Toward a Health Statistics System for the 21st Century

SUMMARY OF A WORKSHOP

Committee on National Statistics

Edward B.Perrin, William D.Kalsbeek, and Terri M.Scanlan, Editors

Division of Behavioral and Social Sciences and Education

National Research Council

NATIONAL ACADEMY PRESS
Washington, DC



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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Toward a Health Statistics System for the 21st Century SUMMARY OF A WORKSHOP Committee on National Statistics Edward B.Perrin, William D.Kalsbeek, and Terri M.Scanlan, Editors Division of Behavioral and Social Sciences and Education National Research Council NATIONAL ACADEMY PRESS Washington, DC

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 20418 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. The project that is the subject of this report was supported by funds provided by the Office of the Assistant Secretary for Planning and Evaluation of the U.S. Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. Support of the work of the Committee on National Statistics is provided by a consortium of federal agencies through a grant from the National Science Foundation (No. SBR-9709489) between the National Academy of Sciences and the National Science Foundation. International Standard Book Number 0-309-07582-3 Additional copies of this report are available from National Academy Press, 2101 Constitution Avenue, N.W., Lockbox 285, Washington, DC 20055; (800) 624–6242 or (202) 334–3313 (in the Washington metropolitan area); Internet, http://www.nap.edu Printed in the United States of America Copyright 2001 by the National Academy of Sciences. All rights reserved. Suggested Citation: National Research Council (2001) Toward a Health Statistics System for the 21st Century: Summary of a Workshop. Committee on National Statistics, Edward B.Perrin, William D.Kalsbeek, and Terri M.Scanlan, Editors. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council The National Academy of Sciences is a private, nonprofit, self-perpetuating 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. Bruce M.Alberts 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. William A.Wulf 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. Bruce M.Alberts and Dr. William A.Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop COMMITTEE ON NATIONAL STATISTICS 1999–2000 JOHN E.ROLPH (Chair), Marshall School of Business, University of Southern California JOSEPH G.ALTONJI, Department of Economics, Northwestern University LAWRENCE D.BROWN, Department of Statistics, University of Pennsylvania JULIE DAVANZO, RAND, Santa Monica, California WILLIAM F.EDDY, Department of Statistics, Carnegie Mellon University HERMANN HABERMANN, Statistics Division, United Nations, New York WILLIAM D.KALSBEEK, Survey Research Unit, Department of Biostatistics, University of North Carolina RODERICK J.A.LITTLE, School of Public Health, University of Michigan THOMAS A.LOUIS, RAND, Arlington, Virginia CHARLES F.MANSKI, Department of Economics, Northwestern University EDWARD B.PERRIN, Department of Health Services, University of Washington FRANCISCO J.SAMANIEGO, Division of Statistics, University of California, Davis RICHARD L.SCHMALENSEE, Sloan School of Management, Massachusetts Institute of Technology MATTHEW D.SHAPIRO, Department of Economics, University of Michigan ANDREW A.WHITE, Director

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Acknowledgments The Committee on National Statistics (CNSTAT) appreciates the time, effort, and valuable input of the many people who contributed to the workshop and to the preparation of this report. We would first like to thank those who made presentations identifying many of the key issues in this area. We would also like to thank all those who attended the workshop and participated in the discussions during which many important issues and concerns were raised and are captured in this summary report. Thanks are due especially to Edward Perrin, former CNSTAT member, who as workshop chair provided valuable advice during the planning stages and the leadership necessary for conducting a successful workshop. We are also grateful to Dr. Perrin for his immeasurable help in the writing of this summary report. We would also like to thank William Kalsbeek, CNSTAT member, for his assistance in the planning of the workshop and for his significant contributions to this report. The agenda for the workshop was developed in consultation with Edward Sondik, Director of the National Center for Health Statistics, whose input was essential in identifying workshop objectives. Appreciation is also extended to the members and staff of the U.S. National Committee on Vital and Health Statistics (NCVHS) and the Department of Health and Human Services (DHHS) Data Council. We also thank the Office of the Assistant Secretary for Planning and Evaluation, DHHS, the funder of the workshop.

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Particular appreciation is due to those who worked to organize the workshop and prepare this report. Jane Durch served as study director for the workshop until October 1999, and was instrumental in planning the workshop and developing the agenda. Miron Straf, former CNSTAT director, was responsible for early project development and workshop planning. Andrew White, also involved in early workshop development, oversaw the planning and execution of the workshop and the preparation of this report. Jonathan Zaff prepared the initial report draft. Terri Scanlan assisted in organizing the workshop, contributed to early report drafts, and responded to reviewers’ comments. Agnes Gaskin was responsible for all of the details involved in organizing the workshop and preparing the report for final publication. Lorraine Ferrier edited the draft report. Eugenia Grohman, associate director for reports in the Division of Behavioral and Social Sciences and Education, guided the report through the review process, final editing, and publication. This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the Report Review Committee of the National Research Council. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their participation in the review of this report: David Cutler, Center for Advanced Study in the Behavioral Sciences, Stanford, California; Richard A.Kulka, Research Triangle Institute, Research Triangle Park, North Carolina; Thomas A.Louis, RAND, Arlington, Virginia; Denise Love, National Association of Health Data Organizations, Salt Lake City, Utah; and Alan M.Zaslavsky, Department of Health Care Policy, Harvard Medical School. Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Barbara McNeil, Department of Health Care Policy, Harvard Medical School. Appointed by the National Research Council, she was responsible for making certain that an

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring panel and the institution. John E.Rolph, Chair Committee on National Statistics

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Toward a Health Statistics System for the 21st Century: Summary of a Workshop Contents 1   INTRODUCTION   1 2   HEALTH STATISTICS: PAST, PRESENT, AND FUTURE Dorothy P.Rice   7 3   WORKSHOP DISCUSSION   31 4   SOME NEW DIRECTIONS William D.Kalsbeek and Edward B.Perrin   61     APPENDIX: WORKSHOP MATERIALS   69     Agenda,   69     Papers Presented,   77     Participants,   78

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