Improving Racial and Ethnic Data on Health Report of a Workshop (2004) / Chapter Skim
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Report of a Workshop
Report of a Workshop
Pages 1-33
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, with support from several other DHHS offices, asked the Committee on National Statistics (CNSTAT) of the National Academies to convene a panel of experts to review the Department's data systems.1 ASPE and CNSTAT developed the Other DHHS agencies sponsoring the study include the Agency for Healthcare Research and Quality,, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the HIV/AIDS Contingency Fund, the National Institutes for Health, the Office for Civil Rights, and the Office of Minority Health.
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The panel convened the Workshop on Improving Racial ancl Ethnic Data in Health to review information about current private-sector ancl state clata collection practices in light of existing fecleral, state, ancl local regulations, laws, ancl requirements.2 The workshop presentations featured the perspectives of clata users, health care proviclers, insurance plan representatives, state ancl local public health officials, ancl regulatory officials. Participants assessed policies, practices, barriers, ancl opportunities for collecting racial ancl ethnic clata in their settings, ancl explored ways that private ancl 2The workshop was held December 12-13, 2002.
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The purpose of the workshop was to examine the collection of data outside the federal government, i.e., by states, localities, and nongovernment entities including health plans, groups, and providers. As such, the workshop focused on the role of private organizations and state governments in collecting and reporting about health care and health status statistics.
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4. State and local government agencies as well as private providers and health plans face problems implementing changes in their computer systems to collect consistent racial and ethnic data.
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The body of this report presents the workshop participants' views on the importance of collecting racial and ethnic data, the legal and regulatory environment for the collection of such data, procedural issues, state policies and practices, and the role of private providers, health plans, and health care quality control organizations in collecting these data.
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It not only influences health status, but also access to and use of care (IOM, 2002a) Enforcing Civil Rights Laws Title VI of the Civil Rights Act of 1964 requires government agencies to enforce equal access to care.
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While effective interventions are likely to vary across settings, it is important to monitor settings and sites in order to develop appropriate interventions and identify risk factors for people in different racial and ethnic groups, with different levels of language acculturation and literacy, in order to measure the impact of such factors on health status and health care. Access to Care Equal access to health care is protected by civil rights laws, and racial and ethnic data can be used to establish whether the goals set forth in law are in fact realized in practice.
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by serving as a basis for: · Determining program eligibility, forecasting budgets, and conducting needs assessments, Evaluating the health status of the overall population or population subgroups, · Generating hypotheses about the potential causes of observed disparities or health problems, . · Identifying the need for and helping to focus special initiatives designed to reduce disparities, Evaluating programs by measuring the progress achieved under .
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Absent relevant measures and information, health plans also miss the opportunity to work with providers, health departments, and elected officials to redress disparities. Quality of Life Disparities in health status and care contribute to an overall reduction in the quality of life for minority groups as well as the nation (IOM, 2002a and 2002b)
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. Federal and State Laws Affecting the Collection of Racial and Ethnic Data Mara Youdelman reported that many providers, insurance plans, and local officials erroneously believe that federal law and state governments 6The workshop did not review legal or regulatory requirements related to collecting information about socioeconomic variables.
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Initial results from this state survey are based on interviews in 20 states. The researchers obtained information from Medicaid agencies, some health plans, the offices of minority health, and other state and health care officials to study prevailing practices.
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, they required states to notify health plans of the race, ethnicity, and primary language of beneficiaries upon enrollment in a health plan, a requirement that contrasts with the more limited federal requirements for health plans to collect racial and ethnic data. Furthermore, the Medicare Plus Choice program recently required plans to conduct a project that specifically addressed the needs of culturally and linguistically distinct groups or a project that attempts to reduce racial disparities.
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These states have no separate provisions in the insurance statutes or HMO laws that prohibit racial or ethnic discrimination, and health insurers either do not appear to fall within the ambit of the separate public accommodations statute or have been found by a state court to be covered. Alabama, Georgia, and Mississippi provide no protection for racial and ethnic health care consumers in their insurance laws, managed care laws, or general civil rights laws.
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applications for prevention activities all require the collection and reporting of racial and ethnic data. No federal statutes require the collection or reporting of primary language data; however, the Medicaid managed care regulations require states to provide managed care organizations with racial, ethnic, and primary language data about enrollees.
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as an illustration of how regulatory decisions can affect the collection of racial and ethnic data. The Act is likely to have a dramatic effect on all providers and health plans: it establishes national standards for electronic transactions and requires all health plans, health care clearinghouses, and providers that conduct business electronically to comply with the new standards.
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A number of workshop participants agreed that inclusion of racial and ethnic data in a covered transaction will require a coordinated industry effort; greater attention by health plans, for example, could lead to the inclusion of these fields. DHHS officials pointed out that the HIPAA code sets adopted by the Department were recommended by the industry.
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Leonard Rubenstein, executive director of Physicians for Human Rights, argued that one concern is that racial or ethnic data can be used for redlining. He noted, however, that "the history of civil rights enforcement in the United States involved using data, including racial data, to achieve civil rights objectives.
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For example, those affiliated with health care providers and plans expressed concern that collecting racial and ethnic data will increase the cost of record keeping. Participants therefore urged that requirements to collect racial and ethnic data be adopted after consideration of their costs as well as their benefits, and that practical and broadly accepted standards for measurement be developed.
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These data are collected by federal, state, and local governments as well as private health plans and some large provider organizations. Issues related to these data were considered during the workshop presentation and discussions.
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The company decided that it was important to provide high-quality care for these groups, and therefore began collecting racial and ethnic data from all enrollees in order to discern any discrepancies in health care services.16 The information was collected on enrollment forms after an individual was accepted for coverage or when an individual changed coverage. Inferring Missing Data Workshop participants discussed the possibility of inferring missing racial and ethnic information on health data sets by appending censusbased socioeconomic characteristics of residential areas to individual records.
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A study by Geronimus and Bound in 1998 used samples from nationally representative data sets linked to census data in order to estimate health outcomes of different racial groups. Their analysis investigated "whether statistical power is sensitive to the timing of census data collection or to the level of aggregation of the census data; whether different census items are conceptually distinct; and whether the use of multiple aggregate measures in health outcome equations improves prediction compared with a single aggregate measure" (Geronimus and Bound, 1998,p.4751.
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, in order to mandate plans to report HEDIS performance measures by racial and ethnic categories, "we would need to see much greater movement towards uniformity and standardization of racial and ethnic data capture by plans." While the Office of Management and Budget (OMB) has issued a standard set of racial and ethnic categories, workshop participants reported that these are not consistently applied.
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Both the medical records and the hospital discharge data rely on reports compiled by hospital staff, and so the comparison relied on the same underlying data. Neither the medical records nor the discharge data involved collecting information from the patients.
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For example, Geppert suggested that linking death certificate data with encounter records, or hospital discharge data with birth data, will produce better measures of health outcomes. Participants observed, however, that such linkages can be hampered by variations in racial and ethnic categories both among states and between states and the federal government.
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A study conducted by Jeffrey Geppert, of the Stanford Center for Health Policy, identified 77 specific state initiatives that were based in whole or in part on health status, health care, or public health data disaggregated for different racial and ethnic groups (Geppert et al., 20031. For example, the Florida Chronic Disease Community Intervention Program aims to reduce cardiovascular disease, diabetes, and associated complications.
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But these discrete legacy systems do not use the same data element definitions for unique patient identifiers, for geography, or for demographics, including racial and ethnic data, and the discrepancies greatly increase the effort required to achieve comparable data sets. Ranbom described how over the past 5 years state Medicaid programs transformed themselves from the payer of last resort to population-based health plans that are consumer focused and performance based.
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PRIVATE-SECTOR DATA COLLECTION Several workshop participants presented papers on how health plans, hospitals, and medical groups approach disparities in the context of quality improvement (Nerenz and Currier, 2003; Bocchino and Wheeler, 20031. The presenters contended that such disparities erode the quality of care, but that health plans, hospitals, and medical groups have mechanismsincluding the collection of racial, ethnic, and other consumer-related data for measuring and improving quality, and these mechanisms can be used to address the disparities.
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According to Peterson, health plans collect racial and ethnic data from their members or enrollees for a variety of reasons: for evaluating differences in access to care and compliance with therapies, for designing culturally appropriate educational and member communications, and for designing clinical in-service quality improvement activities. In her view, "health plans recognize cultural diversity as an important issue, which offers challenges and opportunities.
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Bocchino stated that "a coordinated, directed effort to accelerate the collection of accurate data would be supported by health plans and would remove many of the barriers that we found when we did these interviews .
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The project will develop procedures to collect data uniformly across the six participating sites, pilot test the procedures at the six sites, and then move from there toward actually developing and implementing interventions that will improve the quality of care for different population groups. AHA hopes to use this as a means to educate hospitals around the country about the importance of collecting racial, ethnic, and primary language data.
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This reflects a move towards placing accountability for clinical quality at the provider level. The NCQA advocates the need to coordinate public- and private-sector activity in this arena to ensure consistency and to reduce provider burden." One problem Webber highlighted is that "consumers currently do not understand the role of an accountable health plan, in improving, organizing, coordinating health care quality." The NCQA is considering adding a data element that requires health plans to monitor disparities of health care in their enrolled populations.
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Health plans surveyed by Bocchino and Wheeler (2003) suggested it would be helpful to have a public education campaign, involving members and employers, with site programs to enhance understanding of why this information has to be collected and how useful it can be to enrollees in their health care needs.
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In this area participants also called for careful consideration of the implications of such data collection for the privacy of respondents. In summary, the workshop participants expressed support for racial and ethnic data collection efforts but called for stronger federal leadership.
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