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IMPROVING RACIAL AND E TUNIC DAIA ON HEATH Deport of a Workshop Panel on DHHS Collection of Race and Ethnicity Data Daniel Melnick and Edward Perrin, Eclitors Committee on National Statistics Division of Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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 study was supported by Contract/Grant No. HHS-100-01-0022 between the Na- tional Academy of Sciences and the U.S. Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authorks) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number 0-309-09094-6 (Book) International Standard Book Number 0-309-52802-X (PDF) Additional copies of this report are available from the National Academies Press, 500 Fifth Street, 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 2004 by the National Academy of Sciences. All rights reserved. Suggested citation: National Research Council. (2004~. Improving Racial and Ethnic Data on Health: Report of a Workshop. Daniel Melnick and Edward Perrin, Editors. Panel on DHHS Collection of Race and Ethnicity Data, Committee on National Sta- tistics, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.
THE NATIONAL ACADEMIES Advisers to the Nation on Stienre, Engineering, antlMedicine 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 govern- ment. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the supe- rior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sci- ences to secure the services of eminent members of appropriate professions in the ex- amination 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. Harvey V. Fineberg is presi- dent 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 Na- tional 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. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www. nationa l-academies.org
PANEL ON DHHS COLLECTION OF RACE AND ETHNICITY DATA EDWARD PERRIN (Chair), Department of Health Services, University of Washington ANTHONY D'ANGELO, Statistical Consultant, Temecula, CA HECTOR BALCAZAR, School of Public Health, University of North 1exas JOSE ESCARCE, Scientist, University of California, Los Angeles WILLIAM KALSBEEK, Department of Biostatistics, University of North Carolina, Chapel Hill GEORGE KAPLAN, Department of Epidemiology, University of Michigan DENISE LOVE, National Association of Health Data Organizations, Salt Lake City, UT JOHN LUMPKIN, Robert Wood Johnson Foundation, Princeton, NO ALVIN ONAKA, Department of Health, Health Status Monitoring and State Registrar of Vital Statistics, Honolulu, HI NEIL POWE, Welch Center for Prevention Epidemiology and Clinical Research, The Johns Hopkins Medical Institutions JONATHAN SKINNER, Department of Economics, Dartmouth College L. CARL VOLPE, Strategic Health Partnerships, WellPoint Health Networks, Inc., Thousand Oaks, CA DAVID WILLIAMS, Department of Sociology, University of Michigan ALAN ZASLAVS KY, Department of Health Care Policy, Harvard Medical School MICHELE VER PLOEG, Staidly Director IAMB CASEY, Research Assistant TANYA M. LEE, Project Assistant MARY GRACE KOVAR, Consultant DANIEL MELNICK, Consultant v
COMMITTEE ON NATIONAL STATISTICS 2002-2003 JOHN E. ROLPH (Chair), Marshall School of Business, University of Southern California JOSEPH G. ALTONII, Department of Economics, Yale University ROBERT BELL, AT&T Research Laboratories, Florham Park, NO LAWRENCE D. BROWN, Department of Statistics, The Wharton School, University of Pennsylvania ROBERT M. GROVES, Survey Research Center, University of Michigan JOEL L. HOROWITZ, Department of Economics, Northwestern University WILLIAM KALSBEEK, Survey Research Unit, Department of Biostatistics, University of North Carolina, Chapel Hill ARLEEN LEIBOWITZ, School of Public Policy and Social Research, University of California, Los Angeles THOMAS A. LOUIS, Department of Biostatistics, Johns Hopkins University VIIAYAN NAIR, Department of Statistics, Department of Industrial and Operations Engineering, University of Michigan DARYL PREGIBON, AT&T Research Laboratories, Florham Park, NO KENNETH PREWITT, Russell Sage Foundation, New York NORA CATE SCHAEFFER, Department of Sociology, University of Wisconsin, Madison MATTHEW D. SHAPIRO, Department of Economics and Survey Research Center, University of Michigan ANDREW A. WHITE, Director v'
Acknowledgments I would like to thank, on behalf of the Panel on DHHS Collection of Race and Ethnicity Data, all of the individuals involved in the production of this report and the Workshop on Improving Racial and Ethnic Data in Health. I first thank the authors and discussants for their active involve- ment during the workshop (listed in Appendix C to this report); they all deserve accolades for their participation. The panel is especially grateful to the authors of the papers written for and presented during the workshop for their work on the drafts and revisions to the papers, and the workshop attendees for their active involvement during the meeting. We also thank lames Scanlon and Dale Hitchcock of the Office of the Assistant Secretary for Planning and Evaluation (AS PE) of the Department of Health and Human Services (DHHS) for their continual assistance in developing the workshop. The panel is grateful for the excellent work of the staff of the Commit- tee on National Statistics and the National Research Council for develop- ing and organizing the workshop and for writing this workshop summary. Daniel Melnick, consultant to the panel, should be commended for pre- paring the draft of this report in a timely manner and for persistent atten- tion to subsequent revisions. Michele Ver Ploog, study director for the panel, helped to develop the workshop and guided the summary through the review process. She was aided in development of the workshop by Mary Grace Kovar, consultant for the panel. lamie Casey, research assis- tant, helped organize the workshop and helped to check references and quotations for the document. The panel is thankful for the heroic efforts . . v''
- - - vIll ACKNOWLEDGMENTS Tanya Lee, project assistant, to make sure the workshop went offwithout a hitch and in the editing and development of this summary. As chair of this panel, I thank my fellow panel members for their par- ticipation in the development of the workshop, for chairing sessions of the workshop, and for their commitment in reviewing multiple drafts of the workshop report. This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with proce- dures 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 its 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 review of this report: Olivia Carter-Pokras, Department of Epide- miology and Preventive Medicine, University of Maryland School of Medi- cine; Kevin Fiscella, Departments of Family Medicine and Community & Preventive Medicine, University of Rochester School of Medicine & Den- tistry; Thomas A. Louis, Department of Biostatistics, Johns Hopkins Bloomberg School of Public Health; km Loyd, executive director, Texas Health Care Information Council, Austin, TX; and Vickie M. Mays, De- partment of Clinical Psychology, University of California, Los Angeles. Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by Richard Kulka, Social and Statistical Sciences, Research Triangle Institute. Appointed by the National Research Council, he was responsible for mak- ing certain that an 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 committee and the institution. Edward Perrin, Chair Panel on DHHS Collection of Race and Ethnicity Data
Contents Introduction The Importance of Racial and Ethnic Data Collection Laws, Regulations, Mandates, and Requirements Collecting the Data State and Local Data Collection and Reporting Private-Sector Data Collection Conclusion References Appendixes A Abbreviations B Abstracts of Papers Commissioned for the Workshop C Workshop Agenda and Participant List Six 6 10 18 23 27 32 34 37 38 42