Pap smear exams, 51–52, 80, 114
blood pressure (see also cervical cancer
African American communities, 53 screening)
Asian communities, 111–12 sigmoidoscopy, 80, 115 (see also
interventions, 313, 321–23, 338, 340, colon cancer screening)
344, 362 Sinai Survey communities, 50–52
Jewish community, 79–82, 90 Cardio Vascular Disease (CDV)
in women, 111 community-based intervention
body mass index (BMI) estimates, trials
321–23 comparison of first and second
Asian communities, 109–11, 172 generation trials, 315–16, 319–20,
Chicago communities, 64, 138–39, 324–26, 330–31
172 major trials of 1970s and 1980s,
Jewish children, 198, 207–8, 213–15 312–14
Puerto Rican community, 227 methodology and design, 314–18
Sinai Survey communities, 64 reason for failures, 327–32
breast cancer screening (see also cancer successes and failures of, 318–25
screening) Center of Epidemiologic Studies
comparison of Chicago communities, Depression Scale (CES-D), 75, 84,
143 103, 115–16
Breathing Freedom Program. See Centro Sin Fronteras (CSF), 63, 177, 190
smoking cessation intervention, in Cervical cancer screening, 115 (see also
North Lawndale cancer screening, Pap Smear exams)
Brown vs. Topeka Board of Chicago Asian Community Surveys
Education, 11 (Asian Survey). See Asian
communities, health survey of
Califano, Jr., Joseph A., 13–16 Chicago Community Trust, 58
California Health Interview Survey, 32 Chicago Defender, 155
Cambodian Association of Illinois, Chicago Community Areas
100–102 Albany Park, 101, 107, 127–28,
Cambodian community, 33 (see also 130–31, 134, 137, 139–45, 142–3
Asian communities, health survey (see also Asian communities,
of ) health survey of )
community area, 100–101, 127–28 Armour Square, 33, 100–102,
community partner, 100 104–5, 127–28, 130–31, 134, 137,
demographic profile, 108, 133–36 139–45, 142–3 (see also Asian
health outcomes, 108–17, 136–45 communities, health survey of )
 Index 373

demographic profile of, 41, 108, Chicago Public Schools Asthma

134–35, 259, 269 Management Project, 295–96
health outcomes, comparison of, 54, Child Nutrition Act (1966), 14
66, 81–85 Child Protection Act (1966), 14
Humboldt Park, 40–41, 44, 46, Chinese American Service League
48–49, 51, 53–56, 60, 62–65, (CASL), 100–101, 120
126–28, 130, 133–34, 136–40, Chinese community (see also Asian
142–43, 154, 171–95, 226, 228–35, communities, health survey of )
233–34, 236–38, 241, 251, 254, Armour Square Community Area,
285–305, 357, 362, 365 (see also 33, 100–102, 105, 127–35, 134,
Sinai Survey) 137–45, 142–43
North Lawndale, 40–41, 44, 46, Chinatown, 33, 100–102, 104–6, 112,
48-49, 51, 53–57, 63, 126–28, 130, 128–30
134, 136–45, 142–43, 151–65, 251, community partner (see Chinese
254, 257, 273–74, 356–57, 359 American Service League (CASL))
(see also Sinai Survey) demographic profile, 108, 133–36
Norwood Park, 40–41, 44, 46, health outcomes, 108–17, 136–45
48–49, 51–56, 126–28, 130, 134, Chinese Mutual Aid Association
136–40, 142–43, 153–54, 251, 254 (CMAA), 100–101
(see also Sinai Survey) cholesterol level, among U. S. Asians,
Peterson Park, 71, 78, 94, 128, 130, 111–12
136, 197, 213 (see also Jewish chronic health conditions
community, health survey of ) Asian communities, 138–44
racial and ethnic health disparities, Jewish community, 81–83
40–41, 128 Sinai Survey communities, 52–54
Roseland, 40–41, 44, 46, 48, 51, Ciclo Urbano, 183, 185, 194
53–56, 126–28, 130, 134, 136–40, City of Chicago’s Inter-Departmental
142–43, 153–54, 251, 253–4 (see Task Force on Childhood Obesity,
also Sinai Survey) 64
South Lawndale, 40–41, 44, 46, 48, “City of Neighborhoods,” 151
51–52, 54–57, 126–28, 130, 134, Civil Rights Act (1964), 14
136–44, 154, 159–60, 251, 254, colitis, 82
356 (see also Sinai Survey) colon cancer screening, 115
Uptown, 101, 103, 107, 127–28, “Commission for Health Parity for
130–31, 134, 137, 139–40, 142–3 African Americans,” 22
(see also Asian communities, community-based health intervention,
health survey of ) 361–65
West Ridge, 127–28, 134, 136–37, definition and terminology, 310–11
139–40, 142–3 (see also Jewish diabetes campaigns, 336–38
community, health survey of ) facilitating factors in, 343
West Town, 40–41, 44, 46, 48, 51, future prospects, 339–40
53–54, 56, 126–28, 130, 133–34, health promotion campaigns, 312–14
136–37, 139–45, 142–43, 153–54, HIV campaigns, 333–35
172–73, 175–76, 183, 226, 228–30, obesity campaigns, 338–39
238, 251, 254, 286, 289, 291 political dynamics of, 363–64
(see also Sinai Survey) rationale, 311–12
374 INDEX

community-based health intervention, Controlling Pediatric Asthma Through

(cont.) Collaboration and Education
recommendations, 340–43 (CPATCE), 266–71 (see also
smoking campaigns, 335–36 pediatric asthma intervention)
community-based organizations Corretjer, Dona Consuelo, 365
(CBOs), 99–100, 103, 110, 117–18, Crohn’s Disease, 82
163
Community Health Indicator Project, depression
32 Asian communities, 115–16
Community of Wellness, 65 Jewish community, 75, 83–85
Community Organizing for Obesity Sinai Survey communities, 53–54
Prevention in Humboldt Park diabetes (see also Humboldt Park/West
(CO-OP HP) Town diabetes epidemic)
challenges, 186–87 age-adjusted mortality rates, 225
characteristics of Humboldt Park, Asian communities, 141
173 (see also Chicago Community Jewish community, 82
Areas) in Mexican immigrant, 140–41
evaluation of, 186–90 racial and ethnic disparities, 139–40,
existing data on prevalence of 225
childhood overweight/obesity, 172 Sinai Survey communities, 53–54,
funding and partnerships, 176–75 336–38
interventions to improve local food in women, 110–11
access, 178–82, 183-86, 187–88, 194 Diabetes in Humboldt Park: A Call to
interventions to improve physical Action, 234
activity, 182–84, 187-89, 191, disabilities, Jewish community, 75, 85
194-95 domestic violence, 222
La Voz del Paseo Boricua (La Voz), Jewish community (see violence
184–85 experiences, of Jewish community)
lessons learned, 190–93 Dor Yeshorim, 89
obesity rates in Chicago’s drug usage, Jewish community, 86, 88
neighborhoods, 172–73 DuBois, W.E.B., 9–10, 23
origin, 173
Puerto Rican Cultural Center eating habits
(PRCC), role of, 173–74, 176, Asian communities, 110–11
178–80, 182–84, 186, 190, Jewish community, 86–87
193–95 Sinai Survey communities, 53
staff and volunteers, 174, 193
steering committee members, 175–76 family structure
strategies and philosophy, 184-85, Asian communities, 108
194–95 Jewish community, 77
complementary and alternative Food Stamp Act (1964), 14
medicine (CAM), 80–81 Freedom from Smoking model, 158
Consortium to Lower Obesity in
Chicago’s Children (CLOCC), genetic screening, of Jewish
63–64 community, 75, 89–90
 Index 375

Greater Chicago Food Depository Healthy Schools Campaign, 63

(GCFD), 181 heart disease
Greater Humboldt Park Community of among Jews, 82, 90
Wellness (GHPCW), 233–34 Asian communities, 111–12
asthma task force, 288–91 Hearts N’ Parks Survey, 207
“Great Society Movement,” 12–15 “Helping Mothers and Caregivers
Stop Smoking: A Client Service
HBV screening, 115 Guide for Case managers and
health-care access and utilization Nutritionists,” guide, 161
Asian communities, 113–15 hepatitis, 82
Jewish community, 75, 78–81 Hill, Lister, 11
Sinai Survey communities, 50–52 Hill-Burton Act, 11–12
health data HIV testing, 115
city of Chicago, 32–33 Asian communities, 114–15
local level, 32, 359–61 Sinai Survey communities, 55
health disparities Hoffman, Frederick L., 9
Asian community, 108–17, 136–45 Hood, Rodney G., 12
between Blacks and Whites, 8–9, 23, Hospital Survey and Construction
25–26, 328 Act.See Hill-Burton Act
in CVD mortality rates, 328–29 Humboldt Park community, 60–61,
among minority persons, 17–18, 65 (see also Chicago Community
328 Areas)
among Puerto Ricans, 285–88 Humboldt Park obesity initiative, 64
health education Humboldt Park/West Town diabetes
asthma, 261–63 epidemic
obesity, 205–6 community response, 233–37,
Health Resources and Services 243–44
Administration (HRSA), 17 data collection and analysis, 227
health risk factors, 45, 119 implications of disparities, 232–33
Sinai Survey, 54–56, 228 methodological issues of survey,
health status, of local communities in 231–32
Chicago. See Asian communities, mortality rates, 229
health survey of; Jewish press conferences and summits,
community, health survey of; Sinai 237–39
Survey prevalence rate, 227–29
health status indicators (HSIs), 18, 20, Task Force interventions, 239–43
23–24 hypertension
Healthy People Asian communities, 111–12
Healthy People 2000, 19–20 Jewish community, 82, 90
Healthy People 2010, 20–21, 24, 87 Sinai Survey communities, 53–54
Healthy People 2020, 24–25
Healthy People Consortium, 21 Illinois Childhood Obesity Prevention
“Healthy People” document, 16–17 Consensus Agenda, 64
Healthy People initiatives, 24, 31 Illinois Health Care Cost Containment
Healthy People 2000 Reviews, 20 Council (IHCCCC), 249
376 INDEX

Illinois Tobacco Quitline, 157, 162 health promotion seminars and

infectious diseases, public health activities, 206–7
initiative, 16 health-related outcomes, 208–15
insurance coverage intervention design, 204–7
Asian communities, 113 intervention process, 201–2
Jewish community, 137 nutrition-related knowledge of
among Mexicans (Sinai Survey), 137 students, 209–10
Sinai Survey communities, 52 parent survey, 212
partners, 202
Jewish children physical education (PE), 206, 213
“BMI-for-age” gender-specific charts, post-pilot activities, 215
198 school environment changes, 206,
distribution of weight status, 212–13
198–99 staff survey, 210–11
eating habits, 200–201, 209–10 student surveys, 209–10
perceived weight status, 199–200 Johnson, Lyndon Baines, 12
physical activity, 201, 210
obesity, 213–15 King, Jr., Martin Luther, 151
survey data of, 198 King County Report, 32
Jewish community, health survey Kosher, 77
of (Jewish Community Health
Survey) local area health surveys, 32, 129 (see
administration of survey, 72 also Asian communities, health
available health data, 69–70 survey of; Jewish community,
cooperation rate, 72–73 health survey of; Sinai Survey)
demographic characteristics, 74–77 comparison of Chicago community
dissemination and reactions to health survey methods, 130–32
survey, 91–92 rationale for, 38, 359–61
health outcomes, 73–90 Sinai Model, 33 (see also Sinai
interventions and uses of, 93 Survey)
partnerships and funding, 70–71
questionnaire development, 71 Malone-Heckler Report, on minority
rationale, 70 health status
response rate, 72–73 criticism, 18
sampling, 71–72 data by race/ethnicity, 17–18
weighting, 73 mortality rate, 17–18
Jewish Community Center (JCC), 77 recommendations, 19
Jewish Day School Wellness Initiative, marijuana usage, 75, 86, 88
198 Marx, Karl, 365
challenges and lessons learned, Master Settlement Agreement, 155
216–21 Medical Expenditure Panel Survey
evaluation process, 207–8 (MEPS), 137
funding, 202–3 Medicare/Medicaid Act (1965), 12
goals and objectives of, 201 mental health conditions
health education, 205–6 Asian communities, 115–16
 Index 377

Jewish community, 75, 83–85 Jewish community, 75, 83

Metropolitan Tenant’s Organization Sinai Survey communities, 53–54
(MTO), 272 Older Americans Act (1965), 14
Minnesota Healthy Heart Program Otho A. Sprague Foundation, 64
(MHHP), 314, 323
minority health status Pap smear exams. See cancer
Malone-Heckler Report, 17–18 screening
Office of Minority Health, Parents United for Healthy Schools/
establishment of, 18–19 Padres Unidos para Escuelas
¡Muévete!! (Move!) intervention. See Saludables Coalition, 63
CO-OP HP Pawtucket Healthy Heart Program
(PHHP), 314, 323
National Association for the pediatric asthma
Advancement of Colored People burden and control, 253–55
(NAACP), 13 community factors, impact of, 295
National Center for Health Statistics data collection and analyses, 249–51
(NCHS), 17 (see also Sinai Survey)
National Health and Nutrition emergency department (ED) visits,
Examination Survey (NHANES), 248
103 environmental factors, 286
“National Healthcare Disparities epidemiology, 247–48, 285-88
Report” (NHDR), 21–22 hospitalizations, 248
National Health Interview Survey intervention outcome data, 260
(NHIS), 103, 129, 137, 248 interventions (see pediatric asthma
National Health Promotion and Disease intervention)
Prevention Objectives for 2020, media coverage, 274–75
24–25 prevalence of, Sinai Survey
National Hospital Ambulatory Medical communities 53–54
Care Survey (NHAMCS), 249 self-management beliefs and
National Institutes of Health (NIH), 17 practices in Puerto Rican families,
National Jewish Population Survey 297–300
(NJPS), 73, 75, 77 pediatric asthma intervention (see also
National Medical Association (NMA), 10 pediatric asthma)
recommendations for health equity, 22 Chicago Asthma Action Plan, 256
National School Lunch Act (1968), 14 Chicagoland Asthma Network
Negro Health Week, 10 (CAN) Humboldt Park Town Hall
New York City Community Health Meeting, 296–97
Survey, 103 Chicago public school projects for
nicotine replacement therapy (NRT), prevention of, 295–96
157, 159 Community–Academic Partnership
North Karelia Project (NKP), 313 for Asthma Control in Humboldt
Park, 291–95
obesity characteristics, participant
Asian communities, 109–11, demographics, and baseline data,
138–39 259, 269
378 INDEX

pediatric asthma intervention (cont.) diabetes prevalence and mortality(see

Community Health Worker (CHW) Humboldt Park/West Town
Model, 257, 260–61, 266–67 diabetes epidemic)
Controlling Pediatric Asthma
Through Collaboration and quality of life, of Asian community, 116
Education (CPATCE), 266–71 Quit Kits, 157, 162
experiences in Humboldt Park
(Puerto Rican community), 303–5 religious characteristics, of Jewish
Greater Humboldt Park Community community, 77–78
of Wellness (GHPCW) task force, Respondent Driven Sampling Analyses
288–91 Tool (RDSAT) version 5.6, 108,
Healthy Home, Healthy Child: The 133
Westside Children’s Asthma Resurrection Project, 63
Partnership (HHHC), 271–75 Robert Wood Johnson Foundation,
National Institutes of Health (NIH)- The, 3–4, 38–39, 58, 60, 126,
funded intervention, 291–93 294–95
Pediatric Asthma Caregiver’s Quality Rose, Geoffrey, 361–65
of Life Questionnaire, 264 Ruth M. Rothstein CORE Center,
Pediatric Asthma Intervention-1 158–59
(PAI-1), 257–62
Pediatric Asthma Intervention-2 School Health Index, 207–8, 212
(PAI-2), 262–66 Seattle-King County Healthy Homes
Project CURA trial, 300–303 (SKCHH) Phase I, 271
physical activity Second Great Migration, 151
interventions for obesity, 182–84 self-rated health, of Jews, 81
Jewish community, 86–87, 201, 210 Simkins v. Moses H. Cone Memorial
Producemobile program See CO-OP Hospital, 11
Humboldt Park Sinai Asthma Education Training
Project CURA trial, 300–303 Institute (SAETI), 267
Prostate cancer screening, 80 Sinai Community Institute (SCI), 39,
Public Health Foundation, 17 155
public health improvement efforts, Sinai Model for Reducing Health
365–66 Disparities and Improving Health,
public health professionals, role in 7, 99, 145, 149–50, 243, 267,
health improvement, 362–63 270–75, 277, 356–57
Public Health Service Act Section 308, Sinai’s Improving Community Health
13 Survey. See Sinai Survey
Puerto Rican Cultural Center (PRCC), Sinai’s Improving Community Health
65, 173–74, 176, 178–80, Survey, Report 1, 58, 64
182–84, 186, 190, 193–95, Sinai Survey communities. See Chicago
233–34, 298 Community Areas: Humboldt
Puerto Rican population, 33 Park, North Lawndale, Norwood
body mass index (BMI) estimates, Park, Roseland, South Lawndale
227 and West Town
diabetes mortality rate, 229–30 Sinai Survey, 355
 Index 379

administration of, 47–48 community impact and lessons

committee participants and learned, 165–67
organizations, 42 community interventions, 155–57
communities surveyed, 40–41, 46 counseling services, 158
contact rate for, 49–50 free nicotine replacement therapies
cooperation rate for, 49–50 (Quit Kits), 157–58
data analysis, 50 Illinois Tobacco Quitline (Quitline)
demographic characteristics of, campaign, 157
134–36 media campaigns and public
dissemination of data and education, 157
information, 58–65 media coverage, 155
funding, 38–39 outcomes, 161–65
health outcomes, 50–58, 63, 64, 288 for pregnant women, 159–61
goal, 356–57 prevalence, 152-54
impact of, 58 promotional ads, 164–65
instrument topics, 43-45 reminder systems and
interviewer profile, 48 pharmacotherapy, 158
lessons learned from, 65 at Ruth M. Rothstein CORE Center,
methodology, 39–50 158–59
media coverage, 59, 64 Sinai Health System programs, 155
partnerships and funding, 38–39 smoking data publication, 64
presentations on, 59 social desirability bias, 87
rationale for, 38 social epidemiology, 10, 84, 103, 115,
reactions to dissemination activities, 145, 247–48, 312, 360, 365
63–65 Social Security Amendments (1965), 14
reports and publications, 62–64 Stanford Five-City Project (SFCP), 314,
response rate for, 49–50 321
sample selection, 44–47 Stanford Three-Community Project
Survey Design Committee, 42 (STCP), 313
survey development process, 42–44 Strategy of Preventive Medicine, The
Sinai Urban Health Institute (SUHI), (Rose), 361
4–6, 226 Survey Research Laboratory (SRL), 39,
smoking behavior 66, 71–72, 95, 105, 120
Asian communities, 111–15, 142
and asthma, 253–54 Tay-Sachs disease, 89
community-based smoking cessation Translational research, 5, 363
initiative, 155–67 Trodahl–Carter–Bryant methodology, 46
Jewish community, 86–88, 142 Tsou, Walter, 22
in men, 142 tuberculosis, 82
Sinai Survey communities, 55, 142,
152–55 U.S. Department of Health, Education
in women, 112, 153, 165 and Welfare (USDHEW), 13
smoking cessation intervention, in U.S. Department of Health and Human
North Lawndale Services (USDHHS), 16
behavioral change model, 161 U.S. health care system, 12–13
380 INDEX

Vietnamese population, 5, 33, War on Poverty Programs, 14

98, 128–35, 136 (see also Washington, Booker T., 10
Asian communities, health Washington County Asthma Coalition,
survey of ) 268
demographic profile, 108, 133–36 Women, Infants, and Children (WIC)
community area, 101 program, 155, 159–61, 267
community partner, 100 women and healthcare utilization, 15, 20
health outcomes, 109–15, cancer screening, 23, 51–52, 80,
136–44 114–15, 143–44
violence experiences, of Jewish Chicago neighborhoods, 52
community, 75, 88–89
Vocational Education Act (1963), 14 Youth Risk Behavior Surveillance
Voting Rights Act (1965), 14 System (YRBSS), 207