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OCR for page 38
Appendix B
Abstracts of Papers Commissioned
for the Workshop
Title: Race and(Ethnicity Data Collection Ivy Health Plans
Authors: Carmella Bocchino, Vice President, Medical Affairs, American
Association of Health Plans, Deborah Wheeler, Medical Affairs, American
Association of Health Plans
Health plans have recognized the importance of responding to patients
varied perspectives, beliefs, and behaviors about health and well-being, as
well as the considerable health consequences that will result in a failure to
value and manage cultural and communal differences in the populations
they serve. Through the emerging field of culturally competent care, health
plans are developing strategies to reduce disparities in access to and quality
of health care services. The collection of racial and ethnic data is a first step
in designing and advancing such strategies. Health plans generally are sup-
portive of the collection of racial and ethnic data on their members. They
see these data as having great utility in a number of areas, which are delin-
eated in this paper. Barriers, however, do exist collection is not consistent
across the industry and is often fragmented which make it difficult to
evaluate the quality of such data and subsequently determine solutions to
advance culturally competent care. Even so, some strong examples of data
collection and related innovative strategies for use are emerging.
Based on the paper's findings, several recommendations were made.
The paper first recommended the development of a coordinated, uniform
38
OCR for page 39
APPENDIX B
39
approach across the health care industry to accelerate the collection of ac-
curate racial and ethnic data, which would include input and active partici-
pation from health plans, employers, and federal and state governments.
The paper also recommended identifying models that work to balance the
extensive research concentrating on gaps in health care quality linked to
race and ethnicity. Finally the paper recommended funding new research
directed at specific methods to reduce or eliminate inconsistencies in medi-
cal care experienced by some racial and ethnic minorities. This would in-
clude identification of specific factors that prevent culturally diverse popu-
lations from obtaining quality health care and how these factors interact
with the health care system.
Title: The Role of Race and(Ethnicity Data Collection in EliminatingDispari-
ties in Health Care
Authors: Allen Fremont, MD, PhD, and Nicole Lurie, MD, MSPH,
RAND
This paper provides a framework for describing the role of racial and
ethnic data in supporting essential functions of the health care system. The
authors first illustrate the value of racial and ethnic data collection by de-
scribing ways it can be used to reduce disparities, particularly with respect
to the quality of care. They describe how data on primary language and
socioeconomic status can complement racial and ethnic information. They
then assess current sources of racial and ethnic information and the chal-
lenges inherent in collecting it. The paper concludes with a series of recom-
mendations for enhancing the availability and use of racial and ethnic data
in the public and private sectors.
The paper recommended that standards be developed to ensure uni-
form collection of data at the federal, state, and local levels. Guidance is
needed to clarify how these data should be collected in different settings
(e.g., when, how, by whom), and training is necessary for frontline person-
nel. The paper also recommended creating a centralized body that could
provide guidance and oversight regarding standards for and collection of
data. This body should propose a set of incentives for the collection of such
data, as well as penalties for failing to collect it in ways that meet a mini-
mum standard. Another recommendation suggested sampling of major ra-
OCR for page 40
40
IMPROVING RACIALAND ETHNIC DATA ON HEALTH
cial and ethnic groups for all major epidemiologic and health status data
collection efforts funded by the federal government, including those that
provide important suhnational data. Finally, the paper asserted that data
collection within the health care system itself provides the basis for assess-
ing disparities in care and for benchmarking progress.
Title: State Race and Ethnicity Data Collection
Authors: leffrey I. Geppert, Sara I. Singer, lay Bucchner, Lorin Ranbom,
Walter Suarez, and Wu Xu, Center for Health Policy, Stanford University
This paper analyzed variations in the current collection of racial and
ethnic data both among states and between states and the federal govern-
ment, assessed the costs and benefits of enhancing or standardizing such
data collection, and described selected recommended practices regarding
race and ethnicity data collection and use. The authors examined how se-
lected states approach race and ethnicity data collection through interviews
with health agency staff and review of published sources. The background
section describes states' most commonly used data sources that include ra-
cial and ethnic data. The methods section describes the authors' data col-
lection procedure for interviews and data analysis. The results section de-
scribes some ofthe variation among states in the collection of race, ethnicity,
and other socioeconomic characteristics data, and the benefits and costs of
such data collection from the perspective of state administrators. The con-
clusion section provides some considerations for further research.
The paper suggests that a standardized set of socioeconomic and cul-
tural factors of importance to identifying meaningful subgroups be imple-
mented across data sources. In addition to race and ethnicity, other indi-
vidual characteristics might include income, education, and insurance
status, based on existing evidence from health services and clinical research.
The paper also recognizes that there are advantages and disadvantages to
using both administrative and nonadministrative data and suggests that
each approach should be pursued simultaneously and the bridge between
them narrowed through standardization and automation.
OCR for page 41
APPENDIX B
41
Title: Collection of Data on Race and Ethnicity Icy Private-Sector Organiza-
tions: Hospitals, Health Plans, and(MedLical Groups
Authors: David R. Nerenz, PhD, and Connie Currier, PhD, Institute for
Health Care Studies, Michigan State University
Disparities among racial and ethnic groups on measures of health, ac-
cess to health care, and quality of care have been well documented. Many
underlying reasons for disparities have been identified, but systematic ef-
forts to reduce or eliminate disparities are relatively new, so not much is
known about their effectiveness. Initiatives to reduce disparities that in-
volve private-sector health insurers or delivery organizations generally must
often rely on those organizations' collection of data on race and ethnicity to
support either key features of program design (e.g., identifying members of
target populations for intervention) or program evaluation. Hospitals have
been required to document nondiscriminatory treatment of patients since
the mid-60s, but procedures for the collection of racial and ethnic data on
patients in support of that documentation requirement vary from hospital
to hospital and enforcement of policies on data collection can be weak to
nonexistent. Health plans and medical groups are not legally required to
collect racial and ethnic data. A few states have prohibitions on the collec-
tion of these data. Data collected for special purposes (e.g., CAMPS survey
data for health plans; disease registries for medical groups), can be used
effectively for initiatives aimed at reducing disparities.
Representative terms from entire chapter:
health plans
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