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8
Needed Research
In previous chapters, the committee has reviewed extensive evidence
of racial and ethnic disparities in care, and has assessed potential sources
of these disparities, as well as promising strategies to eliminate them. In
the process, the committee notes that the evidence base to better under-
stand and eliminate disparities in care remains less than clear. In this
chapter, several broad areas of research needs are outlined. Some of this
research is already underway or planned as a result of leadership and
support from the federal Agency for Healthcare Research and Quality
(AHRQ) and several private foundations (for a more thorough descrip-
tion of ongoing federal and private research and intervention efforts to
address racial and ethnic disparities in care, see Federal and Private Initia-
tives to Reduce Healthcare Disparities in the appendix of this volume). The
committee urges greater support from a range of federal and private
sources, however, for a more ambitious research agenda aimed at disen-
tangling the many influences on the process, structure, and outcomes of
care for minority Americans.
This chapter is divided into several sections. The first three sections
highlight research opportunities that should better illuminate the ways in
which race and ethnicity influence the delivery of healthcare. To date, far
greater research attention has been directed to documenting racial and
ethnic disparities in care than in understanding how these disparities
emerge in the structure and process of care, as these recommendations
illustrate. The latter sections discuss areas where research has been mini-
mal or notably absent. This includes intervention research; research on
disparities in care among non-African-American racial and ethnic minor-
235
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UNEQUAL TREATMENT
ity populations, such as Native Americans, Asian Americans, Pacific Is-
landers, Hispanics, and subgroups of these populations; and research on
the role of non-physician healthcare professionals, such as nurses, physi-
cian assistants, occupational and rehabilitation therapists, mental heath
care providers, and others in eliminating racial and ethnic disparities in
care. Finally, the last section offers suggestions for strategies to carry out
this research.
UNDERSTANDING CLINICAL DECISION-MAKING AND THE
ROLES OF STEREOTYPING, UNCERTAINTY, AND BIAS
Much of the research cited in previous chapters relies on retrospec-
tive analyses of administrative claims or hospital discharge data. While
these data sets have proven useful in identifying racial and ethnic dispari-
ties in a range of hospital and clinic-based services (from relatively rou-
tine diagnostic and treatment services through specialized surgical proce-
dures), they pose a number of inherent limitations. Hospital discharge
records yield only limited data regarding patients' interactions with the
range of healthcare professionals with whom they come into contact and
the race or ethnicity of these providers. Further, such data are often lim-
ited with regard to clinical decision-making processes and the informa-
tion that clinicians must consider when recommending a course of treat-
ment. For example, administrative data sets often contain only crude
information regarding co-morbid conditions, diagnostic test data, and
specific treatments.
Prospective studies are needed to focus on decision-making by pa-
tients and providers, to assess care management at different points along
the continuum of care, and to assess the impact of patient-provider inter-
actions on diagnosis and treatment. More complete records of patients'
co-morbid conditions, as well as results of diagnostic tests, will help in the
context of prospective research to assess the appropriateness of treatment.
Such data will also assist in determining if physicians experience greater
uncertainty in assessing presenting complaints of cultural or linguistic
minority patients, or if their treatment decisions for these patients fail to
correspond to accepted standards of care.
Beyond prospective studies of healthcare service delivery, additional
research is needed on provider decision-making, heuristics employed in
diagnostic evaluation, and how patients' race, ethnicity, gender, and so-
cial class may influence these decisions. As noted in earlier chapters, some
experimental research has been conducted to assess the extent to which
physicians' treatment recommendations differ by patient race and gender
(e.g., Schulman et al., 1999~. This research should be expanded to both
replicate these findings and explore how social cognitive processes may
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NEEDED RESEARCH
237
operate to influence patients' and providers' conscious and unconscious
perceptions of each other and affect the structure, processes, and outcomes
of care.
As noted in Chapters 3 and 4, it is likely that clinical uncertainty and
discretion with regard to diagnostic and treatment options may play a
role in healthcare disparities. When clinicians are uncertain about a
patient's presenting symptoms, or when multiple treatment options are
available but "best" practices among racial and ethnic minorities are un-
clear, treatment may be less well matched to patients' needs, because such
conditions increase the likelihood that biases and implicit stereotypes may
affect clinicians' decisions. Alternatively, when empirically-based prac-
tice guidelines offer evidence of the effectiveness of specific interventions
among minority patients, uncertainty may be lessened. Future research
should therefore assess whether disparities are reduced when clinicians
are provided with and make use of evidence of treatment efficacy.
UNDERSTANDING PATIENT-LEVEL INFLUENCES ON CARE
As noted earlier, patient mistrust of providers may affect decisions to
seek care, and may negatively influence the quality of the patient-pro-
vider relationship. Investigators should assess patients' attitudes and
preferences toward healthcare providers and services, and examine the
extent of these influences on the quality of care and treatment decisions.
Research should also evaluate appropriate means of addressing and modi-
fying negative cultural beliefs about care-seeking and mistrust of health-
care systems. Further, strategies to increase minority patients' ability to
participate in treatment decisions and empower them as self-advocates
within healthcare systems should be evaluated. It is important that these
research efforts be conducted in active collaboration with racial and eth-
nic minority communities, both to avoid the perception that patients are
to blame for unequal or poor treatment in healthcare settings, as well as to
tap into cultural knowledge and traditions that may serve as sources of
strength in the effort to "activate" patients.
UNDERSTANDING THE INFLUENCE OF HEALTHCARE
SYSTEMS AND SETTINGS ON CARE FOR MINORITY PATIENTS
Studies Within Healthcare Plans
There is considerable variation across healthcare plans in the type and
extent of coverage that beneficiaries receive. Even among those insured
by public programs such as Medicare, some beneficiaries may hold a vari-
ety of types of supplemental insurance that enhances coverage for specific
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UNEQUAL TREATMENT
services, thereby increasing their access to care. Many studies of racial
and ethnic differences in healthcare, however, fail to account for these
differences, often collapsing the privately-insured or publicly-insured into
broad categories that mask differences in coverage. Future research
should better account for these differences by assessing racial and ethnic
disparities in care among similarly-insured patients within the same plan.
Studies of DoD and VA Systems
The committee's analysis revealed that for some healthcare services
and under some conditions, racial and ethnic disparities in care are less
pronounced. These findings are somewhat more consistent in studies of
healthcare provided to active-duty personnel and their families through
the U.S. Department of Defense healthcare system, which provides uni-
versal access to care, and are inconsistent among studies of the "equal-
access" Veterans Administration healthcare system. Future research
should seek to illuminate the conditions of health systems, including fac-
tors such as co-payment and accessibility that may be associated with ra-
cial and ethnic disparities in care.
Type of Hospital or Clinic and Racial and Ethnic Disparities in Care
Several studies find differences as to where racial and ethnic minori-
ties receive care, even when holding insurance status constant. Lillie-
Blanton, Martinez, and Salganicoff (2001) found that independent of
sociodemographic factors, health status, and insurance status, African-
American and Latino patients are more likely than white patients to have
a hospital-based provider and are less likely to have an office-based pro-
vider as a usual source of care. Lillie-Blanton et al. (2001) note that these
differences could reflect geographic or sociocultural barriers to care, pa-
tient preferences, or some combination of these factors. Structural, insti-
tutional, and organizational aspects of healthcare settings can affect the
cost, content, and quality of care, as well as patient satisfaction. The con-
tribution of these factors to healthcare disparities must be more thor-
oughly assessed. In addition, research should determine whether struc-
tural, institutional and organizational factors of healthcare settings affect
the content of care or quality of communication for racial and ethnic mi-
nority patients.
Similarly, little is known about the healthcare providers that tend to
serve racial and ethnic minority patients. Research indicates that racial
and ethnic minority physicians, particularly those who are African Ameri-
can and Hispanic, disproportionately serve poor, underserved and mi-
nority patients (Komaromy et al., 1996~. However, these providers re-
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239
main a small fraction of the overall healthcare workforce. More must be
understood about the racial and ethnic composition of providers who tend
to serve minority patients, and the impact of racial concordance/discor-
dance on care. In particular, little is known about the impact of interna-
tional medical graduates working in minority communities. As noted
earlier in this report, these providers disproportionately serve racial and
ethnic minority patients, yet little is known about the quality of their in-
teractions with minority patients, despite the apparent greater likelihood
of cultural and linguistic misunderstanding. To better understand sources
of racial and ethnic disparities in care, future research should analyze the
experience, qualifications, specialties, and other attributes of providers
who disproportionately serve racial and ethnic minority patients and to
assess whether these factors may in part explain racial and ethnic dispari-
. .
hes In care.
UNDERSTANDING THE ROLES OF
NON-PHYSICIAN HEALTH PROFESSIONALS
The vast majority of research that documents racial and ethnic dis-
parities in care and patient-provider communication in racially concor-
dant and discordant dyads has focused on the role of the physician. This
research has been important in illuminating key processes and decision
points that may contribute to healthcare disparities. The disproportion-
ate focus of research on physicians, however, unfairly places the locus of
attention regarding disparities primarily on physicians. This fails to re-
flect the reality that much of healthcare is provided by non-physician pro-
fessionals, including nurses, physician assistants, occupational and reha-
bilitation therapists, mental health professionals (including psychologists,
social workers, and marital and family therapists), pharmacists, and al-
lied health professionals. Further, with a few exceptions, research on ra-
cial and ethnic disparities in care has failed to consider the roles of other
hospital and clinic staff such as receptionists, admitting clerks, transla-
tors, and others in contributing to the "climate" in which care is deliv-
ered. These individuals play at least as significant a role as physicians (if
not more so) in conveying messages of respect and dignity to patients and
in influencing how patients feel about the healthcare setting. Research is
critically needed to assess how these individuals communicate with racial
and ethnic minority patients, and in turn, how patients respond to them.
Further, research should assess how educational programs can best im-
prove these staffs' attitudes, behaviors, and communication with racial
and ethnic minority patients. In this regard, the committee notes that
many corporations and organizations (and indeed, some health plans)
have developed extensive training programs to assist their workforce in
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UNEQUAL TREATMENT
better serving and addressing needs of culturally and linguistically di-
verse customers; these training programs offer potentially valuable
models for healthcare institutions wishing to become more "customer-
friendly" and improve service.
ASSESSING HEALTHCARE DISPARITIES AMONG
NON-AFRICAN AMERICAN MINORITY GROUPS
A central concern throughout the committee's review of the literature
on racial and ethnic disparities in healthcare has been the relative paucity
of research on non-African-American racial and ethnic minority groups.
While a number of important studies have sought to assess the extent of
disparities among diverse racial and ethnic populations (e.g., Carlisle et
al., 1995), the extent of disparities in care faced by Asian-American, Pa-
cific Islander, Native American, and Hispanic populations remains un-
clear. Furthermore, barriers to care experienced by various subgroups of
these populations must be better assessed. As noted earlier, focus group
data and other information gathered by the committee suggest that
linguistic and cultural mismatches pose greater challenges for recent im-
migrant minorities than for African Americans. There is tremendous cul-
tural, linguistic, and socioeconomic variation within the "racial" popula-
tions noted above, and their historic and contemporary experiences in the
United States as noted by Byrd and Clayton (see appendix) vary con-
siderably, all of which significantly influence the context by which care is
delivered to these populations.
ASSESSING THE EFFECTIVENESS OF
INTERVENTION STRATEGIES
The committee's analysis suggests several promising avenues for in-
terventions to eliminate racial and ethnic disparities in healthcare. To
date, however, relatively less research attention has been devoted to as-
sessing intervention efforts than to understanding the extent and sources
of disparities in care. Several promising strategies have been identified
that should continue to be the focus of research efforts, such as compre-
hensive cross-cultural education and communication training for health-
care providers. Research should assess not only the effectiveness of these
interventions in reducing racial and ethnic gaps in appropriate care, but
also their cost-effectiveness and the extent to which these interventions
result in organizational and institution-level changes to improve care for
minority patients. Research should also assess the benefits of other inter-
vention strategies described earlier in this report, including language
translation and interpretation services, lay health navigators, patient edu-
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241
cation and "activation" strategies, and efforts to make healthcare services
more culturally and linguistically accessible.
DEVELOPING METHODS FOR MONITORING
HEALTHCARE DISPARITIES
As discussed in the chapter on data collection and monitoring, the
collection and reporting of healthcare information by patient race and
ethnicity is an important step in monitoring the nation's progress in
eliminating racial and ethnic disparities in healthcare. Such efforts will
assist consumers and purchasers in making better-informed choices
about health plans, will help plans and providers to identify effective
intervention strategies, and will identify practice settings where dispari-
ties occur and assist efforts to monitor compliance with civil rights laws.
Data collection and monitoring efforts, however, will face several sig-
nificant challenges to implementation, as noted earlier. Among these
challenges are the need to ensure the privacy of medical records, prob-
lems posed in analyzing data from small population groups, the incon-
sistent use of and understanding of the federally-defined "race" and
"ethnicity" categories, and the effect of differences in enrollee case-mix
among plans on plan performance. Future research must address these
challenges and identify efficient means for such data to be collected that
do not pose undue bureaucratic burdens on healthcare providers, con-
sumers, and plans.
UNDERSTANDING THE CONTRIBUTION OF HEALTHCARE TO
HEALTH OUTCOMES AND THE HEALTH GAP BETWEEN
MINORITY AND NON-MINORITY AMERICANS
As noted earlier in this report, health status disparities observed be-
tween many minority and non-minority populations in the United States
likely reflect a complex interplay of social, economic, biologic, and envi-
ronmental factors. While some evidence suggests that preventive and
primary care services can have a greater impact on improving health sta-
tus for low-income than middle- and higher-income individuals, the con-
tribution of healthcare disparities to health status differences between
minority and non-minority populations remains unknown. Future re-
search must assess this contribution, and identify how and why health-
care disparities play a role in poorer health outcomes for minorities rela-
tive to non-minorities. In addition, future research is needed to determine
whether new medical services and technologies are implemented among
minority patient populations at the same rates as the general patient popu-
lation. New medical breakthroughs are occurring at staggering rates, and
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promise to improve the quality of life and mitigate disease in ways never
previously imagined. To the extent that these new technologies are made
available and are within economic reach, research must assure that racial
and ethnic minorities who have the ability to pay for such care are not
disadvantaged in their efforts to receive it.
MECHANISMS TO IMPROVE RESEARCH ON
HEALTHCARE DISPARITIES
Research on racial and ethnic disparities in healthcare has grown sig-
nificantly over the past two decades, and continues to offer new insights
into the causes of and possible solutions to care disparities. To strengthen
this research, however, and stimulate new insights and perspectives that
may lead to innovative intervention strategies, the research enterprise may
be strengthened in a number of ways. Much of the research reviewed
earlier in this report has been conducted in specific departments of aca-
demic or research institutions, and has not taken full advantage of oppor-
tunities for interdisciplinary collaboration. Such collaboration will be nec-
essary to address the complexities and multiple causal dimensions of
healthcare disparities, as discussed earlier. Therefore, rather than dis-
persing research throughout the various departments of academic hospi-
tals or other research institutions, researchers may seek to establish
multidisciplinary units that encourage collaboration between departments
as well as institutions (e.g., law, public health, sociology). In addition,
federal and private research sponsors should encourage the conduct of
research in a variety of settings (inner city; other urban; community health
centers; etc.), and should encourage the participation of researchers from
ethnic and racial minority groups.
Recommendation 8-1: Conduct further research to identify sources
of racial and ethnic disparities and assess promising intervention
strategies.
Research is needed to illuminate how and why racial and ethnic
disparities in care occur and to test intervention strategies to elimi-
nate them. Specifically, research is needed to:
· Better understand the relative contribution of patient, provider,
and institutional characteristics to healthcare disparities;
· Further illuminate provider decision-making, heuristics em-
ployed in diagnostic evaluation, and how patients' race, ethnicity,
gender, and social class may influence these decisions;
· Assess the relative contributions of provider biases, stereotyp-
ing, prejudice, and uncertainty in producing racial and ethnic dis-
parities in diagnosis, treatment, and outcomes of care;
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243
· Understand the role of non-physician healthcare professionals,
including nurses, physician assistants, occupational and rehabilita-
tion therapists, mental health professionals (including psycholo-
gists, social workers, and marital and family therapists), pharma-
cists, allied health professionals, as well as non-professional staff
in contributing to healthcare disparities;
· Assess healthcare disparities among non-African-American mi-
nority groups and subgroups;
· Assess the impact of international medical graduates (IMGs) on
healthcare service delivery in racial and ethnic minority communi-
ties;
· Develop and test the utility for healthcare improvement of pa-
tient-based measures of (1) trust in providers and systems and (2)
exposure to discriminatory practices by providers or systems;
· Develop methods for monitoring progress toward eliminating
racial and ethnic disparities in healthcare; and
· Understand the relationship between healthcare disparities and
the health gap between minority and non-minority Americans.
Finally, it is apparent that efforts to eliminate healthcare disparities
will benefit from efforts to better address barriers to research and inter-
vention. As noted earlier, these include ethical issues and data-related
concerns, such as the need to protect patient privacy. At minimum, re-
search and intervention efforts must conform to the Health Insurance Port-
ability and Accountability Act of 1996 (HIPAA) regulations regarding the
protection of patients' medical records and other confidential data. The
Agency for Healthcare Research and Quality (AHRQj, the Centers for Dis-
ease Control and Prevention (CDC), and the National Institutes of Health
(NIH) have already begun to address some of these concerns through on-
going research and data management, and should be encouraged to con-
tinue addressing barriers to data collection and research.
it,
Recommendation 8-2: Conduct research on ethical issues and other
barriers to eliminating disparities.
AHRQ, CDC, and NIH should conduct research on barriers to elimi-
nating racial and ethnic disparities in care, including data-related
concerns (especially those related to HIPAA privacy regulations)
and ethical issues.
Representative terms from entire chapter:
healthcare disparities
