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Key Issues in Outcomes Research: Community-Based Participatory Research From The Margin To The Mainstream

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66 views11 pages

Key Issues in Outcomes Research: Community-Based Participatory Research From The Margin To The Mainstream

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Key Issues in Outcomes Research

Community-Based Participatory Research From the Margin


to the Mainstream
Are Researchers Prepared?
Carol R. Horowitz, MD, MPH; Mimsie Robinson, MA, MPS; Sarena Seifer, MD

Abstract—Despite an increasing arsenal of effective treatments, there are mounting challenges in developing strategies that
prevent and control cardiovascular diseases, and that can be sustained and scaled to meet the needs of those most
vulnerable to their impact. Community-based participatory research (CBPR) is an approach to conducting research by
equitably partnering researchers and those directly affected by and knowledgeable of the local circumstances that impact
health. To inform research design, implementation and dissemination, this approach challenges academic and
community partners to invest in team building, share resources, and mutually exchange ideas and expertise. CBPR has
led to a deeper understanding of the myriad factors influencing health and illness, a stream of ideas and innovations, and
there are expanding opportunities for funding and academic advancement. To maximize the chance that CBPR will lead
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to tangible, lasting health benefits for communities, researchers will need to balance rigorous research with routine
adoption of its conduct in ways that respectfully, productively and equally involve local partners. If successful, lessons
learned should inform policy and inspire structural changes in healthcare systems and in communities. (Circulation.
2009;119:2633-2642.)
Key Words: community-based participatory research 䡲 healthcare disparities 䡲 collaboration

I n recent decades, efforts to improve health have concen-


trated in academic institutions, producing outstanding ba-
sic science and clinical investigators and clinicians through
with inside experts, community members who live with the
problems being studied. In this way, they are embodying the
kind of local voice, participation, and action that can ignite
well-established training, research, and clinical programs. new initiatives and approaches and lead to sustainable long-
Without question, the effective therapies developed and term results.6,7
tested through research and disseminated through ever- Community-based participatory research (CBPR) engages
improving quality of care have significantly contributed to the multiple stakeholders, including the public and commu-
the improving life expectancy of Americans of all racial and nity providers, who affect and are affected by a problem of
ethnic backgrounds. Yet, these diagnostic and therapeutic concern. This collaborative approach to research equitably
breakthroughs and unprecedented healthcare spending have involves all partners in the research process and recognizes
not eliminated health disparities for the majority of health the unique strengths that each brings.8 CBPR begins with a
conditions, even among populations with equal access to research topic of importance to the community and aims to
care.1 Nor have they reversed the poorer health of Americans combine knowledge with taking actions, including social
compared with people in other nations who spend far less on change, to improve health.9
health services.2,3 Let us, for example, examine hypertension. Despite scores
Scientists and healthcare providers have begun to recog- of research studies addressing hypertension management, its
nize that prevention and control of complex conditions, prevalence is increasing, and two thirds of those diagnosed
including cardiovascular diseases, necessitate assessing and are not controlled.10 Blacks have a higher prevalence of
addressing the array of nonclinical issues not traditionally in hypertension and its adverse outcomes, are more intensely
their purview. These social determinants of health are the treated for it, and yet are more poorly controlled.11 Com-
social, economic, political, and environmental conditions to monly described barriers to control include individual, clini-
which a great share of health problems are attributed.4 cian, and systems problems (ie, medication adherence, phy-
Researchers, outside experts, also are rejecting the idea that sician practice patterns, access to care).12–15 More recently,
scientific objectivity demands creating a distance between investigators have described environmental factors such as
themselves and their research subjects5 and are partnering living in a neighborhood with poorer safety, walkability,

From the Department of Health Policy, Department of Medicine, Mount Sinai School of Medicine, New York, NY (C.R.H.); Bethel Gospel Assembly,
Harlem, NY (M.R.); and Community-Campus Partnerships for Health, Department of Health Services, University of Washington School of Public Health
and Community Medicine, Seattle (S.S.).
Correspondence to Carol R. Horowitz, Mount Sinai School of Medicine, 1425 Madison Ave, New York, NY 10029. E-mail [email protected]
© 2009 American Heart Association, Inc.
Circulation is available at http://circ.ahajournals.org DOI: 10.1161/CIRCULATIONAHA.107.729863

2633
2634 Circulation May 19, 2009

social cohesion, and food availability that correlate with a Table 1. Characteristics of CBPR
higher prevalence of hypertension.16 The fact that our increas- Community members and researchers contribute equally and in all phases
ingly sophisticated understanding of factors contributing to of research
adverse outcomes is accompanied by a failure of current Trust, collaboration, shared decision making, and shared ownership of the
approaches to widely prevent or control hypertension begs research; findings and knowledge benefit all partners
new approaches. CBPR may uncover new reasons for poor Researchers and community members recognize each other’s expertise in
control, ways to more effectively address factors correlated bidirectional, colearning process
with poor control, or develop completely novel clinically or Balance rigorous research and tangible community action
community-based initiatives.
Embrace skills, strengths, resources, and assets of local individuals and
Although many academics are concerned about shrinking organizations
opportunities and overwhelmingly competitive hurdles to
Community recognized as a unit of identity
funding and publishing their work, CBPR is a new and
Emphasis on multiple determinants of health
expanding frontier, particularly in newer areas of focus such
as cardiovascular research. Emerging evidence of CBPR Partners commit to long-term research relationships
generating new ideas and approaches, a host of CBPR Core elements include local capacity building, systems development,
fellowships and training programs, well-established and new empowerment, and sustainability
journals interested in publishing CBPR, and emerging paths
for academic advancement have piqued interest in this ap- they need, combining arguments based on evidence and
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proach.17,18 The National Institutes of Health is helping blaze ethics: doing what works and doing what is right. Scholarship
the trail with its new focus on translational research, an and community action are not an either-or; they go hand in
increasing number of funding applications that require par- hand. Resulting grants and publications are midpoints on a
ticipatory research, special CBPR review panels, and a path that encourages researchers to reflect with community
National Institutes of Health–wide Scientific Interest Group partners on how to use the knowledge gained to directly,
(including the National Heart, Lung and Blood Institute) that meaningfully, and sustainably benefit the community being
aims to increase awareness, career development, use, and studied.
funding vehicles for CBPR.19,20 Community members are Community should be interpreted broadly as all who
increasingly serving as reviewers on study sections and for will be affected by the research. It could be geographic (ie,
peer-reviewed journals, so their priorities and visions will a “hot spot” of poorly controlled hypertension); a group
help form the future of research. with a common identity, illness, or situation (ie, an ethnic
Translational research signifies a progression in research in or practitioner group or homeless men with hypertension
2 blocks. T1 translates basic understandings of disease and depression); or a community group with specific
mechanisms into the development of new methods for diag- concerns or interests (ie, a coalition of churches concerned
nosis, therapy, and prevention in a preclinical realm. T2 about increasing stress and its correlates, including hyper-
translates results from studies into routine clinical practice tension, among parishioners). Many factors influencing
and decision making.21 CBPR may be the ultimate form of health are beyond the scope of any single intervention but
translational research, sometimes labeled T3, moving discov- are embedded in specific communities that each have a
eries bidirectionally from bench to bedside to el barrio (the specific set of resources and characteristics.25 It is within
community) to organizations and policy makers. CBPR’s this community context that participatory research takes
time has come. For readers who aim to begin new partnered place.
research programs or are already conducting clinical and
translational research and want to benefit from this approach, What Is Different About a CBPR Approach?
we introduce CBPR, its benefits, and its challenges and Nyden 26 compares traditional research with an old-
provide concrete steps for how to proceed, using hypertension fashioned marriage, one in which the husband (like the
research as an example. university) has more power and control over resources and
decisions than the wife (or community). CBPR, in contrast,
What Is CBPR? resembles a more modern, egalitarian marriage in which
CBPR is an approach or orientation to conducting research, the 2 partners (akin to researcher and community member)
not a method. As summarized in Table 1, it provides a recognize and build on each other’s strengths and share
structure and mechanism for collaborative and rigorous re- resources and responsibilities. Women’s rights and their
search, using well-established or emerging methods, with a contributions have evolved from being discounted to
community focus. CBPR challenges researchers to listen to, having an essential and unquestioned value. Similarly,
learn from, solicit and respect the contributions of, and share there has been a fundamental shift in academics’ views of
power, information, and credit for accomplishments with the people in communities from patients and research subjects
groups that they are trying learn about and help.22,23 Mutually who are beneficiaries of medical advances and care to
respectful relationships, shared responsibilities, and an em- invaluable partners and experts who can shed light on the
phasis on local capacity building can promote environments root causes of illness and galvanize their communities to
in which communities increase their ability to uncover local develop effective, novel, sustainable interventions to im-
barriers and harness local assets to build healthier neighbor- prove health and eliminate disparities. Just as it is difficult
hoods.24 Communities can be armed to advocate for what to conceive of improving clinical care without substantive
Horowitz et al CBPR: Challenges and Rewards 2635

Table 2. Traditional Research vs CBPR


Research Phase Traditional Approach CBPR Approach
Formative stage Researchers plan project and form team, including C&A partners plan project, form team, and develop shared
researchers, staff, clinicians mission and decision-making structure
Study selection/design Researchers choose topic and design based on C&A partners also incorporate community priorities,
scientific theory, academic interest, evidence, data, insights, and assets, emphasizing rigor and community
and methodological feasibility feasibility, acceptability, context, cultural factors, and local
knowledge
Funding Grant written by researchers; funds go to C&A partners codevelop grant and equitable division of
researchers funds based on contributions to project
Implement study, analyze and interpret Researchers solely responsible for study conduct C&A partners collaborate on all efforts; traditional analysis
data and analyses supplemented with community-driven questions and local
relevance of findings
Disseminate Findings Disseminate to academic audiences C&A partners are coauthors and copresenters,
disseminating to academics, research participants, involved
communities, and policy makers
Translate research into practice and Research often ends with publication of results C&A partners mobilize the community to use findings to
policy advocate for policy change, enhance local resources, and
improve local practices
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Sustain team, benefits, and resources When grant ends, researchers often move to new Sustainability built into work from inception; partners honor
project initial commitment to continue partnership and work
beyond funding cycle
C&A indicates community and academic.

clinician involvement, participatory researchers consider it Need for Insider Perspective


difficult to conceive of improving the health of communi- Many programs to improve health are developed by and
ties without substantive and sustained community are from the viewpoint of persons outside the target
involvement. communities. Interventions created solely by outsiders
Great diversity exists within both traditional research and may perpetuate the inequalities that researchers aim to
CBPR, but Table 2 outlines some common distinctions address, create an atmosphere that discourages community
between these approaches. Participatory projects incorporate experts from sharing invaluable perspectives and ideas,
various degrees of partnership in project development, de- and thwart entry of researchers and their work into
sign, implementation, evaluation, and dissemination. How- communities.30 To improve hypertension outcomes, inter-
ever, CBPR should be clearly distinguished from community- ventions will likely need to affect clinicians’ practicing
placed research, located in but not significantly involving the styles or patterns; the beliefs, behaviors, or environment of
persons with hypertension; or coordination of care.31
community, with the result that community representatives
Including these “targets” as partners may facilitate re-
are passive participants in studies, react to researchers as part
search. Who would know better whether the research
of community advisory boards, or merely assist with recruit-
methods and tools are sensible and engaging and how to
ment. As partnered research proceeds, lines between re-
structure recruitment so that participants want to take part
searcher and research subject become blurred. Academics than those very targets?
become part of the community, and community members
become part of the research team.27 Opportunity for Novel Partnerships
Numerous large-scale community development programs and
Why Is a New Approach Needed? policies are in place that aim to address nonmedical factors
such as improving local services, housing, education, or
Failure of Current Approaches safety. Most do not focus on or measure their impact on
Despite the large body of research documenting racial and
health.32,33 Researchers may not yet recognize the tremendous
ethnic and socioeconomic disparities in life expectancy, impact that developers and policy makers have on commu-
health care, and health across a wide variety of different nities and are therefore missing significant opportunities to
conditions, interventions to improve health have lagged work together to address health in novel ways.34 The public
behind.28,29 The few successful interventions often disap- health community has not yet risen to the challenge of
pear with the cessation of the funding used to document bridging healthcare delivery and communities in need.35
their effectiveness. CBPR offers a new approach. In the CBPR may allow the use of “hybrid” approaches that
case of hypertension, our ability to diagnose and prescribe empower and mobilize community resources and residents
effective medications is outpaced by the rapid rise in and simultaneously implement systematic and clinically
prevalence of hypertension and the low rates of blood sound approaches to the prevention, promotion, and treat-
pressure control, even among persons who regularly visit ment of hypertension and other common health prob-
clinicians. lems.36 Recent initiatives include screening for hyperten-
2636 Circulation May 19, 2009

sion in barbershops, designing buildings to foster health, Table 3. Potential Benefits of CBPR
and offering job training and housing services to help
Formative stage
control blood pressure in black men.37–39
Diverse skills, knowledge, and expertise lead to new hypotheses and
approaches
Chance to Build Trust and Generate Ideas
Community members may have a “healthy paranoia” of Enhanced trust and sharing ideas between communities and researchers
researchers and outside organizations, given a history of Researchers gain entry into communities
racism, marginalization of minority communities by health- More accountability of researchers to communities they study
care systems, and past experiences of having researchers Study design
enter communities or health centers, collect data, provide no Increased relevance of research questions, data, and programs devised
direct benefits, and leave without giving feedback or taking and implemented in concert with those directly affected by the disease
noticeable actions.40 Negative perceptions of research and Greater community interest and support
researchers have led some community leaders to decline to Increased likelihood high-priority issues addressed in a manner that
work with researchers and public health workers on so-called recognizes and incorporates key contextual factors and influences outside
“helicopter projects,” or “drive-by research.” Researchers are the clinical setting
naturally loath to share ideas and strategies with colleagues Funding, implementation, analysis
they do not trust. Similarly, if community members are to Funded research may enhance local capacity, assets, and sustainability
share their ideas and strategies with researchers, they will
Improved quantity, quality, validity, and reliability of data
need to have confidence that researchers will use the ideas
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Novel approaches to recruitment, retention; participants want to be part


wisely and in partnership with local individuals. Community
of studies
participation can help ensure that study goals are relevant to
New analytic questions posed by community, more accurate and
the population; that the means of accomplishing them are
culturally appropriate interpretation of findings
sensible; that the program considers the knowledge, attitudes,
Dissemination
beliefs, and practices of the target group; and that results are
shared, sustained, and used for the good of the community Enhanced relevance and usefulness of data for all partners
(Table 3).6 – 8 Researchers will have hypotheses of what will Fundamental fairness of sharing research findings with subjects and
improve hypertension outcomes. However, it may prove community members
difficult to develop effective, durable interventions targeting Community and academic partners gain expertise through collaborative
clinicians or patients, both of whom may be skeptical of writing and presenting
initiatives developed without their input and therefore may be Translation, sustaining
hesitant to provide crucial feedback and use their influence to Research more likely leads to tangible health and community benefits
institutionalize successful programs. Build infrastructure to maximize impact of research and capitalize on
benefits beyond specific project
Is CBPR Effective? Improved sustainability, dissemination, replication, and policy impact;
Because the use of CBPR in cardiovascular research is relatively benefits outlast research
new, studies that address health outcomes are just beginning. To Strengthen research and program development capacity of all involved
date, research has been primarily focused on prevention and Additional funds, research, and employment opportunities
promotion (ie, through lifestyle changes and via lay educators),
uncovering barriers to care and self-management, and develop-
ing culturally appropriate programs.41– 48 More generally, CBPR tory approaches to research will be more frequently and
succeeds in the following: rigorously tested.

● Developing and sustaining trusting community-researcher Conducting CBPR


relationships.8,49 –52 Here, we detail steps for conducting CBPR, following the
● Enhancing community input, building community capac- outline in Table 2. Most steps are applicable for researchers at
ity, expanding local resources, and bringing forth a robust any point along the CBPR continuum, from just beginning to
social justice agenda.8,24,32,53 incorporate substantive partnership into their existing work
● Sparking novel ideas and approaches, facilitating interven- through academic-community partnerships that begin a study
tion development and community buy-in, and recruiting as equals. It is rarely too late to incorporate community input.
and retaining study participants who have historically been Even when a study is already underway, community input can
underrepresented in research.54 –56 enhance its relevance, feasibility, impact, and sustainability.68
● Assessing barriers to and assets for achieving better At all stages, researchers should reflect on what parts of their
health.57– 61 research are amenable to adaptation and candidly explain to
● Disseminating findings and translating research into community partners any constraints they may have. For
changes in practice and policy.62,63 example, if enrollment in a study is underway and the design
● Improving health outcomes.38,45,46,64 – 67 cannot be changed, there may be ample room for improve-
ments in recruitment, retention, analysis, and dissemination.
Earlier CBPR trials often lacked strong evaluative compo- And, at any stage, there can be joint ownership of those
nents,51 but evidence of the effectiveness of CBPR is grow- aspects of the study (if not the entire study) that are the fruits
ing. As funding and training opportunities expand, participa- of collaboration.
Horowitz et al CBPR: Challenges and Rewards 2637

Formative Stage: Team Building or people at risk for hypertension. A relationship may begin
CBPR emanates from community members who approach when academics volunteer at a local screening or when a
academics with a problem or idea, academics who approach leader of a neighborhood coalition approaches a hospital
community members, or existing partnerships. To form outreach worker with concerns about increasing numbers of
teams, researchers must supplement their scientific skills with adults with cardiovascular disease. A clinician could become
humility, patience, curiosity, interpersonal skills, and the curious about the potential for others such as home attendants
abilities to mentor, inspire, share control, and focus on to improve adherence to medications or medical visits among
community concerns. Researchers need to rely on community those with uncontrolled hypertension. These encounters can
partners to teach them about the community and point out if lead to the sharing of ideas, building of relationships, and the
they inadvertently offend or discount community decision to move forward with a research idea or use the new
partners.8,56,58,59 relationship to modify research in development or in
progress.
Building a Partnership
Researchers can turn to people in their institutions with Study Selection and Design
existing partnerships (academics, educators, or individuals in Together, partners determine research questions or modify
community outreach units) for guidance and introductions to existing questions based on joint interest and expertise. In a
the community. Extrainstitutional resources—local public “best of both worlds” scenario, academic expertise ensures
health units, organizations, agencies, and coalitions with that studies are designed and implemented to rigorously test
interests that may intersect those of a researcher—also are hypotheses and to incorporate state-of-the-art evidence-based
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assets. Partnerships commonly form boards whose size and practices. Community experts generate new hypotheses and
composition vary and may include a combination of grass- new intervention ideas and guide recruitment and retention
roots citizens/front-line clinicians and representatives of strategies that ensure robust participation and take into
organizations.69 account social, cultural, economic, and practical realities of
Generally, partnerships have members that represent the potential participants. There will be compromises. If commu-
spectrum of age, race, ethnicity, gender, socioeconomic nity partners want to offer interventions that, unbeknownst to
status, and levels of power in a community and have specific them, have been proven ineffective,73 academics can suggest
interest or expertise relevant to the chosen topic or focus. testing new ideas or adapting the intervention to address
Boards need members with sophisticated understanding of earlier shortcomings. If academics want to conduct a random-
and influence in the community and who will be doers, not ized controlled trial, community members may suggest offer-
just thinkers. Community partners include the following: (1) ing the control group a deferred intervention. Community
bridge builders, who have experience with research and partners have introduced novel hypertension research de-
community cultures and can moderate, mediate, interpret, and signs, including creating a community-generated documen-
mentor others; (2) bringers, who help identify new members tary about problems with hypertension control; creating data
or resources that can benefit the project; and (3) historians, maps about prevalence, outcomes, and local factors to be
who understand the neighborhood, its culture, its traditions, used for research and advocacy; screening children to identify
and the myths that guide behaviors and thus can shed light on families at increased risk for hypertension; and structuring
the challenges of improving health. Envision broadly all curriculum for lay health education and multimedia commu-
people who could influence the development or control of nity interventions.42,74 –77
hypertension within a given target population, just as one
would if conducting a quality improvement initiative. The Funding and Ethics Review
board for the project would include just such people. Grant writing should be collaborative. Community members
who are involved with the grant from its very inception will
Developing a Structure and Rules of Operation accurately state “We got the grant” instead of “They got the
and Decision Making grant,” which can lead to a cascade of ideas and active
Key community and academic leaders steer the development support. CBPR grants contain flexibility for developing and
of rules and operating procedures to promote coalition effec- testing ideas that emanate from the partnership. Researchers
tiveness.6,69 The group must have regular, transparent com- often expect that to receive funding, every step of a grant
munication and agreed-on goals, roles, and rules of engage- must be planned out with great specificity. However, there
ment.27 Conflicts and disputes are inevitable and should be are opportunities to be funded to conduct CBPR when the
seen as necessary elements of growth.58 Many partnerships process is very clearly outlined, but there is room to take
form subcommittees to work on specific tasks such as different directions based on earlier work.
community engagement and evaluation. Partners have equal In terms of budgeting, community partners should receive
power for making decisions and planning all activities. Some financial and other resources that facilitate their participation,
groups take years of negotiations with a very strong focus on just as their academic partners do.8 When possible, research
process.70 Others adapt principles of engagement developed assistants should be recruited from within the community
by experienced groups71,72 and are action oriented from their under investigation. Community members also can suggest
inception. suitable stipends for research participants that are appropriate
In the case of hypertension, researchers could approach but not coercive. Through funding personnel and programs,
clinicians, lay health workers, individuals with hypertension, researchers are building and enhancing community capacity
2638 Circulation May 19, 2009

Table 4. Federal Funding Sources for CBPR* ers’ confidence in conducting traditional studies should not
Centers for Disease Control
preclude leaving ample room for community partners to steer
the process.58 Community-based recruiting, for instance, may
Prevention Research Centers
be far more successful when people within local organiza-
Racial and Ethnic Approaches to Community Health Programs (REACH)
tions introduce the research and its potential benefits to
National Institutes of Health people in their own organization, church, or hospital, who
National Institutes of Health-wide funding announcements explicitly already know and trust them, than if researchers try to garner
supporting CBPR interest at the site.56
Agency-wide scientific interest group on CBPR All partners should agree on goals and tools to evaluate
National Institutes of Health Roadmap emphasizes CBPR to accelerate processes and outcomes.8 Process evaluation may use quali-
clinical and translational research tative methods (ie, interviews, focus groups) and quantitative
Clinical and Translational Science Awards require community engagement methods (ie, surveys) of partners, community members, and
component others affected by the work. In this way, coalitions have
National Center on Minority Health and Health Disparities has Office of documentation of their activities and can carefully and
CBPR and Outreach and several active CBPR funding mechanisms critically reflect on their work.6
Agency for Healthcare Research and Quality
Housing and Urban Development Disseminate Findings and Translate Research
Environmental Protection Agency Into Policy and Practice
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*Funding updates for federal, regional and foundation grants available at CBPR findings are disseminated by and to all partners.
http://depts.washington.edu/ccph/fundingopps. html (CBPR grants listed) and Academic and community authors and presenters learn how
http://www.grants.gov (federal funding opportunities). to communicate effectively with each other’s audiences,
expanding their insights, further strengthening relationships,
and assets. Funding agencies are increasingly investing in and opening avenues for collaboration and sharing ideas.
CBPR (Table 4). Such efforts equip all partners to conduct future research. It is
Principles guiding the Institutional Review Board may not important to share results with scientific audiences through
cover the scope of ethical considerations that arise in CBPR.78 presentations and peer-reviewed publications. CBPR chal-
It is incumbent on CBPR researchers to initiate a discussion lenges partners to expand this traditional dissemination 3
with their Institutional Review Board before submitting a ways.
proposal for review and to use the proposal as a tool for
Community Input in Dissemination
educating Institutional Review Board members about CBPR.
Community members should play a key role in the analysis
Researchers also should be aware that community groups are
and interpretation of data, presentations, and manuscript
increasingly establishing their own ethics review processes
preparation and in determining how the results will be
that may need to approve a study. For example, a study may
distributed.80 If partners view the process as creating rather
envision having a community board decide the optimal way
than writing, the role of partners with essential insights and
to recruit patients to a study in which peer educators provide
contributions but less comfort writing is clear, and their
a lifestyle intervention for weight loss. In this case, funding
participation can be encouraged through having manuscript
will need to be flexible to allow emergent strategies such as
preparation meetings, having note takers, or recording and
hosting recruitment parties and church breakfasts,55 and
transcribing their words.
researchers will need to work with the Institutional Review
Board to understand and approve the processes as they Local Dissemination
emerge. Partners should disseminate findings to the communities
where the research was conducted, to other communities, and
Research Conduct and Analysis to the research subjects themselves, who deserve to know
Different stakeholders often take leads in different phases of what was learned from the study in which they took part.
research. If a survey about the reasons for adherence to Feedback from these stakeholders can shed light on what did
hypertension medicines is planned, community members may and did not work in the research, leading to better research
list key questions; researchers may suggest appropriate scales down the road and strengthening relationships, as researchers
or methods of inquiry; the community may choose among prove that local input is critical for current and future work.
possible instruments, test some in their neighborhood, and Through this work, communities can learn the importance of
share feedback, as well as lead recruitment efforts and guide research and perhaps become optimistic that research will
trained surveyors; researchers may clean data and run anal- benefit them, not just the researchers. Strategies for dissem-
yses; and the community may interpret and disseminate the ination include town hall meetings, presentations at local
results and make recommendations for next steps. It is venues, newsletters, brochures, and video summaries.
important to use designs, methods, and approaches that are
sensitive to the sociocultural backgrounds of the “commu- Translating Findings Into Practice and Policy
nity,” be it a local ethnic group such as Asian Indians with To inform and influence policy, teams must decide what
high cardiovascular mortality but whose behaviors are largely specifically they want to advocate for, how to frame the issue
unexplored79 or a group of primary care clinicians. Research- to make it compelling, and which policy makers are sympa-
Horowitz et al CBPR: Challenges and Rewards 2639

thetic, receptive, and influential in that area and plan a Mistrust


strategy to approach them. Unified recommendations from a Historically, research has often not directly benefited and
trio of community advocates, clinicians, and researchers may sometimes actually harmed the communities involved and
prove quite persuasive in garnering resources, continuing excluded them from influence over the research process.84
proven effective programs, and disseminating key problems, Community members can become the conscience of investi-
solutions, and approaches. The National Heart, Lung, and gations, and researchers must be aware that community
Blood Institute, for example, is establishing a nationwide members have placed their credibility on the line through the
network of community-based organizations implementing partnership. Partners often harbor stereotypes about each
targeted, culturally sensitive heart health education strategies other that can pose obstacles to healthy and efficient team-
aimed at changing local physician practices and patient work. If groups do not devote adequate time and energy to
behaviors.81 Building relationships with funders can help
relationship building, they may find the challenges posed by
partnerships learn about future opportunities and influence
the process of CBPR to be overwhelming or self-defeating.
future funding priorities. Tangible community benefits can
Through honest discussions and a process marked by trans-
include employment, new skills, individual and community-
level empowerment, and accessible, effective programs that parency, groups can stay on task.59 A cautionary note:
improve health.82 Growing attention to and funding for CBPR can lead to a
surge in name-only CBPR. These endeavors have a high risk
Sustain Research Partnerships, Benefits, of damaging partnerships and trust, which could spread
and Resources through a community and even negatively affect well-
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Sustainability of programs and resources is a core element of functioning partnerships.


CBPR. Partners should embed plans to maintain benefits and
partnerships as early as grant writing, asking, “If this works, Culture and Social Class
what do we need to build to make sure it continues?” This Traditional research by nature is competitive and can be
may include clinical leaders who can institutionalize pro- exclusive; CBPR is collaborative and by definition inclu-
grams, local leaders to lobby for programs,83 or data and sive.27 Much CPBR takes place with relatively low-income
publications to inform policy, advocate for resources, or communities and communities of color, and the majority of
influence current practices. Partnerships that have built trust researchers receive relatively high incomes and are not
and respect; formed bonds of friendship; shared humor, persons of color. Typically, researchers have evaluative
successes, and failures; and learned from each other may be competency; community members have cultural competency.
more likely to outlast disagreements and fluctuations in Thus, CBPR partnerships cross cultures and cross social
funding and work intensity.8 Community champions are classes, and issues of power and conflict arise.5 Researchers
critical, but academics must lead by example. For example, if should be aware of these issues and view them as opportu-
researchers become too busy to attend regular meetings, they nities for growth and expanding their perspectives, rather than
cannot ask more of their community partners. as reasons that partnered research is too hard to take on.

Challenges of CBPR and Potential Solutions Differing Objectives and Perspectives


Although CBPR can enhance research, it can be complicated Partners may differ in their emphasis on research versus
and quite challenging. Here, we describe common issues in service delivery, policy versus publication, building infra-
conducting partnered research and ways to approach them. structure versus developing new scientific knowledge, the
importance of processes versus outcomes, and different styles
Conducting CBPR on Traditional Research of communication and decision making.8 These must be
Timeframe: Creativity and Compromise discussed openly so that the team can meet individual and
Most grants leave little time to build relationships, recruit key
group needs, especially as the partnership solidifies and
partners, and codevelop goals and ideas, in addition to
partners genuinely want not only to further their group cause
conducting high-quality research, all of which CBPR re-
but also to help each other.5
quires. Fortunately, funding is increasingly available for this
key formative work. Community members have many com- Financial Inequities
peting priorities such as job creation and crime reduction, Not surprisingly, funding disputes can prove toxic to partner-
which make their consistent participation in CBPR projects ships. Community members may have trouble reconciling
challenging. It is important to respect the time that partners multimillion dollar research budgets that are enrolling hun-
have to give and to be flexible so that people do not have to
dreds of patients when they could use that budget for service
give up their existing roles in the community to be partners.
delivery to thousands. Because academics tend to have
Creative research can incorporate community concerns and
significantly higher salaries, community partners can feel
constraints, ie, by employing local people as study personnel.
relatively underfunded for contributing the same amount of
Crossing Cultures: Communicating, Resolving effort. Budget discussions should become part of the CBPR
Conflicts, and Aligning Objectives education process: the community learning the cost of re-
Understanding and addressing common conflicts in partner- search, academics learning the cost of delivering community
ships may, in fact, lead to stronger and more productive services, and partners searching for ways to be more cost-
collaborations. We review these here. effective to sustain programs.27
2640 Circulation May 19, 2009

Sharing Power, Resources, and Decision Making members at the table at every phase of research may help
Core values of CBPR are mutual respect and a belief that each researchers merge “CBP” and “R.”
partner has the potential to contribute something of equal
worth to the project at hand. Some researchers may view their Future Opportunities
involving laypersons in their research as doing the commu- CBPR is an approach whose time has come. The challenges
nity a favor. This kind of thinking can undermine the integrity to CBPR notwithstanding, all signs indicate that CBPR is
of any project. We must be careful not to offer a “token” or moving from the margin to the mainstream: a growing
marginal involvement but realistic and vital engagement in evidence base supporting its effectiveness; growing numbers
research. Researchers must genuinely be convinced that of fellowship programs, minicourses, and workshops; numer-
community partners have something to offer. ous peer-reviewed articles and journal theme issues; and
increased funding opportunities, universities with career
Conflict Resolution paths for CBPR faculty, community organizations that rec-
Academics need community mentors to avoid taking missteps ognize the role of CBPR in building capacity and local
that damage partnerships and to have a person who is resources, and national membership organizations that sup-
comfortable providing them feedback when they inadvertent- port CBPR practitioners and advance the field. In times of
ly make a mistake. Conflict resolution is necessary for stagnant or shrinking research funding, concerns about find-
growth, and resolution creates a legacy of problem-solving ing novel ideas for investigation, and a need to break the
strategies and stronger bonds.30 Taking time to meet regularly impasses thwarting translation of the latest advances in
as a team and having clear and written rules for decision
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cardiovascular research to benefit populations in need, CBPR


making are critical. Through this work, partners can recog- is a great new frontier. It may be advantageous for researchers
nize each other’s strengths and overcome academic stereo- aiming to maximize the relevance, rigor, and results of their
types that community partners lack capacity and infrastruc- work to take a closer look.
ture to be full research partners, as well as community
cynicism that academics only partner to enhance their careers Acknowledgments
and their research. At times, partners must simply agree to We thank Punam Parikh for her help preparing this manuscript and
disagree. CBPR calls for every person involved to be willing our community partners for their guidance and support.
to take a long, hard look at his or her fundamental assump-
tions about people from different walks of life. Sources of Funding
Dr Horowitz is supported by the National Center of Minority Health
and Health Disparities of the National Institutes of Health (R24
Balancing Scientific Rigor and MD001691, P60 MD00270), the Centers for Disease Control and
Prevention REACH-US (U58DP001010), and the New York State
Community Acceptability Diabetes Prevention and Control Program. Dr Seifer is supported by
Traditional research is focused on “R,” and much of CBPR to the Agency for Health Care Research and Quality and the National
date had been focused on process, or “CBP.”51 Partners are Cancer Institute (R13 HS016471– 03).
now challenged with blending CBP and R while retaining the
advantages and benefits of both. Community partners may Disclosures
resent an emphasis on “R,” especially if they feel that the None.
effectiveness of a program is obvious. However, community-
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Carol R. Horowitz, Mimsie Robinson and Sarena Seifer

Circulation. 2009;119:2633-2642
doi: 10.1161/CIRCULATIONAHA.107.729863
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