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Guidance for the National
Healthcare Disparities
Elaine K. Swift, Editor
Committee on Guidance for Designing
A National Healthcare Disparities Report
INSTITUTE OF MEDICINE
OF THE NATIONAl ACADEMIES
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu
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THE 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.
Support for this project was provided by Agency for Healthcare
Research and Quality. The views presented in this report are those of the
Institute of Medicine Committee on Guidance for Designing a National
Healthcare Disparities Report, and are not necessarily those of the
funding agencies.
International Standard Book Number 0-309-08519-5
Additional copies of this report are available for sale Dom the
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For more information about the Institute of Medicine, visit the
TOM home page at: www.iom.edu.
Copynght 2002 by the National Academy of Sciences. All rights
reserved.
Pnnted in the United States of America.
The serpent has been a symbol of Tong life, healing, and
knowledge among almost all cultures and religions since the beginning
of recorded history. The serpent adopted as a logotype by the Institute
of Medicine is a relief carving from ancient Greece, now held by the
Staatliche Museen in Berlin.
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Ionic is cot ends we least apply.
Wiping is not enough; we angst do. ~
Goethe
.. ..... . ~ ... ....
...... . . . ......
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
Shaping the Future for Health
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THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, end Meditine
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. Wm. 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. Harvey V.
Fineberg 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. Wm. A. Wulf are chair and vice chair, respectively, of the National
Research Council
www.national-academies.org
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COMMITTEE ON GUIDANCE FOR DESIGNING
A NATIONAL HEALTHCARE DISPARITIES REPORT
Sheldon Greenfield (Chair9, Director, The Primary Care Outcomes
Research Institute, Tufts University School of Medicine
Lu Ann Aday, Professor, University of Texas School of Public Health
John Z. Ayanian, Associate Professor of Medicine and Health Care
Policy, Department of Health Care Policy, Harvard Medical School
James Bernstein, Assistant Secretary for Health, North Carolina
Department of Health and Human Services
Joseph Betancourt, Program Director, Multicultural Affairs Office,
Massachusetts General Hospital
E. Richard Brown, Director, Center for Health Policy Research,
University of California-Los Angeles
Kevin Fiscella, Associate Professor, Department of Family Medicine,
University of Rochester School of Medicine
Marsha Lillie-Blanton, Vice President, Health Policy, Kaiser Family
Foundation
Michael Marmot, Director, International Centre for Health and
Society, Department of Epidemiology and Public Health, University
College, London
Doriane C. Miller, Program Vice President, Robert Wood Johnson
Foundation
Eileen H. Peterson, Vice President, UnitedHealth Group, Center for
Health Care Policy and Evaluation
Neil R. Powe, Director, Welch Center for Prevention, Epidemiology
and Clinical Research, The Johns Hopkins Medical institutions
David T. Takeuchi, Professor, School of Social Work, University of
Washington
v
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Commissioned Paper Authors
Marian E. Gornick, Consultant, Health Services Research
Thomas A. LaVeist, Associate Professor of Health and Public Policy,
Department of Health Policy and Management, Bloomberg School of
Public Health, The Johns Hopkins University
Nicole Lurie, Paul O'Neill Alcoa Professor in Policy Analysis, RAND
Corporation
Thomas C. Ricketts OT, Professor, Department of Health Policy and
Administration, School of Public Health, University of North
Carolina-Chapel Hill
V1
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Study Staff
Elaine K. Swift, Study Director
Janet M. Corrigan, Director, Board of Health Care Services
Hope R. Hare, Senior Project Assistant
Auxiliary Staff
Teresa Redd, Financial Analyst
Copy Editor
. .
V11
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REVIEWERS
The report was reviewed by individuals chosen for their diverse perspectives
and technical expertise in accordance with procedures approved by the
National Research Council's Report Review Committee. The purpose of this
independent review is to provide candid and critical comments to assist the
authors and the Institute of Medicine 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. The committee wishes to thank the following
individuals for their reviews of this report:
H. Jack Geiger, The City University of New York
Christopher Gibbons, The Johns Hopkins University
Margarita P. Hurtado, American Institutes of Research
Kala Ladenheim, National Conference of State Legislatures
Elaine Larson, Columbia University
Ruth T. Perot, Summit Health Institute for Research and Education
David Satcher, The Henry M. Kaiser Family Foundation
Although the reviewers listed above have provided many constructive
comments and suggestions, they were not asked to endorse the guidance
offered by the committee nor did they see the final draft of the report before
its release. Responsibility of the final content of this report rests entirely with
the authoring committee and institution.
The review of this report was overseen by Shoshanna Sofaer, Robert P.
Luciano Professor of Health Care Policy at the School of Public Affairs,
Baruch College, who was responsible for making certain that an independent
examination of this report was carried out in accordance with institutional
procedures and that all review comments were carefully considered.
. . .
vail
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ACKNOWLEDGMENTS
Many individuals and organizations contributed to the work of the
committee. The Agency for Healthcare Research and Quality (AHRQ)
provided financial support and technical assistance. In particular, we
would like to thank Carolyn CIancy, Acting Director, AHRQ; Helen
Burstin, Director, Center for Primary Care Research; and Thomas W.
Reilly, former director, National Quality Report.
We would also like to thank the authors of commissioned papers:
Marian E. Gornick, Thomas A. LaVeist, Nicole Lurie, and Thomas C.
Ricketts, III.
We acknowledge the experts who provided helpful background at the
committee's organizational meeting held in Manual, 2002. They
include Claudette Bennett, Chief, Racial Statistics Branch, U.S.
Census Bureau; Adrienne Stith Butler, Program Officer, the Institute
of Medicine's Committee on Understanding and Eliminating Racial
and Ethnic Disparities in Health Care; Diane Makuc, Director,
Division of Health and Utilization Analysis, National Center for
Health Statistics; Brian D. Smedley, Senior Program Officer and Study
Director, the Institute of Medicine's Committee on Understanding and
Eliminating Racial and Ethnic Disparities in Health Care; Shelly Ver
Ploeg, Senior Program Officer and Study Director, the National
Research CounciT's Panel on DHHS Collection of Race and Ethnicity
Data; and Helen W. Wu, Minority Health Project Director, National
Quality Forum.
Many people contributed to the committee's workshop on the National
Healthcare Disparities Report (NHDR) held in March, 2002. They
include: Dennis P. AndruTis, Research Professor, State University of
New York Health Sciences Center; Roger I. Bulger, President and
Chief Executive Officer, Association of Academic Health Centers; I.
Emilio Carrillo, Chief Executive Officer, New York Presbyterian
Community Health Plan; Kathryn Coltin, Director, External Quality
and Data Initiatives, Harvard Pilgrim Health Care; Merle
Cunningham, Medical Director, Sunset Park Family Health Center
Network of the Lutheran Medical Center, Brooklyn, New York; Gem
P. Daus, Legislative and Governmental Affairs Coordinator, Asian and
Pacific Islander American Health Forum; Arthur Elster, Director,
1X
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Medicine and Public Health, American Medical Association; Vanessa
Northington Gamble, Health Policy and Medical Education
Consultant; JuTianna S. Gonen, Director, Center for Prevention and
Health Services, Washington Business Group on Health; Gina
Gregory-Burns, Module Chief, Centro de Salud, Kaiser Permanente of
San Francisco; Andrew I. Imparato, President and Chief Executive
Officer, American Association of People with Disabilities; Keith
Mueller, Director, Nebraska Center for Rural Health Research,
University of Nebraska; David Nerenz, Director, Institute for Health
Care Studies, Michigan State University; Darlene Nipper, Director,
Multicultural and International Outreach Center, National Alliance for
the Mentally Ill; Rea Panares, Manager, Center for Prevention and
Health Services, Washington Business Group on Health; Lucille
Norville Perez, President, National Medical Association; Jeanette
South-PauT (representing the American Association of Family
Physicians), Chair, Department of Family Medicine, University of
Pittsburgh School of Medicine; Ulder I. TilIman (representing the
Association of State and Territorial Health Officials), Director,
Delaware Health and Social Services Division of Public Health;
AdewaTe Troutman, Director of Public Health Services, Fulton County
Health Nepal lenient, Georgia (representing the National Association of
City and County Health Officers); and Steven WiThide, Executive
Director, National Rural Health Association.
x
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PREFACE
Health care disparities deserve our attention. This nation
believes that health care should not differ by race, ethnicity,
socioeconomic status, or geographic location. And yet, ample evidence
indicates that disparities exist.
The existence of health care disparities is common knowledge
to some. However, as indicated by the headlines on the release of the
Institute of Medicine report, Unequal Treatment (TOM, 2002), it is
news to many. This is where the National Healthcare Disparities
Report (NHDR), to be issued by the Agency for Healthcare Research
and Quality (AHRQj, could make a major difference. As a new annual
report to Congress on racial, ethnic, socioeconomic, and geographic
disparities, it has the potential to educate both policy makers and the
larger public on the extent of health care disparities and to focus their
attention on areas where action is most needed. In other words, the
NHDR could help to set the agenda for a major health care issue that
too few are either familiar with or know how to effectively address.
To help the NHDR fulfill its potential, AHRQ commissioned
the IOM to provide guidance on technical aspects of the report,
including the measurement of disparities in health care access, quality,
and service utilization; the measurement of socioeconomic status and
geographic disparities; and the use of subnational datasets to support
disparity measurement.
The TOM named the Committee for Guidance in Designing a
National Health Care Disparities Report to carry out this work.
Committee members contributed their considerable expertise in
community health; health care delivery systems; health care disparity
measurement and prevention; health care access; service utilization;
quality measurement; and health care datasets.
The committee engaged several consultants to provide further
background on the areas it was charged with studying. Commissioned
papers by Marian E. Gornick (on the measurement of socioeconomic
status), Thomas A. LaVeist (on the measurement of disparities in
service utilization and quality), Nicole Lurie (on the measurement of
disparities in access), and Thomas C. Ricketts, ITT (on the
X1
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measurement of geographic disparities), are included in this
publication.
The committee met twice. In January 2002, it held a meeting
to gather background information from experts from AH:RQ, the U.S.
Bureau of the Census, the National Center for Health Statistics
(NCHS), the National Quality Forum (NQF), and the IOM. Experts
from AHRQ briefed committee members on the agency's work on
health care disparities and the conceptual framework that will be used
by both the NHDR and another new and related annual report to
Congress, the National Healthcare Quality Report (NHQR). Members
were also briefed on Census 2000 findings on race and ethnicity as
well as on a recent government report from NCHS on geographic
health care disparities. Lastly, the committee learned about other
studies on disparities by the NQF and the IOM. During this meeting, it
also met in closed and open session to plan its work and to hold
preliminary discussions on its charge.
In March 2002, it held another meeting to hear presentations
from the consultants and testimony from invited academics, clinicians,
advocates, and other experts in health care disparities. Drawn from
across the country, these experts offered their perspectives on what the
content of the report should be, including the areas of disparities that
should be measured; the need for accurate data; and the different ways
in which policy makers at the federal, state, and local levels might find
the report useful. The committee also met in closed session to reach
agreement on the response to its charge.
Following the March meeting, committee members continued
to communicate by telephone and electronic mail. The guidance that
the committee has issued is highlighted in the text of the Executive
Summary and the Committee Report and is based on consensual
agreement. This guidance addresses issues that include the challenges
of adequately measuring racial and ethnic health care disparities; the
need for an AHRQ-sponsored research initiative on the relationship
between socioeconomic status and health care; and the primacy of
disparities in health care access. The committee's guidance also
focuses on the importance of including measures of high and low
utilization of certain health care services, of presenting data on
. .
X11
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disparities at the state level and along the rural-urban continuum, and
of standardizing core elements of sutnational datasets. It also
addresses AHRQ's need for adequate resources to carry out technical
tasks for the report.
The committee looks forward to the publication of the first
and subsequent editions of the NHDR. By attracting attention and
raising awareness, it could help to set the standard for other health care
reports. Even more importantly, by providing authoritative
information on areas ripe for action, it could play a central role in
speeding the elimination of health care dispanties and making good
the promise of genuine health care equity.
Sheldon Greenfield,
Chair
Reference mist
TOM. 2002. Unequal Treatment: Confronting Racial and Ethnic Disparities
in Health Care. B. Smedley, A. Stith, and A. Nelson, eds. Washington
DC: National Academy Press.
. . .
x~
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Table of Contents
EXECUTIVE SUMMARY 1
1 COMMITTEE REPORT 10
1-1. Measurement of Socioeconomic Status in Disparities Research 13
1-2. Measurement of Disparities in Access to and within the Health
Care System..............................................................
................... 19
1-3. Measurement of Disparities in Health Care Services and Quality ...22
1-4. Measurement of Geographic Disparities in Health Care 23
1-5. Subnational Datasets 26
1-6. General Issues 31
1-7. Conclusion 35
2 MEASURING THE EFFECTS OF SOCIOECONOMIC STATUS ON
HEALTH CARE 45
2-1. Studying the Effects of Socioeconomic Status on Health ..............
2-2. Review of Methods Used in Studying the Effects of
..46
, ~
Socioeconomic Status on Health 47
2-3. Review of Methods Used in Studying Disparities in Health Care 55
2-4. Methodological Issues in Studies of Health Care Disparities 67
2-5. Conclusion 68
MEASURING DISPARITIES IN HEALTH CARE QUALITY AND
SERVICE UTILIZATION 75
3-1. Race, Ethnicity, and Differences In Health Care 76
3-2. Creating a National Healthcare Disparities Report 85
3-3. Conclusion 91
4 MEASURING DISPARITIES In ACCESS TO CARE ........................
99
4-1. Setting the Context 100
4-2. Evolving Conceptual Frameworks of Access to Care 102
4-3. Access to Care and the Quality Framework 107
4-4. Challenges to Examining Disnarities in Access .... 113
4-5. Principles Guiding Measurement of Access in the National
Healthcare Disparities Report..........
4-6. Core Measures...................................
4-7. Suggestions.......................................
4-8. Choosing among Potential Measures ........
4-9. Conclusion.................................................
121
122
127
.139
.142
GEOGRAPHY AND DISPARITIES IN HEALTH CARE 149
5-1. Geography..
XIV
149
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5-2. Interstate Geography....
5-3. Intrastate Geography....
5-4. Technical Issues .....................................................................
5-5. Conclusion........................
........ 157
........ 169
...... 172
APPENDIX I WORKSHOP AGENDA 181
APPENDIX II PUBLIC TESTIMONY
APPENDIX III COMMITTEE BIOGRAPHIES
Tables and Figures
List of Tables
..... 185
..189
TABLE ES 1 Guidance for the National Healthcare Disparities Report............
TABLE 1-1 Possible Subnational Datasets to Support the National
Healthcare Disparities Report (NHDR)...........................
..27
TABLE 3-1 Areas of Health Care with the Greatest Disparities in Services
and Quality (Selected Studies) 82
TABLE 3-2 Hyperdisparities among Medicare Enrollees Age 65
and Over
.84
TABLE 3-3 Assessment of Measures for Health Care Disparities 86
..... 89
TABLE 3-4 Simulated Data
TABLE 4-1 Example of Access-related Quality Measures 107
TABLE 4-2 Staying Healthy 136
TABLE 4-3 Getting Better 137
TABLE 4-4 Living with Illness or Disability 138
TABLE 5-1 United States Political and Statistical Jurisdictions 166
TABLE II-1 Expert Testimony on the National Healthcare Disparities
~ - fort
List Of Figures
...186
FIGURE 1-1 Framework for the National Healthcare Quality Report and
the National Healthcare Disparities Report 12
FIGURE 4-1 Relationship between Population and Personal Delivery
Systems.............................................................................
FIGURE 4-2 Relationship among Access to Care, Community, and Health
Care Quality 114
FIGURE 5- 1 Variations among States in Life Years Lost and Per Capita
Spending for Health 158
xv
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