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10 DESIGNrNG A NATIONAL HEALTHCARE DISPARITIES REPORT COMMITTEE REPORT It is well established that race, ethnicity, socioeconomic status, and geographic location are among the factors that influence health care independent of patient need (IOM, 2002b; National Center for Health Statistics, 2001; National Quality Forum, 2002; Nerenz et al., 2002~. Growing concern over racial, ethnic, geographic, and other disparities in health care prompted Congress in 1999 to require the Agency for Healthcare Research and Quality (AH:RQ) to produce a new annual report beginning in fiscal year 2003 (October I, 2002 to September 30, 2003~. The National Healthcare Disparities Report (NHDR) will take its place alongside another new annual report to Congress to be called the National Healthcare Quality Report (NHQR). Together, they will provide policy makers, consumers, and others with a more complete picture of the health care that Americans receive and of the areas that need attention. To help it address a number of technical issues related to the NHDR, AHRQ commissioned the Institute of Medicine (IOM) to examine issues related to racial, ethnic, geographic, and socioeconomic access to--and use of--health care services, as well as to the quality of care provided. In addition, the TOM was asked to take into account explanatory factors such as spoken language, literacy, culture, community influences, and attitudes toward health. Also, the ~ As a federal agency AHRQ must use the racial categories specified by the federal Office of Management and Budget (OMB) in OMB Directive 15: American Indian or Alaska 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. Currently, there is not a standardized treatment of racial and ethnic subpopulations. See National Quality Forum (2002) for a discussion of the lack of subpopulation definitions. 10

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1: COMMITTEE REPORT 11 IOM was asked to examine measures and data sources that could be used in the report.2 AHRQ requested that the TOM consider issues related to the NHDR within the context of the framework developed by the IOM's Committee on the National Quality Report on Health Care Delivery in its study, Envisioning the National Health Care Quality Report (IOM, 2001 c). The framework consists of a matrix of components of health care quality and consumer perspectives on health care needs. The four components of health care quality are based on those presented in Crossing the Quality Chasm (TOM, 2001b): safety, effectiveness, patient centeredness, and timeliness. There are four consumer perspectives on health care needs: staying healthy, getting better, living with illness or disability, and coping with the end of life.3 In the framework, equity is a component that applies to both populations and individuals. It is defined in terms of"providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status" (TOM, 200 Ib, p. 6~. For populations, equity means reducing disparities in the use of health care services that are related to personal characteristics such as race, ethnicity, socioeconomic background, and geographic location. Research documents that insurance coverage is particularly important to achieving this goal (IOM, 2001a; TOM, 2001b). For individuals, it refers to the receipt of safe and effective services based on need. As Figure 1-1 shows, the framework treats equity as a cross-cutting factor, applicable to each cell of the matrix. AHRQ will use the same framework for the NHDR. This reflects the agency's plan to make health care quality a major focus of this report, which is appropriate since disparities often represent an 2 At the same time that the IOM Committee for Guidance in Designing a National Health Care Disparities Report was meeting, the National Quality Forum (NQF) was producing a report (National Quality Forum, 2002) that addressed the issue of quality measures best suited to capturing health care disparities. To avoid duplicating the work of the NQF, the committee focused on matters relating to service utilization and access. 3 See chapter 2 of IOM (2001 c) for definitions of these terms and an elaboration on the framework as a whole.

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12 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT "inequality in quality" (FiscelIa et al., 2000, p. 2579~. Within the framework, the NHDR will highlight health care issues related to equity and the extent to which health care disparities undermine its achievement. FIGURE 1-1 Framework for the National Healthcare Quality Report and the National Healthcare Disparities Report Components of Health Care Quality Consumer ~ ~ _ Perspectives on => Heals Care Needs ~ ~ ~ ~ ~ Staying Healthy ~ _ Getting Better Living with Illness or _ Disability _ Coping with the End _ cow cow an .= - E~ 1 . ~ 3 a To carry out this work, the IOM established the Committee for Guidance in Designing a National Health Care Disparities Report. The committee met twice. At its initial meeting in January 2002, it planned its work and discussed its charge. it also was briefed on disparities- related issues by experts from AHRQ, the U.S. Bureau of the Census, the National Center for Health Statistics (NCHS), the NQF, and the TOM. The committee commissioned five consultants to address key research topics. At the March meeting, they delivered presentations on the following: Marian E. Gornick (independent consultant): measurement of socioeconomic status in disparities research; Thomas A. LaVeist (Johns Hopkins University): measurement of disparities in health care services and quality; Nicole Lurie (RAND): measurement of disparities in health care access; Thomas C. Ricketts, TII (University of North Carolina-Chape} Hill): measurement of geographic units in disparities research; and Ross Arnett (independent consultant): subnational datasets for use in the NHDR. At the March meeting, the committee also heard testimony from a number of other invited

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1: COMMITTEE REPORT 13 experts on health care disparities. These experts participated in one of the following panels: Disparities in Public Health; Disparities in Health Care Purchasing and Providing; Disparities in Health Care Delivery; or General Comments on Disparities.4 1-1. MEASUREMENT OF SOCIOECONOMIC STATUS IN DISPARITIES RESEARCH Socioeconomic status is a complex concept that combines dimensions of social and economic resources as well as societal ranking or prestige. As such, it is related to social stratification, or "a system of social relationships that determines who gets what, why" (Kerbo, 1996, p. 11~; social class, or "social groups arising from interdependent economic relationships among people" (Krieger et al., 1997, pp. 344-5~; and other concepts identified with social inequality. Socioeconomic status influences health care in a number of ways. For example, an individuaT's or family's material circumstances affect health care access, services, and quality since they are directly related to adequate insurance coverage (TOM, 200 1a; Lurie, 2002~. Social status affects health care by influencing the ways in which individuals are perceived. For example, health care professionals are more likely to take seriously those who appear to have higher status (Magnus and Mick, 2000~. In addition, education, well-connected social networks, experience in dealing with professionals, poise, and other aspects of higher social position can help patients effectively navigate a complex health care environment that features health care insurers and individual and institutional providers, among others. The ability to navigate this system can in turn influence the access, services, and quality of care that patients receive (Gornick, 2002; TOM, 2002b; Magnus and Mick, 2000~. The NHDR should contain analyses of racial and ethnic health care disparities that reflect the influence of socioeconomic status. There are two main reasons for paying particular attention to socioeconomic status. First, it would help to clarify the extent to which health care disparities result from socioeconomic factors or from racial 4 See Appendix I for the Workshop Agenda and Appendix II for a summary of the public testimony.

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1 4 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT and ethnic factors. Socioeconomic status is associated with race and ethnicity: racial and ethnic minorities are more likely to have Tower socioeconomic status as measured in a variety of ways, including income, wealth, and education (National Research Council, 2001~. Better understanding the relative effects that socioeconomic factors and racial and ethnic factors have on disparities is critical to identifying ways to eliminate them. Secondly, socioeconomic status deserves attention in its own right because it has a pervasive influence on both health status and health care. It is linked to health status in a number of ways. For example, those with lower socioeconomic status are more likely to lead socially isolated lives and to be unemployed or to work at jobs that are unfulfi~ling and stressful (Marmot, 2002~. They more frequently live in places where it is difficult to buy fresh food and to exercise. Their environments are more apt to be polluted by such elements as hazardous wastes, unclean air, and lead paint (IOM, 1999~. Socioeconomic status is also linked to differences in health care. Those with Tower socioeconomic status are more commonly uninsured and have more limited access to preventive, primary, and specialized care. They are more likely to suffer adverse health outcomes and poorer health status (IOM, 200 1a; TOM, 2002a). 1. The National Healthcare Disparities Report should present analyses of racial and ethnic disparities in health care in ways that take into account the effects of socioeconomic status. For the NHDR to adequately take into account the effects of socioeconomic status, it should use socioeconomic status in two different ways: first, as a stratification variable in collecting sample data on racial and ethnic disparities in health care access, service utilization, and quality; and secondly, as an independent vanable that serves as a control in analysis. Stratification would ensure adequate sample sizes of racial and ethnic populations with varying levels of socioeconomic status. Further, controlling for socioeconomic status would help to identify the extent to which disparities result from factors associated with race and ethnicity and the extent to which they result from factors associated with socioeconomic status. Using socioeconomic status as both a stratif~er and control would be more likely to yield reliable findings of the role that socioeconomic status

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1: COMMITTEE REPORT 15 plays in racial and ethnic health care disparities. Using socioeconomic status only as a control variable assumes that a single model fits all subgroups in the population. This assumption, however, may not be valid. It may be, for example, that there is a significant positive relationship between socioeconomic status and a particular dependent variable among Blacks, but no significant relationship among Whites. There might even be a significant negative relationship between the variables among Asian Americans or American Indians. The NHDR, therefore, should include analyses that stratify by race and ethnicity to explicitly test whether the relationships among variables are the same when each subgroup is considered in turn. To understand the independent impact of socioeconomic status on disparities, it is important to identify which of its dimensions have greater effects on health care, facilitating the development of more targeted and effective interventions. For example, are material resources more strongly related to receipt of quality care than educational level or occupation? If material resources are critical, then efforts can be focused on formulating and implementing policies and interventions to enhance economic well-being or to reduce the cost of medical care. If occupation is strongly associated with receipt of quality care, interventions can be focused on those in affected jobs. It is also important to determine the extent to which disparities are rooted in racial, ethnic, or socioeconomic issues. For example, is poor access to specialized care more strongly related to race or to income? Clarifying the impact of socioeconomic status on disparities would enhance the accuracy of the NHDR as well as add to the mix of issues that interventions need to address. The complexity of socioeconomic status is more exactly expressed in the many different ways that it has been operationalized (Liberatos et al., 1988~. There does not appear to be a single right way to operationaTize it. Different measures either taken by themselves or together capture important aspects of socioeconomic status and how it affects health care (Gornick, 2002; Liberatos et al., 1988~. There are several major approaches to measuring socioeconomic status. They include income, wealth, education, poverty level, occupation, and deprivation indices, which are composite measures consisting of such variables as employment status and access to a car. Some of the major

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1 6 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT approaches, namely income and education, are commonly used in the research literature. Wealth, including property holdings and income from investments, is less often used. Occupation is more frequently applied in British studies of the relationship between socioeconomic status and health status. Deprivation indices have not been extensively used in studies of health care. Each approach has advantages and disadvantages (Gornick, 2002~. At present, education and income are the measures of socioeconomic status for which enough data are available for use in the NH:DR. Education is a stable measure for adults, with nearly complete reporting in surveys. Income is included in most publicly reported datasets. Each has significant advantages, which have been noted by Gornick (Gornick, 2002) and others (Krieger et al., 19971. Survey respondents readily report information on their educational backgrounds, and education is commonly regarded as a meaningful and valid measure of socioeconomic status. Data on income are relatively accessible to researchers. It should also be noted that each has important disadvantages. Education may have different social meanings across generations and races and ethnicities. For example, a high school degree for the postwar generation was associated with more economic opportunity than a high school degree for younger generations. In addition, minorities often attend schools with fewer resources and less prestige, which can make their educational achievements less valued. Similarly, an immigrant with a college degree from another country may not receive the same economic returns as a person who graduated from an American college. Income data are missing for a significant proportion of people in most health care surveys. Survey respondents also tend to underreport income. In addition, income more accurately captures the financial resources available to minorities than to Whites, who are more likely to own real estate and have other investments and assets (Oliver and Shapiro, 2001; Smith, 2001~. Is education or income the better measure of socioeconomic status? Education and income are related variables: higher educational levels are associated with higher income levels. But this does not mean that they are interchangeable. For example, Gornick (Gornick,

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1: COMMITTEE REPORT 17 2002) examined the proportion of White and Black women over 65 who received mammograms, flu shots, and Pap smears in 1998 by two levels of income (below and above $25,000) and two levels of education (less than high school and high school or more). The data reveal disparities by race whether socioeconomic status is measured in terms of income or education. Nonetheless, stratification by income and education yielded appreciably different numbers for analysis. Almost nine times the number of Black women (985,000) had a lower level of education than the number (111,000) who had a lower level of income. More than two times the number of White women had a Tower level of income (11,434,000) than education (5,472,000~. As this also suggests, analyses of the relationship between socioeconomic status and health care can vary depending on the quality indicator used and the population or subpopulation examined.s Which measure or measures of socioeconomic status should AHRQ use in the NH:DR? This is an important question. To adequately answer it will require a clearer understanding of the relationship between socioeconomic status and health care. There is a striking dearth of studies of the relationship of socioeconomic status to health care. Income does appear to be a critical variable, and it is related to insurance coverage. Those on the higher end often receive private health insurance as a work-related benefit. While some on the Tower end of the income distribution may qualify for Medicaid depending on federal and state eligibility requirements, they are most likely to lack it. Many of those in the middle also lack health insurance (IOM, 2001a). However, research does not show whether income mainly accounts for the relationship of socioeconomic status to health care. Nor does it indicate whether other variables with which income is associated actually account for more of the relationship. For example, research reveals that those at different income levels tend to use the health care system in different ways. Those with higher incomes have a greater tendency to use preventive services while those with lower incomes have a greater tendency to use acute care sentences due in part s It should also be noted that analyses can vary depending on the cutpoints used for education, income, and other measures of socioeconomic status (Liberatos et al., 19 8 8~.

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1 8 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT to greater morbidity. This pattern holds true even when cost is not a factor, as is the case with the use of influenza vaccinations by Medicare beneficiaries, a benefit that is completely covered by Medicare (Gornick, 2000~. Is it income per se that accounts for these different patterns? Or is it factors with which income is associated, such as access to transportation and proximity to health care providers? 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. AHRQ should sponsor research on the relationship of socioeconomic status to health care. Exploration of the relationship between socioeconomic status, health care, and other factors such as race and ethnicity would help to identify the most appropriate measures of socioeconomic status to use in studies on health care disparities. Appropriate measures in turn would help to indicate which of the many dimensions of socioeconomic status are most likely to affect a particular aspect of health care and therefore to be associated with outcomes. The following are examples of important areas where more research is needed: In general, which dimensions of socioeconomic status most affect health care and why? How strongly are different measures of socioeconomic status such as income, education, and occupational prestige associated with health care? Should socioeconomic status be studied at the individual, household, or community level? Research indicates that different races, ethnicities, and nativities call for different levels of analysis. For example, community-level measures may better capture the social and economic status and environments of immigrants and some races and ethnicities while individual- and household-level measures may be more appropriate for others (Krieger et al., 1997~.

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1: COMMITTEE REPORT 19 The status dimension of socioeconomic status is particularly understudied, both in terms of how it does and does not empower patients and how it affects the relationship that patients have to providers and other aspects of the health care system. How might status be operationalized? Is income sufficient? Or are other measures of status, such as car and home ownership, needed? Is one measure of socioeconomic status adequate? Or do composite measures, such as deprivation indices, perform better? Are different dimensions of socioeconomic status implicated in preventive, acute, or other aspects of health care? For example, is it the case that attitudes toward health, health literacy, cost and availability of transportation, or work schedule flexibility influence a patient's use of preventive services, while income more strongly accounts for use of acute care? The NHDR will be focused on issues of access to and within the health care system, health care service utilization, and health care quality. How are patterns in each related to a patient's socioeconomic status? Are the results of quality measurement affected by the socioeconomic status of the population more likely to use particular services? 1-2. MEASUREMENT OF DISPARITIES IN ACCESS TO AND WITHIN THE HEALTH CARE SYSTEM Access can be defined as entry to the system of care as well as entry within the system of care. Access is a central aspect of quality, and the NHDR should give it prominent attention. The framework of the NHQR treats access as an important aspect of all four components of health care quality: safety, effectiveness, patient centeredness, and timeliness. However, access deserves greater prominence in its own right because it is a critical starting point for quality care. As such, it is a fundamental aspect of quality, especially for racial and ethnic minorities, those with fewer socioeconomic resources, and those in

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20 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT disadvantaged geographic areas (TOM, 200 1a; TOM, 2002a; TOM, 2002b; National Center for Health Statistics, 2001~. 3. Access is a central aspect of health care quality. As such, the National Healthcare Disparities Report should give it prominent attention. Access should be reconceptualized as a dimension of health care rather than as a dimension of medical care alone. Access to physicians and other medical care professionals is essential: it provides the diagnoses, medical interventions, and monitoring that can be critical to preventing and treating illness. However, primary care physicians typically coordinate care received from other health care specialists including nutritionists, dentists, and occupational, physical, and mental health therapists. Disparities in access depend in part on the social and human capital of the patient and the community. Some factors play important roles, including adequate and secure material resources; community norms that favor healthy lifestyles; social support networks supplied by families, mends, and religious, professional, social, and civic organizations; the availability of safe and convenient places to exercise and shop for fresh food; well-developed transportation systems; high literacy rates; and Tow crime rates (Aday, 2001; Fiscelia, 2002; TOM, 2002b; Lurie, 2002; Ricketts, 2002~. As such, a wide range of measures of access influence entry to the system of care as well as entry within the system of care. They include factors as diverse as the extent of insurance coverage, language access services, and other aspects of culturally competent care. For example, cultural competency is critical in the diagnosis and treatment of mental illness: behavior that is interpreted as mental illness in one culture may be an appropriate way of displaying emotion in another culture (DHHS, 1999~. The following are some of the new measures of access suggested by Lurie for development and use in the NHDR: Adequacy of insurance coverage. Based on work by Bashshur et al. (Bashshur et al., 1993), Lurie defines underinsurance as "a

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34 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT al., ~ 998; Heymann, 2000; Lannon et al., 1995; Perioff et al., 1997~. Complying with providers' instructions can be more difficult when literacy is a problem or when health insurance is lacking or does not fully cover the recommended treatment. Should the NHDR only devote attention to matters under the direct influence of the health care system? As defined by the Committee on the National Quality Report on Health Care Delivery, these matters refer to "care that can be influenced by the health care system as it exists or as it is envisioned" (TOM, 200Ic, p. 84~. To elaborates those in rural areas are more likelier to die from car accidents (Ricketts, 2002~. Although the health care system can seek to improve trauma care, many policy responses such as speed limits, road design, and car design fall outside of its purview. The NHDR should mainly, but not exclusively, address issues that the health care system could directly affect. It is appropriate for AHRQ to make health care quality and the quaTity-related performance of the health care system an important focus of the NHDR as well. However, disparities are inextricably related to issues that fall outside of the primary influence of the system such as the availability of public and private transportation (IOM, 2001a; TOM, 2002a; TOM, 2002b; Lurie, 2002~. Therefore the NHDR should address these disparities too. For example, the report could include data on disparities in reliance on public transportation, which can make timely treatment difficult for those in rural and inner city communities. The NHDR will change and improve over time. For practical reasons, it is likely that in the short term AHRQ would make use of current measures and data sources on racial, ethnic, socioeconomic, and geographic disparities in the early editions of the report. However, with time and adequate resources, AHRQ will have the opportunity to introduce more specific measures for use in later editions that will more accurately detect the magnitude of health care disparities. Measures could be drawn from those used in the NHQR that are particularly relevant to racial, ethnic, socioeconomic, and geographic disparities. These include measures of areas with unusually large disparities; those likely to result in death or serious illness; or those susceptible to improvement. Because of space limitations, AHRQ will monitor a larger set of measures than it can include in the NHQR.

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1: COMMITTEE REPORT 35 Measures in this larger set could be used in the NHDR if they are more pertinent to disparities. Also, measures of disparities in health care service utilization and quality described by LaVeist (LaVeist, 2002) and measures of disparities in access described by Lurie (Lurie, 2002) could be used in the NHDR. Lastly, the design and dissemination of the NHDR will be critical to the report's success. A design that does not appeal to the report's audiences wall discourage them from reading it, using it as a reference source, and recommending it to others. Poor dissemination will mean that fewer people will leam about it, with the result that its annual updates on health care disparities will not have the impact that they should. The design and dissemination strategies for the NHQR developed by the Committee on the National Quality Report on Health Care Delivery (IOM, 2001 c) are sound approaches that could in general be applied to the NHDR as well. 1-7. CONCLUSION It is important to accurately identify the disparities that are primarily racial and ethnic and those that are primarily socioeconomic. Therefore, the NHDR should present findings on racial and ethnic health care disparities that reflect the impact of socioeconomic status. Also, there is currently an inadequate understanding of the relationship of socioeconomic status to health care. AHRQ should initiate research on the relationship with the goal of producing more useful, accurate, and meaningful measures of socioeconomic status. The NHDR should include measures of high utilization of certain health care services, such as greater minority use of emergency department care, that may indicate poor access to care or quality of care. To increase interest in the report by policy makers, consumers, and other key audiences, the NHDR should present data on disparities by state and by urban and by rural areas. Also, if the NHDR draws from subnational data sources in the Tong term, AHRQ should collaborate with data source sponsors to identify core elements in these surveys that can be standardized.

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36 CUID~CE fOR THE NAT~AL HEALTH CAM DISPARITIES UPON ARM has He oppo~i~ to maw Tic ~DR ~ valu~lc Ed c~cOvc tool far cbminshng racist chick socioccono~c, Ed gco~bic disp~bcs in Tic nabon~s basalt chic system. lo tsar adv~tapc of ~k opposing ~RQ should reccivc adequ~c Rang Ed rcso~ccs to develop Tic dstascts Ed mess~cs ~~ Fig be needed far Tic repod.

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