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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
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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.
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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
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1V
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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
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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'
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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''
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- - -
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
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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
OCR for page R10
