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1 Introduction I n the United States, health varies considerably. Racial and ethnic minorities, poor people, and other groups experience worse health in a variety of circum- stances. Called health disparities, these differences are reflected by indices such as excess mortality and morbidity and shorter life expectancy. Beyond the statistics, the suffering, disability, and death among large and growing segments of the population tear at the nation's conscience. National concern over health disparities has been expressed for several de- cades. Examples include the 1979 U.S. Department of Health, Education, and Welfare report, The Health Status of Minorities and Low-Income Groups (Health Resources Administration, 1979); the 1979 Healthy People report (U.S. Public Health Administration, 1979); the 1986 Report of the Secretary's Task Force on Black and Minority Health (U.S. DHHS, 1985); the Healthy People 2000 report (U.S. DHHS, 1991), which listed the reduction of health disparities as one of three goals; and the Healthy People 2010 report (U.S. DHHS, 2000), which had the elimination of health disparities as one of its two goals. The causes of disparities in health status are complicated and only partly understood. Research is a fundamental aspect of the national strategy to under- stand, reduce, and eliminate disparities in health status. The research is complex, involving a broad range of biomedical, social, economic, and behavioral issues. The scope of the research extends across research domains and medical special- ties. Widespread in the general population, the relevant diseases and conditions occur with increased prevalence or severity, or have worse outcomes, in minori- ties, those with low income, and certain other groups, such as some rural popula- tions (Eberhardt and Pamuk, 2004; Hartley, 2004). The biomedical aspects range from molecular, genetic, and pathophysiological factors to aspects of diagnosis, 15

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16 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH detection, progression, treatment, and prevention. Also, there is need to under- stand the overarching social, economic, educational, behavioral, and environ- mental factors that predispose groups to specific diseases and conditions. Finally, along with the changing knowledge base, there is the need for rapid and effective translation of existing and new information into best care practices. This entails communicating this information to affected populations and communities, their health care providers, individuals within educational settings, and those involved with health care policy. These challenges require the understanding, design, de- velopment, and assessment of specific intervention programs. The National Institutes of Health (NIH) plays the nation's leading role in minority health and health disparities research. NIH has conducted extensive research related to minority health and health disparities for some time. An NIH Office of Minority Health Research was established in 1990. More recently, NIH declared health disparities to be third among its top five priorities (Morton, 2005; Zerhouni, 2004). NIH's vision of newer approaches to health research involves planning for and conducting health disparities research, with an empha- sis on cross-disciplinary team research efforts and a focus on the predominance of chronic diseases (Zerhouni, 2005a, b). Disparities in health care are separate from, but often contribute to, health status disparities (Smedley et al., 2003). These inequities in the quality of medi- cal care are also independently and specifically related to race, ethnicity, and socioeconomic status. Excess morbidity, mortality, and disability are likely con- sequences of disparities in health care and undoubtedly contribute to the poorer health among affected groups. Inequities in standards of care related to group characteristics and circumstances raise issues of injustice. An extensive and growing research effort is directed toward disparate health care. This research includes many issues related to the investigation of differences in health states that call for effective collaboration among NIH, private research entities, and other government agencies, such as the Agency for Healthcare Re- search and Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), the Office of the Secretary of Health and Human Services (HHS), the Office of Rural Health Policy in the Health Resources and Services Administration, and perhaps other government departments such as Education and Justice. HHS is addressing the need for coordinated government efforts. Similarly, NIH should seek overlapping, collaborative research opportunities. Although much national research in health disparities is under way, there has been concern for assurance that the NIH research program is effectively marshaled. CONGRESSIONAL LEGISLATION: THE MINORITY HEALTH AND HEALTH DISPARITIES RESEARCH AND EDUCATION ACT OF 2000 In 2000, Congress enacted Title I of Public Law 106-525, The Minority Health and Health Disparities Research and Education Act of 2000 (Appendix A). This

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INTRODUCTION 17 legislation delineated the role of the NIH in improving minority health and reduc- ing health disparities by calling for the establishment of the National Center on Minority Health and Health Disparities (NCMHD) and by detailing many other NIH-related responsibilities and activities. NCMHD's stated purpose is "the conduct and support of research, training, dissemination of information, and other programs with respect to minority health conditions and other populations with health disparities." The legislation used the definition of minorities that was used in previous legislation--specifically, that found in Section 1707(g) of the Public Health Service Act--as follows: (1) The term "racial and ethnic minority group" means American Indians (including Alaska Natives, Eskimos, and Aleuts), Asian Americans, Native Ha- waiians and other Pacific Islanders, Blacks, and Hispanics. (2) The term "Hispanic" means individuals whose origin is Mexican, Puerto Rican, Cuban, Central or South American, or any other Spanish-speaking country. The director of the newly established NCMHD was given the responsibility to determine which health disparity populations were to be added to existing groups--which include minorities, individuals with low socioeconomic status, and those living in rural areas--to comprise the overall focus group for health disparities research. In addition, the legislation called for the NCMHD director to be responsible for coordinating all minority health research and other health disparity research conducted or supported by NIH. To further the initiative, a comprehensive plan and budget for NIH's minor- ity health and health disparities research program was to be developed by the NIH director, the NCMHD director, and the directors of the NIH's Institutes and Centers (ICs). The Strategic Plan, to be developed no later than 12 months after November 22, 2000, the date of enactment of the legislation, was to include objectives and priorities. Moreover, the directors of NIH, NCMHD, and the ICs were to: (a) promote coordination and collaboration among the ICs; (b) ensure that priority is given to conducting and supporting minority health disparities research with regard to the expenditure of funds appropriated for NCMHD activi- ties; (c) ensure that the amounts appropriated are expended in accordance with the plan and budget; and (d) review the plan and budget no less than annually, revising both as appropriate. The legislation called for authorization of the NCMHD director to grant research endowments to Centers of Excellence (as defined under Section 736 of the Public Health Service Act (42 U.S.C. 293)) and to assist the director of NIH's Center for Research Resources in committing resources for construction at Insti- tutions of Emerging Excellence. In addition, the NCMHD director was to estab- lish loan repayment programs for health professionals who agreed to engage in minority health disparities research.

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18 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH The NCMHD director was to prepare an annual report on NCMHD activities that was to include the progress made in NIH health disparities research, a sum- mary and analysis of expenditures made for NIH health disparities research ac- tivities, a separate statement on minority health/health disparities research, and appropriate recommendations from the director. Following enactment of the legislation, NCMHD was created and undertook responsibilities for the Centers of Excellence Program, the Loan Repayment Program, and the Endowment Program, as well as for the NIH-wide minority health and health disparities research program and the Strategic Plan. The NIH Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities was produced in 2003. CHARGE TO THE COMMITTEE In 2004, the 4th year of the NIH Minority Health and Health Disparities Research legislation, NCMHD asked the Institute of Medicine to: Assess the adequacy of the trans-NIH minority health and health dispari- ties Strategic Plan in achieving the NIH's goals and objectives. Specifically, the Committee was to evaluate the Strategic Plan with respect to: Research (e.g., How well does the Strategic Plan advance scientific understanding of the causes and means to reduce and ultimately eliminate the disproportionate burden of disease among health disparity groups?), Research Infrastructure (e.g., Does the Strategic Plan adequately ex- pand opportunities and the institutional capacity--such as the environment, leadership, and commitment to health disparities research--for research on health disparities?), Public Information and Community Outreach (e.g., How adequately does the plan address needs for the dissemination and application of research findings to reduce and ultimately eliminate health disparities?); Assess the adequacy of coordination across NIH ICs in helping to develop and carry out the Strategic Plan and avoid duplication of administrative resources among ICs and divisions; and Identify means, including potential legislative modifications, to help NIH achieve its minority health and health disparity Strategic Plan objectives. The Committee viewed the charge as including a review and analysis of the Strategic Plan budget. In its approach, the Committee analyzed the adequacy of the Strategic Plan as a document and plan of action, including in this review the individual strategic plans of the ICs. The Committee recognized that the ad- equacy of the Strategic Plan, and the potential for its success, depend on the meaningful inclusion of the overall NIH goals and objectives in the individual plans and actions of the ICs. The Strategic Plan's success also depends on the

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INTRODUCTION 19 trans-NIH organizational setting and means of coordinated development, imple- mentation, and monitoring. To assess the Strategic Plan's feasibility and to rec- ommend improvements, the Committee considered early experiences with imple- menting and coordinating the program to be important. COMMITTEE PROCESS The Committee was given less than a year to complete its task--a time constraint that necessarily shaped its approach to information and data collection. The Committee held five 2.5-day meetings during the 10 months between Octo- ber 2004 and July 2005. In open, public sessions (see Appendix B), the panel heard presentations from and held discussions with six ICs with considerable responsibility for and activity in health disparities research, including the Na- tional Cancer Institute; NCMHD; National Heart, Lung, and Blood Institute; National Institute of Allergy and Infectious Diseases; National Institute of Child Health and Human Development; and National Institute of Diabetes and Diges- tive and Kidney Diseases. Two Offices from the Office of the Director involved in or with responsibility for coordinating trans-NIH programs--the Office of AIDS Research and the Office of Research on Women's Health--were also part of discussions. During open sessions, the panel also heard from and held discus- sions with: the NIH director; the NCMHD director; members of NCMHD's National Advisory Council; AHRQ's Director of the Office of Extramural Re- search, Education, and Priority Populations; HHS's Acting Deputy Assistant Secretary for Minority Health; CDC's Director of the Office of Minority Health; representatives of several organizations concerned with health disparities; and concerned individuals. In addition, numerous organizations provided written com- mentary (see Appendix C). The Committee reviewed the contents of the NIH Strategic Plan and the individual strategic plans of the 25 participating ICs and 2 Offices. The Commit- tee conducted a commissioned survey of all 27 ICs, the Office of AIDS Research, and the Office of Research on Women's Health to compile information on the implementation of, experience with, and recommendations for the Strategic Plan. Included were inquiries about research funding distributions, training grants, the recruitment of minority research subjects, the career development of investiga- tors studying minority and health disparity groups,1 public communication activi- ties and products, and perceived barriers to implementation. Background papers were commissioned on aspects of health disparities, research infrastructure, and outreach and communication. Through these information sources and a literature review, the Committee developed recommendations that address the charge. The report does not assess 1"Health disparity groups," an awkward term, is used in this report because it is the terminology used in the Strategic Plan.

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20 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH the extent to which NIH met the research objectives stated in the Strategic Plan. Such an assessment was not included in the charge to the Committee and would have required considerably more time than the Committee was given. Further- more, the report does not tell NIH how to conduct its work by making sugges- tions about decisions or program directions. Rather, it responds to the broad areas of concern outlined in the charge. ORGANIZATION OF THE REPORT The report continues in Chapter 2 with a review of health disparities and the complexity of the problem with respect to definitions, measurement, and under- standing. In Chapter 3, the NIH Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities is described and examined, includ- ing the overall NIH plan and those of the 27 ICs and the 2 Offices within the NIH Office of the Director. The development, and updates, of the Strategic Plan are examined, along with the appropriateness and promise of their content. Chapter 4 reviews the Strategic Plan's budget and financial aspects, which can be used as monitoring indexes of the Plan's commitments and activities. Budget analysis also lends insight into the influence of the resource setting on the Plan's feasibil- ity. In Chapter 5, NCMHD is reviewed as a keystone center and coordinator of the Strategic Plan and the health disparities research effort. Chapter 6 reviews experiences with the coordination, monitoring, and management of the Strategic Plan and its health disparities program after 4 years, with the intent to examine the organizational setting in which the Plan is developed and implemented, par- ticularly with respect to trans-NIH coordination.