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4 MEASURING DISPARITIES IN ACCESS TO CARE Nicole Lurie Since the landmark Report of the Secretary's Task Force on Black and Minority Health, minority Americans have been consistently shown to have poorer health status and worse health outcomes than White Americans (DHHS, 1985~. These differences have remained so persistent that Healthy People 2010 specified the elimination of disparities in health as one of its two overarching goals (DHHS, 2002~. Included among the health disparities of most concern are those between different racial and ethnic groups and those associated with geography. There is now an emerging consensus that disparities, at least between different racial and ethnic groups, arise from several factors. These include differences in access to care and health insurance and in the amount and quality of care offered and received. They also appear to arise from factors not directly related to the health care system such as socioeconomic status, literacy, language, community factors affecting health, and differences in access to opportunity (Williams, 19991. The national goal of eliminating health disparities has led to a reexamination of the health care system and a call for intensive measures to move the nation well along toward meeting the goal (National Archives and Records Administration (NARA), ~ 9971. Learning from the quality movement, there has been heightened awareness that measurement is key to achieving success. Hence, in its reauthorization in 1999, the Agency for Healthcare Research and Quality (AHRQ) was directed to prepare a National Healthcare Disparities Report (NHDR), and it has formed an Office of Priority Populations (AHRQ, 1999~. These events coincide with a closely related effort: the development and publication of the National Healthcare Quality Report (TOM, 200 ~ c). An earlier report from the Institute of Medicine (TOM), Crossing the Quality Chasm, draws 99

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1 00 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT attention to the intimate relationship between quality and disparities by its position that equity is one of the key aspects of quality (IOM, 200 Ib). In preparation for the NHDR, AHRQ has commissioned the TOM to create a committee to provide guidance on how to address various topics, including access to care. This paper is intended to provide background and fresh thinking for the Committee for Guidance in Designing a National Healthcare Disparities Report on the leading issues surrounding the measurement of disparities in access to care. 4-1. SETTING THE CONTEXT In a seminal article that provides a conceptual framework for access to care, Aday and Andersen identify a combination of policy variables such as the presence of health insurance, personal variables (predisposing, enabling, and need), and process of care elements (for example, use) that lead to an outcome (Aday and Andersen, 1974~. Since the article's publication over a quarter century ago, much has sadly remained the same such as the lack of health insurance and primary care. But much has also changed, and the challenge of measuring disparities in access to care in the early 21St century must account for these new realities. Several are highlighted here: . National demographics are shifting dramatically, and the U.S. is much more multi-ethnic than at any time in its history. Some states, such as California, are already "majority minority states," and the proportion of the population that is Hispanic is expected to grow dramatically in the next decade (U.S. Bureau of the Census, 1996~. Although African Americans as a group continue to have some of the worst health outcomes, discussion of health disparities for racial and ethnic minorities must move well beyond comparisons of Afiican Americans and Whites.

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DISPARITIES IN ACCESS TO CARE 101 Concurrently, there has been a shift of the population from rural to urban and suburban areas (U.S. Bureau of the Census, 2002a). Populations in rural areas have declined and aged as younger people have moved to more urban environments. The recent influx of immigrant populations, who often work on farms and in meat processing plants, has changed the ethnic composition of rural areas as well. . . The aging of the population and a longer life expectancy mean that chronic disease is now much more prevalent. Concomitantly, our understanding of how best to care for people with chronic disease is improving. Attention to end-of-life care has provided new opportunities for people to receive care at home, and the dying process has become more patient centered. At the other end of the age continuum, survival among severely impaired infants has increased, and these children often require continuous personalized medical care services. There have been major and continued shifts in the financing and organization of care. While most insured Americans are enrolled in some form of managed care, the heterogeneity among health plans means that it is harder to generalize about them. Nonetheless, some common elements have facilitated our ability to examine and address disparities. Explicit attention to responsibilities for enrollees (or identification of a denominator population) creates important opportunities to measure both access and quality within health plans. With this has come increased accountability, a key element of which is measuring and reporting. Managed care has also reintroduced the concept of population health. Once considered analogous to public health, it is now well recognized that caring for populations is effectively done both inside the personal health care system and outside of it. Managed care has also brought with it pressure to reduce health care expenditures and concerns that access and quality could be compromised. Uninsurance--and underinsurance--remain major problems for over 60 million Americans, and there is no foreseen decline on the horizon (Commonwealth Fund, 2000~. The amount that

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1 02 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT individuals must pay for care is increasing, and half of all seniors report needing to cut back on essentials such as food and heat in order to pay for medications (Families USA, 2001~. The array of payment arrangements, deductibles, co-payments, and benefits has grown dramatically. Nonetheless, the uninsured, minorities, low- income populations, and rural residents disproportionately receive care in a separate, unmanaged system composed of community health centers, nonprofit clinics, various charity care arrangements, and emergency departments (IOM, 2000~. Our understanding of what causes disease is becoming clearer. Specifically, it is now estimated that up to 50 percent of health status can be accounted for by health behaviors and only 15 to 20 percent by the health care delivery system (McGinnis et al., 2002~. In other words, health care system factors contribute proportionately less to health status when compared to other factors, although the benefits are greatest for those in poor health and without access to care. Importantly, advances in genetics have confirmed that race is not a biologic construct, but a social one. There is more genetic variation within racial groups than between them (President's Commission, 1983~. Our understanding of health has broadened. Specifically, mental health and oral health have been more clearly defined as important components of health, and concepts like well-being or spirituality are increasingly thought to be integral to health. While the environment in which health services are provided has changed, the view of access to care has largely remained the same. 4-2. EVOLVING CONCEPTUAL FRAMEWORKS OF ACCESS TO CARE Our understanding of access to care has evolved over the last 25 years. The conceptual framework developed by Aday and Andersen identified the relationships among personal characteristics, policy variables, utilization, and outcomes. As the framework evolved, "potential access" became defined by characteristics of the delivery

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DISPARITIES IN ACCESS TO CARE 103 system and of individuals in the area. These were further divided into the now familiar predisposing, enabling, and need variables, measured at both the individual and community levels. "Realized access" was represented by utilization. It was also represented by experiences with care and equity of access that required that the distribution of services be based on need (Andersen and Aday, 1978; Andersen et al., 1983~. The 1983 President's Commission for the Study of Ethical Problems in Medicine and Biomedicine and Behavioral Science Research further emphasized the issue of equity in access in declaring that "equitable access to health care requires that all citizens be able to secure an adequate level of care without excessive burdens"~ (President's Commission, 1983, p. 4~. While it did identify a standard of "equity," it did not define "adequate level of care" or how it might contribute to outcomes. The IOM revisited the issue of access to care in 1993, defining access as "the timely use of personal health services to achieve the best possible health outcomes"2 (IOM, 1993~. Of note, in choosing indicators that represented access-related outcome measures, it more explicitly linked access to quality and implied that everyone should have access to care to make these "best possible" outcomes achievable. The committee recommended a series of indicators that affect outcome measures through the processes of entering and staying in the health care system, the utilization of services, and quality of care. The report depicts a more linear relationship between access and outcomes starting with structural, financial, and personal barriers and moving through the use of services and "mediators" (which are largely measures of quality) to outcomes. It acknowledged the complexity of identifying access issues, but did not address the extent to which a poor performance on outcome measures is a direct function of poor quality of care or of barriers to access before or after an individual has entered the delivery system. The advent of managed care brought with it a set of additional factors that relate to access. This expanded framework is embodied in the work of Docteur et al., who identify a complex series of factors ~ Emphasis added. 2 Emphasis added.

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1 04 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT related to access and quality in managed care (Docteur et al., 1996~. The authors include a number of contextual community variables such as available plan choices, active marketing and market characteristics, and stability of plan choices. They also recognize that access today may require navigating managed care plans, for example, to obtain referrals for care or to appeal denials. It is not clear how this challenge differs substantially from navigating the health care system as a whole. Finally, Envisioning the National Health Care Quality Report, issued by the TOM's Committee on the National Quality Report on Health Care Delivery, articulated a framework for consideration of quality, which is not unrelated to the frameworks described above (IOM, 200Ic). It takes the form of a matrix in which the rows describe consumer perspectives on health care needs (staying healthy, getting better, living with illness or disability, and coping with the end of life) and the columns describe components of health care quality (safety, effectiveness, patient centeredness, and timeliness). The relationships between access to care and this framework are important and are described in detail below. Neither the frameworks for describing access nor that for the National Healthcare Quality Report yet incorporate our knowledge of what creates health or evolution in the health care system. The Docteur et al. framework is something of an exception: it identifies community contextual variables (such as market competition) and available plan choices as access-related issues.3 However, as our understanding of factors that create health develops, it is clear that the nature of communities themselves and access to a well-functioning public health system are critical to achieving access to personal services. Increasingly, place appears to have an effect that is independent of socioeconomic status (Davey-Smith et al., 1998~. Consider, for example, factors that influence access to HIV care. A community's socioeconomic status and its physical and social environment affect the probability that one will become infected with HIV. Twenty-five percent of infected individuals in the U.S. do not even know they are infected and are thus completely unaware of the need for care (CDC, 3Andersen and Aday (Andersen and Aday, 1978) identify demographic characteristics of individuals in communities, such as the percent over age 65 or in poverty, as having potential impacts on access.

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DISPARITIES rN ACCESS TO CARE 105 2002~. Late presentation of disease is a major determinant of bad outcomes in this disease, which disproportionately affects minority populations. While some of these individuals may have had missed opportunities for HIV detection in the personal health care system (a quality issue), the nature of the community and the failure of public health efforts to maximize knowledge of HIV serostatus are major barriers to access. Late stage presentation of other diseases, including certain cancers, diabetes, and heart disease, also provides examples of how access is tied to the effectiveness of the public health system. An example of the importance of a community environmental factor is oral health. It is well documented that low income and minority children have poorer oral health and less access to preventive or restorative dental services. Fluoridation is the single most effective intervention in preventing caries, but approximately one-third of the U.S. population does not have access to fluoridated water, particularly in rural areas (National Institute of Dental and Craniofacial Research, 2000~. Risk behaviors are irrefutable contributors to health outcomes. and many of these behaviors are modifiable. Changing health behavior is a joint function of the individual, the public health system (largely through increasing awareness and education), and the delivery system. Yet, the current conceptualization of access to care with regard to behavior change places the responsibility either solely with the patient or inside the health care system, often within the patient-provider encounter. A recent review of a campaign to promote smoking cessation during pregnancy found that the campaign did not focus on minority populations, which have the highest rates of smoking and SIDS (Lewis, 2001~. Women who are unaware of the risks of smoking during pregnancy are less likely to seek or use smoking cessation services. Finally, it is recognized that for most chronic disease, the major caregiver is the patient and/or family. Most care (for example, medication adherence, adherence to risk reduction behaviors, and self monitoring) actually occurs in the home, where the level that patients receive is largely influenced by their communities.

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1 06 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT Hence, it is clear that the community, the public health system, the personal delivery system, and the individual all share responsibility in working to achieve optimal health outcomes. Figure 4-1 combines the frameworks discussed above to depict this relationship. FIGURE 4-1 Relationship between Population and Personal Delivery Systems Population Delivery System Community Characteristics Service Availability Community Demographics Normative Health Behaviors Physical and Social Environment Opportunity Structure (employment, education) Community Cultural Beliefs Market Characteristics (plan choice, structures) Sickness-creatin~ Environments Genetics_Nied *Includes entering and staying in system (use of services) Access to Care Structural System: Availability and Composition of Workforce Transportation Organization of Care System (health plan) Personal: Sociodemographic Characteristics Race Culture Language Attitudes Health Status Experience/Ability to Navigate System Need F. ~ 1nancmg Issues Insurance Status Provider Reimbursement Paths through Care* Personal Delivery System Quality ~ e hi ~> Staying Healthy Getting Better . . Llvmg with Illness or Disability Coping oftLhifend _ v, cat .s _ .s _ ~ _ _ Outcomes Death Health Status Satisfaction Cost Effects on Individuals, Families, and Communities

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DISPARITIES IN ACCESS TO CARE 4-3. ACCESS TO CARE AND THE QUALITY FRAMEWORK 107 The framework presented in Envisioning the National Health Care Quality Report highlights the fact that access to care can be a significant issue, even after someone has entered the health care delivery system (IOM, 2001c). Clearly, access throughout the lifespan to the full array of services identified in the rows of the framework is an important policy goal. Key aspects of access are related to each of the domains of safety, timeliness, effectiveness, and patient centeredness. Table 4-1 and Figure 4-2 identify examples of access indicators that can easily be placed in different cells of the quality framework. The following is a discussion of the relationship of access to the framework's four components of health care quality (timeliness, safety, effectiveness, and patient centeredness) and to the four consumer perspectives on health care needs (staying healthy, getting better, living with illness or disability, and coping with the end of life). Timeliness is unquestionably a component relevant to both for entering and staying in the system. With regard to safety, several studies have suggested that poor and minority patients are more likely to experience medical errors and are more likely to have cardiac procedures perfor~ned by providers with poorer outcomes. Whether this results from patients' uninformed choice of providers, the lack of availability of other providers to care for these individuals, or other factors is unclear. However, access to safe care is critical for optimal outcomes. Access to care that is not safe may actually be worse than no care.

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138 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT TABLE 4-4 Living with Illness or Disability MEASURE PROPOSED SOURCE Proportion of HIV-~nfected Centers for Disease Control and Individuals Who Know Their Prevention (CDC) Status Proportion of HIV-~nfected CDC Individuals Who Know Their Status and Are Receiving Care Proportion of ESRD Patients United States Renal Data System Referred for Transplant System (USRDS) Evaluation or Receiving Renal Transplant Proportion of Medicare Patients Centers for Medicare and Admitted for Heart Failure or Medicaid Services (CMS) Acute Myocardial Infarction (AMI) Who Saw a Specialist Proportion of Diabetics Who CMS Received an Eye or Foot Exam from a Health Professional Proportion of Diabetics Who Saw CMS a Nutritionist for Counseling Availability of Medicaid Current Population Survey (CPS), Coverage for Older Adults below CMS 200% of Federal Poverty Level (FPL) Language access. The Office of Civil Rights in the Department of Health and Human Services (DHHS) has promulgated standards for language access, but there are not yet regularly accepted ways to assess this. Both institutional and patient-reported measures are critical since this is one of the more actionable domains of access. New measures should be based on considerations of whether language access is available and, if so, the extent of its quality. Measures of community/public health contribution to access. The need for these measures to assess performance of the public health system and the role of communities has been discussed above. Topical areas might include comparisons of estimated incidence of disease in a community or population to actual rates of detection/reporting, measures of awareness and health information in communities, and measures of community beliefs and values. Many would argue that

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DISPARITIES IN ACCESS TO CARE 139 access at a community level to resources associated with underlying causes of disease ought to be included in a report about disparities in access. These might include levels of educational attainment, employment, housing quality, or access to supermarkets. Measures of access to specialty care and to disease management services. As chronic diseases become more prevalent and complicated to treat, access to specialty care may be necessary to achieve the best possible outcomes. Utilization measures are fraught with the problems described above. Self-reported measures can be constructed from CAMPS measures on the need to see a specialist and whether one was actually seen. However, these measures rely on the patient's understanding of whether specialist care is needed and therefore may not be ideal. As in the HIV and renal transplant examples, not knowing that care is needed is a major barrier to access. With regard to disease management, utilization of specific services common in disease management programs (for example, podiatry or physical therapy) can be examined with claims data. However, comprehensive disease management cannot. Better need-basec! measures of access to mental health and oral health care. While these measures should be applied across the lifespan, the current Youth Risk Behavior Survey offers an opportunity to apply them to adolescents. Currently, measures of depression and suicidal ideation are collected, but mental health use is not. A measure combining rates of successful and unsuccessful suicide attempts would also be useful. Better need-based measures that are both general and disease specific. The importance of such measures has been discussed above. Priority should be given to the development of need-based measures for conditions that are prevalent in minority populations and that contribute significantly to the burden of morbidity and mortality. 4-8. CHOOSING AMONG POTENTIAL MEASURES Given the need to develop new measures, measures should be selected in three groupings. First, the traditional core measures should

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140 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT continue to be used. Ultimately, new measures should fulfill the following criteria: They should represent issues that affect all populations, but that affect minority populations in an important way. For disease-specific measures, priority should be given to those conditions that were the focus of the 1998 Federal Initiative to Eliminate Racial and Ethnic Disparities in Health. They should cover the lifespan. They should capture disparities that are known to exist. They should add important information beyond core measures. There is a strong likelihood that the health of minority populations would improve if the focus of measurement were addressed. It is also possible that addressing some foci would improve health for all populations without decreasing disparities. Because the primary aim is improved health, measures should not be discarded for this reason. They are particularly important for specific populations, even if they are less salient to Whites. 7. They fill gaps in the quality framework, including the continuum of care, attributes of quality, or care over the lifespan. 8. They reflect patient-centered or community-centered aspects of access. 9. They incorporate an expanded definition of health. This is particularly important for mental health since it is an important co-morbidity for chronic diseases such as diabetes and etiologic in much care-seeking behavior. Second, new measures should be selected from priority measures that do not involve substantial development. The following identifies the measure and explains the rationale: 1. Proportion of adolescents with no visit, and their health status. Adolescents would constitute a new age group for this measure.

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DISPARITIES rN ACCESS TO CARE 141 2. Proportion of adolescents with up-to-date immunization status. Adolescents would constitute a new age group for this measure. 3. Proportion of adults with pneumococcal or influenza vaccine. Adults would constitute a new age group for this measure. In addition, these vaccinations are public health priorities. 4. Rates of colon cancer screening. This measure would extend the measurement of cancer screening to men. 5. Proportion without a blood pressure check. This measure would capture the contributions of the community as well as of the delivery system. Proportion of individuals with ESRD who require dialysis at their first presentation. This measure would capture the contributions of the community as well as of the delivery system. 7. Proportion of HIV-infected individuals who know their serostatus. This measure would reflect the contribution of the public health system. 8. Proportion of children on Medicaid who are screened for elevated lead levels. This measure would reflect the interface between the community and the health system. 9. Rates of admission for serious mental illness after first diagnosis. This measure would expand the concept of health to include mental as well as physical illness. 10. Proportion needing mental health or substance abuse treatment who did not receive it. This measure would expand the concept of health to include mental as well as physical health. 11. Proportion of diabetics who received an eye or foot exam from a health professional or who saw a nutritionist for counseling. This measure addresses health care for a major chronic disease. 12. Insurance issues such as the availability of Medicaid coverage for low income seniors, the proportion of people with insurance that covers primary/preventive care and medicines, and the proportion of people whose insurance includes co-

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142 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT payments and/or deductibles. This measure captures different dimensions of insurance coverage. 13. Racial and ethnic composition of the health care workforce. This measure captures a new dimension of access, the importance of which is explained above. discussed. 14. Literacy. This measure captures a new dimension of access, the importance of which is explained above. 15. Proportion of Medicare beneficiaries with death from a cancer diagnosis or HIV who received hospice services or home care in the last six months of life. This measure addresses end-of- life care, which is relatively neglected as an area of measurement (TOM, 200 Ic). Lastly, work should begin on new measures in all of the areas 4-9. CONCLUSION A combination of existing measures, measures that can be developed from existing data, and new measures should be included in the NHDR. When utilization measures are used as access measures, comparisons of groups with similar health needs will facilitate interpretation. Additional measures should be developed, particularly those representing the contribution of community and public health measures to access as well as those focusing on prevalent health conditions in minority populations.

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DISPARITIES IN ACCESS TO CARE 143 Reference I,ist Aday, L. A. and R. Andersen. 1974. A framework for the study of access to medical care. Health Serv Res 9 (3~:208-220. AHRQ. 1999. Reauthorization Fact Sheet, AHRQ Publication No.OO-P002. Rockville, MD: Agency for Healthcare Research and Quality. Andersen, R. and L. A. Aday. 1978. Access to medical care in the US: realized and potential. Med Care 16 (7~:533-46. Andersen, R. M., A. McCutcheon, L. A. Aday, G. Y. Chin, and R. Bell. 1983. Exploring dimensions of access to medical care. Health Serv Res 18 (1~:49-74. Asplin, B. 2002. (Health Partners). 29 April 2002. Personal communication to Nicole Lurie. Ayanian, J. Z., P. D. Cleary, J. S. Weissman, and A. M. Epstein. 1999. The effect of patients' preferences on racial differences in access to renal transplantation. N Engl J. Med 341 (22~: 1 66 1 -69. Baker, D. W., C. D. Stevens, and R. H. Brook. 1991. Patients who leave a public hospital emergency department without being seen by a physician: causes and consequences. JAMA 266 (8~: 1085-90. Bashshur, R., D. G. Smith, and R. A. Stiles. 1993. Defining underinsurance: a conceptual framework for policy and empirical analysis. Med Care Rev 50 (2~:199-218. Berk, M. and C. L. Schur. 1998. Measuring access to care: improved information for policymakers. Health Aff 17 ( 1~: 1 80-86. Billings, J. (New York University). 11 April 2002. Personal communication to Nicole Lurie. Bindman, A. B., K. Grumbach, D. Osmond, M. Komaromy, K. Vranizan, N. Lurie, J. Billings, and A. Stewart. 1995. Preventable hospitalizations and access to health care. JAMA 274 (4~:305-11. Brach, C. and I. Fraser. 2000. Can cultural competency reduce racial and ethnic health disparities? A review and conceptual model. Med Care Res Rev 57 (1~:181-217.

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