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Appendixes
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270 UNEQUAL TREATMENT: CONFRONTING RACIAL AND ETHNIC DISPARITIES IN HEALTH CARE
Polish Americans as an ancestral group make up approximately 4 percent of the U.S.
population. Other than their being Eastern European and being subjected to a more intense na-
tivist reaction in the early-20th century than some other "White American" ethnic groups, their
racial and ethnic experience couch be viewed as typical. Even the more privileged Northern
European immigrant groups such as the French, Dutch, Scottish, Swedish, and Norwegians expe-
rienced acculturation trauma and sometimes discriminatory barriers to their entry into American
society and the health system. In the ~ 960s President John F. Kennedy appointed the first Polish
American cabinet officer. "By the third generation, Polish Americans were entering universities
in large numbers and joining the professional middle class" (Pedraza and Rumbaut, 1996, 2041.
Their health system experiences were similar to other immigrants modulated by what regions of
the country they settled in, their religious affiliation, whether they were urban or rural, and if
they migrated to the suburbs after World War TI (Feagin and Feagin, 1999; Pedraza and Rum-
baut, 1996; Starr, 1982; Steinberg, 1989; Stevens, 1999~.
Racial and Ethnic Health and Health Care Disparities and Their
Documentation in the United States
The Black experience of poor health status, poor health outcomes, and being limited to
access to the worst health services for the 366 years before 1985-well-known to African Ameri-
cans, a small group of government officials, and a tiny cadre of academics-was not appreciated
by the general public until relatively recently. The shock waves that reverberated throughout the
health system caused by the release of Margaret Heckler's, then Secretary of Health and Human
Services, 1985-1986 report on minority health and its acknowledgment that "there was a con-
tinuing disparity in the burden of death and illness experiences! by Blacks anc! other minority
Americans as compared with our nation's population as a whole "Heckler's emphasis]" (U.S.
Department of Health and Human Services, 1985a, ix) was emblematic of the high unawareness
levels regarding disparate health and health care for the nation's racial and ethnic minorities. The
broadened focus on aZZ of the nation's racial and ethnic minority groups marked a new era in ra-
cial and ethnic health and health care in the United States. The Report of the SecretarY's Task
Force on Black and Minority Health (also known as the Malone-Heckler report) noted the health
disparity tract existed "ever since accurate federal record keeping began" and that it "was the first
time...a common effort Has been attempted] to carry out a comprehensive and coordinate`] study
to investigate the longstanding disparity in the health status of Blacks, Hispanics, Asian/Pacif~c
Islanclers, and Native Americans compared to the nonminority population" (U.S. Department of
Health and Human Services, 1985a, ix, 21. Despite Malone-Heckler Report findings that "Al-
though tremendous strides have been made in improving the health and longevity of the Ameri-
can people, statistical trends show a persistent, distressing disparity in key health indicators
among certain subgroups in the population" (U.S. Department of Health and Human Services,
1985a, 2), and "these disparities in health status persist...15 years later" (U.S. Commission on
Civil Rights, ~999a, ~61. Major impediments to understanding and eliminating racial and ethnic
health and health care disparities have been in areas related to inadequate data collection and
analysis (Byrcl and Clayton, 2000, 2002; Clayton and Byrd, 2001; Collins, Hall, and Neuhaus,
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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/round/able 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, fuly 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
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A: DATA SOURCES AND METHODS
273
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
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A: DATA SOURCES AND METHODS
275
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276
UNEQUAL TREATMENT
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A: DATA SOURCES AND METHODS
277
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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 Roundiable 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
279
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280
UNEQUAL TREATMENT
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A: DATA SOURCES AND METHODS
281
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282
UNEQUAL TREATMENT
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A: DATA SOURCES AND METHODS
283
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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. lennie Toe) 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.
Representative terms from entire chapter:
unequal treatment
