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A
Data Sources and Methods
In an effort to provide a comprehensive response to the study charge,
the study committee examined various sources of data to assess the scope
of disparities in healthcare, explore sources of these disparities, and gen-
erate strategies to eliminate them. These data sources included a review
of recent scientific literature, commissioned papers, public input from pro-
fessional societies and organizations, input from technical liaison panels,
and focus group/roundtable input. The committee received these data
over the course of the 17-month study period. The study timeline is de-
picted in Figure A-1.
Study Committee
A 15-member study committee was convened to assess these data.
Membership of the committee included individuals with expertise in clini-
cal medicine, economics, healthcare services research, health policy, health
professions education, minority health, psychology, anthropology and
related fields. The committee was convened for five two-day meetings
held in December 2000, February 2001, May 2001, July 2001, and Septem-
ber 2001.
Literature Review
The literature review included, but was not limited to, seminal ar-
ticles published in peer-reviewed journals within the last ten years, with
an emphasis on the most recent publications. In selecting literature to re-
271
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272
FIGURE A-1 Study components and timeline.
UNEQUAL TREATMENT
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273
A: DATA SOURCES AND METHODS
view, the committee identified only peer-reviewed studies that assessed
racial and ethnic variation in healthcare while controlling for differences
in access to healthcare (either by studying similarly insured patients or by
statistically adjusting for differences in insurance status) and socioeco-
nomic differences. This body of literature, however, represents only a frac-
tion of the published studies that investigate racial and ethnic differences
in access to and use of healthcare services.
Commissioned Papers
The study committee commissioned seven papers. These papers were
intended to provide in-depth information on selected topic areas (e.g.,
legal aspects of healthcare discrimination, studies on patient-provider in-
teraction, extensive literature review). Topics and paper authors were de-
termined by the study committee. It should be noted that the commis-
sioned paper contributions do not serve to substitute for the committee’s
own review and analysis of the literature, as described above and in Chap-
ter 1. Much of the committee’s own analysis was conducted indepen-
dently, prior to receiving the draft commissioned papers.
Public Workshops
The study committee hosted four workshops to gain additional infor-
mation from the public on aspects of the study charge. These workshops
occurred during open portions of the committee’s scheduled meetings.
The topics and nature of the workshops were determined by the study
committee. They were intended to allow the committee to gain additional
perspectives on potential sources of bias in clinical settings; institutional
or system-based obstacles that may differentially affect service provision
to racial and ethnic minority patients; other potential sources of health-
care disparities; and explore potential interventions to eliminate dispari-
ties in health service delivery. Content included the perspectives of racial
and ethnic minority and non-minority health professions organizations
(e.g., American Medical Association), and government agencies, as well
as programs and strategies employed by organizations to address dis-
parities. In addition, at the fourth workshop selected commissioned pa-
pers served as topic areas for a discussion of legal and ethical perspec-
tives. At each public workshop meeting, individuals and groups were
invited to present information to the study committee in a roundtable
setting to facilitate discussion and interaction. Agendas from public work-
shops and lists of participants are listed in Boxes A-1 through A-4.
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274 UNEQUAL TREATMENT
BOX A-1
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
NATIONAL ACADEMY OF SCIENCES,
2101 CONSTITUTION AVENUE, NW
ROOM 150
AGENDA
TUESDAY, DECEMBER 19, 2000
1:00 p.m. WELCOME AND INTRODUCTIONS
Alan Nelson, M.D.
Chair
IOM Committee on Understanding and Eliminating Racial
and Ethnic Disparities in Healthcare
1:15 p.m. OVERVIEW FROM STUDY SPONSOR
Nathan Stinson Ph.D., M.D., M.P.H.
Deputy Assistant Secretary for Minority Health,
U.S. Department of Health and Human Services
1:35 p.m. CONGRESSIONAL PERSPECTIVE
Charles Dujon
Legislative Assistant, Office of the Honorable Jessie Jack-
son, Jr. U.S. House of Representatives
2:00 p.m. PRESENTATIONS FROM OTHER INTEREST GROUPS
AND STAKEHOLDERS
Rodney Hood, M.D., National Medical Association
Adolph Falcon, M.P.P., National Alliance for Hispanic Health
Jeanette Noltenius, Ph.D., Latino Council on Alcohol and
Tobacco, Representing the Multicultural Action Agenda for
Eliminating Health Disparities
Yvonne Bushyhead, J.D., & Beverly Little Thunder, R.N.
Indian Health Board
3:00 p.m. UNDERSTANDING AND ELIMINATING RACIAL AND
ETHNIC DISPARITIES IN HEALTHCARE — WHAT IS
KNOWN AND WHAT NEEDS TO BE KNOWN?
H. Jack Geiger, M.D.
City University of New York
4:00 p.m. ADJOURN
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275
A: DATA SOURCES AND METHODS
BOX A-2
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
NATIONAL ACADEMY OF SCIENCES
CECIL AND IDA GREEN BUILDING, 2001 WISCONSIN AVENUE, NW
ROOM 126
AGENDA
TUESDAY, FEBRUARY 20, 2001
9:00 a.m. WELCOME AND INTRODUCTIONS
Alan Nelson, M.D.
Chair
IOM Committee on Understanding and Eliminating Racial
and Ethnic Disparities in Healthcare
Deborah Danoff, M.D.
9:15 a.m.
Assistant Vice President, Division of Medical Education
American Association of Medical Colleges
Paul M. Schyve, M.D.
9:45 a.m.
Senior Vice President
Joint Commission on Accreditation of Healthcare
Organizations
Sindhu Srinivas, M.D.
10:15 p.m.
President
American Medical Student Association
Mary E. Foley, R.N., M.S.
10:45 a.m.
President
American Nurses Association
Randolph D. Smoak, Jr., M.D.
11:15 a.m.
President
American Medical Association
Terri Dickerson
11:45 a.m.
Assistant Staff Director
U.S. Commission on Civil Rights
12:15 p.m. PUBLIC WORKSHOP ADJOURNS
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276 UNEQUAL TREATMENT
BOX A-3
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
NATIONAL ACADEMY OF SCIENCES
CECIL AND IDA GREEN BUILDING, 2001 WISCONSIN AVENUE, NW
ROOM 126
AGENDA
TUESDAY, MAY 15, 2001
Carolyn Clancy, M.D.
1:00 p.m.
Agency for Healthcare Research and Quality
James Youker, M.D.
1:45 p.m.
President, American Board of Medical Specialties
Ray Werntz
2:15 p.m.
Consumer Health Education Council
Vickie Mays, Ph.D., Chair
2:45 p.m.
National Committee on Vital and Health Statistics
Subcommittee on Populations
3:15 p.m. QUESTIONS AND COMMENTS
3:30 p.m. PUBLIC WORKSHOP ADJOURNS
WEDNESDAY, MAY 16, 2001
Robyn Nishimi, Ph.D.
9:00 a.m.
Chief Operating Officer, National Quality Forum
Lovell Jones, Ph.D.
9:30 a.m.
Intercultural Cancer Council
10:00 a.m. PUBLIC WORKSHOP ADJOURNS
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A: DATA SOURCES AND METHODS
BOX A-4
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
NATIONAL ACADEMY OF SCIENCES,
2101 CONSTITUTION AVENUE, NW
MAIN BUILDING—LECTURE ROOM
PUBLIC WORKSHOP
“RACE, THE MEDICAL MARKETPLACE, AND HEALTHCARE DISPARITIES”
AGENDA
THURSDAY, SEPTEMBER 6, 2001
8:30 a.m. WELCOME AND INTRODUCTIONS
Alan Nelson, M.D.
Chair, IOM Committee on Understanding and Eliminating Racial
and Ethnic Disparities in Healthcare
8:35 a.m. OPENING REMARKS
David Satcher, M.D., Ph.D.
U.S. Surgeon General
8:55 a.m. PANEL DISCUSSION
M. Gregg Bloche, J.D., M.D.
Moderator, IOM Committee on Understanding and Eliminating
Racial and Ethnic Disparities in Healthcare
PARTICIPANTS:
Richard Epstein, J.D.
James Parker Hall Distinguished Service, Professor of Law,
University of Chicago Law School
Clark C. Havighurst, J.D.
Wm. Neal Reynolds Professor of Law, Duke University School of Law
Marsha Lillie-Blanton, Dr. P.H.
Vice President in Health Policy, The Henry J. Kaiser Family Foundation
June O’Neill, Ph.D.
Director, Center for the Study of Business and Government,
Baruch College of Public Affairs
Thomas Perez, J.D., M.P.P.
Assistant Professor and Director of Clinical Law Programs,
University of Maryland Law School
Thomas Rice, Ph.D.
Professor and Vice-Chair, Department of Health Services, UCLA
School of Public Health
11:00 a.m. ADJOURN
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278 UNEQUAL TREATMENT
Technical Liaison Panels
Four liaison panels were assembled to serve as a resource to the com-
mittee, to provide advice and guidance in identifying key information
sources, to provide recommendations to the study committee regarding in-
tervention strategies, and to ensure that relevant consumer and professional
perspectives were represented. Liaison panels were composed of individu-
als with relevant experience or expertise on the study charge. Nominations
for individuals invited to the panels were sought from over 100 stakeholder
groups. Panel members included patient advocates, providers of health-
care services, payer groups, as well as representatives from ethnic minority
professional organizations and federal agencies. Each liaison panel was con-
vened by study staff in Washington, D.C. for a half-day meeting. Panelists
were asked to provide recommendations regarding potential sources of
data, intervention strategies, and other recommendations relevant to the
study charge. Discussion content and recommendations from the liaison
panels were presented by staff to the study committee at its meetings. The
agenda for panel meetings is presented in Box A-5. Lists of participants for
each of the four panels are presented in Boxes A-6 through A-9.
Focus Groups and Roundtable Discussions
A series of focus groups were conducted by the Westat Corporation,
Rockville, MD, for the study committee (see Appendix E). Information
gathered at focus group discussions was intended to afford the study com-
mittee greater insight into the experiences and perceptions of patients and
providers, supplementing data from the empirical literature, and provid-
ing a richer context for data interpretation. Qualitative data gathered
during focus group discussions were used to illustrate and expand upon
findings and recommendations provided in the committee report.
Six groups, composed of 8-10 individuals each, were conduced with
healthcare consumers with participants from various racial and ethnic
backgrounds. Two groups were conducted with African Americans: one
in Los Angeles, CA, and the other in Rockville, MD. The third group was
conducted in Los Angeles with Hispanics who were fluent in English, and
the fourth was conducted in Washington, DC, with Hispanics who identi-
fied themselves as primary Spanish-speaking with little or no English flu-
ency. The fifth group was conducted with American Indians in Albuquer-
que, New Mexico. The final group was conducted in Los Angeles with
Chinese Americans who identified themselves as primarily Mandarin-
speaking with little or no English fluency. Participants were asked to
comment on the quality of healthcare they received and experiences en-
countered when seeking medical care in a variety of public and private
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A: DATA SOURCES AND METHODS
BOX A-5
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
AGENDA—LIAISON PANEL
12:00 p.m. LUNCH
12:15 p.m. INTRODUCTIONS
Daniel J. Wooten, M.D.
IOM Scholar in Residence
Panel Chair
12:30 p.m. OVERVIEW OF IOM STUDY
Brian Smedley, Ph.D.
Adrienne Stith, Ph.D.
IOM study staff
12:45 p.m. CURRENT INITIATIVES AND RESOURCES FOCUSED ON
REDUCING HEALTHCARE DISPARITIES
1:30 p.m. BREAK
1:45 p.m. DISCUSSION OF FACTORS THAT CONTRIBUTE TO
INEQUITIES IN HEALTHCARE
2:30 p.m. PANEL INPUT—RECOMMENDATIONS TO STUDY
COMMITTEE
• Recommendations for Intervention Strategies
• Policy Recommendations
• Research Recommendations
4:00 p.m. ADJOURN
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280 UNEQUAL TREATMENT
BOX A-6
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
TECHNICAL LIAISON
FEDERAL PANEL
FEBRUARY 12, 2001
Jonca Bull, M.D., Food and Drug Administration
Denice Cora-Bramble, M.D., Health Resources and Services
Administration
Marsha Davenport, M.D., Center for Medicare and Medicaid Services
Carole Brown, Office for Civil Rights, Office of the Secretary of Health
and Human Services
LTC Willie L. Hensley, Department of Veterans Affairs
*Joan Jacobs, Office of Minority Health, Office of the Secretary of Health
and Human Services
Camara Phyllis Jones, M.D., M.P.H., Ph.D., Centers for Disease Control
and Prevention
Raynard Kington, M.D., Ph.D., National Institutes of Health
Yvonne T. Maddox, Ph.D., National Institutes of Health
Beverly Malone, Ph.D., Office of Public Health and Science, Office of
the Secretary of Health and Human Services
George A. Mensah, M.D., Centers for Disease Control and Prevention
Leo J. Nolan III, Indian Health Service
Delores L. Parron, M.D., Planning and Evaluation Program, Department
of Health and Human Services
Capt. Adam M. Robinson, Jr., M.D., Department of Defense
Craig Vanderwagen, M.D., Indian Health Service
*observer from sponsoring office
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A: DATA SOURCES AND METHODS
BOX A-7
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
TECHNICAL LIAISON PANEL
FEBRUARY 14, 2001
Joseph A. Berry, M.D., United Healthcare
Zora Brown, Breast Cancer Resource Committee
Gina Gregory-Burns, M.D., Kaiser Permanente
Mary Lou de Leon Siantz, R.N., Ph.D., National Association of Hispanic
Nurses
Gary C. Dennis, M.D., Howard University Hospital
Richard Levinson, M.D., DPA, American Public Health Association
Joseph Quash, M.D., Association of Black Cardiologists
Rene F Rodriguez, M.D., Interamerican College of Physicians and Surgeons
Cynthia A. Warrick, Ph.D., Howard University
Donald A. Young, M.D., Health Insurance Association of America
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282 UNEQUAL TREATMENT
BOX A-8
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
LIAISON PANEL
MAY 4, 2001
David Baines, M.D., Seattle Indian Health Board
Henry Chung, M.D., Pfizer Pharmaceuticals Groups
Tom Chung, Ph.D., Commonwealth of Massachusetts, Executive Office
of Elder Affairs
Carolyn M. Clancy, M.D., Agency for Health Research & Quality
Gem P. Daus, M.A., Asian and Pacific Islander American Health Forum
Lucille Davis, Ph.D., R.N., Southern University School of Nursing, Baton
Rouge, LA
Pete Duarte, M.D., Thomason Hospital, El Paso, TX
Alicia C. Georges, Ed.D., Department of Nursing, Herbert H. Lehman
College, Bronx, NY
Robert D. Gibson, Pharm.D., Sc.D., American Pharmaceutical Association
Miya Iwataki, Los Angeles County Department of Health Services
Anita Moncrease, M.D., M.P.H., Health Resources and Service
Administration
Tom Perez, J.D., Maryland University School of Law
Elena Rios, M.D., M.S.P.H., National Hispanic Medical Association
Richard Allen Williams, M.D., University of California at Los Angeles
and Minority Health Institute
*Violet Ryo-Hwa Woo, M.S., M.P.H., Office of Minority Health
* observer from sponsoring office
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A: DATA SOURCES AND METHODS
BOX A-9
INSTITUTE OF MEDICINE
COMMITTEE ON UNDERSTANDING AND ELIMINATING
RACIAL AND ETHNIC DISPARITIES IN HEALTHCARE
LIAISON PANEL
JUNE 21, 2001
Dennis Andrulis, Ph.D., M.P.H., State University of New York Downstate
Medical Center
Deborah Bohr, M.P.H., Health Research and Educational Trust
Cindy Brach, M.P.P., Agency for Healthcare Research and Quality
Deborah Danoff, M.D., Association of American Medical Colleges
Leonard G. Epstein., M.S.W., Bureau of Primary Health Care, Health
Resources Services Administration
George Flouty, M.D., Pfizer, Inc.
Candice Mathew Healy, M.P.A., State University of New York
Downstate Medical Center
Laura Hernandez, M.P.I.A., Centers for Medicare and Medicaid Services
(formerly the Health Care Financing Administration)
Charlene Landis, M.A., Pfizer, Inc.
Ed Martinez, M.S., National Association of Public Hospitals
*Guadalupe Pacheco, M.S.W., Office of Minority Health, DHHS
Rea Panares, M.H.S., Washington Business Group on Health
Carlos Vidal, Ph.D., State University of New York Stonybrook
Malcom Williams, M.P.P., Grantmakers in Health
VIDEO CONFERENCE PARTICIPANTS
Niels Agger-Gupta, Ph.D., California Healthcare Interpreters Association
Sakinah Carter, M.P.H., The California Endowment
Tessie Guillermo, Asian and Pacifica Islander Health Forum
Melba Hinojosa, M.A., RN, MediCal Managed Care, California
Department of Health Services
Vivian Huang, California Primary Care Association
Wendy Jameson, M.P.P., M.P.H., California Health Care Safety Net
Institute
Beatriz Solis, M.P.H., LA Care Health Plan
Jai Lee Wong, The California Endowment
* observer from sponsoring office
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284 UNEQUAL TREATMENT
settings, either for themselves or for a child or other family member. All
participants had private health insurance, Medicare, Medicaid/MediCal,
or Indian Health Service coverage.
In addition, two focus groups were conducted by telephone with Af-
rican American and Hispanic healthcare providers throughout the United
States: one was conducted with nurses, the other with physicians. Partici-
pants were asked to provide their opinions and comments on the quality
of healthcare services that minority patients receive. They also discussed
how their race or ethnicity affected their medical training or professional
careers. Providers’ perspectives added a rich content for understanding
patients’ experiences with racism in healthcare, addressing some of the
institutional factors that affect quality of care.
An experienced facilitator, who possessed knowledge of cultural and
linguistic differences of ethnic minority groups, led each of the nine
groups. Facilitators for the consumer groups were matched with regard
to race, ethnicity, and primary language. Study staff were present at
Washington, DC area and phone-based focus groups.
To supplement qualitative information on the experiences and per-
ceptions of racial and ethnic minority patients, advocates, and their health-
care providers, roundtable discussions were held at two national confer-
ences (the Asian American and Pacific Islander Health Forum [AAPIHF]
conference in Alameda, CA and the Indian Health Service [IHS] Research
conference in Albuquerque, NM) where racial and ethnic minority health
issues were discussed. At both conferences, study staff solicited partici-
pants from among conference attendees and invited them to participate in
small group discussions (up to 20 people) to discuss participants’ percep-
tions of racial and ethnic healthcare disparities and strategies to eliminate
them. At the Indian Health Service Research Conference, a member of the
study committee (Dr. Jennie Joe) facilitated a small group discussion that
including American Indian tribal leaders, healthcare providers, and IHS
staff. At the AAPIHF conference, study staff facilitated three small dis-
cussion groups, including representatives of advocacy and community
groups, healthcare providers, and others.
