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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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~ . .
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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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