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3 Development and Availability of the Strategic Plan T he initial Strategic Plan grew out of a process that began in 1999, when a National Institutes of Health (NIH) Working Group was established to examine health disparities research. In 2000, legislation created NIH's National Center on Minority Health and Health Disparities (NCMHD). The trans- NIH Working Group on Health Disparities was co-chaired by the acting deputy director of NIH and the director of the National Institute of Allergy and Infec- tious Diseases. The Working Group included the directors and representatives of NIH Institutes and Centers (ICs) and the directors of the Office of AIDS Research, the Office of Behavioral and Social Sciences Research, the Office of Disease Prevention, and the Office of Research on Women's Health. The acting NIH director and the director of the Office of Research on Minority Health also served as ex officio members (NIH, 2000). The Working Group recommended that NIH develop a strategic plan dealing with minority health and health disparities. The group was also charged with developing that plan, which was to include individual strategic plans from ICs and Offices. The plans were developed in consultation with professional and patient advocacy groups, the public, the ICs' respective advisory councils, and the scientific community. A draft plan was published in October 2000 for technical and public review. This early version of the Strategic Plan established goals for research, research infrastructure, and public information and community outreach that are used in the 2002 and 2004 Strategic Plans (NIH, 2000). In 2000, the newly created NCMHD assumed responsibility for the Strategic Plan. By December 2001, the ICs had submitted completed plans, and in March 34

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 35 2002, NCMHD submitted the NIH Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities for 20022004 to the NIH director for review. During 2002, the ICs and Offices provided comments to NCMHD on the draft. The Strategic Plan was resubmitted to the NIH director in July 2002. In March 2003, the Strategic Plan was submitted to Congress, thus becoming offi- cial and publicly available roughly a year behind the legislation's target date (Table 3-1). From October 30, 2003, to January 5, 2004, the 2002 Strategic Plan was posted for public comment. Several sources suggested that the definition of health disparities populations be broadened to include additional groups, such as people TABLE 3-1 Strategic Plan Time Line Fiscal Year (FY) 2002 Strategic Plan September 1999 Harold Varmus establishes a working group to examine health disparities research. The working group recommends the development of a strategic plan. January 2000 Ruth Kirschstein reestablishes the Working Group on Health Disparities. It is co-chaired by Yvonne Maddox and Anthony Fauci. Members include the directors of the NIH ICs and Offices. October 6, 2000 The draft Strategic Plan is published for technical and public review. November 22, 2000 The Minority Health and Health Disparities Research and Education Act of 2000 (P.L. 106-525) creates the NCMHD. December 2001 The draft 2002 Strategic Plan is completed after submission and revision of IC plans. March 11, 2002 The 2002 Strategic Plan is submitted to the NIH Office of the Director for clearance. July 2002 The 2002 Strategic Plan is resubmitted to the Director's Office after comments have been received from the ICs and Offices. March 2003 The 2002 Strategic Plan is submitted to Congress. FY 2004 Strategic Plan November 2003January 2004 The 2002 Strategic Plan is posted for public comment on the NCMHD website. May 2004 NCMHD requests submissions from the ICs and Offices for the updated Strategic Plan. October 2004 The draft 2004 Strategic Plan is submitted to the NCMHD Advisory Council for comments. SOURCE: NIH, 2000, 2003; Ruffin, 2004.

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36 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH suffering from orphan diseases, the mentally and physically disabled, prisoners, specific racial subpopulations, and lesbian, gay, bisexual, and transgender com- munities. Other suggestions included: expanding the scope of inquiry to include access to health care and the quality of health care; improving data collection and data quality; producing an accurate definition of health disparities; developing additional programs to improve research infrastructure at minority academic in- stitutions; and developing racially and culturally sensitive outreach and public communication programs (Table 3-2). The legislation called for annual reviews and "appropriate revisions" of the Strategic Plan. The Plan itself stipulates that it "will be updated and reviewed on a yearly basis." However, as of July 2005, the Strategic Plan for 20042008-- which should have officially updated the previous Strategic Plan--had not yet been approved by NCMHD or its advisory council, nor had it been submitted to the director of NIH. Compared with the 2002 Strategic Plan, the draft of the 2004 TABLE 3-2 Public Comment Themes Theme Illustrative Example General Include among health disparities populations: lesbian, gay, bisexual, and transgender communities; Haitians; individuals suffering from orphan diseases; underrepresented Asian subpopulations; the mentally ill; men; prisoners; the handicapped Research Increase the scope of research to include cultural, psychological, behavioral, social, racial, and gender-based influences on health Study racial/ethnic disparities in access to health care Produce accurate, uniform definitions of health disparities and improve data collection and the quality of data on health disparities Research infrastructure Sponsor programs to mentor, educate, and provide grant support to minorities who pursue health career opportunities Promote partnerships between minority-serving and research- intensive institutions Support and expand community outreach efforts and community participation Broaden partnerships and leverage resources available from professional associations, health care organizations, academic institutions, and other community members that serve minority communities Identify and make available successful community-based intervention strategies Outreach and public Ensure that all communications with health disparities communication populations and their subgroups address their needs and perspectives SOURCE: Adapted from NCMHD, 2004.

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 37 Strategic Plan included significant changes in the description of research goals and objectives. The ICs' individual strategic plans had also been updated. No budget was provided. The timing and rate of production of the Strategic Plans were disappointing. There had been just two Strategic Plans in the 5-year period of the program--the first produced in the 3rd year and the second, as yet incomplete, near the end of the 5th year. Finding: NIH has not updated the Strategic Plan as intended by the legislation and the NIH. Recommendation 2: The NIH director should assure that the Strategic Plan is reviewed and revised annually using an established, trans-NIH process subject to timely review, approval, and dissemination. THE 2002 AND 2004 STRATEGIC PLANS As of March 2005, even with the preceding developmental efforts, the Com- mittee found it difficult to identify the Strategic Plan. Although the 2004 Strate- gic Plan had not yet been fully approved, it did include significant updates in the overall goals and objectives as well as updates in the ICs' individual strategic plans, which had been approved by the respective IC directors. The Committee felt that it would be more helpful, retrospectively and prospectively, to review and assess the 2004 Strategic Plan as the most recently available intended Strate- gic Plan, rather than to limit its review to the original 2002 Strategic Plan. The 2002 and 2004 Strategic Plans describe the scope of the problem of health disparities among minorities and other populations, specific objectives for research and related programs, and the means for advancing those objectives. They present a broad range of research and related activities that the NIH in- tended to undertake. Each Strategic Plan includes two volumes. The Executive Summary, goals, objectives, and budget of the NIH-wide Strategic Plan, along with other back- ground material, are included in Volume I, and the strategic plans for each NIH IC and Office involved in the program comprise Volume II (see Appendix F of this report for Volume I of the 2004 Strategic Plan). The first two sections of Volume I describe the development of the Strategic Plan and summarize the magnitude of the health disparities problem. The text emphasizes the need for a coordinated, trans-NIH approach in order to achieve the Strategic Plan's goals. For instance, the Strategic Plan identifies the need for ICs to integrate nonbiological factors in health disparities research. The text describes the overall Strategic Plan as "not merely a compilation of all the activities of the NIH entities, but an aggregation of primary areas of

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38 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH emphasis and activities conducted across the NIH." What is not described is an overall vision of health disparities, including a research strategy that addresses a timed and targeted trajectory, the research agenda's link to other government and nongovernment efforts, and a sense of NIH's priority. The Strategic Plan calls attention to the need to enhance the infrastructure and capacity for health disparities research by supporting the research infrastruc- ture of minority and minority-serving institutions that may have inadequate re- sources, increasing the number of minority researchers, and increasing the over- all number of researchers conducting health disparities research. Additionally, the Strategic Plan urges the development of new and innovative ways to reach populations coping with health disparities and their care givers, so that research findings benefit target populations. Finally, the Strategic Plan calls for the estab- lishment of interim goals and objectives with quantifiable outcomes, whenever possible. Goals and Objectives The Strategic Plan has three goal areas: (1) research; (2) research capacity; and (3) community outreach, information dissemination, and public health edu- cation (Box 3-1). These goal areas are appropriate for the broad challenges addressed by the Strategic Plan. They reflect NIH's attention to research, as well as the need to develop and support the extramural infrastructure and capacity to conduct the research. The goal areas also address the need for efficient transla- tion of information into better care for patients by informing health profession- als, patients, and communities. The 2004 Strategic Plan expands upon the 2002 Plan's objectives for each goal, as indicated by italics in Boxes 3-1 to 3-4 and shading in Table 3-3. Research The 2004 Strategic Plan research goal "to advance the understanding of the development and progression of diseases and disabilities that contribute to health disparities in racial and ethnic minority populations and other health disparity populations, including the medically underserved, by increasing and diversifying biomedical, behavioral, social science, and health services research, as well as cultural, linguistic, and social epidemiology research conducted and supported by the NIH" reflects significant changes from the 2002 Strategic Plan goal. The new goal includes wording addressing health disparity populations other than racial and ethnic minorities (with specific mention of the medically underserved) and the diversification of research to include behavioral, social science, social epide- miology, and health services research. These are important, highly appropriate additions that recognize the broad, multifactorial, and multidisciplinary issues that the Strategic Plan should include (Box 3-2).

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 39 BOX 3-1 Strategic Plan Goals, Fiscal Years 2002 and 2004 (Italic indicates new or updated text since the Fiscal Year 2002 Strategic Plan) Research (2002): To advance the understanding of the development and pro- gression of diseases and disabilities that contribute to minority health and other health disparities. Research (2004): To advance the understanding of the development and pro- gression of diseases and disabilities that contribute to health disparities in racial and ethnic minority populations and other health disparity populations, including the medically underserved, by increasing and diversifying biomedical, behavioral, social science, and health services research, as well as cultural, linguistic, and social epidemiology research conducted and supported by the NIH. Research Infrastructure (2002): To increase minority health and health disparity research training, career development, and institutional capacity. Research Capacity (2004): To increase minority health and health disparity re- search training, career development, and institutional research capacity and infra- structure. Public Information and Community Outreach (2002): To ensure that the public, health care professionals, and research communities are informed and educated concerning the latest advances in minority health and health disparities research. Community Outreach, Information Dissemination, and Public Health Educa- tion (2004): To ensure that the public, health care professionals, and research communities are informed and educated concerning the latest advances in minor- ity health and health disparities research. Consideration of Additional Research Objectives Three additional research areas warrant consideration as enhanced or addi- tional objectives: (a) social factors; (b) population research; and (c) medical care disparities. Social Factors Social factors contribute to health disparities (see Chapter 2 and Appendix D), and more attention is needed to understand the multifactorial background of health disparities. To that end, research should include the behavioral and social aspects of diseases and disabilities. The 2004 Strategic Plan research objectives include a new objective that calls for conducting such research in partnership

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40 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH TABLE 3-3 Objectives for the Fiscal Year 2004 Strategic Plan Research Objectives Research Capacity Objectives Outreach Objectives Advance understanding of Increase the number of Provide the latest the development and participants in clinical research-based progression of diseases trials from racial and information to health care and disabilities that con- ethnic minority popula- providers to enhance the tribute to health disparities tions and other health care provided to disparity populations individuals within racial Develop new or improved and ethnic minority approaches for detecting or Expand opportunities in populations and other diagnosing the onset or research training and health disparity progression of diseases career development for, populations and disabilities that con- and provide research tribute to health disparities supplements to, research Facilitate the investigators from racial incorporation of science- Develop new or improved and ethnic minority popu- based information into the approaches for preventing lations and other health curricula of medical and or delaying the onset or disparity populations allied health professions progression of diseases schools, theological and disabilities that con- Increase the number of education institutions, tribute to health disparities researchers conducting public health schools, and health disparities research Develop new or improved into continuing education approaches for treating Increase funding support activities of health diseases and disabilities for the construction and professionals that contribute to health renovation of research Maintain ongoing disparities facilities across the nation communication linkages aimed at enhancing the In partnership with other and partnerships with ability of these institutions agencies of the Depart- community-based and to conduct health dispari- ment of Health and Hu- faith-based organizations, ties research man Services, advance health care associations, understanding of the Provide increased funding foundations, and academic multifactorial causes of at institutions across the institutions, and foster health disparities, includ- country for resources, new dialogue with racial and ing nonbiological bases of equipment, and shared ethnic minority disease incidence and equipment programs for populations and other progression use in health disparities health disparity research populations, including the underserved Increase the peer review representation in peer Develop computer review of individuals from databases and Internet racial and ethnic minority resources to disseminate populations and other current information about health disparity populations scientific research and discovered and other activities regarding heath disparities

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 41 TABLE 3-3 continued Research Objectives Research Capacity Objectives Outreach Objectives Promote the development Develop targeted public of inter-institutional health education programs partnerships between focused on particular historically research- disease areas in order to intensive and historically reach those individuals minority-serving institu- within racial and ethnic tions that seek to build a minority populations and research infrastructure other health disparity populations who Improve research data experience health collection systems, and disparities within these enhance data quality disease areas regarding health dispari- ties, and develop uniform Facilitate, document, and data systems that facilitate disseminate practical strategies for the elimina- strategies responsive to tion of health disparities the health care needs, and appropriate to the cultural In collaboration with and linguistic needs, of schools and programs of communities throughout public health, state and the United States local health departments, and academic health Collaborate with public departments, support and health and other health- promote community-based oriented policy centers to participatory research translate research findings into policy documents that can be used by policy groups and other stakeholders to explain new discoveries from a policy perspective to decision makers SOURCE: Adapted from NCMHD, 2004. with other agencies within Health and Human Services. This new objective will need to be translated into more attention to interdisciplinary, transdisciplinary, and transprofessional science that will advance the understanding of health dis- parities by working across the spectrum of biological, behavioral, and social determinants. Also, research on the multifactorial nature of health disparities should be integrated as part of the first objective on "understanding the develop- ment and progression of diseases and disabilities that contribute to health dispari- ties" rather than only taking place in partnership with other agencies.

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42 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH BOX 3-2 Fiscal Year 2004 Strategic Plan Research Objectives (Italic indicates new text) Goal: To advance the understanding of the development and progression of dis- eases and disabilities that contribute to health disparities in racial and ethnic mi- nority populations and other health disparity populations, including the medically underserved, by increasing and diversifying biomedical, behavioral, social science, and health services research, as well as cultural, linguistic, and social epidemi- ology research conducted and supported by the NIH. Advance understanding of the development and progression of diseases and disabilities that contribute to health disparities Develop new or improved approaches for detecting or diagnosing the onset or progression of diseases and disabilities that contribute to health disparities Develop new or improved approaches for preventing or delaying the onset or progression of diseases and disabilities that contribute to health disparities Develop new or improved approaches for treating diseases and disabilities that contribute to health disparities In partnership with other agencies of the Department of Health and Human Ser- vices, advance the understanding of the multifactorial causes of health dispari- ties, including nonbiological bases of disease incidence and progression Population Research There is a continuing need to identify and understand the presence and extent of dissimilar health conditions in populations and groups identified as having worse health situations. Such analyses can serve as bases for recognizing re- search and interventional needs and opportunities, as well as for assessing effects of intervention. Moreover, current definitions and designations of minority and health disparity groups do not identify important subgroups with specific health disparities, such as those within the Asian American and Pacific Islander popula- tion. To plan research and to properly identify groups and their health disparities, population information for subgroups is needed. Consequently, the Strategic Plan should address this issue. Disparities in Health Care Disparities in health care associated with race, ethnicity, and socioeconomic status are pervasive and well documented (Smedley et al., 2003). A lack of access to care and poor-quality care contribute to poor health outcomes and an avoidably worse health status. Research on disparities in the quality of care includes: (a) the continued compilation of information on the scope and nature of disparate care,

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 43 with respect to the affected populations and groups as well as the settings in which it occurs; (b) contributing factors, including the possible role of bias; (c) the design and assessment of interventions, including linkages to quality initiatives; and (d) education and policy issues. Many such projects deal with medical procedures and care in clinical settings in which there are important interfaces with issues and problems of interest to, or investigated by, NIH- supported research. Although federally supported research on disparities in medi- cal care has largely been seen as within the purview of the Agency for Healthcare Research and Quality (AHRQ) and not NIH, in the area of minority health and health disparities such strict separation of research domains may result in lost opportunities to pursue particular disparity issues. Depending on the opportunity, these issues could be included as part of the research objectives and actions of ICs directed at detection, diagnosis, treatment, and prevention of specific diseases and disabilities, either independently or collaboratively with other agencies such as AHRQ and the Centers for Disease Control and Prevention. Such research should be recognized as part of the Strategic Plan's stated objectives. Finding: The Strategic Plan has placed inadequate emphasis on under- standing social and behavioral determinants of health and their interac- tion with biological factors; better understanding of the characteristics of populations affected by poor health and the characteristics of diseases and conditions for which disparities exist in those populations; the rela- tionship between population disparities in health care and differences in health status; and research opportunities regarding disparities in health care. Recommendation 3: The Strategic Plan research objectives should pro- mote more integration of research on the multifactorial nature of health disparities, including nonbiological factors; population research to fur- ther the understanding of the presence, prevalence, trends, and other elements of health disparity conditions; and when opportunity exists, an understanding of the causes of disparities in health care. Research Capacity The research capacity goal is "to increase minority health and health dis- parity research training, career development, and institutional research capacity and infrastructure." Objectives for this goal in the 2002 Strategic Plan ad- dressed several appropriate aspects of research infrastructure and capacity, in- cluding: increased representation of racial and ethnic minorities and other health disparity populations in clinical trials; support for biomedical career develop- ment of underrepresented minorities; increased minority representation in peer review; and improvement of physical research capacity to enhance the ability

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44 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH of institutions to conduct health disparities research. The 2004 Strategic Plan includes additional objectives for building research capacity. These objectives call for increasing the number of researchers conducting health disparities re- search, improving data collection related to health disparities, increasing part- nerships between research-intensive institutions and minority-serving institu- tions, and increasing community-based participatory research (Box 3-3). The Committee found the research capacity objectives to be appropriate and com- mented on the importance, potential, and early experience with certain aspects--diversity in the scientific workforce, the participation of minority subjects in clinical trials, community-based participatory research, the impor- tance of reliable data, and the need for the assessment of programs--which are explored in further detail below. Increasing the participation of underrepresented minorities in the scientific workforce is an important element of building the country's research capacity BOX 3-3 Fiscal Year 2004 Strategic Plan Research Capacity Objectives (Italic indicates new text) Goal: To increase minority health and health disparity research training, career development, and institutional research capacity and infrastructure. Increase the number of participants in clinical trials from racial and ethnic mi- nority populations and other health disparity populations Expand opportunities in research training and career development for, and provide research supplements to, research investigators from racial and ethnic minority populations and other health disparity populations Increase the number of researchers conducting health disparities research Increase funding support for the construction and renovation of research facil- ities across the nation aimed at enhancing the ability of these institutions to conduct health disparities research Provide increased funding at institutions across the country for resources, new equipment, and shared equipment programs for use in health disparities research Increase the peer review representation in peer review of individuals from ra- cial and ethnic minority populations and other health disparity populations Promote the development of inter-institutional partnerships between histori- cally research-intensive and historically minority-serving institutions that seek to build research infrastructure Improve research data collection systems, and enhance data quality regarding health disparities, and develop uniform data systems that facilitate strategies for the elimination of health disparities In collaboration with schools and programs of public health, state and local health departments, and academic health departments, support and promote community-based participatory research

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 49 600000 533,000 516,000 500000 470,000 400000 Participants 300000 of 200000 Number 100000 30.1% 23.6% 26.6% 0 2001 2002 2003 Minority Total Nonminority FIGURE 3-5 NIH total recruitment in Phase III clinical trials for Fiscal Years 2001 2003. SOURCE: Powe and Yeung, 2005. Updated using ORWH, 2005. agement and Budget (OMB) Standards. The number of minority enrollees is determined by using data from two forms. The "old" form has five race catego- ries following the OMB 1977 Standards, and the "new" form has seven race categories and Hispanic ethnicity, following the OMB 1997 Standards. All His- panics are classified as minorities on the old form, but only nonwhite Hispanics are counted as minorities on the new form. Individuals classified as two or more races are not counted as minorities, no matter which two races they report. Data collected on the new form, then, could potentially undercount the total number of minorities. The Kellogg Foundation (Kellogg Community Health Scholars Program, 2005) defines community-based participatory research as a "collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. [Community-based participatory research] begins with a research topic of importance to the community [and] has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities." Proponents of community-based par- ticipatory research see it as a way to incorporate historical and structural factors, such as poverty, discrimination, and culture, into the study of health issues in the community while drawing on partnerships among investigators, respondents, and other community members and stakeholders (Gebbie et al., 2003).

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50 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH This approach to community research could bring benefits, including the equitable participation of community members and researchers, which creates an environment of trust and knowledge sharing that traditional research struc- tures lack. Furthermore, the sense of seeking "knowledge for action" as well as "knowledge for understanding" empowers community members and fosters their investment in the research agenda by engendering stronger research and high-quality results (Israel et al., 1998; O'Fallon and Dearry, 2002). Moreover, this research potentially yields results relevant to the interests, circumstances, and needs of the involved communities that apply them, results that are more immediately actionable in local situations for patients and/or practitioners, and findings that are more credible to practitioners and policy makers elsewhere because they were generated in partnership with people like themselves (Aungst et al., 2003). Conducting community-based participatory research is challenging. Signifi- cant groundwork (outreach, education, identification of partners, development of infrastructure) needs to be done before communities are ready to participate in these projects. Because research funding is typically provided for individual studies rather than for building community capacity, sustainability is a major factor in the success of these projects. Concerns about sustainability can under- mine initial partnership efforts. In this respect, NCMHD support for building the infrastructure for community-based research is particularly important. In another challenge, community-based participatory research takes more time than tradi- tional research--sometimes frustrating both community members and investiga- tors anticipating results. Also, lack of trust or mutual respect can undermine the principles of the research, while funding conflicts may weaken relationships. The research's scientific rigor may be questioned and the research design may com- plicate data analysis, resulting in further challenges that can negatively affect investigators' careers. According to some (Holkup et al., 2004; Lantz et al., 2001), however, community-based participatory research can be productive when solutions for facilitating the process are implemented. At NIH, 17 of 26 ICs queried indicated that in general they had supported community-based participatory research projects (Powe and Yeung, 2005), though a review of the ICs' strategic plans revealed that only 6 ICs and Offices had included community-based participatory health disparities research projects in their strategic plans. There is an unmet need for valid and reliable data on health disparities to (a) identify and survey disparities and (b) explore and explain disparities (Fremont and Lurie, 2004). The inadequacy of current data, discussed in Chapter 2 as a concern for the NIH research program, ranges from basic information, such as annual race/ethnicity-specific measures of health status, to more detailed items, such as geocoded individual-level health status and sociodemographic data sets. In Healthy People 2010, for example, which lists diseases and conditions for

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 51 which racial disparities might exist, baseline race/ethnicity-specific measures were missing for some race and ethnicity groups for many of the disorders on the list. Moreover, further surveillance data were not available for all race and ethnic groups (Ver Ploeg and Perrin, 2004). Lacking appropriately collected and coded data, researchers may be unable to link individual-level health survey data to structural data that describe the social, economic, and political environments that might be factors in particular health outcomes--a linkage that is particularly important in the investigation of health disparities. Additional problems include a lack of standardization in ethnic and racial categories, inaccuracy in the reporting of racial statistics, and sample sizes that are too small to allow statistically meaningful comparisons (Ver Ploeg and Perrin, 2004). It is difficult to get information on the effects of the various research infrastructure and capacity programs supported by NIH. Given the impor- tance of these programs, information on program outcomes and impacts is needed for assessments of the programs' effectiveness. Information should be continu- ously gathered and analyzed for those programs included in the Strategic Plan's objectives, such as programs directed at minorities to address research training and career development, and those aimed at increasing the number of researchers conducting health disparities research. For these programs, it would be particu- larly useful to know what works, which training environments are most success- ful, and which factors facilitate or limit career success (Committee on National Needs for Biomedical and Behavioral Scientists, 2000; George et al., 2001). Also, the Strategic Plan should include assessments of programs that sup- port: the construction and renovation of research facilities aimed at enhancing the ability of institutions to conduct health disparities research; the provision of equipment and shared equipment programs for use in health disparities research; the promotion of inter-institutional partnerships between historically research- intensive and historically minority-serving institutions; and the improvement of data collection and attempts to develop uniform data systems. Although the Of- fice on Research in Women's Health regularly compiles and reports data on minorities enrolled in clinical research studies, analysis and assessment of these data is needed with respect to the minority health and health disparities program and the Strategic Plan. A recent National Academies report on minority training programs at NIH raised similar concerns regarding the need for information and assessment (Com- mittee for the Assessment of NIH Minority Research Training Programs, 2005). That report recommended that a set of clear and measurable training objectives, specific to minority training, be set forth; that NIH commit to the continued funding of these programs; and that appropriate guidelines and measures for evaluating these programs be established.

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52 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH Findings: The Strategic Plan does not provide for assessments of the results of the research capacity and infrastructure programs included as objectives. Such information is needed to evaluate the effectiveness of these programs, identify approaches in need of modification, set priorities, and make evaluations available for internal and exter- nal reviews. The inclusion of community-based participatory research as an objective of the Strategic Plan is appropriate. There is a need for development of metrics, analysis, assessment and evaluation of community-based participatory research for a better sense of the issues and settings for which it is most promising. Recommendation 4: The Strategic Plan should include measurable tar- gets and time periods for the research capacity objectives. NIH, through NCMHD's oversight, should develop methods of measuring, analyzing and monitoring the results of programs that address research capacity, including workforce, institutional, infrastructure, and community-based participatory health disparity research objectives. Community Outreach, Information Dissemination, and Public Health Education In the Strategic Plan, the community outreach, information dissemination, and public health education goal is "to ensure [that] the public, health-care pro- fessionals, and research communities are informed and educated concerning the latest advances in minority health and health disparities research." The communi- cation goal encourages efforts that "extend beyond dissemination of the results of research to other scientists and include the transmission of all information that may improve the health of racial and ethnic minorities and other health disparity populations to the general public, patients, advocacy groups, health-care provid- ers, media, and policy makers." The Strategic Plan proposes "a comprehensive and aggressive outreach to those groups whom the research is intended to help and their health-care providers. These messages must be tailored to the communi- ties at highest risk for the adverse consequences of the health disparity in ques- tion. The efforts must also include producing health information that is culturally applicable, ensuring that it is disseminated to the appropriate communities, and assessing the effectiveness of these communication efforts." Several new objectives in the 2004 Strategic Plan call for the dissemination of practical strategies related to health disparities and collaborations to translate research findings into policy documents. In addition, the 2002 Strategic Plan's objective for communication and dialogue was expanded to include several types of community organizations--community-based and faith-based organizations,

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 53 BOX 3-4 Fiscal Year 2004 Strategic Plan Community Outreach, Information Dissemination, and Public Health Education Objectives (Italic indicates new text) Goal: To ensure that the public, health-care professionals, and research commu- nities are informed and educated concerning the latest advances in minority health and health disparities research. Provide the latest research-based information to health-care providers to en- hance the care provided to individuals within racial and ethnic minority popula- tions and other health disparity populations Facilitate the incorporation of science-based information into the curricula of medical and allied health professions schools, theological education institu- tions, public health schools, and into the continuing education activities of health professionals Maintain ongoing communication linkages and partnerships with community- based and faith-based organizations, health-care associations, foundations, and academic institutions and foster dialogue with racial and ethnic minority populations and other health disparity populations, including the underserved Develop computer databases and Internet resources to disseminate current information about scientific research and discoveries and other activities re- garding heath disparities Develop targeted public health education programs focused on particular dis- ease areas in order to reach those individuals within racial and ethnic minority populations and other health disparity populations who experience health dis- parities within these disease areas Facilitate, document, and disseminate practical strategies responsive to the health-care needs, and appropriate to the cultural and linguistic needs, of com- munities throughout the United States Collaborate with public health and other health-oriented policy centers to trans- late research findings into policy documents that can be used by policy groups and other stakeholders to explain new discoveries from a policy perspective to decision makers health care associations, foundations, and academic institutions--in addition to population groups that experience health disparities. These are relevant and sig- nificant additions to the Strategic Plan (Box 3-4). Translating research information with clinical implications and derived best practices to the direct care of patients poses a serious challenge (Lenfant, 2003; Sehgal, 2003). The important recognition that disparities in communication may play a role in health disparities prompts concern for a more organized and con- certed effort in this area (see Viswanath, Appendix G). Like health disparities, communication disparities are complex. The Strategic Plan addresses two major

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54 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH areas: (a) the dissemination of research-derived information to practitioners and institutions providing care to those affected by disparities in health, including public hospitals and community health centers, and (b) the provision of informa- tion to people and communities. For communication with providers of care, problems include sponsor incentives and commitment, the origin and nature of the information, the appropriate patient care and educational settings in which the information should be disseminated, and the lack of organized approaches. For NIH, approaches should include increased sensitivity to these challenges, the promotion of effective information systems, the assessment of existing models, the involvement of audiences in the design and assessment of what is needed and effective, and the promotion of research on such communication (Viswanath, Appendix G). As more reliable and effective methods are sought, opportunities to design, implement, assess, and improve the particularly demanding and impor- tant problems of translating minority health and health disparities information will be developed for the benefit of communication programs other than those focused on minority health and health disparities research. An even greater challenge is disseminating information to the public. As Viswanath (Appendix G) points out, there are three problem areas, all varying with race, ethnicity, culture, and other group characteristics: (a) access to information, including such factors as the availability of information, differences in media chan- nels, and the affordability of access (including problems related to the digital di- vide); (b) the attention to and processing of information; and (c) the ability and capacity of individuals and groups to use the information as it relates to such factors as language, health literacy, and culture as well as the environment and the avail- ability of opportunities. These problems create inequities in communication of health information which may contribute to health status inequities. Outreach and communication are so challenging and important that these issues warrant particular attention as a further organized, concerted trans-NIH effort within the Strategic Plan--well beyond that described in the sporadic ob- jective areas of individual IC strategic plans. Such a core effort could be informed and assisted by communication scholars, as well as by representatives from the audiences being served. Finding: The current objectives for outreach and public information identify target audiences, but attention is needed to issues of inequali- ties in public communication, including those related to access and use of, and ability to act on, information. Additional understanding is needed regarding effective communication with those who provide care to groups with poor health. Coordination of communication programs across NIH could help with examination of specific audience needs and evaluations of programs.

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 55 Recommendation 5: The Strategic Plan's communication programs should be organized as a specific trans-NIH effort with centralized coordination with particular attention to the strategic planning, de- sign, prioritization, implementation, and evaluation of efforts across NIH. The initiative should: be informed by advisory expertise; develop a surveillance system to identify information needs and availability, sources, behaviors, and use patterns; and promote attention to the issue of inequalities in health communication. THE STRATEGIC PLANS OF THE ICS The Strategic Plan's goals and objectives cannot be achieved unless they are translated into objectives and actions by the ICs. Twenty-five ICs, the Office of AIDS Research, and the Office of Behavioral and Social Sciences Research are part of the 2002 and 2004 Strategic Plans. The ICs and Offices used various methods to identify objectives and programs for their individual strategic plans within the overall framework of the Strategic Plan goals and objectives. This resulted in a variety of objectives, reflected in initiatives that address a broad range of diseases, disabilities, and strategies. The Committee reviewed the plans outlined by the ICs in Volume II of the 2002 and 2004 Strategic Plans. In addition, it commissioned a survey of the ICs to review their experience in addressing and implementing the Strategic Plan. The survey included achievements, barriers encountered, and recommendations for improving the process. Patterns of similarity to, and difference from, the overall Strategic Plan were noted. Some objectives from the overall Strategic Plan appear prominently in the ICs' objectives and planned actions. For example, in the research area, the most frequent IC objectives are those focused on advancing the understanding of the development and progression of diseases and disabilities that contribute to health disparities. In the area of research capacity, the ICs have numerous planned actions, including minority-targeted and untargeted awards, programs for stu- dents ranging in age from elementary school to professional school, and collabo- ration with minority-serving institutions. In communication, the numerous planned actions also vary in content, target audience, and methods for dissemi- nating information. Outreach messages range from disease and coping informa- tion to behavior recommendations and treatment options (Powe and Yeung, 2005). The ICs' plans infrequently mention some Strategic Plan objectives, includ- ing those addressing data collection systems and community-based research. Similarly, outreach objectives dealing with the provision of information directed at professional school curricula, the use of computer databases, and involvement in policy development were not widely adopted. In addition, the ICs' plans give little attention to the provision of information to health care providers, despite

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56 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH widespread awareness of the need for rapid and effective translation of research findings into the direct care of patients. Even some research objectives consid- ered relevant to the domains of many ICs are unclearly identified as objectives or intended activities in their strategic plans--for example, those addressing the detection, prevention, or understanding of multifactorial causes of disparities in health. Gaps between the overall objectives of the Strategic Plan and those of the ICs for which the objectives are relevant predict a lack of significant activity and achievement in these areas. It is noted that some ICs have planned activities in epidemiology and col- laboration with, or involvement in, research on disparities in health care, areas that are relevant but were not included in the overall objectives of the Strategic Plan. This report recommends that they be included (see Recommendation 3). The draft 2004 Strategic Plan included individual strategic plans for each IC, but there was no evidence that these plans were developed as part of a coordinated trans-NIH plan. Hence, it is unclear whether the 2004 Strategic Plan's revised objectives guided the ICs' updated plans. Because it lacks a budget, the draft 2004 Strategic Plan's value as a planning and management tool is diminished. The Committee was most concerned about the need to coordinate the ICs' strategic plans as part of a truly concerted trans-NIH plan. The ICs' individual strategic plans are the ultimate implementation of the NIH Strategic Plan, and so they should appropriately reflect the Strategic Plan's overall goals and objectives. This requires a central, coordinated assessment of the ICs' strategic plans, con- sidering both the relevance to the purview of the ICs and NIH-wide and IC program priorities. Such a review should be a documented part of updating and revising the IC strategic plans to ensure they are complete and relevant. In addi- tion, ongoing review and monitoring of the overall Strategic Plan should include assessments of whether, and to what extent, the ICs' objectives and activities have been carried out, as well as any results. Such information, including central analysis and evaluation by NCMHD, should be part of an effective annual report- ing system. At the time of review by the Committee, just one approved annual report (2001) was available. Finding: There is no evidence that the Strategic Plans of the ICs were developed as part of a concerted, trans-NIH strategic planning process. Planned IC activities are not time-based or targeted. Recommendation 6: The development of updated Strategic Plans should include assess- ments of the appropriateness of the individual strategic plans of the ICs, including whether they adequately reflect the overall goals and objectives of the NIH Strategic Plan.

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 57 Objectives should be time-based and targeted with measurable outcomes. HEALTH DISPARITIES AS DEFINED BY THE STRATEGIC PLAN As discussed in Chapter 2, the term "health disparities" may connote inequi- table or unjust differences in health, but the term also has been increasingly used over the past several years to describe differences in health without necessarily implying the presence of injustice. Thus, "health disparities" is used in the enabling legislation establishing the NCMHD, in NIH definitions, and by the Strategic Plan. Also, as noted in Chapter 2, complete agreement does not exist on the best or most valid way to identify disparity groups (Carter-Pokras and Banquet, 2002; Weitz et al., 2001). The Strategic Plan defines health disparities in terms of the disproportionate burden of illness and disease experienced by racial and ethnic groups, resulting from the interaction of biological factors, the environment, and specific health behaviors. As primary causes of health disparities, it identifies factors that have been widely discussed--i.e., socioeconomic status, education, biological factors, access and quality of health care, racial and ethnic discrimina- tion, and cultural issues. For reporting purposes, the 2004 Strategic Plan used the methodological guidelines developed by the NIH Committee on Minority Health and Health Disparities Research Definitions and Application Methodology, effective Janu- ary 2004 (see Chapter 4 and Appendix H). When finalized, the budget of the 2004 Strategic Plan will also use these guidelines, which were an important advance in NIH's use of established criteria to define groups experiencing health disparities and track related expenditures. Prior to this guidance, NIH had neither uniform definitions of health disparity groups nor a system for tracking expenditures that were specifically directed at health disparities. The 1999 IOM report, The Un- equal Burden of Cancer, recommended that NIH "improve the accuracy of its assessment of research that is relevant to ethnic minority and medically under- served groups by replacing the current `percent relevancy' accounting method with one that identifies studies whose purpose is to address a priori research questions uniquely affecting ethnic minority and medically underserved groups." The NIH Committee was convened in response to language in P.L. 106-525 that called for a report recommending a methodology to "determine the extent of the resources of the National Institutes of Health that are dedicated to minority health disparities research and other health disparities research." The method- ological guidelines in the Committee's report established operational definitions of minority health and health disparities research, provided a methodology for applying these definitions, contained criteria for identifying minority health and

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58 EXAMINING THE HEALTH DISPARITIES RESEARCH PLAN OF THE NIH health disparity groups and diseases, and served as the foundation for identifying, coding, tracking, and reporting NIH activities and resources. In accordance with the methodological guidelines, the 2004 Strategic Plan defined health disparity populations as comprising those minority groups delin- eated within Section 1707(g) of the Public Health Service Act, in addition to low socioeconomic status populations and rural populations.2 In addition to racial and ethnic minorities, low socioeconomic status groups, and rural populations, other groups may warrant such a designation--including, for example, the uninsured, the urban underserved, certain immigrant groups, or those for whom language is a barrier. It is thus expected, as described by the enabling legislation, that NCMHD, in consultation with AHRQ, will designate additional groups. As such, the development of more specific criteria, presum- ably by a process established by NCMHD, will be needed. As processes are developed, it should be recognized that identifying multiple disparity groups may cause efforts to reduce and eliminate disparities to become fragmented, duplicative, or even zero sum (i.e., one disparity group competing with another for scarce resources). It has been argued (see Adler, Appendix D) that the strategy of identifying multiple disparity populations may ultimately be less fruitful than a strategy focused on identifying and intervening in disparity processes. For example, low socioeconomic status is not a homogeneous dispar- ity group or population. Rather, low socioeconomic status is a description of the end result of a social stratification process in which some individuals end up with less access to opportunities, such as quality schooling, adequate income, or safe jobs. In addition to continued attention to the definition of health disparities, there is a need for a registry or clearinghouse of health disparity diseases and condi- tions, including regularly updated information on the prevalence of diseases and conditions and the populations affected. Such a registry would help with evalua- tion of the appropriateness and adequacy of the targets and activities of the overall Strategic Plan and those of specific ICs, and provide guidance for plan- ning, priority setting, and policy decisions for the NIH and others. This registry would also provide key information to those involved or interested in health disparities research, which could track prevalence and trends across multiple indicators, health outcomes, and population subgroups. Among other functions, the registry would also help to prioritize research and interventions aimed at eliminating disparities. In addition, a registry would facilitate collaboration and allow the needs of subpopulations to be identified. 2Section 1707(g) defines minority groups as American Indians (including Alaska Natives, Eski- mos, and Aleuts), Asian Americans, Native Hawaiians and other Pacific Islanders, Blacks, and Hispanics, where Hispanic means individuals whose origin is Mexican, Puerto Rican, Cuban, Central or South American, or any other Spanish-speaking country.

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DEVELOPMENT AND AVAILABILITY OF THE STRATEGIC PLAN 59 Findings: Beyond the basic definitions of health disparities indicated by Con- gress and used by NIH, there are no further criteria for deciding what constitutes a health disparity group. Understanding the health impacts of social stratification (e.g., in the education system or the labor market) presents an additional approach to health disparities research. There is need for a resource that provides updated listings of: dis- eases and conditions for which differences exist; affected popula- tions; prevalence data; and other information that would provide a knowledge base on the scope and impact of disparity conditions. This resource would help in planning health disparity studies, set- ting priorities, and assessing research activities. Recommendation 7: NCMHD should consider the designation of addi- tional health disparity groups based on an informed process and devel- oped criteria. It should promote development of, and access to, a regis- try of diseases and conditions for which disparities exist with regard to race, ethnicity, socioeconomic status, geographic locale, and other desig- nated health disparity populations.