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Challenges and Successes in Reducing Health Disparities: Workshop Summary 3 Clinical and Community-Development Approaches to Reducing Disparities In preparation for this workshop, Drs. Carol Horowitz and Edward Lawlor coauthored a paper synthesizing information about clinical and community-development approaches to reducing health disparities. Their paper, “Community Approaches to Addressing Health Disparities,” assesses the implications for developing actionable strategies and describes the benefits of—and approaches to—integrating clinical and community-based approaches to impacting communities and reducing health disparities. This paper, which is included in Appendix D, was presented by Drs. Horowitz and Lawlor at the workshop, and the workshop presentation of their paper is summarized below. DISPARATE APPROACHES TO ADDRESSING HEALTH DISPARITIES There has not been enough progress toward reducing health disparities using standard accepted practices, explained Dr. Horowitz.1 Typically, community approaches to health disparities are made through interventions or other efforts mediated through clinical or community settings (Figure 3-1). Disparities can be addressed in a clinical setting by addressing issues related to quality of care. Interventions such as these can include enhancing the assortment of services offered, ensuring that appropriate treatment options are available, training and providing competent staff, or determining whether the proper organizational and care structures exists. If quality-of-care issues are addressed, health care improves. If processes improve, 1 This section is an edited transcript of Dr. Carol Horowitz’s remarks at the workshop.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary FIGURE 3-1 The “two paths” of community approaches to disparities.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary some intermediate outcomes improve. However, although it is believed that improving health care and quality of care can lead to improved health, it is not always clear whether improving health care leads to the lessening of disparities in health. The disconnect between health care and improved health in a clinical setting can be demonstrated by considering the relationship of breast cancer care and mortality rates. While there has been progress in decreasing disparities in breast cancer screening through mammography and disparities are narrowing in mammography rates, mortality rates attributed to breast cancer among nonwhites are increasing over those of white women. There are excellent treatments for early-stage breast cancer, but nonwhite women are less likely to get these treatments. In general, it appears that improving the processes—improving screenings and persuading women to receive health care—may not be enough to reduce mortality from breast cancer, especially among nonwhite women. Similar problems are apparent when community approaches are used to try to reduce disparities. In a community setting, community building and development efforts address socioeconomic fundamentals and endeavor to enhance community assets. These efforts are varied but can include improving local services or the availability of affordable housing, enhancing the built or social environments, providing employment opportunities, alleviating safety concerns, increasing the availability and accessibility of convenient healthy food options, or ameliorating air quality concerns. Efforts such as these can improve community status, yet they may not improve health or reduce health disparities in a community. In addition, issues such as these can be considered outside of the purview of the primary program objectives; local factors are therefore not measured at baseline, making it impossible to determine whether or not interventions or programs effectively addressed these issues or impacted disparities in a community. Silos Efforts to reduce health disparities using either clinical or community approaches, but not the two approaches in combination, are thought of as silos. It is striking how many large-scale collaborative studies working toward the goal of decreasing disparities use a silo approach. However, programs that work toward reducing disparities using a silo approach can impede progress and potentially limit a program’s success. An example of a silo from a community-development perspective is the Local Initiative Support Corporation (LISC). LISC is a comprehensive community-development initiative working toward transforming distressed communities into healthy ones. In the last 10 years LISC has mobilized almost $8 billion to fund efforts to develop local leadership, create afford-
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Challenges and Successes in Reducing Health Disparities: Workshop Summary able housing, and stimulate commercial and job development in 300 rural and urban communities. Their website, however, does not define any specific health goals, and there are very few measures demonstrating health impacts in LISC communities. LISC is therefore a program that may or may not be improving health. It would seem that LISC could include health improvement as part of its programs, but that is not currently happening. An example of silos with a clinical perspective can be seen by looking at diabetes prevention efforts. Nearly half of black and Hispanic children and nearly a quarter of white children born in this decade will have diabetes as adults unless something is done quickly to stop this trend. The Diabetes Prevention Program is a large, multisite national study that has demonstrated that if individuals can be identified as prediabetic—with sugars higher than normal, but not yet at the diabetes level—and they can lose weight through lifestyle change, diet, and exercise, diabetes can be prevented or delayed in a significant number of cases. Interestingly, the study also showed that disparities could be eliminated in incident diabetes. Blacks and Hispanics usually have a higher incidence of diabetes than whites in America, but in the Diabetes Prevention Program, with the requisite lifestyle changes, there was no difference in the likelihood of developing diabetes. However, the study included only patients who came in for two full days of testing. Patients also had to keep a thorough food diary for two entire weeks and attend dozens of sessions at clinical sites. In the end, this turned out to be an efficacy trial, but the program did not really have roots. When the funding stopped, the results stopped. Without the Diabetes Prevention Program, people are really struggling with how to manage their diabetes-related health concerns, and, although the program demonstrated a potential solution for reducing diabetes, it is no longer being used. East Harlem, a predominantly black and Hispanic, low-income neighborhood, is the epicenter of diabetes and obesity in New York City. In East Harlem, there are many different silos working on obesity. From the clinical perspective, doctors would refer people for surgery, give people medication for obesity, or refer patients to a nutritionist. Nutritionists were a scarce resource, however, and patients who were lucky enough to see a nutritionist found individuals who did not understand their culture and who would instruct them to eat foods that were unfamiliar, unavailable, or unaffordable. Yet the clinical groups were doing their job and were realizing some success but, on the whole, patients were still overweight and it was generally viewed as the patients’ fault. In the public health silo, public health professionals were developing and offering free exercise classes for the community. Yet the community members were not consulted about these classes ahead of time so they did not attend them. In the end, community members were still overweight,
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Challenges and Successes in Reducing Health Disparities: Workshop Summary and the public health workers blamed them for not taking advantage of the free classes. There is also the researchers’ silo. The researchers were conducting programs like the Diabetes Prevention Program: well-planned, hospital-based, intensive weight loss programs. They received grants and published their results in well-respected journals. However, when funding for the programs ran out, the programs were not sustainable. In the end, people in the community were still overweight and were blamed for failing to continue the program. Policy makers are in another silo. Policy makers established laudable physical activity standards for schools, so they were confident they had done their job effectively. All schools, including schools in East Harlem, had a policy in place that established physical education standards. However, a percentage of the schools could not implement the new policies because they did not have gyms. In this case, although there was a policy, people are still overweight and the community is blamed. Even developers play a role in the silo approach. Developers were building new housing in the area, but they did not consider creating spaces for physical activity because it was not a priority. Neighborhoods therefore lack features like sidewalks, adequate lighting, safe transportation, and green space. The developers have done their job but the community members are still overweight. A community organizer from East Harlem recently expressed her frustration with the silo approach, continued Dr. Horowitz. Over the years the community organizer has been courted by representatives from many of these different groups. She has attended meetings with them and she has written several letters of support for their programs and grants. Yet, when asked for her opinion about what is happening in her community, she says, “You know what? We are all still fat and sick.” When she wants to try to solve problems in her community, she is unsure who to partner with. She does not know who will treat her as an equal and not judge her for being overweight. She is unsure who can help make an impact in her community, at the same time ensuring that her community is not exploited. She is unsure who she can trust to stop perpetuating a “helicopter approach” to research, in which people come into the community, conduct their program, and leave without truly making any community impact. The person coordinating the helicopter program seems to benefit from it, but the community does not. All of these problems demonstrate the problems with silos. Pursuing a Hybrid Approach A hybrid model combines aspects of both the clinical and community approaches to reducing health disparities. This model would empower and
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Challenges and Successes in Reducing Health Disparities: Workshop Summary mobilize community resources and residents at the same time it implements clinically sound approaches to improving health. These programs could be focused on bringing the community into the clinic or bringing the clinical people out to the community. Challenges such as identifying problems in communities, finding appropriate solutions, conducting evaluations, disseminating findings, and sustaining programs could all be accomplished more successfully with this unified approach. Dr. Horowitz explained that Jim Krieger, a member of the Roundtable, had provided her with an example of a hybrid approach when he described an organization in Seattle called Asthma Care. Asthma Care oversaw the construction of new low-income housing that was built using special paints and floorings to ensure that the housing was free of asthma triggers and therefore would provide a better home environment for people with asthma. At the same time, health educators taught people about how to care for their asthma and helped them get appropriate clinical care. Asthma Care demonstrates how a hybrid approach would operate. A hybrid approach could also be effective in addressing issues of racism and segregation in a community, since community members would be welcomed as equal partners. This approach would provide an opportunity for health leaders to listen and learn from and with community members. Health leaders would have the opportunity to discover the power, wisdom, and ideas that minority groups in the community, or people directly affected by illnesses, have to offer. When the clinical and the community factions work together, there is the potential to transform power differentials and relationships and create opportunities for new ideas and new resources. The potential exists to create solutions that build on community assets, such as enhancing community partnerships; improving recruitment, retention, research, and programs; and successfully aligning resources with the most pressing needs and priorities in a community. A comparison of the clinical, hybrid, and community approaches (Table 3-1) shows that clinical approaches do impact health, although it is unclear how substantially they impact health disparities outcomes. The advantage of the clinical approach is that it addresses biological determinants of health and enhances clinical resources and capacity. The disadvantages of this approach are that they have a narrow clinical perspective, the programs may be unsustainable, and it is unclear whether they have any residual effectiveness in the communities beyond the early trials that are conducted. Community approaches address social determinants of health, and efforts may enhance both community resources and capacity. Some community models may also be more sustainable than others. The disadvantages of community approaches include difficulty in determining whether they are effectively reaching their goals, the long time lines that many
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Challenges and Successes in Reducing Health Disparities: Workshop Summary TABLE 3-1 Characteristics of Clinical, Hybrid, and Community Approaches Clinical Hybrid Community Evidence of Health Impact Positive on health, not evident in disparities Emerging Not a traditional goal, not measured Advantages Address biological determinants of health Enhance clinical resources and capacity Address biological and social determinants of health Sustainable designs Enhance community and clinical resources and capacity Address social determinants of health Sustainable designs Enhance community resources and capacity Disadvantages Narrow clinical perspective, ? sustainability, ? real world effectiveness Challenging to scale up or replicate, time consuming, intensive to initiate Target broad, time horizon long, not health specific approaches have, and the fact that programs are not health-specific. In addition, because community approaches have not traditionally set benchmark goals, their impact is not always measured. While the evidence is still emerging, hybrid models theoretically have the advantages of addressing both the biological and social determinants of health, the programs can be sustainable, and they can enhance resources in the community and clinical settings. The disadvantages are that they can be time-consuming, time-intensive to initiate, and challenging to scale up or replicate. Community health workers represent an example of a hybrid approach that is clinically centered. These workers are often lay community members who work with the health system to help bring community members into the clinic. Often with similar ethnicity and life experiences as the patients, they can act as facilitators. Community health workers can help educate patients and help them navigate the medical system, as well as link patients to services or advocate for care. Involving community health workers can improve patients’ access and help them decrease asthma symptoms or urgent care use or improve their blood pressure control. An example of a hybrid approach that is research-centered is the general field of community-based participatory research (CBPR). This research involves equitably including the community as partners in research pro-
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Challenges and Successes in Reducing Health Disparities: Workshop Summary grams. All of the participants share power, funding, and resources. Although a young field, CBPR has uncovered some important barriers to care that had not been considered using traditional research methods. Asthma Care is an example of this approach, and there are other CBPR interventions in the areas of pesticide use and obesity, among others. An example of a policy-centered hybrid approach is Racial and Ethnic Approaches to Community Health (REACH) 2010. This program is comprised of 40 separate projects that have been funded since 1999 with a goal of addressing disparities in priority health areas for certain racial and ethnic groups. REACH 2010 strives to ensure local leadership and community participation in programs that include prevention, education, and evaluation. Early results from the REACH communities versus controlled communities show that the REACH 2010 interventions have had some success with screening blacks and Hispanics for cholesterol. Some REACH communities have seen an increase in the number of American Indians taking blood pressure medications and a decrease in the number of Asian Americans who smoke. Although it must be stressed that this is a process that will take time, the REACH programs seem to be beneficial. Challenges of Hybrid Approaches There are several challenges to advancing hybrid approaches, including adapting the clinical enterprise, building effective partnerships, building support for empirical evaluation, and relying more heavily on public health ideals. There has been some progress in advancing hybrid approaches, but future efforts must move beyond translating materials into appropriate languages and cultural competency training. New interventions should maintain profiles of the communities they serve, collaborate with the community to meet standards for care, monitor the impact of what is being done to improve care in the community, and share how well the programs are reaching their goals. Throughout all of these steps, the community must be at the planning table. Building effective partnerships is another challenge of advancing the hybrid approach. Who should communities work with? How does a community participate in a successful partnership? How can a community build trust with a potential partner? How do groups discover each other’s strengths and work with them? How does a community cultivate expertise both within the community itself and across all the stakeholders? These are all questions that need to be researched and addressed. There is also a need to build the base for empirical evaluation. It is important to understand the impact of the community development and community partnership approaches on decreasing health disparities. Large projects often have no health component and some smaller projects evalu-
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Challenges and Successes in Reducing Health Disparities: Workshop Summary ate processes, but not all interventions evaluate outcomes. This is integral to advancing the hybrid approach and creating programs that can be replicated. It will also be important to take advantage of public health. The Future of Public Health (IOM, 1988) describes the public health mission as generating organized community efforts, applying scientific and technical knowledge to prevent disease, and promoting health and affecting policy. We interpret this to mean that public health could be the conduit between these silos by focusing on health and discovering ways to prove whether certain environmental exposures or experiences impact health. However, to date public health has not had a role in leading integrated community-based efforts with a strong evaluative component. This void is a huge missed opportunity. There are also challenges related to solving problems of organization, financing, and policy that must be addressed. Developing Hybrid Models—The Next Steps2 To advance a hybrid approach, it is important to understand the different issues that have impeded the development of collaborations that work across community and community-development health lines, explained Dr. Lawlor. Hybrid models should integrate community voices, community participation, and community ownership into disparity initiatives. These models should not be strictly clinical but should also involve education, housing, employment, and other fundamental areas that are integral to the process of improving disparities. They should have the ability to maximize resources, leverage different institutional players at the community level, and have a realistic chance of producing the kinds of evaluations and impact analysis that will be necessary in terms of advancing advocacy and policy agendas, to really promote hybrid models as viable approaches. The paper, “Community Approaches to Addressing Health Disparities” (see Appendix D), details how hybrid approaches have the potential to positively affect social determinants of health. These approaches can also mobilize the clinical enterprise, which has been the primary driving force of the disparities agenda. The challenge now is to determine how to knit together all these disparate organizations and stakeholders—community leaders, community-based organizations, health care providers, funding sources, the world of community economic development, academia and academic medical centers, the public health enterprise, policymakers, the delivery system—to work toward a common cause. It is a daunting task. There are conflicting political agendas, different groups vying for control, and categorical funding limitations, among other issues that correspond to 2 This section is an edited transcript of Dr. Edward Lawlor’s remarks at the workshop.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary each of these different constituencies. In addition, there needs to be a realistic approach for taking into account issues like resources and time frames and trying to determine how to have a quantifiable impact on disparities. When considering these issues, it is important to have an understanding of the relative magnitudes of money involved (Table 3-2). It is very striking to compare the different levels of funding that support various forms of community development and clinical and basic science initiatives versus programs in which community development and clinical services come together. Given the aspirations and goals for reducing disparities and the magnitude of the social and economic changes necessary to achieve that, the levels of available funding are very minimal. The National Institutes of Health (NIH) Human Genome Research Institute is a $484 million entity, and it is growing fast. There are new initiatives coming out of the NIH called Clinical Translational Science Awards (CTSAs) that are now in the order of $100 million, but quickly ramping up to $500 million in the next five years or so. The entire budget of the Agency for Healthcare Research and Quality for work on costs, quality, and outcomes of health care is $261 million a year. In contrast, the REACH projects, in many ways the leader of this kind of hybrid approach, is a $34 million enterprise. Considering that reducing health disparities is a national initiative, with daunting social and economic challenges, this is a very small amount of money to devote to attaining this goal. There are other community-development efforts as well. As discussed earlier, LISC is one of several community-development investment corporations in the United States, operating in many of the same communities of TABLE 3-2 Continuum of Spending from Basic Research to Community Development Basic Science Translational Programs Clinical Practice Hybrid Approaches Community settings NIH Human Genome Project Clinical Transitional Science Award Agency for Healthcare Research and Quality (research on health care, quality, costs, and outcomes) CDC REACH Local Initiatives Support Corporation (LISC)—for community development $484 million/year $500 million/year anticipated $261 million/year $34 million/year $1 billion/year
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Challenges and Successes in Reducing Health Disparities: Workshop Summary interest that are being considered here today. LISC distributes $1 billion a year via grants, loans, and investments for community development. Another example of this kind of funding can be seen by examining Bank of America’s community-development portfolio. This big, local, nationally known community-development investment bank, recently announced a $750 billion, 10-year effort to improve communities and community development. These are enormous investments; however, there are also tremendous overlaps in the agendas of the health disparities movement, both nationally and locally in community development. Pragmatic strategies must be developed to tackle challenges and vet existing structures, solutions, and models to effectively move the community agenda forward. To accomplish future goals, funding sources must be reconsidered, and accepted standard practices should include community members having an integral role in the decision-making processes and general community participation for community-improvement initiatives. There is a need to develop community models that have the prospect of influencing large population health indicators and models that can be replicated so that successful programs can be copied systematically across the nation. Structures for organization, governance, and funding exist into which efforts to reduce health disparities could be embedded. Regional Health Commissions, although they may be identified by different names, are organizations of varying size with the potential to bring together financing, community participation, and governance to carry out data-driven disparities initiatives. The Regional Health Commission in St. Louis is a version of this. Another example of a Regional Health Authority at the community level is the West-Side Health Authority in Chicago. For nearly 20 years this organization has been addressing community health indicators identified by representatives from the community and has tackled housing and employment concerns. Collectively, Regional Health Commissions are structures by which financing, participation, governance, and partnerships can all be focused toward reaching a common goal. It is important for banks and corporations that support community-development initiatives and the people who work on disparities issues to work together. There is a great deal of affinity between the agendas and goals of these different groups, and by combining resources and knowledge, much more could be accomplished. Collaborations such as these should be actively pursued. A variety of university–community partnerships have had varying degrees of success throughout history, and there are some famous examples of university–community partnerships in education and urban economic development. Last year, the University of Chicago announced a $100 million initiative to improve urban schools on the south side of Chicago. Although the university is providing substantial funding, the program is
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Challenges and Successes in Reducing Health Disparities: Workshop Summary designed so that the community, the public schools, and the university are all active participants in the planning process and are all working cooperatively to reach shared goals. If models could be developed that combined resources such as these to address health issues in communities, great progress could be made toward reducing health disparities. It is interesting to consider how CBPR enterprises could leverage their success by combining several CBPRs’ efforts from across the country to maximize their potential to reach community goals or by ensuring that their programs incorporate providers, provider networks, and other institutions in the community. There are also provider networks or systems around the country in which multiple health systems and health providers map to certain communities. Provider networks organizations operate collectively, sharing revenues and resources, but they also work together programmatically on health care concerns and other issues that affect population health conditions in a neighborhood. Many models could be adapted or modified for the purpose of creating hybrid approaches. It is important to think differently about how to measure, articulate, and value the outcomes of community-level investments. These investments should produce some return on investment in terms of improving health. Jim Keckman, a Nobel Prize recipient, has studied the returns on investment that are realized through preschool education. He is now promoting these programs nationally and getting support from many of the presidential candidates. The necessity of universal preschool is not a moral or an ideological argument, but rather a straight economic argument of the most rigorous sort. Universal preschool generates an extraordinary rate of return for society in general. It is this kind of thinking that needs to drive new investments in health and efforts to reduce disparities. Some current analyses, which have the character of a social return on investment, fully account for improvements in environment, health, and quality of life, among other things, and are similar to some of the discussion at this workshop on some of the traditional, narrow, cost-benefit, cost-effective analysis. There are even some very interesting and provocative articles now emerging in the disparities literature that make an economic case for some clinical and quality interventions. If programs move ahead with the kinds of collaborations that are being discussed here today, they will need to rely heavily on both new resources and new approaches to data. Many people believe there is very little capacity to share data, ideas, or technical assistance and support, for doing the kinds of community-based collaborations that are being discussed at this workshop. Like a cottage industry, there are several little fiefdoms of investigators and projects. It is very hard to discern from this array of programs which models are working, what lessons have been learned, who the right participants are, or what supports are required to conduct programs in any systematic way.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary A data agenda is implied in the work being described at this workshop that is really concentrated at the community level. In order for robust, community-wide initiatives to be built and defended, there must be new community infrastructure and resources developed at the community level. Communities must bring together an array of social and economic data, rather than relying on standard epidemiology or health indicators alone. New strategies are needed for evaluating the health impact of community projects. It will be necessary to find ways to bring together very different traditional sources of data—racial, ethnic, and geographic—at a community level. For example, the National Health Plan Collaborative is bringing together data sets from providers, payers, and demographic and epidemiological data, for issues related to health care. This kind of structuring should be done at the community level, ideally combining social and economic components as well. As mentioned earlier, one of the avenues with a great deal of energy and innovation is participatory research. Many of these research efforts have been largely driven out of universities and now are in the purview of investigators. We believe that more and more effort and support needs to go to the community portion of those kinds of collaborations. These programs should increase community capacity and influence through resources, funding, and training. As investments are made in researchers’ and investigators’ capacity to do this kind of work, the communities must participate as equal partners, and there should be investments in activities, training, and leadership development specifically for community members. Current participatory research approaches are episodic. They come with finite funding, and they go away when the funding is depleted. Over time, this process tends to be destructive. Communities become cynical and develop disdain for the process, initiatives are built and not continued, faith is lost, and the ability to sustain and have positive outcomes is unattainable. There should be improvements in funding and reporting requirements through the development of frameworks for funding that encourage continuity of programs in the communities in which they are operating. Ideally, new models should be developed that integrate funding, data, community engagement, and evaluation. Participatory research projects should be promoted that have broader benefits for everyone involved, beyond the kind of research outputs and products previously described. There are ways, in fact, to organize projects in terms of reporting, training, and interactions with communities that maximize the potential for making lasting improvements. It is also important to consider community involvement in clinical enterprises in which communities and clinical investigators work in shared arrangements. Some of the CTSAs coming out of NIH require bench to bedside care. Increasingly, as the CTSA initiative has evolved, this definition
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Challenges and Successes in Reducing Health Disparities: Workshop Summary has been changed to include bench to bedside, to providers, to communities. There is, in fact, an entire community engagement part of this enterprise now. The potential opportunity exists for creating more of these kinds of community–clinic collaborations, although there is no guarantee that this is the way that these initiatives will evolve. Considerable effort is needed to ensure that communities maintain an active voice in these projects and that community priorities are reflected in subsequent programs. Assurances are also needed that there is not simply token involvement of communities in what is largely still a clinical enterprise. In additional, researchers should be required to report the community impact of their programs to funders, members of the public, and members of the impacted communities. Conclusion Place-based geographic ideas should be taken very seriously. The time has come to think in a very rigorous way about each place-based community and to develop a deep understanding of the social and economic determinants of health outcomes in it. Intensive partnerships should be developed with community institutions and leaders to think about how money should be allocated and how resources can be garnered from some creative sources. There must also be a plan for rigorously assessing whether measurable progress is being made toward addressing health outcomes in particular communities. To reach health disparity goals, a very different commitment is needed to partnerships than has been characterized in many disparities initiatives to date. The set of potential partners for these community approaches should be considered in very broad and ambitious terms. Already faith-based initiatives have been involved in communities, schools, other community institutions, and in such programs as the REACH projects and other disparities programs. Yet there needs to be a much broader understanding of who the relevant players should be and specifically who should be developing community-level interventions. Serious thought should be given to embedding health agendas into ongoing community-development initiatives. Some of these initiatives are gigantic, not just in resource terms, but also because they involve so many community leaders who devote enormous amounts of time toward satisfying these initiatives. Many community-development programs in the United States claim that they improve the health of myriad communities. However, there are very few, if any actual health indicators, goals, outcomes, or strategies associated with those large projects. There should be some serious reconsideration of existing community-development initiatives and institutions, since these well-financed organizations are in a
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Challenges and Successes in Reducing Health Disparities: Workshop Summary position to dramatically affect some of the disparities seen in the United States today. Some serious attention is needed to data at the place-based level—specifically, data aggregating different sources that are shared with residents. Those data should not just be academic, but a vehicle for ongoing dialogue and shared agenda with the residents themselves. Used in this way, data can be extremely powerful. There are some relevant funders at this workshop who think about funding investments in health disparities in very different ways. As in other types of social policy and programs, many organizations have organized their public and private resources around particular bands of intervention: health, social development, community economic development, and the like. In order to truly see progress, there must be collective agreement and sharing of the resources across these realms to make these kinds of initiatives of scale succeed. Medicaid and public dollars must be considered in this equation, along with foundations not typically associated with disparities, such as the Ford Foundation and the MacArthur Foundation. A way must be found to combine all available expertise and funding sources so there can be a measurable impact at the community level. For years, concluded Dr. Lawlor, I have dreamed that we could create the equivalent of an investment bank for health in which capital from some of the big community-development initiatives and the provider sector could be pooled, and methods could be developed to focus and marshal those resources on investments in communities, with the results measured and evaluated. If this were to happen, we would expand the potential of our good faith and goodwill to individual projects and have the potential to truly alleviate health disparities. REACTION AND DISCUSSION3 Following the presentation by Drs. Horowitz and Lawlor, several Roundtable members, sponsors, and audience participants joined the discussion. This provided attendees with an opportunity to comment on what they had heard, share information about programs and issues about which they were familiar, and ask questions or express opinions. Several topics were discussed during this time, including leadership, funding, intermediaries, community workers, and community capacity. 3 The following discussions were edited and organized around major themes to provide a more readable summary and to eliminate duplication of topics.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary Leadership Dr. Nelson observed that significant monetary and personal investments have been made thus far on community-development efforts and the importance of incorporating evidence-based practice has been emphasized, but he questioned the lack of emphasis on leadership skills or training. Traditional forms of leadership created at the institutional and community levels may not be sufficient to work on these problems. He maintained that some thought needs to be given about future investments in leadership and what programs focusing on leadership might look like. Ms. Glover Blackwell countered that she believes that there is a great deal of wisdom about how to build leadership because this has been done for quite some time. The Kellogg Foundation has a long history of investing in leaders, particularly leaders of color. There are also many leadership programs in different cities, such as Leadership Atlanta and Leadership San Francisco, among others. There have been a series of academic scholars who have looked at leadership and tried to see the role that it can play, and a number of people from the civic and business worlds have spent time trying to understand the elements of leadership that are important for achieving goals and objectives. We are actually fortunate if we decide that we need a new generation of leaders, because there is a great body of knowledge about how this can be done, she said. What is lacking is a commitment to invest in a new generation of leaders, cautioned Ms. Glover Blackwell. The problem is not one of knowing how to create leaders, but rather an absence of public will. We will not have the opportunity to build on the extraordinary diversity, the most important asset this country has, unless we figure out a way to maximize the potential that diversity brings and incorporate this into leadership at every level. We need to figure out how to develop strategies that start at a young age, so young people are encouraged to become leaders. Individuals could start in the leadership pipeline in colleges and professional schools, but there should also be flexibility to allow for people to become leaders in parallel ways. We should encourage them and provide them with opportunities to gain more exposure to mentors or participate on commissions or other hands-on activities. Funding Dr. Wong asked for further clarification about Dr. Lawlor’s assertion that a disproportionate amount of money for health care is being spent on bench research—stem cell research, the genome project—rather than community empowerment and equity programs, which are at the core of social and environmental determinants of health.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary Dr. Lawlor agreed that the allocation of resources was the central issue, stressing that communities can mobilize goodwill and community leadership, but, ultimately, in order to truly address underlying social determinants of health, thought needs to be given to where resources are being utilized and the magnitude of the differences in spending priorities between research and community priorities. Resolving these issues would require a fundamental change in political policy, resulting in a more equitable allocation of available resources. Not all attendees held this position. Ms. Glover Blackwell noted that when she saw Dr. Lawlor’s diagram showing the distribution of funding, she had a different reaction. The issue is not truly about the availability of funding, but rather whether the money is being spent ineffectively, she said. LISC, for example, leverages billions of dollars for low-income housing, but we should think of all the private developers that build housing. Much of what they build is affordable, but the people about whom we are most concerned do not have any access to those homes. The same can be said for the whole area of youth development and all the money spent on development and after-school programs. It is too narrow to think that a program designated specifically for health disparities is the only program working on health disparities. Dr. Lawlor added that available resources at the community level should be more transparent. In Chicago years ago, there was an accounting exercise before the transformation of public housing that looked at all the funding streams for such programs as child welfare, special education, and so forth. The findings were astonishing, but they were not presented in a way that helped to establish how the resources should ultimately be allocated. It is imperative that the community understands what resources are available and how they could be deployed to actually affect some of the health indicators that need to be addressed. Dr. Levi commented that while participants are asking community groups to design programs that are sustainable, there is also an obligation on the part of the federal government and other funders to make sure that their funding streams are sustained as well. Community members must look for the multiple funding streams and learn to integrate those funding streams into something that creates a true community-wide approach. There has also been discussion about new leaders who think along these lines at the community and local level. Perhaps the federal government should create a new structure that makes it easier for people to make changes at the local level. There was a logical reason for why each of these little funding streams existed when they were created, but they do not make sense in practice. Perhaps there is a model to adopt whereby the system could be restructured to make it easier for people on the ground to take these multiple funding streams and make some sense out of them.
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Challenges and Successes in Reducing Health Disparities: Workshop Summary Dr. Lawlor acknowledged that it is difficult to change the existing bureaucracy, but suggested that the Roundtable could promote the idea of bringing together streams coming out of the Department of Housing and Urban Development, for example, and funnel the funds to the various areas of concern for disparities. Although difficult, this would be fundamental for change to occur. Many states, and in some cases, towns and municipalities, are thinking about making changes along these lines. Although the effort is unfunded, Massachusetts has included disparities issues and the necessity of organizing a disparities agenda as part of its State Health Reform initiative. Disparities are grouped separately, and the state is working to determine how to overcome the structural barriers so that financing will be available. Ms. Glover Blackwell pointed out that there is not universal agreement about the wisdom of combining all of the funding streams for designated entities. At one point in time, people who are advocates for social justice were very happy to see the federal government fund programs and be very categorical and specific about how the funds were allocated at the local level. However, many blacks, Hispanics, and others did not benefit from these funds, learning that they could not trust their local or state government to provide resources to their communities. Now there has been a shift, and people who have come out of the poverty movement, including blacks and Hispanics, are now in positions of power. There is a great deal of wisdom about how to make more effective use of programs even if funding for these programs is categorical, if communities can be more creative. But it is important to remember the lessons of the past. Dr. Lurie said that while she has been working on public health issues and visiting communities around the country, she has seen little agreement about what public health is or what it ought to do. Some communities are taking on projects simply because they have received a grant to work on a specific health issue, regardless of whether or not that issue is a priority in their community. Not all community leaders know what the pressing health issues are in their community; they may not be doing regular community assessments or may have only outdated data. They stay afloat by writing grants and working on whatever they can get money for, whether it targets a specific problem in their community or not. This issue about federal funding streams is extremely important, but there also needs to be a system of accountability at the state or local level. Several other speakers have talked about the need to demonstrate that programs are getting results, she said. It seems like that piece would have to come together with more flexibility and yet, we do not have any great data systems or process for demonstrating those results. Part of the solution, Dr. Lawlor responded, would require better organization at the community and local levels. Organizations must produce adequate and appropriate data and carry on productive dialogues with the
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Challenges and Successes in Reducing Health Disparities: Workshop Summary community, and then translate that knowledge into compelling, important, and effective interventions. That is why it is important to know what structures naturally exist in communities and cities that might be the repository for that kind of information, analysis, and source of community input. Ms. Glover Blackwell countered that she does not think that the structure naturally exists in a community, but rather it has to be consciously created. She referred to it as a community-building intermediary, an organization in the community with the responsibility of gathering and interpreting community data so that there is a shared sense of what the challenges truly are. Community-building intermediaries must be cognizant of what is happening in other parts of the country or around the world to see what is making a difference, and this organization must work with leaders in the community to put policies in place that incorporate what is working elsewhere so they can adapt it for their community or situation. Power is in the hands of those with the money, commented Dr. Rhee. The NIH budget is $26 billion, yet only $2.6 billion a year are spent on disparities, despite the fact that NIH has identified health disparities as one of its top three initiatives. That $2.6 billion can still have an impact if you consider how much a program like REACH 2010 has accomplished with only $34 million. Yet how much of that $2.6 billion really goes to communities? How much trust or risk is really given to the communities? Ultimately, where the money goes is where the control really lies. Fundamentally right now, control is not really in the community’s hands. Intermediaries Jill Thompson from the Child and Family Health Coalition in St. Louis commented about the role of her organization as an intermediary. One of the challenges her organization faces is that traditional funding streams are from clinical settings conducting research or from the university setting, and intermediaries fall somewhere between these two entities. Despite the fact that intermediaries conduct effectual research and work, they are straining to remain funded. The hybrid model leaves out the intermediary, and she would argue that they should be added. What role should intermediaries play, and how should these organizations go about getting funded, when even foundations question the importance of intermediaries, since they are not touching people directly? The Missouri Foundation for Health was singled out by Ms. Thompson as one of the few funders that recognizes the importance of an intermediary and has been very generous to intermediaries in the St. Louis region. The Specialist for Health Policy at the Missouri Foundation for Health responded. The grant for the Child and Family Health Coalition was a community assessment grant. The Missouri Foundation for Health has given
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Challenges and Successes in Reducing Health Disparities: Workshop Summary community assessment grants to a number of intermediary organizations in the city and state that focused on such health concerns as HIV in the community or such issues as determining why people are not getting necessary care or monitoring whether children are receiving adequate health care. The Missouri Foundation does not believe that an organization has to provide direct services to receive funding. In a way, the foundation translates information so that the community understands what is happening in the system. The Missouri Foundation also funds people who can translate information to the community, such as advocates, or provide rolling grants for advocacy. This is a part of their theory on change and promoting health in Missouri through working with direct services, but also supporting change through the gathering and dissemination of information. Community Workers Ms. Boyce commented that she does not like the idea of community health workers, although she has been in public health for 30 years. Community health workers used to be called outreach workers. Community workers have been relabeled, but there has not been a career path created for them. If we were really courageous about workforce issues, she said, we would look at these workers, because a disproportionate number of people from these communities are locked into these positions. If we can move them into professional positions, we would not have to rely so heavily on people on the community to do ancillary kinds of activities. A member of the audience responded that it is important to make sure that the community has a voice in the decision-making process in clinical and funding settings. For example, if the community has a real voice in a health care setting and someone was trying to move peer educators into becoming community health workers, community members could veto the change. In that way, the change could be prevented or perhaps some of the people would change but not others. Independent voices must sound the alarm when things are going wrong, she continued. It is important to have the right people at the table when decisions are being made. The NIH staff needs to be trained so that they can be active reviewers by ensuring that the affected community has an active part in the grants that are awarded. There needs to be thought given to the needs of the community and recognition that community representatives must have decision-making ability for health-related issues. Community Capacity Ms. Kubisch works in the area of community development, community change, and community building and she commented about the importance of community capacity. In the convergence between race and poverty that
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Challenges and Successes in Reducing Health Disparities: Workshop Summary happens at the place or the community level, community capacity has systematically been undermined during the last 50 years in poor urban and rural areas that are primarily communities of color. While it was interesting to hear about the amount of money that went into community development through LISC and other kinds of health care and investments of health, people should not leave here with the impression that there are all kinds of nascent community development capacity out there in poor communities, she cautioned. The $1 billion figure mentioned in Dr. Lawlor’s presentation consists almost entirely of loans. The Community Development Corporation actually was started in the mid-1900s, with a view towards comprehensive neighborhood revitalization similar to what is being talked about here today, she continued. It endeavored to cross the divide between physical, economic, social, and political revitalization of neighborhoods. However, over time, for political reasons and for funding reasons, it became a kind of low-income housing producer. So although such institutions are potentially sources of great community revitalization, they are not doing it. Over the course of the last 20 years, some institutions in poor neighborhoods have become affordable housing producers. They are service providers and they have settlement houses. They are faith-based organizations that are trying desperately to integrate services, to integrate the funding streams, and to do more ambitious transformation of neighborhoods. These are the most underresourced, low-capacity institutions that there could possibly be, stressed Ms. Kubisch. They exist under grants that do not provide overhead. They work on a shoestring budget. They cannot do community data collection. They cannot do any of the things that we were talking about in terms of local intermediary work. Their efforts are not being led by data analysis about where their communities are. They cannot organize. They do not have money for community organizers to try to empower the community and make demands on the system. Before turning over to the communities the responsibility of doing the work that is being talked about here, we have to realize that a lot of capacity building has to be done. It is wonderful to hear members of the health community say that this is the direction they would like to move in, continued Ms. Kubisch. The health community has massive resources. They are powerful institutions in the form of urban hospitals, and there is a great deal of money devoted to health initiatives. Can partnerships between the health community and community development be formed that value the importance of building the capacities to do the work cross-sectorially? Can the health community bring power, money, resources, and political pull to really help make this happen? Community groups know what the communities need, but they also need powerful sectors who understand that there is a double bottom
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Challenges and Successes in Reducing Health Disparities: Workshop Summary line: a social bottom line and an economic bottom line. That value system is necessary to help community advocates do the work they have been trying to do for a long time. Community capacity is necessary at the organizational level in terms of being able to do the data analysis, community organizing, and advocacy that will allow these funding streams to be pulled together. REFERENCE IOM (Institute of Medicine). 1988. The future of public health. Washington, DC: National Academy Press.