Eliminating Health Disparities Measurement and Data Needs (2004) / Chapter Skim
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Appendix D The Role of Racial and Ethnic Data Collection in Eliminating Disparities in Health Care
Appendix D The Role of Racial and Ethnic Data Collection in Eliminating Disparities in Health Care
Pages 202-231
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Tracking the racial and ethnic composition and changing health care needs of different populations is vital if our health care system, which includes both public health and the delivery of personal health care services, is to fulfill its essential functions. Measurement, reporting, and benchmarking are critical to improving care.
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With only a few exceptions, private insurers and health plans do not maintain data on the race or ethnicity of their enrollees. In this paper, we provide a framework for describing the role of racial and ethnic data in supporting essential functions of the health system.
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For example, while rates of diabetes are disproportionately high among African Americans, American Indians, and Hispanics, the prevalence of diabetes among Asians is less than that for whites (National Center for Health Statistics, 2001)
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Ensuring the Health of the Population Identifying Problems The ability to provide consistent and reliable epidemiological data on the incidence and prevalence of various health conditions and related risk factors among different racial and ethnic populations is essential to ensuring the health of the population. It also supports the rationale for allocating health care resources and developing appropriate public health interventions.
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have shown that African Americans with end stage renal disease were considerably less likely to receive a referral for a renal transplant than comparable whites, even when patient preference was taken into account. Several recent studies have also shown racial and ethnic disparities in performance on Health Employer Data and Information Set (HEDIS)
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Thus, in this section we highlight some potential uses of racial and ethnic data to promote improved health and health care in minority populations. Refining Public Health Initiatives and Enhancing Access to Care Knowing which racial and ethnic population groups are most at risk can help more effectively target public health efforts.
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Thus, routine reporting of widely used quality measures separately by race and ethnicity provides an excellent opportunity to identify disparities within health plans and to apply quality improvement principles to reduce them. Performance measures are typically reported as averages across all eligible patients but are not broken down by racial and ethnic group.
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Thus, reporting measures of care for specific racial and ethnic subgroups can strengthen the ability of consumers -- both individuals and employers who purchase care on their behalf -- to rationally choose health care providers. In addition, individuals and advocacy groups can use racial and ethnic data in negotiations with providers, health departments, and elected officials to hold them accountable for results and to develop additional programs and policies to address disparities.
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Ensuring Compliance with Civil Rights Law Routine monitoring of access, use of services, and key processes and outcomes of care by race and ethnicity is essential to ensuring compliance with civil rights laws and detecting evidence of discrimination. Whether these practices are intentional or not, whether they are at the level of an individual practitioner or due to system-level problems, they can produce harmful outcomes (IOM, 2003)
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. Collecting information on a patient's primary language is legal and authorized under Title VI of the Civil Rights Act of 1964, though few federal statutes require it (Perot and Youdelman, 2001)
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Among adults, Asian Americans/ Pacific Islanders were most likely to have at least a high school education (83 percent) , followed by African Americans (72 percent)
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. For example, economic returns for a given educational level are larger for whites than for African Americans, Hispanics, and American Indians (U.S.
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The VA and DOD also directly operate health care programs and have responsibilities for providing high-quality care to enrollees. The DOD has ready access to data on race and ethnicity and has conducted a number of focused studies to ascertain whether there are racial or ethnic disparities in care.
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Many large employers have begun requiring measures of quality, such as through HEDIS. However, lack of racial and ethnic data in the private insurance market has largely prevented assessment of quality of care for different racial and ethnic populations, let alone holding insurers accountable for providing care of similar quality.
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Because good health is essential for a productive workforce, employers with large minority workforces may inadvertently undermine their organization's productivity by contracting with insurers or health plans that have large disparities in the quality of the care they provide. Health Care Providers Increasingly, health care providers such as hospitals, clinics, and physician practices are also being held accountable for providing high-quality care.
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CMS also monitors the performance of the Medicare program through both Consumer Assessment of Health Plans Survey (CAHPS) and the Medicare Current Beneficiary Survey (MCBS)
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The two most widely used methods of imputation for this are geocoding and surname analysis. Both of these approaches are relatively easy to perform; however, both may have limited usefulness for identifying members of some racial or ethnic subgroups.
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However, data collection raises a number of concerns that must be addressed. These include methodological considerations, patient privacy and confidentiality, civil rights laws, and burdens that collecting additional data will create for various entities.
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Exposure to Civil Rights Litigation Increasing attention to patient privacy and the financial and criminal penalties associated with violating the Privacy Rule have also likely height
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However, many believe that the collection of such data for the purposes of monitoring and improving quality is consistent with civil rights laws designed to protect patients from differential treatment or discrimination based on personal characteristics. Some plans and providers report concerns that the routine collection of racial and ethnic data and the reporting of various performance measures by race and ethnicity place them at substantially increased risk of class action lawsuits were disparities in their plans to become apparent.
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. Adding data elements to large administrative data sets maintained by health plans can be expensive in terms of time and resources spent reconfiguring files and forms.
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Finally, the company is altering its marketing strategies, using a more diverse workforce, and stressing its commitment to cultural competence. Although much of this effort is relatively recent, the insurer's staff report little, if any, consumer resistance to voluntarily providing racial and ethnic information.
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· Minority populations constitute an increasingly large segment of the health care market; thus lack of data about their care will undermine efforts to support consumer choice and stimulate market forces. · The inability to routinely monitor the health needs and quality of care received by minority populations violates existing federal statutes and contradicts fundamental values of equity and fairness in this country.
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, National Health and Nutrition Examination Survey (NHANES) , Consumer Assessment of Health Plans Survey (CAHPS)
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In addition, CMS should use its purchasing power in working with Medicare+Choice plans to develop and implement data collection plans and initiatives to eliminate disparities. CMS should also consider whether the collection and reporting of accurate information about race and ethnicity should be a condition of hospital and nursing home participation in the Medicare program.
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Recommendation D9: The Department of Health and Human Services, the American Association of Health Plans, employer groups, and others should conduct education and outreach to health plans, purchasers, and employers regarding the legality of collecting data on race and ethnicity. Research In addition to research on disparities, expand research on data, such as types of data, relationships between variables such as race or ethnicity, SES, and education, and methods for oversampling smaller populations.
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Hughes 2002 Quality of Health Care for African Americans: Findings from The Commonwealth Fund 2001 Health Care Quality Survey. New York: The Commonwealth Fund.
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Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Board on Health Sciences Policy.
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Joseph, and M Gunter 2002 Eliminating racial/ethnic disparities in health care: Can health plans generate reports?
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2000 Title VI of the Civil Rights Act of 1964: Policy Guidance on the Prohibition Against National Origin Discrimination as It Affects Persons with Limited English Profi ciency. Washington, DC: U.S.
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