Updated Guidelines for Evaluating Public Health Surveillance Systems

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

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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