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Updated Guidelines For Evaluating Public Health Surveillance Systems

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0% found this document useful (0 votes)
275 views37 pages

Updated Guidelines For Evaluating Public Health Surveillance Systems

Uploaded by

jorge david
Copyright
© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
Available Formats
Download as PDF, TXT or read online on Scribd

Updated Guidelines for Evaluating

Public Health Surveillance Systems


Recommendations from the Guidelines Working Group

Guidelines Working Group

CHAIRMAN
Robert R. German, M.P.H.
Epidemiology Program Office, CDC

ADMINISTRATIVE SUPPORT
Dwight Westmoreland, M.P.A.
Epidemiology Program Office, CDC

MEMBERS

Greg Armstrong, M.D.


National Center for Infectious Diseases CDC

Guthrie S. Birkhead, M.D., M.P.H.


Council of State and Territorial Epidemiologists
New York State Department of Health
Albany, New York

John M. Horan, M.D., M.P.H.


National Center for Injury Prevention and Control, CDC

Guillermo Herrera
National Immunization Program, CDC

Lisa M. Lee, Ph.D.


National Center for HIV, STD and TB Prevention, CDC

Robert L. Milstein, M.P.H.


National Center for Chronic Disease Prevention and Health Promotion, CDC

Carol A. Pertowski, M.D.


National Center for Environmental Health CDC

Michael N. Waller
National Center for Chronic Disease Prevention and Health Promotion, CDC

The following CDC staff members prepared this report:


Robert R. German, M.P.H.
Division of Public Health Surveillance and Informatics
Epidemiology Program Office

Lisa M. Lee, Ph.D.


Division of HIV/AIDS Prevention -- Surveillance and Epidemiology
National Center for HIV, STD, and TB Prevention

John M. Horan, M.D., M.P.H.


Office of the Director
National Center for Injury Prevention and Control

Robert L. Milstein, M.P.H.


Office of the Director
National Center for Chronic Disease Prevention and Health Promotion

Carol A. Pertowski, M.D.


Division of Environmental Hazards and Health Effects
National Center for Environmental Health

Michael N. Waller
Division of Adult and Community Health
National Center for Chronic Disease Prevention and Health Promotion

in collaboration with

Guthrie S. Birkhead, M.D., M.P.H.


Council of State and Territorial Epidemiologists
New York State Department of Health
Albany, New York

Additional CDC Contributors

Office of the Director: Karen E. Harris, M.P.H.; Joseph A. Reid, Ph.D; Gladys H.
Reynolds, Ph.D., M.S.; Dixie E. Snider, Jr., M.D., M.P.H.

Agency for Toxic Substances and Disease Registry: Wendy E. Kaye, Ph.D.; Robert
Spengler, Sc.D.

Epidemiology Program Office: Vilma G. Carande-Kulis, Ph.D., M.S.; Andrew G.


Dean, M.D., M.P.H.; Samuel L. Groseclose, D.V.M., M.P.H.; Robert A. Hahn, Ph.D.,
M.P.H.; Lori Hutwagner, M.S.; Denise Koo, M.D., M.P.H.; R. Gibson Parrish, M.D.,
M.P.H.; Catherine Schenck-Yglesias, M.H.S.; Daniel M. Sosin, M.D., M.P.H.; Donna
F. Stroup, Ph.D., M.Sc.; Stephen B. Thacker, M.D., M.Sc.; G. David Williamson,
Ph.D.

National Center for Birth Defects and Developmental Disabilities: Joseph


Mulnaire, M.D., M.S.P.H.

National Center for Chronic Disease Prevention and Health Promotion: Terry F.
Pechacek, Ph.D; Nancy Stroup, Ph.D.

National Center for Environmental Health: Thomas H. Sinks, Ph.D.

National Center for Health Statistics: Jennifer H. Madans, Ph.D.

National Center for HIV, STD, and TB Prevention: James W. Buehler, M.D.;
Meade Morgan, Ph.D.

National Center for Infectious Diseases: Janet K. Nicholson, Ph.D; Jose G. Rigau-
Perez, M.D., M.P.H.

National Center for Injury Prevention and Control: Richard L. Ehrenberg, M.D.

National Immunization Program: H. Gay Allen, M.S.P.H.; Roger H. Bernier, Ph.D;


Nancy Koughan, D.O., M.P.H., M.H.A.; Sandra W. Roush, M.T., M.P.H.

National Institute for Occupational Safety and Health: Rosemary Sokas, M.D.,
M.O.H.

Public Health Practice Program Office: William A. Yasnoff, M.D., Ph.D.

Consultants and Contributors

Scientific Workgroup on Health-Related Quality of Life Surveillance


St. Louis University, St. Louis, Missouri

Paul Etkind, Dr.P.H., Massachusetts Department of Public Health, Jamaica Plain,


Massachusetts; Annie Fine, M.D., New York City Department of Health, New York
City, New York; Julie A. Fletcher, D.V.M, M.P.H. candidate, Emory University,
Atlanta, Georgia; Daniel J. Friedman, Ph.D., Massachusetts Department of Public
Health, Boston, Massachusetts; Richard S. Hopkins, M.D., M.S.P.H., Florida
Department of Health, Tallahassee, Florida; Steven C. MacDonald, Ph.D., M.P.H.,
Washington State Department of Health, Olympia, Washington; Elroy D. Mann,
D.V.M., M.Sc., Health Canada, Ottawa, Canada; S. Potjaman, M.D., Government of
Thailand, Bangkok, Thailand; Marcel E. Salive, M.D., M.P.H., National Institutes of
Health, Bethesda, Maryland.

Summary

The purpose of evaluating public health surveillance systems is to ensure that


problems of public health importance are being monitored efficiently and effectively.
CDC's Guidelines for Evaluating Surveillance Systems are being updated to address
the need for a) the integration of surveillance and health information systems, b) the
establishment of data standards, c) the electronic exchange of health data, and d)
changes in the objectives of public health surveillance to facilitate the response of
public health to emerging health threats (e.g., new diseases). This report provides
updated guidelines for evaluating surveillance systems based on CDC's Framework
for Program Evaluation in Public Health, research and discussion of concerns related
to public health surveillance systems, and comments received from the public health
community. The guidelines in this report describe many tasks and related activities
that can be applied to public health surveillance systems.

INTRODUCTION

In 1988, CDC published Guidelines for Evaluating Surveillance Systems (1) to


promote the best use of public health resources through the development of efficient
and effective public health surveillance systems. CDC's Guidelines for Evaluating
Surveillance Systems are being updated to address the need for a) the integration of
surveillance and health information systems, b) the establishment of data standards, c)
the electronic exchange of health data, and d) changes in the objectives of public
health surveillance to facilitate the response of public health to emerging health threats
(e.g., new diseases). For example, CDC, with the collaboration of state and local
health departments, is implementing the National Electronic Disease Surveillance
System (NEDSS) to better manage and enhance the large number of current
surveillance systems and allow the public health community to respond more quickly
to public health threats (e.g., outbreaks of emerging infectious diseases and
bioterrorism) (2). When NEDSS is completed, it will electronically integrate and link
together several types of surveillance systems with the use of standard data formats; a
communications infrastructure built on principles of public health informatics; and
agreements on data access, sharing, and confidentiality. In addition, the Health
Insurance Portability and Accountability Act of 1996 (HIPAA) mandates that the
United States adopt national uniform standards for electronic transactions related to
health insurance enrollment and eligibility, health-care encounters, and health
insurance claims; for identifiers for health-care providers, payers and individuals, as
well as code sets and classification systems used in these transactions; and for security
of these transactions (3). The electronic exchange of health data inherently involves
the protection of patient privacy.

Based on CDC's Framework for Program Evaluation in Public Health (4), research
and discussion of concerns related to public health surveillance systems, and
comments received from the public health community, this report provides updated
guidelines for evaluating public health surveillance systems.

BACKGROUND

Public health surveillance is the ongoing, systematic collection, analysis,


interpretation, and dissemination of data regarding a health-related event for use in
public health action to reduce morbidity and mortality and to improve health (5--7).
Data disseminated by a public health surveillance system can be used for immediate
public health action, program planning and evaluation, and formulating research
hypotheses. For example, data from a public health surveillance system can be used to

guide immediate action for cases of public health importance;


measure the burden of a disease (or other health-related event), including changes in
related factors, the identification of populations at high risk, and the identification of
new or emerging health concerns;
monitor trends in the burden of a disease (or other health-related event), including
the detection of epidemics (outbreaks) and pandemics;
guide the planning, implementation, and evaluation of programs to prevent and
control disease, injury, or adverse exposure;
evaluate public policy;
detect changes in health practices and the effects of these changes;
prioritize the allocation of health resources;
describe the clinical course of disease; and
provide a basis for epidemiologic research.

Public health surveillance activities are generally authorized by legislators and carried
out by public health officials. Public health surveillance systems have been developed
to address a range of public health needs. In addition, public health information
systems have been defined to include a variety of data sources essential to public
health action and are often used for surveillance (8). These systems vary from a simple
system collecting data from a single source, to electronic systems that receive data
from many sources in multiple formats, to complex surveys. The number and variety
of systems will likely increase with advances in electronic data interchange and
integration of data, which will also heighten the importance of patient privacy, data
confidentiality, and system security. Appropriate institutions/agencies/scientific
officials should be consulted with any projects regarding pubic health surveillance.

Variety might also increase with the range of health-related events under surveillance.
In these guidelines, the term "health-related event" refers to any subject related to a
public health surveillance system. For example, a health-related event could include
infectious, chronic, or zoonotic diseases; injuries; exposures to toxic substances; health
promoting or damaging behaviors; and other surveilled events associated with public
health action.

The purpose of evaluating public health surveillance systems is to ensure that


problems of public health importance are being monitored efficiently and effectively.
Public health surveillance systems should be evaluated periodically, and the evaluation
should include recommendations for improving quality, efficiency, and usefulness.
The goal of these guidelines is to organize the evaluation of a public health
surveillance system. Broad topics are outlined into which program-specific qualities
can be integrated. Evaluation of a public health surveillance system focuses on how
well the system operates to meet its purpose and objectives.

The evaluation of public health surveillance systems should involve an assessment of


system attributes, including simplicity, flexibility, data quality, acceptability,
sensitivity, predictive value positive, representativeness, timeliness, and stability. With
the continuing advancement of technology and the importance of information
architecture and related concerns, inherent in these attributes are certain public health
informatics concerns for public health surveillance systems. These concerns include
comparable hardware and software, standard user interface, standard data format and
coding, appropriate quality checks, and adherence to confidentiality and security
standards (9). Because public health surveillance systems vary in methods, scope,
purpose, and objectives, attributes that are important to one system might be less
important to another. A public health surveillance system should emphasize those
attributes that are most important for the objectives of the system. Efforts to improve
certain attributes (e.g., the ability of a public health surveillance system to detect a
health-related event [sensitivity]) might detract from other attributes (e.g., simplicity
or timeliness). An evaluation of the public health surveillance system must therefore
consider those attributes that are of the highest priority for a given system and its
objectives. Considering the attributes that are of the highest priority, the guidelines in
this report describe many tasks and related activities that can be applied in the
evaluation of public health surveillance systems, with the understanding that all
activities under the tasks might not be appropriate for all systems.

Organization of This Report

This report begins with descriptions of each of the tasks involved in evaluating a
public health surveillance system. These tasks are adapted from the steps in program
evaluation in the Framework for Program Evaluation in Public Health (4) as well as
from the elements in the original guidelines for evaluating surveillance systems (1).
The report concludes with a summary statement regarding evaluating surveillance
systems. A checklist that can be detached or photocopied and used when the
evaluation is implemented is also included (Appendix A).

To assess the quality of the evaluation activities, relevant standards are provided for
each of the tasks for evaluating a public health surveillance system (Appendix B).
These standards are adapted from the standards for effective evaluation (i.e., utility,
feasibility, propriety, and accuracy) in the Framework for Program Evaluation in
Public Health (4). Because all activities under the evaluation tasks might not be
appropriate for all systems, only those standards that are appropriate to an evaluation
should be used.

Task A. Engage the Stakeholders in the Evaluation

Stakeholders can provide input to ensure that the evaluation of a public health
surveillance system addresses appropriate questions and assesses pertinent attributes
and that its findings will be acceptable and useful. In that context, we define
stakeholders as those persons or organizations who use data for the promotion of
healthy lifestyles and the prevention and control of disease, injury, or adverse
exposure. Those stakeholders who might be interested in defining questions to be
addressed by the surveillance system evaluation and subsequently using the findings
from it are public health practitioners; health-care providers; data providers and users;
representatives of affected communities; governments at the local, state, and federal
levels; and professional and private nonprofit organizations.

Task B. Describe the Surveillance System to be Evaluated

Activities

Describe the public health importance of the health-related event under surveillance.
Describe the purpose and operation of the system.
Describe the resources used to operate the system.

Discussion

To construct a balanced and reliable description of the system, multiple sources of


information might be needed. The description of the system can be improved by
consulting with a variety of persons involved with the system and by checking
reported descriptions of the system against direct observation.

B.1. Describe the Public Health Importance of the Health-Related Event Under
Surveillance

Definition. The public health importance of a health-related event and the need to
have that event under surveillance can be described in several ways. Health-related
events that affect many persons or that require large expenditures of resources are of
public health importance. However, health-related events that affect few persons might
also be important, especially if the events cluster in time and place (e.g., a limited
outbreak of a severe disease). In other instances, public concerns might focus attention
on a particular health-related event, creating or heightening the importance of an
evaluation. Diseases that are now rare because of successful control measures might
be perceived as unimportant, but their level of importance should be assessed as a
possible sentinel health-related event or for their potential to reemerge. Finally, the
public health importance of a health-related event is influenced by its level of
preventability (10).

Measures. Parameters for measuring the importance of a health-related event---and


therefore the public health surveillance system with which it is monitored---can
include (7)

indices of frequency (e.g., the total number of cases and/or deaths; incidence rates,
prevalence, and/or mortality rates); and summary measures of population health
status (e.g., quality-adjusted life years [QALYS]);
indices of severity (e.g., bed-disability days, case-fatality ratio, and hospitalization
rates and/or disability rates);
disparities or inequities associated with the health-related event;
costs associated with the health-related event;
preventability (10);
potential clinical course in the absence of an intervention (e.g., vaccinations) (11,12);
and
public interest.

Efforts have been made to provide summary measures of population health status that
can be used to make comparative assessments of the health needs of populations (13).
Perhaps the best known of these measures are QALYs, years of healthy life (YHLs),
and disability-adjusted life years (DALYs). Based on attributes that represent health
status and life expectancy, QALYs, YHLs, and DALYs provide one-dimensional
measures of overall health. In addition, attempts have been made to quantify the public
health importance of various diseases and other health-related events. In a study that
describes such an approach, a score was used that takes into account agespecific
morbidity and mortality rates as well as healthcare costs (14). Another study used a
model that ranks public health concerns according to size, urgency, severity of the
problem, economic loss, effect on others, effectiveness, propriety, economics,
acceptability, legality of solutions, and availability of resources (15).

Preventability can be defined at several levels, including primary prevention


(preventing the occurrence of disease or other health-related event), secondary
prevention (early detection and intervention with the aim of reversing, halting, or at
least retarding the progress of a condition), and tertiary prevention (minimizing the
effects of disease and disability among persons already ill). For infectious diseases,
preventability can also be described as reducing the secondary attack rate or the
number of cases transmitted to contacts of the primary case. From the perspective of
surveillance, preventability reflects the potential for effective public health
intervention at any of these levels.

B.2. Describe the Purpose and Operation of the Surveillance System

Methods. Methods for describing the operation of the public health surveillance
system include

List the purpose and objectives of the system.


Describe the planned uses of the data from the system.
Describe the health-related event under surveillance, including the case definition for
each specific condition.
Cite any legal authority for the data collection.
Describe where in the organization(s) the system resides, including the context (e.g.,
the political, administrative, geographic, or social climate) in which the system
evaluation will be done.
Describe the level of integration with other systems, if appropriate.
Draw a flow chart of the system.
Describe the components of the system. For example
--- What is the population under surveillance?
--- What is the period of time of the data collection?
--- What data are collected and how are they collected?
--- What are the reporting sources of data for the system?
--- How are the system's data managed (e.g., the transfer, entry, editing, storage, and
back up of data)? Does the system comply with applicable standards for data formats
and coding schemes? If not, why?
--- How are the system's data analyzed and disseminated?
--- What policies and procedures are in place to ensure patient privacy, data
confidentiality, and system security? What is the policy and procedure for releasing
data? Do these procedures comply with applicable federal and state statutes and
regulations? If not, why?
--- Does the system comply with an applicable records management program? For
example, are the system's records properly archived and/or disposed of?

Discussion. The purpose of the system indicates why the system exists, whereas its
objectives relate to how the data are used for public health action. The objectives of a
public health surveillance system, for example, might address immediate public health
action, program planning and evaluation, and formation of research hypotheses (see
Background). The purpose and objectives of the system, including the planned uses of
its data, establish a frame of reference for evaluating specific components.

A public health surveillance system is dependent on a clear case definition for the
health-related event under surveillance (7). The case definition of a health-related
event can include clinical manifestations (i.e., symptoms), laboratory results,
epidemiologic information (e.g., person, place, and time), and/or specified behaviors,
as well as levels of certainty (e.g., confirmed/definite, probable/presumptive, or
possible/suspected). The use of a standard case definition increases the specificity of
reporting and improves the comparability of the health-related event reported from
different sources of data, including geographic areas. Case definitions might exist for a
variety of health-related events under surveillance, including diseases, injuries,
adverse exposures, and risk factor or protective behaviors. For example, in the United
States, CDC and the Council of State and Territorial Epidemiologists (CSTE) have
agreed on standard case definitions for selected infectious diseases (16). In addition,
CSTE publishes Position Papers that discuss and define a variety of health-related
events (17). When possible, a public health surveillance system should use an
established case definition, and if it does not, an explanation should be provided.

The evaluation should assess how well the public health surveillance system is
integrated with other surveillance and health information systems (e.g., data exchange
and sharing in multiple formats, and transformation of data). Streamlining related
systems into an integrated public health surveillance network enables individual
systems to meet specific data collection needs while avoiding the duplication of effort
and lack of standardization that can arise from independent systems (18). An
integrated system can address comorbidity concerns (e.g., persons infected with
human immunodeficiency virus andMycobacterium tuberculosis); identify previously
unrecognized risk factors; and provide the means for monitoring additional outcomes
from a health-related event. When CDC's NEDSS is completed, it will electronically
integrate and link together several types of surveillance activities and facilitate more
accurate and timely reporting of disease information to CDC and state and local health
departments (2).

CSTE has organized professional discussion among practicing public health


epidemiologists at state and federal public health agencies. CSTE has also proposed a
national public health surveillance system to serve as a basis for local and state public
health agencies to a) prioritize surveillance and health information activities and b)
advocate for necessary resources for public health agencies at all levels (19). This
national public health system would be a conceptual framework and virtual
surveillance system that incorporates both existing and new surveillance systems for
health-related events and their determinants.

Listing the discrete steps that are taken in processing the health-event reports by the
system and then depicting these steps in a flow chart is often useful. An example of a
simplified flow chart for a generic public health surveillance system is included in this
report (Figure 1). The mandates and business processes of the lead agency that
operates the system and the participation of other agencies could be included in this
chart. The architecture and data flow of the system can also be depicted in the chart
(20,21). A chart of architecture and data flow should be sufficiently detailed to explain
all of the functions of the system, including average times between steps and data
transfers.

The description of the components of the public health surveillance system could
include discussions related to public health informatics concerns, including
comparable hardware and software, standard user interface, standard data format and
coding, appropriate quality checks, and adherence to confidentiality and security
standards (9). For example, comparable hardware and software, standard user
interface, and standard data format and coding facilitate efficient data exchange, and a
set of common data elements are important for effectively matching data within the
system or to other systems.

To document the information needs of public health, CDC, in collaboration with state
and local health departments, is developing the Public Health Conceptual Data Model
to a) establish data standards for public health, including data definitions, component
structures (e.g., for complex data types), code values, and data use; b) collaborate with
national health informatics standard-setting bodies to define standards for the
exchange of information among public health agencies and health-care providers; and
c) construct computerized information systems that conform to established data and
data interchange standards for use in the management of data relevant to public health
(22). In addition, the description of the system's data management might address who
is editing the data, how and at what levels the data are edited, and what checks are in
place to ensure data quality.

In response to HIPAA mandates, various standard development organizations and


terminology and coding groups are working collaboratively to harmonize their
separate systems (23). For example, both the Accredited Standards Committee X12
(24), which has dealt principally with standards for health insurance transactions, and
Health Level Seven (HL7) (25), which has dealt with standards for clinical messaging
and exchange of clinical information with health-care organizations (e.g., hospitals),
have collaborated on a standardized approach for providing supplementary
information to support health-care claims (26). In the area of classification and coding
of diseases and other medical terms, the National Library of Medicine has traditionally
provided the Unified Medical Language System, a metathesaurus for clinical coding
systems that allows terms in one coding system to be mapped to another (27). The
passage of HIPAA and the anticipated adoption of standards for electronic medical
records have increased efforts directed toward the integration of clinical terminologies
(23) (e.g., the merge of the College of American Pathologists' Systematized
Nomenclature of Medicine [SNOMED®] [28] and the British Read Codes, the
National Health Service thesaurus of health-care terms in Great Britain).

The data analysis description might indicate who analyzes the data, how they are
analyzed, and how often. This description could also address how the system ensures
that appropriate scientific methods are used to analyze the data.

The public health surveillance system should operate in a manner that allows effective
dissemination of health data so that decision makers at all levels can readily
understand the implications of the information (7). Options for disseminating data
and/or information from the system include electronic data interchange; public-use
data files; the Internet; press releases; newsletters; bulletins; annual and other types of
reports; publication in scientific, peer-reviewed journals; and poster and oral
presentations, including those at individual, community, and professional meetings.
The audiences for health data and information can include public health practitioners,
health-care providers, members of affected communities, professional and voluntary
organizations, policymakers, the press, and the general public.

In conducting surveillance, public health agencies are authorized to collect personal


health data about persons and thus have an obligation to protect against inappropriate
use or release of that data. The protection of patient privacy (recognition of a person's
right not to share information about him or herself), data confidentiality (assurance of
authorized data sharing), and system security (assurance of authorized system access)
is essential to maintaining the credibility of any surveillance system. This protection
must ensure that data in a surveillance system regarding a person's health status are
shared only with authorized persons. Physical, administrative, operational, and
computer safeguards for securing the system and protecting its data must allow
authorized access while denying access by unauthorized users.

A related concern in protecting health data is data release, including procedures for
releasing record-level data; aggregate tabular data; and data in computer-based,
interactive query systems. Even though personal identifiers are removed before data
are released, the removal of these identifiers might not be a sufficient safeguard for
sharing health data. For example, the inclusion of demographic information in a line-
listed data file for a small number of cases could lead to indirect identification of a
person even though personal identifiers were not provided. In the United States, CDC
and CSTE have negotiated a policy for the release of data from the National Notifiable
Disease Surveillance System (29) to facilitate its use for public health while preserving
the confidentiality of the data (30). The policy is being evaluated for revision by CDC
and CSTE.

Standards for the privacy of individually identifiable health data have been proposed
in response to HIPAA (3). A model state law has been composed to address privacy,
confidentiality, and security concerns arising from the acquisition, use, disclosure, and
storage of health information by public health agencies at the state and local levels
(31). In addition, the Federal Committee on Statistical Methodology's series
of Statistical Policy Working Papersincludes reviews of statistical methods used by
federal agencies and their contractors that release statistical tables or microdata files
that are collected from persons, businesses, or other units under a pledge of
confidentiality. These working papers contain basic statistical methods to limit
disclosure (e.g., rules for data suppression to protect privacy and to minimize mistaken
inferences from small numbers) and provide recommendations for improving
disclosure limitation practices (32).

A public health surveillance system might be legally required to participate in a


records management program. Records can consist of a variety of materials (e.g.,
completed forms, electronic files, documents, and reports) that are connected with
operating the surveillance system. The proper management of these records prevents a
"loss of memory" or "cluttered memory" for the agency that operates the system, and
enhances the system's ability to meet its objectives.

B.3. Describe the Resources Used to Operate the Surveillance System

Definition. In this report, the methods for assessing resources cover only those
resources directly required to operate a public health surveillance system. These
resources are sometimes referred to as "direct costs" and include the personnel and
financial resources expended in operating the system.

Methods. In describing these resources consider the following:


Funding source(s): Specify the source of funding for the surveillance system. In the
United States, public health surveillance often results from a collaboration among
federal, state, and local governments.
Personnel requirements: Estimate the time it takes to operate the system, including
the collection, editing, analysis, and dissemination of data (e.g., persontime
expended per year of operation). These measures can be converted to dollar
estimates by multiplying the persontime by appropriate salary and benefit costs.
Other resources: Determine the cost of other resources, including travel, training,
supplies, computer and other equipment, and related services (e.g., mail, telephone,
computer support, Internet connections, laboratory support, and hardware and
software maintenance).

When appropriate, the description of the system's resources should consider all levels
of the public health system, from the local healthcare provider to municipal, county,
state, and federal health agencies. Resource estimation for public health surveillance
systems have been implemented in Vermont (Table 1) and Kentucky (Table 2).

Resource Estimation in Vermont. Two methods of collecting public health


surveillance data in Vermont were compared (33). The passive system was already in
place and consisted of unsolicited reports of notifiable diseases to the district offices or
state health department. The active system was implemented in a probability sample of
physician practices. Each week, a health department employee called these
practitioners to solicit reports of selected notifiable diseases.

In comparing the two systems, an attempt was made to estimate their costs. The
estimates of direct expenses were computed for the public health surveillance systems
(Table 1).

Resource Estimation in Kentucky. Another example of resource estimation was


provided by an assessment of the costs of a public health surveillance system
involving the active solicitation of case reports of type A hepatitis in Kentucky (Table
2) (34). The resources that were invested into the direct operation of the system in
1983 were for personnel and telephone expenses and were estimated at $3,764 and
$535, respectively. Nine more cases were found through this system than would have
been found through the passive surveillance system, and an estimated seven hepatitis
cases were prevented through administering prophylaxis to the contacts of the nine
casepatients.

Discussion. This approach to assessing resources includes only those personnel and
material resources required for the operation of surveillance and excludes a broader
definition of costs that might be considered in a more comprehensive evaluation. For
example, the assessment of resources could include the estimation of indirect costs
(e.g., followup laboratory tests) and costs of secondary data sources (e.g., vital
statistics or survey data).

The assessment of the system's operational resources should not be done in isolation of
the program or initiative that relies on the public health surveillance system. A more
formal economic evaluation of the system (i.e., judging costs relative to benefits)
could be included with the resource description. Estimating the effect of the system on
decision making, treatment, care, prevention, education, and/or research might be
possible (35,36). For some surveillance systems, however, a more realistic approach
would be to judge costs based on the objectives and usefulness of the system.

Task C. Focus the Evaluation Design

Definition

The direction and process of the evaluation must be focused to ensure that time and
resources are used as efficiently as possible.

Methods

Focusing the evaluation design for a public health surveillance system involves

determining the specific purpose of the evaluation (e.g., a change in practice);


identifying stakeholders (Task A) who will receive the findings and recommen-dations
of the evaluation (i.e., the intended users);
considering what will be done with the information generated from the evaluation
(i.e., the intended uses);
specifying the questions that will be answered by the evaluation; and
determining standards for assessing the performance of the system.

Discussion

Depending on the specific purpose of the evaluation, its design could be


straightforward or complex. An effective evaluation design is contingent upon a) its
specific purpose being understood by all of the stakeholders in the evaluation and b)
persons who need to know the findings and recommendations of the design being
committed to using the information generated from it. In addition, when multiple
stakeholders are involved, agreements that clarify roles and responsibilities might need
to be established among those who are implementing the evaluation.

Standards for assessing how the public health surveillance system performs establish
what the system must accomplish to be considered successful in meeting its
objectives. These standards specify, for example, what levels of usefulness and
simplicity are relevant for the system, given its objectives. Approaches to setting
useful standards for assessing the system's performance include a review of current
scientific literature on the health-related event under surveillance and/or consultation
with appropriate specialists, including users of the data.

Task D. Gather Credible Evidence Regarding the Performance of the


Surveillance System

Activities

Indicate the level of usefulness by describing the actions taken as a result of analysis
and interpretation of the data from the public health surveillance system.
Characterize the entities that have used the data to make decisions and take actions.
List other anticipated uses of the data.
Describe each of the following system attributes:
--- Simplicity
--- Flexibility
--- Data quality
--- Acceptability
--- Sensitivity
--- Predictive value positive
--- Representativeness
--- Timeliness
--- Stability

Discussion

Public health informatics concerns for public health surveillance systems (see Task
B.2, Discussion) can be addressed in the evidence gathered regarding the performance
of the system. Evidence of the system's performance must be viewed as credible. For
example, the gathered evidence must be reliable, valid, and informative for its
intended use. Many potential sources of evidence regarding the system's performance
exist, including consultations with physicians, epidemiologists, statisticians,
behavioral scientists, public health practitioners, laboratory directors, program
managers, data providers, and data users.

D.1. Indicate the Level of Usefulness

Definition. A public health surveillance system is useful if it contributes to the


prevention and control of adverse health-related events, including an improved
understanding of the public health implications of such events. A public health
surveillance system can also be useful if it helps to determine that an adverse health-
related event previously thought to be unimportant is actually important. In addition,
data from a surveillance system can be useful in contributing to performance measures
(37), including health indicators (38) that are used in needs assessments and
accountability systems.

Methods. An assessment of the usefulness of a public health surveillance system


should begin with a review of the objectives of the system and should consider the
system's effect on policy decisions and disease-control programs. Depending on the
objectives of a particular surveillance system, the system might be considered useful if
it satisfactorily addresses at least one of the following questions. Does the system

detect diseases, injuries, or adverse or protective exposures of public importance in a


timely way to permit accurate diagnosis or identification, prevention or treatment,
and handling of contacts when appropriate?
provide estimates of the magnitude of morbidity and mortality related to the health-
related event under surveillance, including the identification of factors associated
with the event?
detect trends that signal changes in the occurrence of disease, injury, or adverse or
protective exposure, including detection of epidemics (or outbreaks)?
permit assessment of the effect of prevention and control programs?
lead to improved clinical, behavioral, social, policy, or environmental practices? or
stimulate research intended to lead to prevention or control?

A survey of persons who use data from the system might be helpful in gathering
evidence regarding the usefulness of the system. The survey could be done either
formally with standard methodology or informally.

Discussion. Usefulness might be affected by all the attributes of a public health


surveillance system (see Task D.2, Describe Each System Attribute). For example,
increased sensitivity might afford a greater opportunity for identifying outbreaks and
understanding the natural course of an adverse health-related event in the population
under surveillance. Improved timeliness allows control and prevention activities to be
initiated earlier. Increased predictive value positive enables public health officials to
more accurately focus resources for control and prevention measures. A representative
surveillance system will better characterize the epidemiologic characteristics of a
health-related event in a defined population. Public health surveillance systems that
are simple, flexible, acceptable, and stable will likely be more complete and useful for
public health action.

D.2. Describe Each System Attribute

D.2.a. Simplicity

Definition. The simplicity of a public health surveillance system refers to both its
structure and ease of operation. Surveillance systems should be as simple as possible
while still meeting their objectives.

Methods. A chart describing the flow of data and the lines of response in a
surveillance system can help assess the simplicity or complexity of a surveillance
system. A simplified flow chart for a generic surveillance system is included in this
report (Figure 1).

The following measures (see Task B.2) might be considered in evaluating the
simplicity of a system:

amount and type of data necessary to establish that the health-related event has
occurred (i.e., the case definition has been met);
amount and type of other data on cases (e.g., demographic, behavioral, and
exposure information for the health-related event);
number of organizations involved in receiving case reports;
level of integration with other systems;
method of collecting the data, including number and types of reporting sources, and
time spent on collecting data;
amount of follow-up that is necessary to update data on the case;
method of managing the data, including time spent on transferring, entering, editing,
storing, and backing up data;
methods for analyzing and disseminating the data, including time spent on preparing
the data for dissemination;
staff training requirements; and
time spent on maintaining the system.

Discussion. Thinking of the simplicity of a public health surveillance system from the
design perspective might be useful. An example of a system that is simple in design is
one with a case definition that is easy to apply (i.e., the case is easily ascertained) and
in which the person identifying the case will also be the one analyzing and using the
information. A more complex system might involve some of the following:

special or follow-up laboratory tests to confirm the case;


investigation of the case, including telephone contact or a home visit by public health
personnel to collect detailed information;
multiple levels of reporting (e.g., with the National Notifiable Diseases Surveillance
System, case reports might start with the health-care provider who makes the
diagnosis and pass through county and state health departments before going to CDC
[29]); and
integration of related systems whereby special training is required to collect and/or
interpret data.

Simplicity is closely related to acceptance and timeliness. Simplicity also affects the
amount of resources required to operate the system.

D.2.b. Flexibility

Definition. A flexible public health surveillance system can adapt to changing


information needs or operating conditions with little additional time, personnel, or
allocated funds. Flexible systems can accommodate, for example, new health-related
events, changes in case definitions or technology, and variations in funding or
reporting sources. In addition, systems that use standard data formats (e.g., in
electronic data interchange) can be easily integrated with other systems and thus might
be considered flexible.

Methods. Flexibility is probably best evaluated retrospectively by observing how a


system has responded to a new demand. An important characteristic of CDC's
Behavioral Risk Factor Surveillance System (BRFSS) is its flexibility (39). Conducted
in collaboration with state health departments, BRFSS is an ongoing sample survey
that gathers and reports state-level prevalence data on health behaviors related to the
leading preventable causes of death as well as data on preventive health practices. The
system permits states to add questions of their own design to the BRFSS questionnaire
but is uniform enough to allow state-to-state comparisons for certain questions. These
state-specific questions can address emergent and locally important health concerns. In
addition, states can stratify their BRFSS samples to estimate prevalence data for
regions or counties within their respective states.

Discussion. Unless efforts have been made to adapt the public health surveillance
system to another disease (or other health-related event), a revised case definition,
additional data sources, new information technology, or changes in funding, assessing
the flexibility of that system might be difficult. In the absence of practical experience,
the design and workings of a system can be examined. Simpler systems might be more
flexible (i.e., fewer components will need to be modified when adapting the system for
a change in information needs or operating conditions).

D.2.c. Data Quality

Definition. Data quality reflects the completeness and validity of the data recorded in
the public health surveillance system.
Methods. Examining the percentage of "unknown" or "blank" responses to items on
surveillance forms is a straightforward and easy measure of data quality. Data of high
quality will have low percentages of such responses. However, a full assessment of the
completeness and validity of the system's data might require a special study. Data
values recorded in the surveillance system can be compared to "true" values through,
for example, a review of sampled data (40), a special record linkage (41), or patient
interview (42). In addition, the calculation of sensitivity (Task D.2.e) and predictive
value positive (Task D.2.f) for the system's data fields might be useful in assessing
data quality.

Quality of data is influenced by the performance of the screening and diagnostic tests
(i.e., the case definition) for the health-related event, the clarity of hardcopy or
electronic surveillance forms, the quality of training and supervision of persons who
complete these surveillance forms, and the care exercised in data management. A
review of these facets of a public health surveillance system provides an indirect
measure of data quality.

Discussion. Most surveillance systems rely on more than simple case counts. Data
commonly collected include the demographic characteristics of affected persons,
details about the health-related event, and the presence or absence of potential risk
factors. The quality of these data depends on their completeness and validity.

The acceptability (see Task D.2.d) and representativeness (Task D.2.g) of a public
health surveillance system are related to data quality. With data of high quality, the
system can be accepted by those who participate in it. In addition, the system can
accurately represent the health-related event under surveillance.

D.2.d. Acceptability

Definition. Acceptability reflects the willingness of persons and organizations to


participate in the surveillance system.

Methods. Acceptability refers to the willingness of persons in the sponsoring agency


that operates the system and persons outside the sponsoring agency (e.g., persons who
are asked to report data) to use the system. To assess acceptability, the points of
interaction between the system and its participants must be considered (Figure 1),
including persons with the health-related event and those reporting cases.

Quantitative measures of acceptability can include

subject or agency participation rate (if it is high, how quickly it was achieved);
interview completion rates and question refusal rates (if the system involves
interviews);
completeness of report forms;
physician, laboratory, or hospital/facility reporting rate; and
timeliness of data reporting.

Some of these measures might be obtained from a review of surveillance report forms,
whereas others would require special studies or surveys.
Discussion. Acceptability is a largely subjective attribute that encompasses the
willingness of persons on whom the public health surveillance system depends to
provide accurate, consistent, complete, and timely data. Some factors influencing the
acceptability of a particular system are

the public health importance of the health-related event;


acknowledgment by the system of the person's contribution;
dissemination of aggregate data back to reporting sources and interested parties;
responsiveness of the system to suggestions or comments;
burden on time relative to available time;
ease and cost of data reporting;
federal and state statutory assurance of privacy and confidentiality;
the ability of the system to protect privacy and confidentiality;
federal and state statute requirements for data collection and case reporting; and
participation from the community in which the system operates.

D.2.e. Sensitivity

Definition. The sensitivity of a surveillance system can be considered on two levels.


First, at the level of case reporting, sensitivity refers to the proportion of cases of a
disease (or other health-related event) detected by the surveillance system (43).
Second, sensitivity can refer to the ability to detect outbreaks, including the ability to
monitor changes in the number of cases over time.

Methods. The measurement of the sensitivity of a public health surveillance system is


affected by the likelihood that

certain diseases or other health-related events are occurring in the population under
surveillance;
cases of certain health-related events are under medical care, receive laboratory
testing, or are otherwise coming to the attention of institutions subject to reporting
requirements;
the health-related events will be diagnosed/identified, reflecting the skill of health-
care providers and the sensitivity of screening and diagnostic tests (i.e., the case
definition); and
the case will be reported to the system.

These situations can be extended by analogy to public health surveillance systems that
do not fit the traditional disease careprovider model. For example, the sensitivity of a
telephonebased surveillance system of morbidity or risk factors is affected by

the number of persons who have telephones, who are at home when the call is
placed, and who agree to participate;
the ability of persons to understand the questions and correctly identify their status;
and
the willingness of respondents to report their status.

The extent to which these situations are explored depends on the system and on the
resources available for assessing sensitivity. The primary emphasis in assessing
sensitivity --- assuming that most reported cases are correctly classified --- is to
estimate the proportion of the total number of cases in the population under
surveillance being detected by the system, represented by A/(A+C) in this report
(Table 3).

Surveillance of vaccine-preventable diseases provides an example of where the


detection of outbreaks is a critical concern (44). Approaches that have been
recommended for improving sensitivity of reporting vaccine-preventable diseases
might be applicable to other health-related events (44). For example, the sensitivity of
a system might be improved by

conducting active surveillance (i.e., contacting all providers and institutions


responsible for reporting cases);
using external standards (or other surveillance indicators) to monitor the quality of
case reporting;
identifying imported cases;
tracking the number of cases of suspected disease that are reported, investigated,
and ruled out as cases;
monitoring the diagnostic effort (e.g., tracking submission of laboratory requests for
diagnostic testing); and
monitoring the circulation of the agent (e.g., virus or bacterium) that causes the
disease.

The capacity for a public health surveillance system to detect outbreaks (or other
changes in incidence and prevalence) might be enhanced substantially if detailed
diagnostic tests are included in the system. For example, the use of molecular
subtyping in the surveillance of Escherichia coli O157:H7 infections in Minnesota
enabled the surveillance system to detect outbreaks that would otherwise have gone
unrecognized (45).

The measurement of the sensitivity of the surveillance system (Table 3) requires a)


collection of or access to data usually external to the system to determine the true
frequency of the condition in the population under surveillance (46) and b) validation
of the data collected by the system. Examples of data sources used to assess the
sensitivity of health information or public health surveillance systems include medical
records (47,48) and registries (49,50). In addition, sensitivity can be assessed through
estimations of the total cases in the population under surveillance by using capture-
recapture techniques (51,52).

To adequately assess the sensitivity of the public health surveillance system,


calculating more than one measurement of the attribute might be necessary. For
example, sensitivity could be determined for the system's data fields, for each data
source or for combinations of data sources (48), for specific conditions under
surveillance (53), or for each of several years (54). The use of a Venn diagram might
help depict measurements of sensitivity for combinations of the system's data sources
(55).

Discussion. A literature review can be helpful in determining sensitivity


measurements for a public health surveillance system (56). The assessment of the
sensitivity of each data source, including combinations of data sources, can determine
if the elimination of a current data source or if the addition of a new data source would
affect the overall surveillance results (48).

A public health surveillance system that does not have high sensitivity can still be
useful in monitoring trends as long as the sensitivity remains reasonably constant over
time. Questions concerning sensitivity in surveillance systems most commonly arise
when changes in the occurrence of a health-related event are noted. Changes in
sensitivity can be precipitated by some circumstances (e.g., heightened awareness of a
health-related event, introduction of new diagnostic tests, and changes in the method
of conducting surveillance). A search for such "artifacts" is often an initial step in
outbreak investigations.

D.2.f. Predictive Value Positive

Definition. Predictive value positive (PVP) is the proportion of reported cases that
actually have the health-related event under surveillance (43).

Methods. The assessment of sensitivity and of PVP provide different perspectives


regarding how well the system is operating. Depending on the objectives of the public
health surveillance system, assessing PVP whenever sensitivity has been assessed
might be necessary (47--50,53). In this report, PVP is represented by A/(A+B) (Table
3).

In assessing PVP, primary emphasis is placed on the confirmation of cases reported


through the surveillance system. The effect of PVP on the use of public health
resources can be considered on two levels. At the level of case detection, PVP affects
the amount of resources used for case investigations. For example, in some states,
every reported case of type A hepatitis is promptly investigated by a public health
nurse, and contacts at risk are referred for prophylactic treatment. A surveillance
system with low PVP, and therefore frequent "falsepositive" case reports, would lead
to misdirected resources.

At the level of outbreak (or epidemic) detection, a high rate of erroneous case reports
might trigger an inappropriate outbreak investigation. Therefore, the proportion of
epidemics identified by the surveillance system that are true epidemics can be used to
assess this attribute.

Calculating the PVP might require that records be kept of investigations prompted by
information obtained from the public health surveillance system. At the level of case
detection, a record of the number of case investigations completed and the proportion
of reported persons who actually had the health-related event under surveillance would
allow the calculation of the PVP. At the level of outbreak detection, the review of
personnel activity reports, travel records, and telephone logbooks might enable the
assessment of PVP. For some surveillance systems, however, a review of data external
to the system (e.g., medical records) might be necessary to confirm cases to calculate
PVP. Examples of data sources used to assess the PVP of health information or public
health surveillance systems include medical records (48,57), registries (49,58), and
death certificates (59).

To assess the PVP of the system adequately, calculating more than one measurement
of the attribute might be necessary. For example, PVP could be determined for the
system's data fields, for each data source or combinations of data sources (48), or for
specific health-related events (49).

Discussion. PVP is important because a low value means that noncases might be
investigated, and outbreaks might be identified that are not true but are instead
artifacts of the public health surveillance system (e.g., a "pseudo-outbreak").
Falsepositive reports can lead to unnecessary interventions, and falsely detected
outbreaks can lead to costly investigations and undue concern in the population under
surveillance. A public health surveillance system with a high PVP will lead to fewer
misdirected resources.

The PVP reflects the sensitivity and specificity of the case definition (i.e., the
screening and diagnostic tests for the health-related event) and the prevalence of the
health-related event in the population under surveillance. The PVP can improve with
increasing specificity of the case definition. In addition, good communication between
the persons who report cases and the receiving agency can lead to an improved PVP.

D.2.g. Representativeness

Definition. A public health surveillance system that is representative accurately


describes the occurrence of a health-related event over time and its distribution in the
population by place and person.

Methods. Representativeness is assessed by comparing the characteristics of reported


events to all such actual events. Although the latter information is generally not
known, some judgment of the representativeness of surveillance data is possible, based
on knowledge of

characteristics of the population, including, age, socioeconomic status, access to


health care, and geographic location (60);
clinical course of the disease or other health-related event (e.g., latency period,
mode of transmission, and outcome [e.g., death, hospitalization, or disability]);
prevailing medical practices (e.g., sites performing diagnostic tests and
physicianreferral patterns) (33,61); and
multiple sources of data (e.g., mortality rates for comparison with incidence data and
laboratory reports for comparison with physician reports).

Representativeness can be examined through special studies that seek to identify a


sample of all cases. For example, the representativeness of a regional injury
surveillance system was examined using a systematic sample of injured persons (62).
The study examined statistical measures of population variables (e.g., age, sex,
residence, nature of injury, and hospital admission) and concluded that the differences
in the distribution of injuries in the system's database and their distribution in the
sampled data should not affect the ability of the surveillance system to achieve its
objectives.

For many health-related events under surveillance, the proper analysis and
interpretation of the data require the calculation of rates. The denominators for these
rate calculations are often obtained from a completely separate data system maintained
by another agency (e.g., the United States Bureau of the Census in collaboration with
state governments [63]). The choice of an appropriate denominator for the rate
calculation should be given careful consideration to ensure an accurate representation
of the health-related event over time and by place and person. For example,
numerators and denominators must be comparable across categories (e.g., race [64],
age, residence, and/or time period), and the source for the denominator should be
consistent over time when measuring trends in rates. In addition, consideration should
be given to the selection of the standard population for the adjustment of rates (65).

Discussion. To generalize findings from surveillance data to the population at large,


the data from a public health surveillance system should accurately reflect the
characteristics of the health-related event under surveillance. These characteristics
generally relate to time, place, and person. An important result of evaluating the
representativeness of a surveillance system is the identification of population
subgroups that might be systematically excluded from the reporting system through
inadequate methods of monitoring them. This evaluation process enables appropriate
modification of data collection procedures and more accurate projection of incidence
of the health-related event in the target population (66).

For certain health-related events, the accurate description of the event over time
involves targeting appropriate points in a broad spectrum of exposure and the resultant
disease or condition. In the surveillance of cardiovascular diseases, for example, it
might be useful to distinguish between preexposure conditions (e.g., tobacco use
policies and social norms), the exposure (e.g., tobacco use, diet, exercise, stress, and
genetics), a pre-symptomatic phase (e.g., cholesterol and homocysteine levels), early-
staged disease (e.g., abnormal stress test), late-staged disease (e.g., angina and acute
myocardial infarction), and death from the disease. The measurement of risk factor
behaviors (e.g., tobacco use) might enable the monitoring of important aspects in the
development of a disease or other health-related event.

Because surveillance data are used to identify groups at high risk and to target and
evaluate interventions, being aware of the strengths and limitations of the system's
data is important. Errors and bias can be introduced into the system at any stage (67).
For example, case ascertainment (or selection) bias can result from changes in
reporting practices over time or from differences in reporting practices by geographic
location or by health-care providers. Differential reporting among population
subgroups can result in misleading conclusions about the health-related event under
surveillance.

D.2.h. Timeliness

Definition. Timeliness reflects the speed between steps in a public health surveillance
system.

Methods. A simplified example of the steps in a public health surveillance system is


included in this report (Figure 2). The time interval linking any two of these steps can
be examined. The interval usually considered first is the amount of time between the
onset of a health-related event and the reporting of that event to the public health
agency responsible for instituting control and prevention measures. Factors affecting
the time involved during this interval can include the patient's recognition of
symptoms, the patient's acquisition of medical care, the attending physician's diagnosis
or submission of a laboratory test, the laboratory reporting test results back to the
physician and/or to a public health agency, and the physician reporting the event to a
public health agency. Another aspect of timeliness is the time required for the
identification of trends, outbreaks, or the effect of control and prevention measures.
Factors that influence the identification process can include the severity and
communicability of the health-related event, staffing of the responsible public health
agency, and communication among involved health agencies and organizations. The
most relevant time interval might vary with the type of health-related event under
surveillance. With acute or infectious diseases, for example, the interval from the
onset of symptoms or the date of exposure might be used. With chronic diseases, it
might be more useful to look at elapsed time from diagnosis rather than from the date
of symptom onset.

Discussion. The timeliness of a public health surveillance system should be evaluated


in terms of availability of information for control of a health-related event, including
immediate control efforts, prevention of continued exposure, or program planning.
The need for rapidity of response in a surveillance system depends on the nature of the
health-related event under surveillance and the objectives of that system. A study of a
public health surveillance system forShigella infections, for example, indicated that
the typical case of shigellosis was brought to the attention of health officials 11 days
after onset of symptoms --- a period sufficient for the occurrence of secondary and
tertiary transmission. This example indicates that the level of timeliness was not
satisfactory for effective disease control (68). However, when a long period of latency
occurs between exposure and appearance of disease, the rapid identification of cases
of illness might not be as important as the rapid availability of exposure data to
provide a basis for interrupting and preventing exposures that lead to disease. For
example, children with elevated blood lead levels and no clinically apparent illness are
at risk for adverse health-related events. CDC recommends that follow-up of
asymptomatic children with elevated blood lead levels include educational activities
regarding lead poisoning prevention and investigation and remediation of sources of
lead exposure (69). In addition, surveillance data are being used by public health
agencies to track progress toward national and state health objectives (38,70).

The increasing use of electronic data collection from reporting sources (e.g., an
electronic laboratory-based surveillance system) and via the Internet (a web-based
system), as well as the increasing use of electronic data interchange by surveillance
systems, might promote timeliness (6,29,71,72).

D.2.i. Stability

Definition. Stability refers to the reliability (i.e., the ability to collect, manage, and
provide data properly without failure) and availability (the ability to be operational
when it is needed) of the public health surveillance system.

Methods. Measures of the system's stability can include

the number of unscheduled outages and down times for the system's computer;
the costs involved with any repair of the system's computer, including parts, service,
and amount of time required for the repair;
the percentage of time the system is operating fully;
the desired and actual amount of time required for the system to collect or receive
data;
the desired and actual amount of time required for the system to manage the data,
including transfer, entry, editing, storage, and back-up of data; and
the desired and actual amount of time required for the system to release data.

Discussion. A lack of dedicated resources might affect the stability of a public health
surveillance system. For example, workforce shortages can threaten reliability and
availability. Yet, regardless of the health-related event being monitored, a stable
performance is crucial to the viability of the surveillance system. Unreliable and
unavailable surveillance systems can delay or prevent necessary public health action.

A more formal assessment of the system's stability could be made through modeling
procedures (73). However, a more useful approach might involve assessing stability
based on the purpose and objectives of the system.

Task E. Justify and State Conclusions, and Make Recommendations

Conclusions from the evaluation can be justified through appropriate analysis,


synthesis, interpretation, and judgement of the gathered evidence regarding the
performance of the public health surveillance system (Task D). Because the
stakeholders (Task A) must agree that the conclusions are justified before they will use
findings from the evaluation with confidence, the gathered evidence should be linked
to their relevant standards for assessing the system's performance (Task C). In
addition, the conclusions should state whether the surveillance system is addressing an
important public health problem (Task B.1) and is meeting its objectives (Task B.2).

Recommendations should address the modification and/or continuation of the public


health surveillance system. Before recommending modifications to a system, the
evaluation should consider the interdependence of the system's costs (Task B.3) and
attributes (Task D.2). Strengthening one system attribute could adversely affect
another attribute of a higher priority. Efforts to improve sensitivity, PVP,
representativeness, timeliness, and stability can increase the cost of a surveillance
system, although savings in efficiency with computer technology (e.g., electronic
reporting) might offset some of these costs. As sensitivity and PVP approach 100%, a
surveillance system is more likely to be representative of the population with the event
under surveillance. However, as sensitivity increases, PVP might decrease. Efforts to
increase sensitivity and PVP might increase the complexity of a surveillance system --
- potentially decreasing its acceptability, timeliness, and flexibility. In a study
comparing health-department--initiated (active) surveillance and providerinitiated
(passive) surveillance, for example, the active surveillance did not improve timeliness,
despite increased sensitivity (61). In addition, the recommendations can address
concerns about ethical obligations in operating the system (74).

In some instances, conclusions from the evaluation indicate that the most appropriate
recommendation is to discontinue the public health surveillance system; however, this
type of recommendation should be considered carefully before it is issued. The cost of
renewing a system that has been discontinued could be substantially greater than the
cost of maintaining it. The stakeholders in the evaluation should consider relevant
public health and other consequences of discontinuing a surveillance system.

Task F. Ensure Use of Evaluation Findings and Share Lessons Learned

Deliberate effort is needed to ensure that the findings from a public health surveillance
system evaluation are used and disseminated appropriately. When the evaluation
design is focused (Task C), the stakeholders (Task A) can comment on decisions that
might affect the likelihood of gathering credible evidence regarding the system's
performance. During the implementation of the evaluation (Tasks D and E),
considering how potential findings (particularly negative findings) could affect
decisions made about the surveillance system might be necessary. When conclusions
from the evaluation and recommendations are made (Task E), follow-up might be
necessary to remind intended users of their planned uses and to prevent lessons
learned from becoming lost or ignored.

Strategies for communicating the findings from the evaluation and recommendations
should be tailored to relevant audiences, including persons who provided data used for
the evaluation. In the public health community, for example, a formal written report or
oral presentation might be important but not necessarily the only means of
communicating findings and recommendations from the evaluation to relevant
audiences. Several examples of formal written reports of surveillance evaluations have
been included in peer-reviewed journals (51,53,57,59,75).

SUMMARY

The guidelines in this report address evaluations of public health surveillance systems.
However, these guidelines could also be applied to several systems, including health
information systems used for public health action, surveillance systems that are pilot
tested, and information systems at individual hospitals or health-care centers.
Additional information can also be useful for planning, establishing, as well as
efficiently and effectively monitoring a public health surveillance system (6--7).

To promote the best use of public health resources, all public health surveillance
systems should be evaluated periodically. No perfect system exists; however, and
tradeoffs must always be made. Each system is unique and must balance benefit versus
personnel, resources, and cost allocated to each of its components if the system is to
achieve its intended purpose and objectives.

The appropriate evaluation of public health surveillance systems becomes paramount


as these systems adapt to revised case definitions, new health-related events, new
information technology (including standards for data collection and sharing), current
requirements for protecting patient privacy, data confidentiality, and system security.
The goal of this report has been to make the evaluation process inclusive, explicit, and
objective. Yet, this report has presented guidelines --- not absolutes --- for the
evaluation of public health surveillance systems. Progress in surveillance theory,
technology, and practice continues to occur, and guidelines for evaluating a
surveillance system will necessarily evolve.

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Appendix B.
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Table 1

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Figure 1
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Table 2
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Figure 2
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Table 3

Common questions

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Factors influencing the acceptability of a public health surveillance system include the perceived importance of the health-related event, the ease of data reporting, privacy and confidentiality safeguards, and the responsiveness of the system to participants' feedback. High acceptability is significant as it ensures continued cooperation from data providers, resulting in comprehensive and accurate data collection. This cooperation is fundamental to the system's overall effectiveness and public health impact .

Sensitivity affects a surveillance system's ability to detect health-related events by determining the proportion of actual cases that are detected by the system. A higher sensitivity means the system is more capable of identifying outbreaks and understanding the natural course of adverse health events within the population. This attribute is crucial for timely intervention and resource allocation in public health responses .

Data quality directly influences the effectiveness of a public health surveillance system by determining the reliability and validity of the information reported. High-quality data ensure accurate identification of trends, the magnitude of health events, and the effectiveness of interventions. Factors affecting data quality include clear case definitions, well-designed data forms, adequate training, and proper data management, which collectively lead to better decision-making and public health outcomes .

The standards of utility, feasibility, propriety, and accuracy are crucial in evaluating public health surveillance systems as they ensure the evaluations are effective and practical. Utility ensures that the evaluation serves the information needs of intended users. Feasibility considers the practicality of the evaluation, including the consideration of resource availability and operational constraints. Propriety ensures that the evaluation is conducted with ethical standards and legal guidelines. Accuracy ensures that the evaluation yields valid information by employing sound methods and suitable data analysis techniques adapted from these standards .

A surveillance system's flexibility allows it to adapt to new health-related events and changing information needs. This adaptability is beneficial for monitoring public health outcomes because it enables the system to incorporate new data types, adjust to emerging health threats, and integrate novel technologies or methodologies without requiring major system overhauls. Flexibility ensures sustained relevance and utility in dynamic public health environments .

The usefulness of a health surveillance system can be determined by assessing its ability to contribute to preventing and controlling adverse health events. This involves evaluating whether the system provides timely data that support accurate diagnoses, trend detection, and an understanding of health-related events. Additionally, it assesses whether the system's data aids in policy-making, program development, and whether it instigates improved clinical, behavioral, or environmental practices aimed at health promotion .

Stakeholders play a crucial role in the evaluation of public health surveillance systems as they provide input to ensure that the evaluation addresses appropriate questions and assesses pertinent attributes effectively. Their engagement is important because it helps tailor the evaluation to be acceptable and useful for them. Stakeholders such as public health practitioners, healthcare providers, and community representatives use the data to promote healthy lifestyles and prevent diseases, making their input invaluable for relevance and applicability .

Increased predictive value positive enhances resource allocation by improving the accuracy with which a system identifies true cases among those detected, thereby allowing public health officials to focus resources more effectively on actual health-related events rather than on false positives. This precision in detection helps in targeting interventions, enhancing the efficiency of control measures, and thereby maximizing the impact of available resources on health outcomes .

Assessing representativeness involves comparing the system's data against other known data sources to evaluate if the surveillance data truly reflects the population at risk. This can include examining demographic distributions, geographic coverage, and consistency over time. Using statistical analysis to detect any biases or gaps in data collection ensures that the system's data accurately represents the broader population affected by the health-related event .

The public health importance of a health-related event can be assessed by examining the number of people affected, the resources required for management, the severity of the event, and its potential for disease outbreaks. Events that affect many or require substantial resources are considered important. Additionally, even events affecting few may be important if they cause significant public concern or have the potential to re-emerge as major health issues .

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