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Challenges and Successes in Reducing Health Disparities: Workshop Summary (2008)

Chapter:Appendix D: Community Approaches to Addressing Health Disparities

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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Suggested Citation:"Appendix D: Community Approaches to Addressing Health Disparities." Institute of Medicine. 2008. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/12154.
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Appendix D Community Approaches to Addressing Health Disparities Carol Horowitz, M.D., M.P.H. Edward F. Lawlor, Ph.D. INTRODUCTION A major national enterprise has grown up since the Institute of Medi- cine (IOM) report devoted to documenting health disparities; understand- ing their clinical, service, and social determinants; and mounting specific projects that address particular combinations of health status and racial and ethnic populations. This work has given extraordinary visibility to the exis- tence of significant and stubborn disparities and mobilized an impressive number of university centers, provider groups, and community partners. Significant federal and private foundation funding has mapped onto this agenda. A great deal of innovation and adaptation has been spawned in this field, most notably the establishment and federal support for a broad body of community-based participatory research. Important state policy initiatives, such as the recently enacted Massachusetts Health Reform, have specific governance and accountability for disparities reductions. Despite the number and variety of health disparities initiatives, there is growing restlessness that this enterprise is not yielding effective and scal- able approaches and, most importantly, evidence of significant outcomes (Lurie and Fremont, 2006). For example, the Centers for Disease Control and Prevention’s (CDC’s) recent interim report on Healthy People 2010 worried that among the 195 disparities objectives there has only been   AssistantProfessor, Departments of Health Policy and Medicine, Mount Sinai School of Medicine. 2Dean and the William E. Gordon Professor, George Warren Brown School of Social Work, Washington University in St. Louis. 161

162 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES measurable improvements in 24 categories, declines in 14, and no change in 157 (CDC, 2007). A number of concerns underlie this restlessness: • Many initiatives do not embody the kind of community voice, sup- port, and participation that is necessary for sustainable long-term results. • Many initiatives are divorced from other significant community- development strategies that have the potential to influence the known determinants of health disparities (e.g., housing, safety, education, and civic engagement). • Many initiatives are not built on a platform of governance, man- agement, and adequate stable financing that assures a continuity of response from prevention, to early detection, to treatment, and to evaluation. In simple terms, these initiatives have developed along two different paths. One broad approach to disparity reduction involves essential clinical services and interventions, generally developed by health status or diag- nostic categories and supported by categorically clinical funding streams. Thus, a huge number of specific health disparities programs have emerged to address asthma, diabetes, breast and cervical cancers, cardiovascular disease, and other conditions. These programs have the advantage of being targeted to known disparities, can be tailored to provider and community resources, and have the potential to pursue evidence-based strategies. Often these programs are mounted by academic medical centers, health systems, or other provider organizations. At the other end of the spectrum, an alternative set of community programs and policies proceed instead to address the socioeconomic “ ­ fundamentals” of community development and health. These initiatives, generally not on the radar of disparities researchers, are designed to enhance the strengths and assets that already exist in communities; to increase human, physical, and social capital; and to navigate complex processes of economic change (such as gentrification) in communities. These programs fall under the rubric of community building, community economic develop- ment, comprehensive community collaborations, and others in the so-called community-development field. Examples include the Local Initiative Sup- port Corporation (LISC) and Community Builders. For our purposes, however, many of these community-development approaches have significant health aspirations (sometimes explicit and sometimes implicit), often command huge investments and resources, as well as involve the same institutions—churches, schools, hospitals—and community leaders as community-based disparities programs. There is

APPENDIX D 163 much to be learned about the overall impacts of these approaches, as well as their specific health consequences. The thesis of this review for the IOM is that the “action” in community approaches to addressing health disparities lies in better understanding, design, and implementation of “hybrid” approaches to community develop- ment and health disparities. We define hybrid approaches as those derived from a combination of clinical, community, and other heterogeneous sources such as public health and policy. The best of these approaches have the vir- tue of empowering and mobilizing community resources and residents, but at the same time implementing systematic, sustainable, and clinically sound approaches to health behavior, screening, prevention and promotion, and treatment. Admittedly, the knowledge base for this assertion is thin; in fact, we believe one of the key frontiers in this field lies in creating an evidence- based approach, yielding results for community development that build off of the knowledge base about both community and health disparities that is more purposeful about evaluation and accomplishes better sharing and translation of information across disciplines and stakeholders. DISPARITIES IN A COMMUNITY CONTEXT Although many concepts and constructs of community abound, this paper treats communities as largely geographical or spatial units, though only as the best proxy for capturing a set of social relations and social institutions. This means that we are largely concerned with so-called place-based approaches to health disparities and aligned with the literature on neighborhood or area effects on health (Diez Roux, 2001; Sampson, 2003). A large literature focused on the role of socioeconomic and com- munity factors in health outcomes has grown up in social science, public health, and the field of community organization and development. The backdrop to this literature on community effects is an even larger literature on the socioeconomic determinants of racial and ethnic health dispari- ties. The pathways by which socioeconomic position and resources affect health status are well understood in concept, but more difficult to attribute empirically. Education, for example, provides opportunities for certain occupational pathways, which in turn produce different income streams, occupational exposure to health hazards, wherewithal to engage in posi- tive health behaviors, and access to communities and social networks that are believed to reinforce health behaviors. Perceptions of racial discrimi- nation, for example, have been linked across a large body of studies to   For a complete discussion and review of different concepts of community see Robert Chaskin (1997).

164 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES health behavior, physical health, and mental health, although the precise mechanisms for how discrimination translates into physical or behavioral outcomes via stress or other pathways is less well established empirically (Williams et al., 2003). The state of the evidence about these socioeconomic pathways to health disparities is crucial to the justification of community approaches. If policy and programs can in fact systematically affect social variables such as education, employment, or housing, and these improvements translate into health outcomes, then we have the beginnings of a model for influencing significant health disparities at the community level. However, the empiri- cal understanding of how these socioeconomic mechanisms work at the community level is still quite limited. Nonetheless, many observers believe that research and policy experimentation specifically devoted to influencing these indirect socioeconomic pathways to health disparities should proceed apace. Alegría et al. (2003), for example, have argued that interventions in schooling, housing, and income support (earned income tax credits) are empirically defensible and justified in the field of mental health disparities. Adler and Newman’s conclusion about the role of social capital in generat- ing health outcomes is similar: “The literature on social capital has not yet explained why neighborhoods with similar demographics differ on social cohesion and trust, or established whether social capital is stable. But the associational evidence between social trust and health outcomes is striking and suggests that these are complementary frontiers worthy of exploration for addressing health issues along with raising income or educational attain- ment” (Adler and Newman, 2002, p. 67). The literature on community effects on health disparities demonstrates that many community factors contribute to differential health outcomes by race and ethnicity, over and above individual characteristics (Bigby, 2007). A recent annotated bibliography of this literature by itself runs 93 pages long. The sources of these community influences are numerous and complex, including risks created by the built environment such as lead in housing, access to the “ingredients” of healthy living such as affordable healthy foods, lack of community resources such as parks and green spaces that promote activity, ambient levels of stressors such as violence that may have physical and psychological sequlae, and disadvantages in access and in quality of health services and public health supports. Despite the extent of this literature, again there is relatively little rig- orous empirical evidence that demonstrates the mechanisms by which community characteristics or the ways in which community interventions produce observable differences in health outcomes. In part, this stems from   Fora review of this literature see Rebecca Flournoy and Irene Yen, The Influence of Com- munity Factors on Health (PolicyLink, 2004).

APPENDIX D 165 the daunting statistical and data requirements for sorting out the multiple influences on health—the selection of individuals (with given health char- acteristics) into neighborhoods in the first place, the necessity for broad and multiple levels of data, and the substantial need for statistical varia- tion across communities and groups, especially in nonexperimental data ( ­ Duncan and Raudenbush, 2001; Kawachi and Berkman, 2003). The most intriguing recent empirical evidence of community-level effects per se comes from the Move to Opportunity (MTO) demonstration, in which 4,600 families in public housing in five cities were randomly assigned to different treatment groups of housing options and community environ- ments. Adults in the experiment showed significant improvements in mental health and reductions in obesity with moves to new and higher-income communities; teenage girls showed improvements in mental health and reductions in risky behavior. Interestingly, teenage boys exhibited increases in risky behaviors relative to the control group (Kling and Liebman, 2004). Residents in individual MTO sites have shown substantial declines in specific health outcomes that need medical attention, such as injuries and asthma attacks. Other studies involving movers to new communities from distressed public housing, the so-called HOPE VI studies, however, have not yet shown improvements in health status, despite extraordinarily high rates of chronic and mental health conditions at baseline in this population. (Harris and Kaye, 2004; Manjarrez et al., 2007). The critical role of community-level factors in addressing health dis- parities has led some commentators to argue that communities should become the “unit of analysis” for interventions, and community develop- ment should become the broad framework for implementing approaches ( ­ Robinson, 2005). Failure to make communities the unit of analysis means that a number of opportunities to design innovative and effective approaches are lost. First, most disparities of interest have important “nonhealth” com- munity predispositions—environment, levels of community violence, and so on. Second, many disparities represent mixtures of social and health fac- tors that cannot be easily disentangled into a simple clinical intervention. High rates of obesity and diabetes in communities reflect such a complex bundle of medical, health behavior, mental health, community resources, and access to health care. Third, many interventions require the active par- ticipation of community residents in order to be effective; this participation cannot be imposed. Fourth, many disadvantaged communities simultane- ously exhibit health disparities because of the coexistence of poverty, racial concentration and segregation, and lack of access to health and other key supports. In the city of Chicago, for example, a relatively small number of disadvantaged neighborhoods on the south and west sides exhibit the highest rates of asthma, cancer, heart disease, sexually transmitted infec- tions, diabetes, deaths from injuries and violence, and other critical health

166 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES outcomes. Even in the face of this overlapping epidemiology, “siloed” approaches to health disparities miss the opportunity to marshal large-scale community participation and resources to design approaches that sweep at least across interrelated health-related conditions—for example, substance use, violence, high-risk sexual behavior—in a community. A MULTILEVEL FRAMEWORK As shown in Figure D-1, there have historically been two paths toward addressing the health needs of individuals in communities. In the clinical setting, interventions improve health care processes and outcomes, but there is limited evidence of their impact on health disparities. In the community setting, interventions improve community status, but there is limited evi- dence of their impact on health. Policy and public health interventions can influence health through clinical or community settings, and may address health directly. Over the past decade, in recognition of the inadequate improvements in minority health, clinical, policy, public health, and community leaders have begun to consider what we will call a hybrid approach to health improve- ment, namely integrating features of clinical, community, and other (i.e., public health) approaches to address both biological and social determi- nants of health. These hybrid approaches can be focused in communities or in clinical settings, but the expertise of both is brought to bear on the problem, the solution, the evaluation, and plans for dissemination and sustainability. We compare their features in Table D-1. Following the table, we provide an overview of clinical and community approaches to dis- parities. We then discuss the issues and opportunities for advancing hybrid approaches. Finally, we conclude with a set of ideas about how hybrid approaches might be organized and implemented at scale. CLINICALLY DRIVEN APPROACHES Without question, the effective therapies developed and tested using basic science, clinical, and health services research have significantly con- tributed to improving the life expectancy of Americans of all racial and ethnic backgrounds. Yet, these diagnostic and therapeutic breakthroughs and unprecedented health care spending have not resulted in elimination of health care or health disparities for the majority of health conditions, even among populations with equal access to care. Several shortcomings of the current approach may help explain this disconnect. Table D-2 shows the building blocks of clinically oriented research to improve health. After each are descriptions of potential missteps that may occur if clinical interven-

� Address Improved Healthcare Clinical Quality of Care - Processes Setting - Services available - Intermediate/ � - Competent staff surrogate outcomes - Structure ?? Improved Health Policy and Public Health Arena Lessen Access ?? Disparities Outreach in Health � Address ?? Community Local Factors Improved Setting - Services available Community Status - Built environment - Social environment FIGURE D-1  Clinical and community approaches to health. D-1.eps broadside 167

168 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES TABLE D-1  Characteristics of Clinical, Hybrid, and Community Interventions to Improve Health Level Clinical Hybrid Community Intervention locus Health care Centered clinically Neighborhoods, or settings and related or in the community, nongeographically organizations but combine defined communities efforts from both disciplines Theory for health Evidence base of Simultaneously Improve community improvement impact of clinical addressing clinical factors (social, interventions on and community economic, health factors will have environmental, more direct and political) and health lasting impact will also improve Advantages Address biological Address biological Address social determinants of and social determinants of health; determinants of health; proven impact on health; sustainable sustainable designs; health; enhance designs; enhance community clinical resources and enhance community resources and capacity and clinical capacity resources and capacity Disadvantages Limited evidence of Limited evidence Limited evidence of impact on reducing of impact on any health impact; disparities in health health outcomes; target-efficiency outcomes; employ interventions often problem (target narrow clinical local, may be broad, timeframe perspective; challenging to scale long, not specific for challenges for up; time-consuming, health) sustainability and intensive to initiate effectiveness (beyond efficacy) Feasibility of Feasible in tightly Feasible with Feasible with implementation controlled settings adequate adequate development time infrastructure, and collaboration resources and large- scale collaborations Challenges of Translation to routine Replication may Both may be difficult translation/ practice may be be difficult due given size and scope replication difficult to strong local influences

APPENDIX D 169 TABLE D-2  Steps in Isolated Clinical Research Addressing Health Disparities and Their Pitfalls Research Step Pitfall If Lack Community Partnership Potential Impact of Pitfall Identify Look through narrow clinical lens. Identified reasons for health concerns Patient/community ideas and priorities disparities do not adequately not taken into account. explain disparities. Do not look at social determinants of Overlook novel areas for health. assessment and intervention. Design study Design lacks combination of cultural Increased likelihood of and evaluative competence. negative study. Target population may not be interested in participating, study may not be relevant. Identify sites, Inconvenient locations for patients. Poor recruitment/response recruit patients Sites chosen do not include epicenters rates. of illness (site convenient, not Fail to target the most relevant). appropriate population. Steps not taken to build trust. Recruitment strategies not motivational. Assess processes Labeled successes may not impact Increased screening, outcomes. contact with health care Omit qualitative evaluations. or surveillance, not clear if Do not solicit evaluations by subjects. improved health. Unable to identify or act on study shortcomings. Assess outcomes Find no outcome improvement due to Missed opportunity. earlier flaws. “Blame the victim”: lack of improvement is patient’s fault. Disseminate Disseminate scientifically but not to Reinforce “drive-by research” impact community. attitude held by community. Community does not have ability to Lost opportunity to capitalize act on results. on benefits beyond the specific Results not used to inform/influence project. policy. Sustain Interventions not designed with Benefit disappears along with intervention sustainability in mind. funding.

170 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES tions are conducted in isolation from the wider sociocultural context where patients spend the vast majority of their lives. Two examples of the incomplete impact of clinical research merit fur- ther description: breast cancer treatment and diabetes prevention. Breast cancer is an area where disparities in processes, namely screening, often using community-centered education, appear to be narrowing, yet dispari- ties in breast cancer deaths persist (Dietrich et al., 2006; Earp et al., 2002; Erwin et al., 1999; Smith-Bindman et al., 2006; Weir et al., 2003). Minority women with early-stage breast cancer are far less likely to receive necessary adjuvant treatments, even when equally referred to oncologists (Bickell et al., 2006). Perhaps the simpler process (mammography) is easier to address than is breast cancer treatment, which requires a multidisciplinary approach. Perhaps women of color also face disproportionate nonclinical barriers to treatment. Diabetes is another area in which clinicians and clinical researchers are making strides and yet persons of color do not appear to reap sufficient ben- efits. Minority individuals are more likely to develop and die from diabetes, and disparities in death between whites and blacks/Latinos are widening (Mokdad et al., 2003). If prevention efforts are not developed and widely implemented, one in two black and Latino children born this decade will develop diabetes, as opposed to one in four whites (Narayan et al., 2003). Several clinically based programs, most notably the large, multisite Diabe- tes Prevention Program, found that weight loss among overweight adults with pre-diabetes can prevent or delay diabetes (Knowler et al., 2002). In this program, weight loss even eliminated racial and ethnic disparities in incident diabetes. Despite this unusually promising result, the program has been neither expanded, nor continued, even at the sites where its effective- ness was proven. Less expensive methods are needed to achieve the degree of weight loss and diabetes prevention seen in this costly, time-consuming efficacy trial (Eddy et al., 2005). COMPREHENSIVE COMMUNITY-DEVELOPMENT APPROACHES Community-development and community-building approaches empha- size the development of community capacity and community connections as the means to producing better outcomes such as economic opportu- nity, safety, housing conditions, and health status (Chaskin et al., 2001). Community-building approaches tend to emphasize local leadership development, promotion of collaborations, strengthening the capacity of community-based organizations, strengthening of social capital, and gen- eration of new resources for housing and economic development.

APPENDIX D 171 A classic example of a comprehensive community-development approach based on a community-building philosophy would be initiatives supported by the LISC: LISC helps resident-led, community-based development organizations transform distressed communities and neighborhoods into healthy ones— good places to live, do business, work and raise families. By providing capital, technical expertise, training and information, LISC supports the development of local leadership and the creation of affordable ­ housing, commercial, industrial and community facilities, businesses and jobs. (LISC, 2006) These community-building programs individually and collectively rep- resent substantial commitments of public and private resources, as well as community leadership and effort. LISC alone claims to have mobilized over $7.8 billion for projects in 300 urban and rural communities (LISC, 2006). Development banks, such as ShoreBank, or commercial banks with large community-development portfolios, represent significant sources of capital and expertise. Bank of America, for example, expects to invest $750 bil- lion in community economic development over the next 10 years. Major foundations, such as Ford, McArthur, and Kellogg, have also built their strategy and funding priorities around these comprehensive community- development initiatives, in most cases leveraging an additional set of federal and state development resources. These sums dwarf the scale of most dis- parities interventions, yet there seems to be little effort devoted to capture and leverage these resources to strategically improve environment and com- munity capacity in ways that produce measurable health outcomes. On the whole, these comprehensive community-building initiatives and the national health disparities agendas have proceeded on largely separate tracks. While the connections of community-building initiatives and the efforts of public health and disparities programs operating in communities may seem self-evident, a recent review by Kieffer and Reischman (2004) concludes that the “reality is that many public health interventions are not coupled with community building strategies; and many groups undertaking community building do not include measures of improved public health as an outcome of their activities” (p. 2). The implications of this disconnect are significant. Health disparities initiatives by themselves cannot command the level of resources and com- munity attention necessary to impact the myriad of physical, social, and economic factors that underlie community health outcomes. Since com- munity leadership and institutions are critical to the success of any health intervention, it may be necessary for community health interventions to

172 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES become aligned with these larger community-development efforts to be able to capture the necessary time and attention. There are a number of good reasons why community health approaches to disparities reduction have not been built on this platform of compre- hensive community building. First, these approaches tend to emphasize the community process over interventions and implementation. In this world, collaborations, connections, relationship building, partnerships, and pro- cess often take precedence over specific interventions and implementation. Second, these approaches vest enormous control with community residents and stakeholders to define their own assets and approaches, whatever the views of experts may be. Particular health disparities may or may not rise to the top of the community hierarchy of priorities and needs for attention and resources. Third, by the very nature of comprehensive community approaches, these initiatives may have low target efficiency for a particular health condition. Efforts to improve employment, education, safety, and other community factors may have marginal or indirect effects on a particu- lar health condition of interest. Finally, these comprehensive collaborations are often slow and halting in their progress and observable outcomes. HYBRID APPROACHES (MIXED APPROACHES) Hybrid approaches imply that community and clinical and other resources are both deployed and coordinated in developing and implement- ing programs to address health disparities. Interventions can be centered or grounded in one of five disciplines or areas: clinical, public health, policy, community, and research. We review existing approaches from these per- spectives in the following sections. Clinically Centered Hybrid Approaches These approaches invite community, public health, policy, and research experts into the clinical setting in order to make clinical care more respon- sive to vulnerable populations (i.e., low-income individuals, or persons of color) and to make clinical interventions more effective in improving their health. Two approaches are gaining favor: systems redesign to make sys- tems more culturally competent and effective, and health management and support to facilitate patient self-management and navigation. Health Systems Redesign Health systems leaders can look outside their clinical boundaries to find expertise and models to improve the care they deliver. Efforts are well under way to make health centers meet current standards for culturally

APPENDIX D 173 and linguistically appropriate services (CLAS). Some translate materials into common languages and offer brief cultural sensitivity trainings. More comprehensive efforts also aim to include a well-trained and diverse staff and gain a deeper understanding of the populations they serve, and they use this understanding and active community input, creating a welcoming, educational, health-promoting clinical environment (Horowitz et al., 2000; National Standards for Culturally and Linguistically Appropriate Services in Health Care, 2001). Data on the impact of CLAS on health outcomes is scarce, although providing such basic services should not be considered controversial. Broader approaches to providing health care in communities of color have been under way for decades. The community health center model that emerged as part of the war on poverty in fact targeted the roots of poverty by combining the resources of local communities with federal funds to establish neighborhood clinics. Because these centers are governed by community boards, and provide access regardless of ability to pay, there is some evidence that patients in these centers receive more timely screening and preventive services. To combat the continued heavy burden of chronic illnesses at these centers, the Health Disparities Collaboratives of the Health Resources and Services Administration (HRSA) employed Wagner’s Chronic Care Model, a system that encourages high-quality disease management (Landon et al., 2007; Wagner, 1998). The collaboratives significantly improved the pro- cesses of care for two of the three conditions studied (diabetes and asthma), but there was no improvement in the clinical outcomes studied. The authors reflect that “achieving improvements in both longer-term and intermediate outcomes may require more intensive interventions in order to overcome environmental factors that pose particular challenges for patients.” As shown in Figure D-2, this model asserts that to improve the health of the population, health systems organizations reach out to form community alli- ances and partnerships with state programs, local agencies, schools, faith organizations, and businesses, a step those implementing the model may not have focused on adequately. Health Management and Support Health management and support reforms are often built around new professional and paraprofessional roles that connect with community resi- dents. Examples include clinical disease managers, community health work- ers who are usually employed by health systems, and more independent peer educators. Each straddles the clinical and community realms with the goal of helping patients better manage their health.

174 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES Community Health System Resources and Policies Organization of Health Care Self-Management Decision Delivery Clinical Support Support System Information Design Systems Informed, Prepared, Productive Proactive Activated Interactions Patient Practice Team Functional and Clinical Outcomes FIGURE D-2  Chronic care model. SOURCE: Modified from Wagner (1998). • Disease managers or nurse case managers work with patients who have specific, often chronic, health problems and they use informa- tion systems to track and monitor patients and clinical guidelines for care to improve both clinical and self-management (Norris et al., 2002). Initially developed to cut costs and resources, a new gen- eration of these programs is culturally tailored to better educate, motivate, and support patients (Sisk et al., 2006). The programs have some strong effectiveness data in their favor, but current non- managed care payment structures that do not lead to cost ­savings for health systems if these relatively costly managers prevent hospi- talizations may make it difficult to sustain these programs beyond the studies that prove their beneficial impact (Carryerou, 2006). • Community health workers (CHWs) are lay community members who work with the local health care system, and usually share ethnicity, language, socioeconomic status, and life experiences with the community members they serve (HRSA, 2007). They can be members of the care delivery team (largely subordinate to a lead provider); navigators who assist individuals and families in negoti- ating complex service systems and bolster their clients’ confidence when dealing with providers; screeners and health educators, often working with hard-to-reach populations; outreach workers, who reach individuals and families eligible for benefits or services and

APPENDIX D 175 persuade them to apply for help or come to a provider location for care; advocates for individual and community health needs; and organizers who become active in a community over a specific health issue, promoting self-directed change and community development. There are myriad evaluations of CHWs and the meta-analyses of these studies. CHW trials reveal significantly increased access to health care, improved asthma symptoms and decreased use of urgent care, blood pressure control, breast feeding, and decreased high-risk sexual behavior (Andrews et al., 2004; ­ Brownstein et al., 2005; HRSA, 1998; Krieger et al., 2005; Lavery et al., 2005; Lewin et al., 2005; National Fund for Medical Education, 2006; Rosenthal, 1998). The CHW workforce is likely to increase in the forthcoming years (HRSA, 2007). • Peer educators are distinguished from CHWs because they are more independent of the health care system. Lay-led, community- based peer-group sessions are an effective and cost-effective method to improve patients’ self-management skills, health outcomes, and hospitalization rates. They use trained lay leaders with backgrounds and health problems similar to those of the participants, incorpo- rating evidence of the effectiveness of role models in increasing patients’ confidence in their ability to manage their conditions, and recognizing patient education should be inexpensive and widely available and that lay leaders from the community can impart information that may not be accepted from outsiders. These pro- grams have significant health benefits in diabetes, asthma, seniors with heart disease, and with heterogeneous groups of persons with chronic conditions (Brown, 1999; Center for the Advancement of Health, 1996; Fries et al., 1998; Ladhenuso et al., 1996; Lorig and Gonzalez, 1992; Lorig et al., 1999, 2001; Mazzuca et al., 1986). Policy-Centered/-Driven Hybrid Approaches The two best examples of policy-driven hybrid approaches to commu- nity health disparities are the federal CDC Racial and Ethnic Approaches to Community Health (REACH) 2010 program and the California Healthy Communities Campaign. REACH 2010 The CDC launched the REACH 2010 initiative in 1999 to address dis- parities in six priority areas: cardiovascular disease, immunizations, breast and cervical cancers screening, diabetes, HIV/AIDS, and infant mortality. Six racial and ethnic groups were designated for these programs: blacks,

176 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES American Indians, Alaskan Natives, Asian Americans, Hispanic Americans, and Pacific Islanders. By 2004, 40 separate projects were being supported under this initiative and evaluation results had begun to be disseminated. Overall, the REACH 2010 projects emphasized local leadership and resident participation, prevention and education, and community-based par- ticipatory research. A variety of interventions and community approaches have been supported under the REACH framework. Bronx Health REACH, for example, involved 40 community-based organizations with a heavy emphasis on faith-based approaches to reducing rates of diabetes and related cardiovascular morbidity and mortality. In Oklahoma, the REACH project seeks to increase levels of physical activity with the ultimate goal of affecting diabetes and cardiovascular disease among tribal communities. The theory of REACH’s community participation and health outcomes is best depicted in their “logic model,” which traces the connections between community awareness, coalition and community organization, community changes processes, health behavior changes, and health outcomes. In prac- tice, REACH projects are expected to define the community coalitions and capacity, design, and intervention and tactics that have the basis to affect the targeted health outcome, produce community and community systems change, produce a significant amount of behavioral change, and ultimately reduce the observed disparity of interest. Recently, data are beginning to appear on the effects of the REACH 2010 projects. Findings from the REACH Risk Factor Survey indicate sig- nificant gains in the proportion of blacks and Hispanics in REACH com- munities screened for cholesterol, the proportion of American Indians in REACH communities taking medications for high blood pressure, and the proportion of Asian American men in REACH communities who do not smoke (CDC, 2007). For the purposes of this paper, the REACH projects represent a hybrid approach that attempts to take account of community coalitions and input, but with a systematic goal of reducing particular health disparities. In general, the REACH projects have involved a limited range of community participants and limited control over health provider and community- development resources. Most important, these approaches tend to tackle one condition at a time and, given resources and time, they eschew a larger approach to community development and change. California Healthy Communities At the state level, the most ambitious and integrative approach to health disparities reductions is the California Campaign to Eliminate Racial and Ethnic Disparities, and its affiliates the Prevention Institute and the Disparity Reducing Advances Project. The Campaign is directed at nine

APPENDIX D 177 medical issues: cardiovascular disease, breast cancer, cervical cancer, dia- betes, HIV/AIDS, infant mortality, asthma, mental health, and trauma. Philosophically, the campaign is dedicated to tackling fundamental causes of injury and illness. Its “logic model” envisions a progression to disparities that begins with root causes, behavioral and environmental factors, and access to quality health services. The Campaign seeks to be encompassing of a wide variety of actors, including public health, social services, education, cultural organizations, and community-based organizations. The Campaign represents an impressive assembly of funding, collabo- rations, and knowledge resources. Funding has come from the California Endowment, the California Wellness Foundation, and Kaiser Permanente, as well as numerous other smaller grants and contracts. The principle leadership and collaboration has come from the American Public Health Association, the Prevention Institute, and the California Health and Human Services Agency. Leaders of the California Campaign liken it to some of the biggest and most visible campaigns of the modern era—the Marshall Plan and the Manhattan Project—as examples of the scale and unity of purpose that will be necessary to produce meaningful change in California’s health status. Recently, leadership of the Campaign has paid considerable atten- tion to social movements as a framework for mobilizing the political will and social change necessary to achieve the desired large-scale outcomes. The California Campaign reflects many of the ingredients for a scal- able disparities approach, significant funding, a powerful strategic focus, widespread collaboration, and a commitment to applying the knowledge base about effective interventions and community process. However, as even the leaders of this Campaign acknowledge, there is still a long way to go to produce a cohesive approach that capitalizes on other disparities experiences and involves the other sectors—such as urban and community planning, housing, and so forth—that have significant roles in addressing disparities at the community level. It remains to be seen how well this kind of highly orchestrated and systematic approach to disparities reduction will fare in giving communities voice and engaging the community in meaning- ful change processes to produce the kinds of large-scale statistical results that are envisioned in the campaign. Research-Centered Hybrid Approaches in the Community Researchers are now quite comfortable using secondary data analyses to study health disparities. It would be interesting for them to partner with community development, environmental development, and urban planning leaders, to conduct community-targeted secondary analyses, merging clini- cal and community-level data to study impacts of development on heath. These partnerships may help build the mutual understanding, trust, and

178 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES respect needed among the various stakeholders to work on prospective projects to improve health. Beyond the relative absence of evaluation findings from the wide range of existing disparities interventions, even less work has been done to esti- mate the economic value of these initiatives, either as a guide for resource allocation or for policy advocacy. A model of this work is the recent cost- effectiveness analysis of improved quality of diabetes care in Federally Qualified Neighborhood Health Care Centers (Huang et al., 2007). This analysis suggests that systematic improvements in diabetes care would be cost-effective for society because the overall health effects (lifetime inci- dence of blindness, kidney disease, and heart disease) offset the costs of health services improvements. This form of economic analysis is just the beginning of a necessary agenda to value community-based interventions to reduce disparities. In many respects, cost-benefit or cost-effectiveness analysis of this form of clinical service is the easiest case; broader-based or hybrid approaches will require much more effort and sophistication to capture the full range of social costs and benefits. Indeed, many of the effects represent exter- nalities in the economic sense and will not be typically priced or valued in traditional economic markets. Reducing the incidence of high lead levels, for example, yields a host of developmental, educational, and community benefits than extend beyond the simple accounting of health care costs and benefits. In traditional cost-benefit analysis, these outcomes typically fall in the domain of externalities and are not priced or valued in direct market exchanges, but they may represent the paramount economic benefit of c ­ ommunity-level investments. Being able to account for the return on investment of health disparities interventions is more akin to the literature and practice of social return on investment, where effects on the environment and the social opportuni- ties of beneficiaries are central concerns (Olsen, 2003). Especially in cases where disparities approaches have the character of hybrid clinical and c ­ ommunity-development initiatives, considerable attention will need to be paid to developing methodology, collecting data, and reporting results in forms that are appropriate to the task. Creating a New Cadre of Community-Based Researchers In this young field, there is only emerging evidence of the health ben- efits accrued with a community focus. Little is known about the relative effectiveness of different organizational strategies to build the enterprises needed for this work. Building a cadre of professional and lay experts to conduct and evaluate interventions will take time, yet there is tremendous

APPENDIX D 179 opportunity for leadership development, such as the new emphasis in the Robert Wood Johnson Clinical Scholars Program. Critical to the advance and credibility of this field will be the involve- ment of new investigators and an expansion of the pool of community- based researchers. Venues to train new community and academically based investigators in community-based participatory research (CBPR) are expand- ing. There are also many reviews, guides, and literature syntheses avail- able to guide individuals through the steps to conducting CBPR. To build new opportunities and expertise in the field, areas to consider include the following: • Creating formal liaison centers to allow community representatives to better understand research, better define their concerns and find researchers they can work with, and for researchers to learn about CBPR and link with community representatives • Creation of clearer mechanisms for academic advancement to legitimize CBPR and to ensure that talented researchers are sup- ported to remain in the field (Commission on Community-Engaged Scholar­ship in the Health Professions, 2005) • Institutional sponsorship of community–academic partnerships at the highest level • Identification of mentors for community and academic partners locally and nationally (Community Campus Partnerships on Health maintains a database of community partners for this purpose) • Creation of an information clearinghouse on disparities that net- works individuals, programs, and opportunities, houses databases with information on local and regional health and health disparities and relevant community characteristics, and lists community-based disparities reduction programs and links to their evaluations • Finding new mechanisms to increase interaction among social s ­ cientists, medical investigators, public health, and community- development scholars in the pursuit of a community-level knowl- edge base leading to effective interventions Taking Advantage of Large-Scale Translational Research Opportunities (Bench to Bedside to Barrio) Historically, translational research has focused on “bench to bedside” (Zerhouni, 2003). Acknowledging the slow trajectory toward eliminating health disparities and the failure of those few programs that show promise to be sustained or disseminated, a new term has emerged in translational   See http://depts.washington.edu/ccph/index.html.

180 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES research circles: “bench to bedside to barrio.” Regional and national efforts have started bringing together federal and private funders with academic and community leaders to identify barriers to and enablers of effective community–academic research partnerships and to develop and disseminate guidelines and best practices for conducting community-based clinical and translational research in minority communities. They help coordinate sup- port for developing and maintaining core research infrastructure to enable community participation, developing research protocols that work effec- tively in community settings, and building community buy-in and trust to enhance recruitment and retention of research participants. The best funded and most visible of such programs are the new Clinical and Translational Science Awards (CTSAs), a new consortium to transform how clinical and translational research is conducted, ultimately enabling researchers to provide new treatments more efficiently and quickly to patients. The consortium will link about 60 institutions to encourage devel- opment of new research methods, tools, and approaches; improve training and mentoring; assemble interdisciplinary research teams; and forge new partnerships with private and public health care organizations. According to the CTSA literature, “CTSAs represent a new culture of translational healthcare research in which community engagement is key to success.” The CTSA Community Engagement Steering Committee (one of eight sub- committees to coordinate institution topic-specific efforts with the national CTSA consortium) is charged with ensuring the successful implementation of a broad community-engagement plan among the CTSA sites by sharing knowledge, expertise, and resources and by effectively engaging communi- ties in the translational research process via bidirectional dialogues. Their aims are (1) to find ways to get bench scientists and clinicians interested in priorities identified by communities; (2) to identify effective strategies to convince academic institutions that community engagement is impor- tant and deserves a supportive atmosphere (including adequate budgetary resources and influencing the National Institutes of Health culture to value community engagement and CBPR, collaborative budgeting strategies); and (3) to develop milestones for community engagement and research, includ- ing establishing boards, leveraging partnerships for funding, developing a registry of community-generated research ideas and needs, and developing outcomes and metrics for this research. Taking Advantage of Public Health Ever since the IOM report, The Future of Public Health, public health professionals and organizations have been looking to lead and participate   See http://www.ncrr.nih.gov/research_infrastructure.   See http://www.ctsaweb.org/commengage.html.

APPENDIX D 181 in disparities initiatives in a meaningful way. The IOM report defined a mission for public health of “assuring conditions in which people can be healthy,” with its “aim to generate organized community effort . . . by applying scientific and technical knowledge to prevent disease and promote health” (IOM, 1988). The Committee recommended a host of activities that would position public health agencies and professionals in the middle of policy development, data collection and research, and capacity build- ing to affect health status. Included in this agenda were issues of indigent health care, mental health, and environmental health. Schools of public health figured prominently in this agenda, and they were expected to cross boundaries with medicine, the social sciences, and other disciplines with the ultimate goal of generating new and effective interventions. Public health was envisioned to play a strong policy role with extensive interaction with government, social service agencies, and “street-level” contacts. Without question, considerable progress has been made in the past 20 years in realizing this vision for public health, and many examples exist of the kind of collaborative, integrated approach that was envisioned by the IOM process. The CDC’s STEPS program, directed at high-priority disparities issues of obesity, diabetes, and asthma, for example, embodies most of the principles of this IOM report. It seeks to implement an inte- grated approach at the community level that involves schools, employers, and other stakeholders; it attempts to affect policy and fundamental health behaviors; and it incorporates a strong evaluative component. However, in the scheme of disparities challenges, STEPS is a relatively modest public health initiative, allocating $44 million in fiscal year 2005 for 40 commu- nity projects. While the agenda articulated in 1988 would seem to place public health departments, schools, and professionals at the heart of the disparities, few observers would conclude that public health has played the kind of overall leadership, integrative function, and applied community role that is necessary to effectuate significant changes in health disparities. Much has happened during this period, including funding challenges, the demand for homeland security and bioterrorism roles for public health, and other claims on public health’s mission and priorities. Many movements are afoot to bring public health into a more central role, including a great deal of discussion about the role of public health in influencing the built environ- ment in health disparities. The California Campaign represents an initiative that embodies both the philosophical commitment to prevention of a public health perspective as well as the professional and organizational leadership of the American Public Health Association. The research opportunities pro- vided in CTSAs, Disparities Centers, and other large-scale initiatives may be important factors in bringing at least academic public health into a stronger and more applied community role in reducing health disparities.

182 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES Solving Organization, Finance, and Policy for Hybrid Approaches Efforts to mount a systematic approach to racial and ethnic disparities at the community level are hampered by governance, funding, and manage- ment challenges of the health delivery system utilized by racial and ethnic minorities. Governance Especially since the demise of health planning in the 1980s, most areas of the country have no accountable party and no organized mechanism for governing health resources across the spectrum of public health, hospital systems, community health centers, and the myriad of private health pro- viders and resources that are necessary for building effective health dispari- ties collaborations. Governance of health is fragmented into different levels of administration (e.g., city, county, state), “fiefdoms” of health provision (e.g., public health versus hospitals), as well as different geographic jurisdic- tions. St. Louis, for example, is an agglomeration of 97 municipalities and a complex web of city, county, and state (both Illinois and Missouri) jurisdic- tions. It is hard to overestimate the significance of these kinds of political, administrative, and even statistical fragmentations for mounting strategic approaches to disparities. This lack of overarching governance means that the most basic elements of a strategic approach—collecting data, creating a continuity of screening, prevention, and care—are dauntingly difficult administratively. Funding Health care interventions to address disparities are financed through a bewildering array of public and private resources. Some of these resources flow from categorical grants and contracts specifically targeted to fund a program or agency dedicated to a particular health outcome such as infant mortality. HRSA funding of specific Health Start programs, such as programs to improve the systems of care for pregnant women expe- riencing domestic or family violence, would be an example of a highly targeted discrete funding stream. Some of the financing flows to public ­and private providers such as payments (grants or fee for service) to Federally Qualified Health Centers or other community-based clinics. Some of the relevant resources flow through either traditional Medicaid or Medicaid waiver schemes. Some of the resources flow through county or city public hospital and clinic systems. Some services and costs are simply unfunded,   See, for example, Terry Jones, Fragmented by Design (Jones, 2000).

APPENDIX D 183 meaning that cross-subsidies from charity care, disproportionate share, or philanthropic sources need to be found. An example of the consequences of this patchwork of financing can be seen in programs to reduce racial and ethnic disparities in breast cancer: projects have been successful in motivating women to be screened but have often struggled to find and pay for mammography services, as well as timely follow-up care. This follows directly from the fragmentation of financing and services. The providers and payment for community health promotion are often disconnected from the providers and payment for mammography and advanced cancer care. Many disparities interventions are funded through research mechanisms whose short timeframes (usually 2–5 years) often preclude the development of substantive partnerships and do not allow for sustaining partnerships or successful interventions. This stuttering funding can only lead to transient improvements in health for small populations and mounting distrust of community members who view such endeavors as academic fodder. In order to create the combination of resources, as well as continuity of service for community residents, much greater attention will need to be paid to the governance and financing of disparities approaches. At a mini- mum, this means that some form of regional data collection, coordination, and accountability for disparities interventions much be accomplished. It also means that payers and providers will need to be vested in the financing and outcomes of disparities initiatives. The Massachusetts health reform provides this kind of recognition of the integral role of financing and gov- ernance, but it too has been criticized for not backing up the rhetoric of a disparities priority with hard sources of funding. Critical to commanding the resources and instruments to address the environmental, housing, educational, employment, and social service cor- relates of health disparities will be a recognition that larger-scale public policy is a key element of the disparities agenda. The best spokesperson for this perspective has been Margaret Alegría, who has argued that much of the action in hybrid approaches lies in understanding and policy reform of such programs as the Earned Income Tax Credit and Special Educa- tion (Alegría et al., 2003). Key policy areas that will affect the course of disparities approaches include public housing transformation, changes in the Community Reinvestment Act Provisions, welfare reform, immigration policy, Medicaid, and health care coverage. Typically, advocates and inves- tigators do not see such large-scale social policy issues as part of the set of disparities levers and concerns, but the resources involved and implications for communities dominate many of the research-driven projects that have come to define the disparities field.

184 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES MODELS AND IDEAS FOR HYBRID COMMUNITY APPROACHES In order to bring these hybrid approaches to scale, new community infrastructure and resources will need to be developed. Current approaches are typically small in scale, do not leverage significant resources, and do not capitalize on information and technical expertise. Creating scalable community approaches will require solutions to the financing problems inherent in many disparities initiatives. Community approaches that can be evaluated and that demonstrate statistical impact on disparities will also need to account for much larger populations and bring much greater analytic sophistication than most current community examples. Five models or heuristics are presented to give examples of how new hybrid approaches might be configured in ways that address many of the shortcomings identi- fied in this paper. 1. Regional Health Authorities: A number of regional authorities already exist at different levels of aggregation. The Westside Health Authority in Chicago, for example, has led a number of community- development and health disparities initiatives with full community participation and advocacy. The Regional Health Commission in St. Louis addresses a range of data, provider, and policy functions from the perspective of the region as a whole. Regional Health Authorities effectively configured for addressing disparities would need to capture a financing stream (most likely though a Medicaid assessment or all-payer program), and adopt a dedicated focus on disparities reductions for particular communities to be effective. 2. Community Development Banks/Corporations: While improve- ment of community health is one of the stated initiatives of many comprehensive community-development initiatives, in practice the goals and resources are more tightly defined by housing and economic-development measures. However, these institutions and investments represent large flows of capital and often intensive community involvement. Bank of America, for example, will invest $750 billion in the next 10 years in community development. Many of these investments occur in exactly the same communities with a high prevalence of health disparities conditions. To organize this combined health/community-development approach, new partner- ships would need to be struck with institutions such as Shorebank, LISC, Bank of America, the Department of Housing and Urban Development (HUD); as well as other regional investors and devel- opers. Many of these initiatives are organized around community- development corporations that provide an initial infrastructure and governance of these collaborations.

APPENDIX D 185 3. University–Community Partnerships: A number of successful u ­ niversity–community partnerships have been built in recent years, some with the formal support of HUD and other federal agen- cies. The major examples, the University of Pennsylvania and the University of Chicago, have largely focused on community eco- nomic development and urban schools. While there certainly are examples of academic medical centers and schools of public health that have significant community partnerships, they have not been organized and disciplined by a systematic approach to addressing disparities in particular communities. The emergence of CPBR, the emphasis on CTSAs, the community interest of academic public health, and the community training needs of many medical school make this an opportune time to consider scaling up and organiz- ing ­university–community partnerships specifically for addressing disparities. To the extent that these partnerships can leverage the health care ­ delivery system at major academic centers, there is also the potential to create more seamless structures of financing and health care service in these neighborhoods. These urban com- munity models have the potential for not only addressing urban disparities but also utilizing university networks in rural health. 4. CBPR Practice Networks: As this appendix describes, one of the exciting developments in addressing disparities has been the n ­ umber of projects and community relationships stimulated by CBPR. Despite the apparent early successes of this movement, it is operating at small scales and with little opportunity for cross- f ­ ertilization, data development, and comparative analysis. A struc- ture that organizes and supports this movement across community sites has the potential to create a multiplier from these projects. A potential model for collaboration, data collection, and technical assistance are the national practice networks that are emerging in other areas of health services research. The extension of this idea to communities would involve the creation of comprehensive prac- tice network structures and data and information systems at the community level. Even better, a consortium of community-based practice networks would allow better systematic and comparative evaluation of community-based disparities initiatives. 5. Provider Networks or Systems to Address Disparities: Many of the current priority conditions have a heavy reliance on improvements in access and quality of health services in low-income and minor- ity neighborhoods. As a practical matter, sufficient funding and sufficient “market penetration” to create a statistical impact will require multiple health care plans, systems, and providers operat- ing in consort. Versions of these arrangements have been created in

186 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES cities to address ambulatory care provision, indigent care, and spe- cial service needs such as trauma care. These networks of systems typically require dedicated payment streams and some governance from the local health departments, state public health, or other public agent. Payment streams have included ­ Medicaid provider assessment schemes, use of Disproportionate Share ­dollars, or allo- cations of city, county, or state revenues. A model for organizing these networks to address place-based disparities would be the creation of special health disparities districts, analogous to medical districts, that would provide incentives for health plans to ­create new community-based programs as well as access and quality improvement in relevant services. Summary and Recommendations The central problem for building community approaches to reducing health disparities is to knit together community, provider, funding, and aca- demic resources at such a scale that there is the potential to have statistical effects on population health outcomes. Many of the initiatives to date have demonstrated good will, effective community collaborations, and reasoned approaches to addressing disparities, but they tend to be fragmented, small in scale, and inadequately or transiently funded. Considering realistically the magnitude of behavioral change and service provision that is necessary to have a statistical impact on disparities, at the community level much less nationally, it will require a level of commitment and organization that far outstrips current models of intervention. In effect, the disparities initiatives need to be upsized from a cottage industry to substantial organization and scale. Hybrid approaches to improving health outcomes and reducing dispari- ties have the advantage of being clinically centered in the community, but they leverage the community participation, resources, and environmental agenda that are associated with broader community-development strategies. In principle these hybrid approaches have greater potential for sustain- ability and scale. They have the disadvantage of being diffuse, community process oriented, and difficult to target narrowly on specific disparities interventions. Many varieties of these hybrid approaches exist, such as the REACH 2010 and CBPR projects, but little empirical evidence about outcomes and little analysis of strategies are available for making these approaches successful, scalable, and sustainable. Our analysis of current hybrid community approaches has identified a number of issues that need to be addressed to advance these clinical and community models. The goal of these hybrid models should be that they are simultaneously clinically excellent as well as community-responsive ini-

APPENDIX D 187 tiatives. Significant adaptation will need to occur in the clinical enterprise in order to have mutuality and successful collaboration in the community. Innovation in the forms and utilization of data will be necessary. New commitments to community-level evaluation, including some version of social return on investment, will be necessary to learn from and advocate for these community-level initiatives. A new cadre of appropriately trained community-based researchers, with expertise in the community disciplines and experience with the cultural, social, and political realities of working in communities will need to be trained. CTSA opportunities will need to be seized, so that that the community side of this roadmap is highly responsive to community values and interests, not merely an appendage to the tradi- tional clinical research enterprise. The resources of public health—both governmental and academic—will need to be reassessed and more effec- tively deployed to advance this agenda of hybrid approaches. Finally, solu- tions to the organizational and financing gaps in disparities programs will need to be fashioned. There are currently a large number of alternative community disci- plines, professionals, and organizations laying claim to the community- development and disparities agenda. Community health, community building, community organization and planning, urban planning, public health, environmental health, social work, and others all see themselves as primary professional leaders in this movement. From the perspective of communities, academic centers, health providers, social service orga- nizations, public health agencies, faith-based organizations, and a host of advocacy organizations are all seeking to partner and mount their own ver- sions of disparities programming. Meanwhile, some of the largest players in community development, the banks and developers, are often outside of the discussion, financing, and implementation of disparities programs. Community collaborations (e.g., CBPRs) show great promise in the struggle to eliminate disparities. They can identify root causes of disparities, build on local assets, devise novel, clinically, and environmentally sensible designs with sustainability in mind, inspire robust research participation, and disseminate results so they inform policy and inspire further introspec- tion and change. They are also community-organizing and -development initiatives in their own right. However, models for partnership in the lit- erature describe years of planning—building relationships and crafting fair rules of engagement before research and interventions begin in earnest. While these processes must not be overlooked and local adaptation may be necessary for many interventions, the CBPR community must challenge itself to move from community-based planning (CBP) to “CBPR” with more efficiency and to find models that are proven to improve health and that can be exported to other communities or within the community, to address other health-related issues.

188 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES The solution is not to choose one or another of these community p ­ layers as primary. Rather, new mechanisms which bring together some of these stakeholders in partnership with community residents and with focus on substantial disparities programming will be necessary. Examples we have considered include regional health authorities, community-development corporations, university–community partnerships, CBPR practice networks, and new forms of health plan districts or networks. Our analysis has produced a beginning agenda for the IOM Roundtable to pursue in building better linkages between community development and clinical services—hybrid approaches—in the name of reducing disparities. • Convene community-development organizations and funders, along with health disparities academic and practice leadership to design hybrid approaches. • Promote the creation of an evidence-based clearinghouse for information and technical assistance in community development for reduction in health disparities (such a clearinghouse could be mounted under the auspices of public, association, university or foundation organizations). • Convene the major health systems to address staffing, programming, disease management, and community partnerships approaches to disparities. • Influence the major existing clinical/research mechanisms—CBPR, CTSAs, REACH 2010—to leverage the full spectrum of community resources beyond the traditional scope of the clinical and research requirements of these mechanisms. • Commission a set of briefing papers that describe replicable models of community finance (e.g., disproportionate share hospital pay- ment approaches), governance (e.g., health authorities), and com- munications innovations for effective and sustainable disparities reduction in communities. • Reexamine the framework and recommendations of the IOM report The Future of Public Health with the goal of reinvigorating a public health agenda in community and health disparities. • Convince a leading public health, health services, or community- development journal to publish a special issue on methods for evaluating community interventions and initiatives to reduce dis- parities—geographical and Health Impact Analysis, cost benefit and social return on investment analysis, multilevel and social net- work methods—as well as qualitative approaches. • Engage a leading foundation in supporting the training and profes- sional development of a new cadre of community-savvy academic leaders in the field of health disparities.

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APPENDIX D 191 Landon, B. E., L. S. Hicks, A. J. O’Malley, T. A. Lieu, T. Keegan, B. J. McNeil, and E. ­Guadagnoli. 2007. Improving the management of chronic disease at community health centers. New England Journal of Medicine 356(9):921–934. Lavery, S. H., M. L. Smith, A. A. Esparaza, A. Hrushow, M. Moore, and D. F. Reed. 2005. The community action model: A community-driven model designed to address disparities in heath. American Journal of Public Health 95(4):611–616. Lewin, S. A., J. Dick, P. Pond, M. Zwarenstein, G. Aja, B. van Wyk, X. Bosch-Capblanch, and M. Patrick. 2005. Lay health workers in primary care and community health. Cochrane Database of Systematic Reviews, Issue 1. Art. No.: CD004015. DOI: 10.1002/14651858. CD004015.pub2. LISC (Local Initiatives Support Corporation). 2006. Annual report. http://www.lisc.org/docs/ brochures/media/lisc_ar_2006.pdf (accessed April 10, 2007). Lorig, K., and V. Gonzalez. 1992. The integration of theory with practice: A 12-year case study. Health Education Quarterly 19:355–368. Lorig, K. R., D. S. Sobel, A. L. Stewart, B. W. Brown Jr., A. Bandura, R. Ritter, V. M. ­Gonzalez, D. D. Laurent, and H. R. Holman. 1999. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: A randomized trial. Medical Care 37:5–14. Lorig, K. R., P. Ritter, A. L. Stewart, D. S. Sobel, B. W. Brown Jr., A. Bandura, V. M. Gonzalez, D. D. Laurent, and H. R. Holman. 2001. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical Care 39:1217–1223. Lurie, N., and A. Fremont. 2006. Looking forward: Cross-cutting issues in the collection and use of racial/ethnic data. Health Services Research 41:1519–1533. Manjarrez, C. A., S. J. Popkin, and E. Guernsey. 2007. Poor health: Adding insult to injury for HOPE VI families. HOPE VI: Where do we go from here? The Urban Institute 5:1–9. Mazzuca, S. A., N. H. Moorman, M. L. Wheeler, J.A. Norton, N. S. Fineberg, F. Vinicor, S. J. Cohen, and C. M. Clark Jr. 1986. The diabetes education study: A controlled trial of the effects of diabetes patient education. Diabetes Care 9(1):1–10. Mokdad, A. H., E. S. Ford, B. A. Bowman, W. H. Dietz, F. Vinicor, V. S. Bales, and J. S. Marks. 2003. Prevalence of obesity, diabetes, and obesity-related health risk factors. Journal of the American Medical Association 289(1):76–79. Narayan, K. M., J. P. Boyle, T. J. Thompson, S. W. Sorensen, and D. F. Williamson. 2003. Lifetime risk for diabetes mellitus in the United States. Journal of the American Medical Association 290(14):1884–1890. National Fund for Medical Education. 2006. Advancing community health worker practice and utilization: The focus on financing. San Francisco: Center for the Health Professions, University of California at San Francisco. National Standards for Culturally and Linguistically Appropriate Services in Health Care ([Final Report] U.S. Department of Health and Human Services, Office of Minority Health). 2001. http://www.omhrc.gov/assets/pdf/checked/finalreport.pdf (accessed April 10, 2007). Norris, S. L., P. J. Nichols, and C. J. Caspersen. 2002. The effectiveness of disease and case management for people with diabetes. American Journal of Preventive Medicine 22:15–38. Olsen, S. 2003. Social return on investment: Standard guidelines. Center for Responsible Busi- ness, 2003. http://repositories.cdlib.org/crb/wps/8 (accessed April 10, 2007). PolicyLink. 2004. The influence of community factors on health. http://www.policylink.org/ pdfs/AnnotatedBib.pdf (accessed April 4, 2008). Robinson, R. G. 2005. Community development model for public health applications: Overview of a model to eliminate population disparities. Health Promotion Practice 6:338–346.

192 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES Rosenthal, E. L. 1998. A summary of the National Community Health Advisor Study. Annie E. Casey Foundation and the University of Arizona. http://www.rho.arizona.edu/Resources/ Studies/cha-study/default.aspx (accessed April 11, 2008). Sampson, R. J. 2003. Neighborhood-level context and health: Lessons from sociology. In Neighborhoods and Health, edited by I. Kawachi and L. F. Berkman. New York: Oxford University Press. Sisk, J. E., P. L. Hebert, C. R. Horowitz, M. A. McLaughlin, J. J. Wang, and M. R. Chassin. 2006. Effects of nurse management on the quality of heart failure care in minority com- munities: A randomized trial. Annals of Internal Medicine 145:273–283. Smith-Bindman, R., D. L. Miglioretti, N. Lurie, L. Abraham, R. B. Barbash, J. Strzelczyk, M. Dignan, W. E. Barlow, C. M. Beasley, and K. Kerlikowske. 2006. Does utilization of �������������������� screening mammography explain racial and ethnic differences in breast cancer? Annals of Internal Medicine 144(8):541–553. Wagner, E. H. 1998. Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice 1(1):2–4. Weir, H. K., M. J. Thus, B. F. Hankey, L. A. Ries, H. L. Howe, P. A. Wingo, A. Jemal, E. Ward, R. N. Anderson, and B. K. Edwards. 2003. Annual report to the nation on the status of cancer, 1975–2000, featuring the uses of surveillance data for cancer prevention and control. Journal of the National Cancer Institute 95:1276–1299. Williams, D. R., H. W. Neighbors, and J. S. Jackson. 2003. Racial/ethnic discrimina- tion and health: Findings from community studies. American Journal Public Health 93:200–208. Zerhouni, E. 2003. Medicine. The NIH roadmap. Science 302:63–72.

Challenges and Successes in Reducing Health Disparities: Workshop Summary Get This Book
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In early 2007, the Institute of Medicine convened the Roundtable on Health Disparities to increase the visibility of racial and ethnic health disparities as a national problem, to further the development of programs and strategies to reduce disparities, to foster the emergence of leadership on this issue, and to track promising activities and developments in health care that could lead to dramatically reducing or eliminating disparities. The Roundtable's first workshop, Challenges and Successes in Reducing Health Disparities, was held in St. Louis, Missouri, on July 31, 2007, and examined (1) the importance of differences in life expectancy within the United States, (2) the reasons for those differences, and (3) the implications of this information for programs and policy makers.

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