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A NATIONAL HEATH CARE SURVEY A DATA SYSTEM FOR THE 2]ST CENTURY Gooloo S. Wunderlich, Editor Panel on the National Health Care Survey Edward B. Perrin and William C. Richardson, Cochairs Committee on National Statistics Commission on Behavioral and Social Sciences and Education National Research Council Division of Health Care Services Institute of Medicine National Academy Press Washington, D.C. 1992

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NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The National Academy of Sciences is a private, nonprofit, self-perpetuat~ng society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Frank Press is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Robert M. White is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Frank Press and Dr. Robert M. White are chairman and vice chairman, respectively, of the National Research Council. The project that is the subject of this report was supported by funds from the National Center for Health Statistics, U.S. Department of Health and Human Services (Contract No. 200-89-7020). Library of Congress Catalog Card No. 92-80092 International Standard Book Number 0-309-04692-0 Additional copies of this report are available from: National Academy Press 2101 Constitution Avenue, NW Washington, DC 20418 S55 1 Printed in the United States of America First Pnniing, February 1992 Second Printing, February 1993

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PANEL ON THE NATIONAL HEALTH CARE SURVEY EDWARD B. PERRIN (Cochair), School of Public Health and Community Medicine, University of Washington WILLIAM C. RICHARDSON (Cochair), President, Johns Hopkins University LINDA AIKEN, Department of Sociology, University of Pennsylvania ROBERT L. BLACK, Private Pediatric Practice, Monterey, California JOHN W. COLLOTON,* The University of Iowa Hospitals and Clinics JOHN COOMBS, Statistics Canada, Ottawa, Ontario SUZANNE W. FLETCHER, Annals of Internal Medicine, Philadelphia, Pennsylvania FLOYD J. FOWLER, Center for Survey Research, University of Massachusetts DANIEL G. HORVITZ, Research Triangle Institute, Research Triangle Park, North Carolina WILLIAM KALSBEEK, Department of Biostatistics, University of North Carolina GRAHAM KALTON,** Survey Research Center, Institute for Social Research, University of Michigan SIDNEY KATZ, School of Medicine and Public Health, Columbia University DAVID MECHANIC, Institute for Health, [Iealth Care Policy, and Aging Research, Rutgers University JOSEPH NEWHOUSE, Division of Health Policy Research and Education, Harvard University ADRIAN M. OSTFELD, Department of Epidemiology and Public Health, Yale University School of Medicine GOOLOO S. WUNDERLICH, Study Director ANU PEMMARAZU, Senior Project Assistant Served until May 1991 * As of January 1992, senior statistician and vice president, Westat, Inc.

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COMMITTEE ON NATIONAL STATISTICS 1991-1992 BURTON H. SINGER (Chair), Department of Epidemiology and Public Health, Yale University NORMAN M. BRADBURN, National Opinion Research Center, University of Chicago MARTIN H. DAVID, Department of Economics, University of Wisconsin ANGUS S. DEATON, Woodrow Wilson School of Public and International Affairs, Princeton University NOREEN GOLDMAN, Office of Population Research, Princeton University LOUIS GORDON, Department of Mathematics, University of Southern California JOEL B. GREENHOUSE, Department of Statistics, Carnegie Mellon University ROBERT M. HAWSER, Department of Sociology, University of Wisconsin GRAHAM KALTON,* Survey Research Center, Institute for Social Research, University of Michigan WILLIAM A. MORRILL, Mathtech, Inc., Princeton, New Jersey DOROTHY P. RICE, Department of Social and Behavioral Sciences, School of Nursing,, University of California, San Francisco JOHN E. ROLPH, The RAND Corporation, Santa Monica, California DONALD B. RUBIN, Department of Statistics, Harvard University MIRON L. STRAP, Director SUSANNA MCFARLAND, Administrative Assistant *As of January 1992, Westat, Inc.

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INSTITUTE OF MEDICINE Board on Health Care Services WALTER J. MCNERNEY (Chair), J.L. Kellog Graduate School of Management, Northwestern University BEN D. BARKER, School of Dentistry, University of North Carolina LONNIE R. BRISTOW, San Pablo, California EDWARD J. CONNERS, Mercy Health Services, Farrnington Hills, Michigan DON E. DETMER, Health Sciences Center, University of Virginia CHARLES C. EDWARDS, Scripps Clinic & Research Foundation, La Jolla, California PAUL F. GAINER, University of Rochester Medical Center, Strong Memorial Hospital, Rochester, New York CLARK C. HAVIGHURST, Duke University School of Law SIDNEY KATZ, School of Medicine and Public Health, Columbia University JOSEPH P. NEWHOUSE, Division of Health Policy Research and Education, Harvard University ROBERT PATRICELLI, Value Health, Inc., Avon, Connecticut EDWARD B. PERRIN, School of Public Health and Community Medicine, University of Washington RICHARD J. REITEMEIER, Phoenix Alliance, St. Paul, Minnesota GAIL L. WARDEN, Henry Ford Health Care Corporation, Detroit, Michigan KARL D. YORDY, Division Director KATHLEEN N. LOHR, Deputy Director H. DONALD TILLER, Administrative Assistant

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Acknowledgments The Panel on the National Health Care Survey gratefully acknowledges the contributions of the many individuals who participated and gave gener- ously of their time and knowledge to this study. Support for the study was provided by the National Center for Health Statistics (NCHS) of the U.S. Department of Health and Human Services. The NCHS staff was very helpful in providing information about the cen- ter's health care surveys and in responding to numerous inquiries and re- quests throughout the study. We particularly wish to thank W. Edward Bacon, director of the Division of Health Care Statistics and the NCHS project officer, for his assistance throughout our deliberations. In addition, we would like to acknowledge the many federal and nonfederal government officials and those from the research community who participated in the survey of users conducted by the panel. Finally, thoughtful and helpful comments on our report were received from the many reviewers within the National Research Council, including members of the Committee on Na- tional Statistics, the Commission on Behavioral and Social Sciences and Education, the Institute of Medicine, and other external experts. We acknowledge with gratitude the contributions of staff. The panel is especially grateful for the guidance and the unstinting efforts of the study director, Gooloo S. Wunderlich, who had primary responsibility for orga- nizing the deliberations of the panel and preparing the draft of the final report, tasks that she accomplished with considerable skill and good humor. . . Vll

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~ . . V!ll ACKNOWLEDGMENTS In addition, we would like to thank Kathleen N. Lohr, Division of Health Care Services, Institute of Medicine, who prepared much of the material for Chapter 2 of the report. Early in the project, Ruth S. Hanft, professor in the Deparunent of Health Services Management and Policy at the George Washington University, prepared a background paper for the panel on issues of health care delivery and the associated data needs. We also acknowledge the efforts of project consultants Michael Cohen, in preparation of discussion drafts on statistical issues associated with the survey design, and Earl Pol- lack, especially for assistance in the early stages of the study and in the survey of users. Christine McShane, editor for the Commission on Behav- ioral and Social Sciences and Education, provided highly professional edi- torial advice on the report. The support and guidance of Karl D. Yordy, Division of Health Care Services, Institute of Medicine, as well as his assistance in the review and revision of the report, deserve special mention. The study would not have been possible without the dedicated efforts of Anu Pemmarazu, senior project assistant, in participating in the survey of users, preparing summary reports and synthesizing the findings for panel meetings, managing logistics for the large number of panel meetings, and competently handling the various drafts of the report. Finally, we would like to thank the members of the panel for their generous contribution of time and expert knowledge to the deliberations and the preparation of this report. Edward B. Perrin, Cochair William C. Richardson, Cochair Panel on the Nation ~1 Health Care Survey

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Contents EXECUTIVE SUMMARY...... Findings and Conclusions, 3 Recommendations, 10 1 INTRODUCTION....................................... Panel's Charge and Its Approach, 16 Organization of the Report, 18 2 DATA NEEDS FOR A CHANGING HEALTH CARE DELIVERY SYSTEM............................................................................... Three Critical Issues in Health Care, 20 Health Care Reform, 28 Other Factors Influencing Health Care Policy and Data Needs, 29 Users of Health Care Data, 37 Implications for Data Sources and Systems, 38 3 1 15 19 REVIEW OF THE NCHS PLAN FOR THE NATIONAL HEALTH CARESURVEY 41 Overview, 41 Periodicity, 43 Scope and Coverage, 46

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x Data Collected, 49 Design Features, 52 Conclusion, 60 4 DESIGN FOR A NATIONAL HEALTH CARE DATA SYSTEM........................................................................................ Statement of Objectives, 63 Design Considerations, 64 A Framework for a National Health Care Data System, 65 Potential Benefits of the Proposed Design Framework, 78 Implementation Strategy, 80 5 COORDINATION AND RESOURCE CONSIDERATIONS Advisory Structure for the National Health Care Data System, 83 Improving Departmental Coordination, 86 Enhancing the Center's Analytic Capability, 88 Resource Requirements, 89 APPENDICES A NCHS Plan for a National Health Care Survey, 93 B Survey of Users of National Health Care Statistics, 111 C Federal Health Data Sources, 125 D Statutory Authorities, 151 E Acronyms, 167 F Biographical Sketches, 169 SOURCES AND REFERENCES CONTENTS .62 83 175

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~ NO HEATH (ARE SURVEY

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