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EXECUTIVE SUMMARY Dispanties in health care are among this nation's most serious health care problems. Research has extensively documented the pervasiveness of racial and ethnic disparities. Minorities receive poorer quality care in such important areas as cardiovascular disease, cancer, asthma, and diabetes (IOM, 2002b). Research has also extensively documented geographic disparities, with levels of health care quality varying by region and state (Dartmouth Atlas of Health Care Working Group, 1999; Jencks et al., 2000~. Socioeconomic disparities are also quite common: millions of low income Americans lack insurance and receive poorer health care quality overall (IOM, 2002a). As part of a national effort to eliminate health care disparities, Congress in 1999 required the Agency for Healthcare Research and Quality (AHRQ) to produce a new annual report to be called the National Healthcare Disparities Report (NHDR). The first edition of the NHDR will be published in fiscal year 2003 (October I, 2002 to September 30, 2003~. Beginning in fiscal year 2003, AHRQ wall produce another annual report mandated by Congress, the National Healthcare Quality Report. Together, these reports wait call attention to the "inequality of quality" (:FiscelIa et al., 2000, p. 2579~. Quality can be defined as "the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional Imowledge" (IOM, 1990, p. 211. AHRQ commissioned the Institute of Medicine (IOM) to establish a committee to provide guidance on the NHDR in the areas of access to health care, utilization of services, and the quality of services received. The committee was asked to consider such population characteristics as race and ethnici~cy,1 socioeconomic 1 Race and ethnicity are defined using the categories in tibe Office of Management and Budget (OMB) Directive 15: American Indian or Alaska 1

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2 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT status,2 and geographic location. It was also asked to examine factors that included possible data sources and types of measures for the report. The Committee for Guidance in Designing a National Healthcare Disparities Report was created in 2001. It focused on five areas critical to the NHDR: 1. Measurement of socioeconomic status in disparities research; 2. Measurement of disparities in health care services and quality; 3. Measurement of disparities in health care access; 4. Measurement of geographic units in disparities research; and 5. Subnational datasets. Guiding the National Healthcare Disparities Report While socioeconomic status is not the only factor related to racial and ethnic health care disparities, it is a highly important one because racial and ethnic minorities are more likely to have lower socioeconomic status. Using socioeconomic status as a s~atifier in collecting data and as a control in analysis would more clearly indicate the extent to which disparities result from racial and ethnic factors rather than from socioeconomic status. It should be noted that adjusting for socioeconomic status almost always reduces, though seldom eliminates, the effects of race and ethnicity on the health care that a patient receives (IOM, 2002b). I. The National Healthcare Disparities Report should present analyses of racial and ethnic Native; Asian; Black or African American; Native Hawaiian or other Pacific Islander; and White. OMB Directive 15 defines ethnicity separately from race, and it is limited to Hispanic or Latino or not Hispanic or Latino. 2 Socioeconomic status is a complex concept that combines dimensions of social and economic resources as well as societal ranking or prestige.

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EXECUTIVE SUMMARY disparities in health care in ways that take into account the effects of socioeconomic status. 3 There are questions about how best to measure the influence of socioeconomic status on health care. Socioeconomic status is mainly measured using income and education. However, both have different meanings for different racial, ethnic, and other populations, and their use can be problematic when this variation is not taken into account. Income, for example, more accurately captures the financial resources of minorities than Whites, who are more likely to have assets such as real estate and other investments (Oliver and Shapiro, 2001; Smith, 2001~.3 Educational levels for Whites and minorities can have different implications because minorities often attend schools with fewer resources and less prestige. Similarly, an immigrant's degree earned from a school abroad may be valued less than a degree earned at an American school. AHRQ should sponsor research on the relationship between socioeconomic status and health care as a basis upon which to construct more accurate and meaningful measures. Areas where research is needed include identification of the dimensions of socioeconomic status that most influence health care access, service utilization, and quality, and the reasons for their influence. Research is also needed to evaluate how well measures of socioeconomic status are associated with access, use, and quality of health care services. In addition to income and education, these measures include but are not limited to total wealth, occupation, and deprivation indices, that is, composite measures formulated from such vanables as employment status and access to a car. 2. A~Q should pursue a research initiative to more accurately and meaningfully measure socioeconomic status as it relates to health care access, service utilization, and quality. 3 For example, in 1994, White households had a median income of $33,600; Black households, $20,508; and Hispanic households, $22,644. In terms of net financial assets, White households had a net worth of $7,400; Black households, $100; and Hispanic households, $300 (Oliver and Shapiro, 2001~.

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4 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT Access to health care is particularly important for racial and ethnic minorities. They have fewer economic resources and more frequently live in disadvantaged geographic areas. They are more likely to report that they are in fair or poor health and are more likely to receive discnminatory treatment in the health care system. In addition, they are less likely to get preventive services and attention for many chronic conditions. They also have higher mortality rates from a range of conditions (IOM, 200 1a; TOM, 2002b). Access applies to entry within the system of care as well as entry to the system of care. While access to the system of care may mean that a patient gets emergency or primary care, access within the system of care is necessary to obtain such vital services as specialized care, prescription drugs, and follow-up treatment. Access to and within the system of care is influenced by such diverse factors as insurance coverage, the availability of transportation, language translation services and other aspects of cultural competency, and time that can be taken from work. 3. Access is a central aspect of health care quality. As such, the National Healthcare Disparities Report should give it prominent attention. in general, minorities receive fewer services than advantaged populations. However, in certain cases, minority populations receive more services, and they usually indicate poor prior care (LaVeist, 2002~. For example, African Americans with diabetes are more likely to have limbs amputated than Whites. Including measures of both kinds of disparities in the NHDR would provide a fuller picture of the inferior health care quality often experienced by minorities (IOM, 1993~. 4. The National lIealthcare Disparities Report should include measures of high utilization of certain health care services that indicate poor health care quality. It should also include measures of low utilization of certain health care services, which are more commonly used to indicate poor health care quality.

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EXECUTIVE SUMMARY 5 While the NHDR should feature national level data, it should also include data by smaller geographic units that interest the report's primary audiences of members of Congress, other policy makers, and consumers. For example, analyses such as state-by-state comparisons on health care are familiar and meaningful to members of Congress, other policy makers, and consumers (IOM, 200Ib). Many members of Congress also represent rural and urban areas, making them highly relevant (Ricketts, 20021. 5. The National Healthcare Disparities Report should present data on disparities at the state level. It should also present data on disparities along a rural-urban continuum. National datasets such as the Medical Expenditure Panel Survey (MEPS) and the National Health Interview Survey (NHTS) currently do not have the sample sizes needed to supply data for the NHDR on geographic disparities by regions or states. Their sample sizes are also too small to supply data on disparities for such racial and ethnic subpopulations as Chinese, Korean, and Indian Asian Americans (Reilly, 2002~. Subnational data sources hold promise for supporting measures in the NHDR. Many racial and ethnic subpopulations are geographically concentrated and well represented in survey samples. However, they also have a number of limitations. For example, subnational datasets measure race and ethnicity in different ways. While some allow respondents to choose more than one racial category, others do not. In some, race and ethnicity are reported by respondents, while in others they are reported by observers. AHRQ should work with public and private organizations that sponsor key subnationa] data sources to address issues of standardization. 6. In the future, if A~Q continues to rely on suhnational data sources for the National Healthcare Disparities Report, it should work with public and private organizations that sponsor key suhnational data sources to identify core elements in surveys that can be standardized.

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6 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT AHRQ must use measures and datasets that meet rigorous scientific standards if it is to provide a credible and useful report for policy makers and other audiences. To do so, AHRQ will need expertise and substantial means to carry out such tasks as identifying appropriate ways to measure socioeconomic status in relation to health care disparities and formulating and evaluating measures of health care access, service utilization, and quality based on their validity, reliability, and other criteria. Measures require data to support them. However, the agency must have access to the expertise and resources needed to improve the usefulness of subnational datasets to the NHDR. 7. A~Q should receive adequate resources to develop ~latasets and measures needed for the National Healthcare Disparities Report. The NHDR could benefit from an association with the NHQR. In addition to the conceptual framework that the reports share, measurement selection for the NHDR could be guided by the process used for selecting measures for the NH:QR. Both could feature the same measures where those in the NHQR have special relevance to areas where disparities are particularly large, are likely to result in death or serious illness, or are amenable to improvement. Measures included in the NHQR will be selected from a larger set of measures AHRQ will use to monitor health quality. The NHDR could also be drawn from measures in this larger set if they are more relevant to disparities. Lastly, the NHDR could make use of measures of disparities in health care access, utilization, and quality described in commissioned papers by lLaVeist (LaVeist, 2002) and Lurie (Lurie, 2002). Conclusion The National Healthcare Disparities Report could play a major role in raising awareness of racial, ethnic, socioeconomic, and geographic health care disparities. It could also help to guide Congress and other policy makers in areas that require action to eliminate disparities.

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EXECUTIVE SUMMARY 7 The Committee's guidance on data and measurement development as well as report content would enhance the contributions that the NHDR could make to this cntical area of health care. The Committee's guidelines are summarized in Table ESPY. TABLE ES-1 Guidance for the National Healthcare Disparities Report 1. The National Heaid~care Disparities Report should present analyses of racial and ethnic disparities in health care in ways that take into account the effects of socioeconomic status. 2. AHRQ should pursue a research initiative to more accurately and meaningfully measure socioeconomic status as it relates to health care access, service utilization, and quality. 3. Access is a central aspect of health care quality. As such, the National Healthcare Disparities Report should give it prominent attention. 4. The National Healthcare Disparities Report should include measures of high utilization of certain health care services that indicate poor health care quality. It should also include measures of low utilization of certain health care services, which are more commonly used to indicate poor health care quality. 5. The National Healthcare Disparities Report should present data on disparities at the state level. It should also present data on disparities along a rural-urban continuum. 6. In the future, if AHRQ continues to rely on subnational data sources for the National Healthcare Disparities Report, it should work with public and private organizations that sponsor key subnational data sources to identify core elements in these surveys that can be standardized. 7. AHRQ should receive adequate resources to develop datasets and measures needed for the National Healthcare Disparities Report.

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GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT Reference List Da~l~outh Atlas of Health Care Working Group. 1999. "The Dartmouth Atlas of Health Care in the United States." Online. Available at www.dartmouthatlas.org/99US/chap_4_sec_5.php "accessed Nov. 29, 2001~. Fiscella, K., P. Franks, M. Gold, and C. Clancy. 2000. Inequality in health: addressing socioeconomic, racial and ethnic disparities in health care. JAMB 283 (19):2579-82. IOM. 1990. Medicare: A Strategy for Quality Assurance. K. Lohr and A. Walker, eds. Washington DC: National Academy Press. 1993. Access to Health Care in America. Washington DC: National Academy Press. 2001a. Coverage Matters: Insurance and Health Care. Washington DC: National Academy Press. 2001b. Envisioning the National Health Care Quality Report. M. Hurtado, E. Swift, and J. Corrigan, eds. Washington DC: National Academy Press. . 2002a. Care Without Coverage: Too Little) Too Late. Washington DC: National Academy Press. 2002b. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. B. Smedley, A. Stith, and A. Nelson, eds. Washington DC: National Academy Press. Jencks, S. F., T. Cuerdon, D. R. Burwen, B. Fleming, P. M. Houck, A. E. Kussmaul, D. S. Nilasena, D. L. Ordin, and D. R. Arday. 2000. Quality of medical care delivered to Medicare beneficiaries. JAMA 284 (13~:1670-76. LaVeist, T. 2002. Measuring disparities in health care quality and service utilization. In Guidance for the National Healthcare Disparities Report. E. Swift, ed. Washington DC: National Academy Press.

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EXECUTIVE SUMMARY 9 Lurie, N. 2002. Measuring disparities in access to care. In Guidance for the National Healthcare Disparities Report. E. Swift, ed. Washington DC: National Academy Press. Oliver, M., and T. Shapiro. 2001. Wealth and racial stratification. In America Becoming: Racial Trends and Their Consequences. Vol. 2. N. J. Smelser, W. J. Wilson, and F. Mitchell, eds. Washington DC: National Academy Press. Reilly, T. W. 2002. Overview of the National Healthcare Quality Report. Presentation to the First Meeting of the IOM Committee for Guidance in Designing a National Health Care Disparities Report (Jan 28~. Ricketts, T. C., III. 2002. Geography and disparity in health. In Guidance for the National Healthcare Disparities Report. E. Swift, ed. Washington DC: National Academy Press. Smith,J.P. 2001. Race and ethnicityinthelabor market. In America Becoming: Racial Trends and Their Consequences. Vol. 2. N. J. Smelser, W. J. Wilson, and F. Mitchell, eds. Washington DC: National Academy Press.