Eliminating Health Disparities Measurement and Data Needs (2004) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-13
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However, racial and ethnic data in these files are of limited accuracy, completeness, and detail. State-based data, such as vital records, administrative data from Medicaid and the State Children's Health Insurance Program, and data from registry systems, are potentially valuable sources of data for analyzing disparities in health and health care.
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Concerns about the adequacy of the current infrastructure to provide the necessary data to understand and eliminate racial and ethnic disparities prompted Congress to direct the Department of Health and Human Services (DHHS) to request that the National Academies conduct a comprehensive study of DHHS data collection systems (P.L.
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Acculturation (and its proxy measures language, place of birth, years in the United States, or generational status) is also related to health status; mismatches between the language spoken by health care providers and by patients can be a limiting factor in health care interactions and health information exchange.
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CONCLUSION 3-4: Health and health care data collection systems should return useful information to the institutions and local and state government units that provide the data. Data linkages, or bringing together variables from two or more data sets, can facilitate new analyses (for policymaking, quality improvement, and research)
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The panel urges DHHS to develop such a plan, begin to implement the data improvement recommendations, and establish a responsible body for coordinating implementation across the various department agencies and ensuring that they follow through with recommendations. RECOMMENDATION 4-1: DHHS should begin immediately to implement the recommendations contained in the 1999 report entitled Improving the Collection and Use of Racial and Ethnic Data in Health and Human Services.
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DHHS data systems do not consistently collect data on SEP. While the national household surveys generally provide adequate SEP data, obtaining some measures of employment, education, and insurance coverage, although with limited detail, wealth data are rarely collected.
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For example, by matching SSA earnings records to Medicare claims data, we can study relationships between SEP and health care. Matching might be difficult or inaccurate if common identifiers are not of high quality or are missing.
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DHHS should also develop implementation guidelines specifically aimed at the collection of racial and ethnic data in state and privately based record collection systems. RECOMMENDATION 4-9: DHHS should prepare and disseminate implementation guidelines for the Office of Management and Budget standards for collecting racial and ethnic data.
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territories are responsible for maintaining numerous health-related data collection systems, including those for vital statistics information (birth and death records) ; hospital discharge abstracts, which detail information on hospital patients and the diagnoses and treatments they receive; registries, such as the cancer registry system, which provides information on cancer cases and their treatment; and programs such as Medicaid and the State Children's Health Insurance Program (SCHIP)
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The costs involved in changing reporting and computer systems are not insignificant. Furthermore, racial and ethnic data are often recorded by health care or program administration personnel who are not trained in interviewing (e.g., medical records clerks, providers and health care workers, or funeral directors)
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Data collected by these private-sector groups could be invaluable for monitoring and better understanding disparities in health and health care. Health insurance plans could use the data to inform quality improvement efforts, to target health promotion and preventive health measures to specific demographic subgroups, and to aid in disease management strategies.
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Such masked data sets can then be analyzed with appropriate corrections for the effects of masking. But development of the specific procedures and parameters required to implement data masking requires particular statistical expertise that is not likely to be found within health insurers.
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Alternatively, a private-sector vendor with the necessary geocoding expertise could be recruited, although such vendors do not typically deal with the related confidentiality issues. RECOMMENDATION 6-3: DHHS should establish a service that would geocode and link addresses of patients or health plan members to census data, with suitable protections of privacy, and make this service available to facilitate development of geographically linked ana lytic data sets.
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