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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

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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-

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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.

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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.