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

Chapter: 4 Successful Clinical and Community-Development Strategies

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Suggested Citation:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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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Page 74
Suggested Citation:"4 Successful Clinical and Community-Development Strategies." 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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Page 75
Suggested Citation:"4 Successful Clinical and Community-Development Strategies." 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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Page 76
Suggested Citation:"4 Successful Clinical and Community-Development Strategies." 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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Page 77
Suggested Citation:"4 Successful Clinical and Community-Development Strategies." 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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Page 78
Suggested Citation:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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:"4 Successful Clinical and Community-Development Strategies." 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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4 Successful Clinical and Community- Development Strategies T he Racial and Ethnic Approaches to Community Health (REACH) 2010 and the Steps programs were presented by Drs. Horowitz and Lawlor as representative examples of a hybrid model that combines clinical and community approaches to community interventions. An impor- tant component of the workshop was hearing presentations from people who implement such interventions in their own communities. These indi- viduals shared information about how their programs were initiated, how they have developed, what some of their challenges have been, and why and how they are experiencing positive results. Two of the presenters represent programs supported by REACH 2010, a $34 million a year enterprise administered by the Centers for Disease Control and Prevention (CDC). The national REACH initiative is a unique effort to address racial and ethnic health disparities as part of the Healthy People 2010 initiative. Since the inception of the national REACH initia- tive, 40 communities across the country have been awarded REACH grants to develop plans for tackling a specific disease in their community and then carrying out the plan through community-wide initiatives with minimal input from CDC. Ms. Charmaine Ruddock, the project director from Bronx Health Reach, and Dr. Janis E. Campbell, the principal investigator for the Oklahoma REACH 2010 Project, spoke about programs that are being implemented with REACH 2010 funding. Ms. Nancy Williams, acting lead for the Steps to a HealthierUS program, a 5-year initiative spearheaded by the CDC for community-level programs, presented information about that program. Ms. Mary McFadden, the program director for Steps to a 69

70 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES HealthierNY, and Ms. Lisa Pivec, the director of Cherokee Nation Health Services, presented information about programs that have been developed and implemented with combined funding from REACH 2010 and Steps. BRONX HEALTH REACH Ms. Ruddick presented information about Bronx Health REACH, a program operating in the south Bronx area of New York City. The Bronx REACH community is predominately made up people of color and the resi- dents are very poor; this area is one of the poorest congressional districts in the nation. By almost every health measure, the Bronx Health REACH com- munity falls short in comparisons to other New York communities and when analyzed against national statistics. The death rate for blacks with diabetes in the southwest Bronx is twice that of those living in the rest of New York City. Black men are more likely to get prostate cancer, and the death rate in the southwest Bronx is 50 percent more than the rest of New York City. These are just a few examples of the health disparities in this area. The Bronx area has had a troubled past. In the 1970s, it was an area devastated by poverty and crime, and residents were fleeing. There was inad- equate or substandard health care, housing, and education, among myriad other societal, social, and economic problems. Many of the organizations that had previously located offices in this part of the city, such as the New York City Department of Health and the American Diabetes Association, closed their offices and relocated to other areas. It was not until the 1980s and 1990s, when the Institute for Urban Family Health established itself by building health centers in the Bronx, that things started to turn around for this community. In 1999, CDC announced their initiative to address racial and ethnic disparities by awarding grants through the REACH program to communities across the country. The new Bronx Health REACH took the next year to plan a program for their community and worked to have the Bronx become a REACH grantee. A Year of Planning During the initial planning year, Bronx Health REACH conducted a l ­iterature review and held a series of 10 focus groups to help create and mold the coalition action plan. Very early it was determined that the com- munity initiative would focus specifically on diabetes care and prevention, and the project would benefit the entire community, not simply one racial group. Hispanic and black residents were actively recruited to participate in the focus groups to ensure that the results of the discussions would repre-   This section is an edited transcript of Ms. Charmaine Ruddock’s remarks at the workshop.

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 71 sent a broad cross-section of opinions. When the results of the focus group were tallied, participants had identified three major health concerns—stress, behavior, and a distrust of the health care system—that they believed con- tributed to their poor health outcomes. These health concerns became the focus of the Bronx Health REACH initiative. According to the findings of the focus groups, stress was rampant in the community because of pressures exacerbated by living in a depressed socioeconomic area and a belief that racism was pervasive in the commu- nity. Individual health care behavior was targeted because residents believed they had inadequate resources and information and because health concerns had to compete with other basic needs, such as housing. The focus groups also showed that people had a deep distrust for the health care system in the Bronx. Participants expressed concerns about enduring disrespectful treatment from health care providers, complaining about a lack of two-way communication with their doctors, nurses, and other health care workers. Many of the participants in the focus groups felt helpless, believing that they were powerless to advocate for themselves or their families in the health care system. Other interesting information was gleaned from the focus groups as well. It was discovered that there were clear differences between the atti- tudes and behaviors of men and women who participated in the focus groups. Men believed that they needed to show restraint when they dealt with people who they believed held positions of power. They thought a great deal about how other people would perceive their behavior, and this deterred or prevented them from advocating for themselves or others. Men in the focus groups did not want to cause any disturbances and preferred to have other people work to solve their problems, leaving them to get whatever came their way. The women, in contrast, took a more assertive approach. The focus groups also found that the people in their community believed that there was a significant difference in the care that they had access to when they were on public assistance—Medicaid, Child Health Plus, or Family Health Plus—compared with the care they received when they had private insurance. When the community action plan was put together, there was a rec- ognition that the initiative must address three distinct groups—community residents, health care providers, and advocates or leaders. For the residents, it was believed that if they were provided with the right health informa- tion, they would become more active participants in their own health care. They would regain the power to demand high-quality care for themselves and their families and mobilize their community into making positive changes. For health care providers, it was determined that they needed to become more aware of health disparities in general. During presentations to ­providers, they denied that health disparities existed and blamed ongo-

72 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES ing problems on the poor health care system. Such interactions as these motivated program planners to add an educational component to the action plan to educate health providers about health disparities facts that were without dispute. Providers also needed to provide respectful and responsive care, offer culturally appropriate and sensitive care to their patients, and improve the quality of care for their diabetes patients. Finally, for advocates and leaders, there was a desire to mobilize and raise their awareness and knowledge about disparities with the hope that this information would motivate them to fight for public policy and regulation changes and advo- cate for new health care legislation. Bronx Health REACH was less concerned about programs and more concerned about creating a movement. Many of the community leaders had been active participants in the Civil Rights Movement who fought for neighborhood reclamation in the 1970s and 1980s. Because these commu- nity leaders wanted to radically change the community’s experience with health disparities, they motivated the coalition to seek widespread change rather than instituting individual programs. Only a movement could create the extent of change that the community desperately needed. Moving Forward The Bronx Health Reach initiative was announced with fanfare at an event featuring elected officials, pastors, congregational members, and over 700 community residents. The key objectives of the Bronx Health REACH initiative were to develop and implement model community programs; institute sustainable health improvements through policy, system, and insti- tutional changes; develop a health policy agenda; and mobilize community residents around that agenda. The coalition also seeks to educate elected officials about the changes that need to be put in place to improve the health care system. Since its inception, Bronx Health REACH has worked hard to develop trust in the community. They have formed partnerships with such organiza- tions as the American Diabetes Association and the New York City Depart- ment of Health, two organizations that are now interested in reestablishing a Bronx presence. With the Institute for Urban Family Health leading their efforts, they have also formed partnerships between coalition members and other organizations to bring about change in the community. From a core group of five members, 40 coalition members now support Bronx Health REACH, and this group includes health care providers, public law- yers, after-school programs, advocate groups for diabetes, and researchers, among others. The Bronx Health REACH program has been both a nexus for change and a catalyst for change. Initially the Bronx Health REACH initiative started with a small num-

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 73 ber of programs: starting diabetes education in the churches, creating an after-school nutrition program, and creating a small fitness program. The changes and programs that have developed in subsequent years have been the result of an ongoing community-based participatory approach. After the initial nutrition programs were started, community members expressed interest in expanding the initial program offerings and creating more oppor- tunities to learn about nutrition. Feedback such as this has motivated pro- gram planners to constantly modify existing programs or implement new plans. A culinary initiative was started, a Fine, Fit and Fabulous nutrition and fitness initiative began, and Got Sugar, a campaign geared toward dia- betes education, was implemented. Separately, local pastors kept pressure on the program planners to work for public policy advocacy initiatives. In 2007, a new Youth and Nutrition Program began, and Bronx Health REACH participated in a national initiative called the 50 Million Pound Weight Loss Challenge. With funding provided by the National Institutes of Health, another new program called Health Disparities: Navigating the Health Care System Workshop Series, was started. There have also been a series of focus groups and surveys to determine how to best communicate health disparities concerns, how to recognize problems related to dispari- ties when they were encountered, and how to motivate people to mobilize around health disparities issues and work for change. This work has had an impact on local faith-based organizations. ­Pastors now routinely incorporate health messages into their weekly sermons. The pastor of the largest church in the Bronx established a Wellness Center after becoming convinced that the church needed to help address the risk fac- tors for diabetes and provide church members with a constructive way to combat the disease. Many churches changed their culinary norms by finding new ways to make traditional dishes. In this way they could maintain the foods that held historical significance for community members but offer healthier options to parishioners. The churches have also included health advisories in the church bulletins. The Bronx Health REACH initiative has motivated many of the churches to redefine their role in the community. Many churches now see health equality as a part of their Christian discipleship. Although pastors did not initially recognize helping church members to improve their health as part of their role as a community leader, there has now been a radical shift and several pastors have become spokespersons on health disparities, both inside and outside their pastoral work. Many pastors have accompa- nied Bronx Health Reach representatives when they have led delegations to speak with the state commissioner of health, the mayor, and the state attorney general’s office to advocate for change. Two pastors wrote theolo- gies of sickness and equality last year, as a way of encouraging their fellow pastors to think of health disparities as an issue they need to adopt.

74 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES There has been a great deal of progress with the nutritional programs that were created as part of the diabetes initiative. The programs have grown from modest programs to ambitious efforts to address the nutri- tional environment in the community. Bronx Health REACH has worked with schools and after-school programs, starting a restaurant outreach and bodega (small grocery store) outreach program. It has also worked with communities, supported agriculture initiatives, and started a public policy initiative to address obesity in the Bronx. The efforts of the Bronx Health REACH initiative have had a signifi- cant impact. Last year, the New York City Public Schools adopted a low- fat or no-fat milk policy for all the schools in the system. Bronx Health REACH was instrumental in writing a nutrition and fitness policy for the schools in the district, which was adopted by the school’s chancellor for implementation in all of New York City’s elementary schools. They also c ­ ollaborated with the Bronx District Public Health Office and the New York City Department of Health on a bodegas initiative to have them sup- ply more low-fat or no-fat milk. Bronx Health REACH has also recruited 11 restaurants in the Bronx to highlight their healthy menu options. The Bronx Health REACH program has identified and established a seven-point advocacy agenda for public policy in the health care sys- tem. The first item on the agenda is to end discrimination in health care facilities, which was based on research on access to care, particularly for specialty organizations. From this research, a monograph called Separate and Unequal: Medical Apartheid in New York City was developed and published in 2005. This monograph had a significant impact on subsequent changes in health care provided by local hospitals. One local hospital, which initially sent out a press release refuting many of the concerns raised in the monograph, recently announced that it had addressed many of the issues raised in it. There has been extensive public education outreach and advocacy, and a video has been produced featuring individuals from the community talking about their experiences with health disparity. Several lessons have been learned over the years through these pro- grams. The most important has been to establish relationships with the right partners and to work hard to cultivate and maintain those partner- ships over time. There is a recognition that for effective solutions to be recognized and implemented, they must be planned and initiated using a community-based participatory approach. Finally, if community members are provided with information and motivated to raise their awareness, they can take ownership and mobilize to improve, to reduce, and, hopefully one day, to eliminate health disparities in their communities.

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 75 OKLAHOMA REACH 2010 When you give community members the opportunity to find solutions for their own community’s problems, it is amazing what they come up with, remarked Dr. Campbell, the principal investigator of the Oklahoma REACH 2010 Native American project. The president’s goal is to elimi- nate health disparities experienced by racial and ethnic minority popula- tions in key areas by 2010. REACH 2010 demonstration projects, such as Oklahoma REACH 2010, are community-driven to mobilize and organize resources, with the goal of creating effective and sustainable programs and eliminating health disparities of racial and ethnic minorities, one commu- nity at a time. Oklahoma REACH 2010 will receive funding for only a few more months; therefore the immediate focus has been to create effective, sustainable programs. The community has been remarkably effective in accomplishing this goal and starting to work toward eliminating health disparities, Dr. Campbell noted. Oklahoma REACH 2010, one of the original REACH grantees, was originally funded in 1999. Oklahoma REACH 2010 is a coalition made up of the Absentee–Shawnee and Cheyenne–Arapaho Tribes, the Cherokee, Chickasaw, Choctaw, Pawnee, and Seminole Nations, the Indian Health Care Resource Center in Tulsa, the Oklahoma State Department of Health, and the Wichita and affiliated tribes. The coalition is focused on reduc- ing health disparities in cardiovascular disease, diabetes, and any associ- ated risk factors through increased availability and promotion of physical activity at a community level. There was confidence that this goal would be supported by community members, and it could serve as a catalyst for other efforts. Oklahoma has several REACH 2010 communities and the second larg- est American Indian population in the United States. The REACH ­projects cover about 75 percent of Oklahoma’s American Indian population, although of the 39 federally recognized tribes in the state, only 8 are part of the program. There is a great deal of work yet to be done in Oklahoma. The Oklahoma REACH 2010 project was one of only two ­projects focusing on American Indians out of 42 grantees originally awarded Phase II fund- ing. There are five American Indian grantees in the core capacity, meaning that their programs are funded at a significantly lower level than the other projects receiving funding.   This section is an edited transcript of Dr. Janis Campbell’s remarks at the workshop.

76 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES Tenets and Planning The first few years of the Oklahoma REACH 2010 project were very challenging for all of the coalition partners, but it was during this time that a set of tenets and principles was developed to guide the coalition’s efforts. These tenets include maintaining community control, equal responsibility and equal benefits, shared data, and tribal sovereignty. The tenet of commu- nity control had a significant impact on how the funding for the Oklahoma REACH 2010 project was disbursed to the different community partners. Rather than having the money controlled by one entity, a distribution sys- tem was devised whereby CDC would send the funding to the Oklahoma State Department of Health, which, in turn, would distribute the funding directly to the participating communities through subcontracts. The 333 actively participating communities, guided by a set of common principles, maintained the right to hire, fire, make decisions, and control their projects. This community control, as well as the flexibility and trust established and maintained by CDC, have been integral to the success of the project. Ensuring equal responsibility and equal benefits was a tenet adopted very early. Every tribe or nation would receive the same amount of funding for its programs regardless of size or membership, but they would also be expected share equally in the workload. This tenet had a very positive effect on the success of the program, since tribes and nations vary considerably in their size and there had been concern that programs would be domi- nated by the larger entities. All data are shared and cannot be presented or published without the Steering Committee’s knowledge and consent. To date, project dissemination has included 67 national presentations, 3 international presentations, 3 peer-reviewed articles, a book chapter, and a report. ­Government-to-government relations and tribal sovereignty have also been integral to establishing how the Steering Committee and the programs work. Successes The Oklahoma REACH 2010 coalition has enjoyed many successes. The coalition has helped establish a shared vision and mission among all of the partners, and programs have been implemented in every participating community. For 8 years, this disparate coalition of tribes and nations has worked together collectively to reach common goals. This is a powerful testimonial to the confidence they put in this project. Every participating community has started a new physical activity program or expanded an existing one and several communities have created programs with objectives that move beyond the initial goal of increasing physical activity. Although physical activity remains the primary focus, programs have been developed

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 77 that focus on nutrition, education, secondary prevention activities, tobacco prevention, and health screenings through Indian Health Service or Tribal Health Services. Staffing and infrastructure have been established, and approximately 25 full- and part-time tribal staff members have been hired in the commu- nity, although many are only partially funded. Nearly 75 community tribal members have been trained to lead different physical activity programs, and approximately 200 certified training sessions have been held for American Indian community members. Community involvement and participation have been phenomenal. Community partnerships have been a huge part of the success of REACH 2010. Initially, each community partner received approximately $90,000 in seed money to develop new programs. Over time, however, many coalition partners have developed partnerships with other groups in order to pool resources and strengthen their programs. One example of this can be seen with the Cheyenne–Arapaho Tribe, a fairly large tribe consisting of about 12,000 members spread out over more than 10 coun- ties in western Oklahoma. By demonstrating the success of their physical a ­ ctivity programs, they were able to convince the Gaming Commission of the Cheyenne–Arapaho Tribe to allocate 7 percent of the gaming funds to their programs, a contribution amounting to over $1 million a year. Without the seed money provided through the Oklahoma REACH 2010 program to develop and implement the pilot program, the partnership with the Gaming Commission would never have taken place. Other partnerships have been forged with local colleges to create health and physical education programs and with the Indian (or Tribal) Health Service, one of the largest partners in almost every tribe, which provides community health repre- sentatives, wellness centers, and health promotion and diabetes programs. Schools, firefighters, police, and local fitness gyms have also been partners throughout the life of the program. The Oklahoma REACH 2010 project has an enormous number of exer- cise activities. Each week there are at least 75 activities and there are over 1,000 recreational events each year. Over 5,000 community members have participated in programs, 3,000 of whom are current, active participants who turn in logs documenting their progress. All of the programs have started, expanded, or enhanced a physical activity program in their area. Since the REACH 2010 project began, tribal funding for environmental changes has become a priority. Wellness centers and exercise trails have been built, and walks and runs have been organized. Before starting the REACH programs, the Chickasaw Nation did not have any runs in the area; they now have four to five each year. These runs are extremely impor- tant because they motivate people to train over a longer period of time and because they are huge social events for the communities. Hominy, a small

78 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES town in southeastern Oklahoma, hosted a Big Foot Run, which attracted 275 runners to the town. There have also been policy shifts over the years. Some have been minor, such as switching from sugary drinks at meetings to water or Diet Coke. Others policy shifts have been more far-reaching, including the implementation of more than 30 ambitious policies that affect the availabil- ity of healthy food choices in the tribe area, changes related to smoking and exercise, and environmental changes. These changes have been challenging to achieve but have been effective for stimulating community change. There have been many changes in the Oklahoma REACH 2010 com- munity since the program began eight years ago. Although obesity has not decreased overall, the number of individuals who are getting obese has been decreasing. Disparities have been reduced, especially in terms of physical activity. American Indians in Oklahoma are now just as likely to be physi- cally active as the rest of the population. Successful fundraising has taken place through such programs as the Cheyenne–Arapaho partnership men- tioned previously and through programs started by the Cherokee Nation, a group that receives substantial support for programs started under the REACH project. The Indian Health Care Resource Center of Tulsa solicited support from foundations and other sources. It now has about $1.5 mil- lion in funding that was not available before the REACH program began. And a small tribe, made up of 2,500 members in Anadarko, has created a sustainable program by obtaining funding from a local university and other tribes to ensure that all of its programs will continue even if REACH fund- ing does not. If the Oklahoma Reach 2010 project ends in two months, those programs will continue. It is ongoing efforts such as that will have long-lasting effects on these local communities. Lessons Learned Several lessons have been learned from the Oklahoma REACH 2010 initiative. Most importantly, people should understand that native com- munities can successfully implement programs. When communities are developing new programs, training and networking are critical. As a result of the REACH community training efforts, there are now physical activity specialists who are experts in the REACH communities. Communities must also control their own programs if they are going to be sustainable. Finally, maintaining trust between the project coordinators or sponsors and com- munity members is critical. Researchers or people who implement programs must be trustworthy, and they must also trust the community. One of the reasons the Oklahoma REACH programs have been suc- cessful is because the methods for implementation throughout the program have remained extremely flexible. The programs offered to community

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 79 members have included dance classes, dances, karate lessons, weight loss classes, ballet classes, and an obesity camp. The program organizers were willing to try any program that community members wanted to try, and many of them were tremendously successful. In addition, trust and account- ability were established with the communities, and there was recognition and acceptance that success is not always what is initially planned. Pro- grams that community planners never thought would catch on have become very successful and are now sustainable in the communities. This initiative has truly had an impact on the lives of community mem- bers. One community member, the Assistant Program Manager and Chair of the REACH 2010 Steering Committee, lost 90 pounds and is getting ready to star in a new DVD featuring three levels of chair exercises. She came into the REACH program with high blood pressure and diabetes, but now she no longer has to take high blood pressure medication and her diabetes is under control. She did not join the program for physical activity, yet she is one of the reasons that the program is successful. She was motivated when she joined and she is able to motivate the people in her community. Everybody in the community knows her because she has been such a driving force behind this initiative. It is people like her who best demonstrate how this program can make lasting change. The exercise DVD was developed with the help of the Creighton Nation, which is not one of the REACH partners, and it will be provided free-of-charge to any tribal member in the state of Oklahoma. There are many new and exciting programs that the coalition would like to pursue in the years to come. There is interest in having the new physical activity training programs adopted by other tribes and nations in Oklahoma and also in having the programs implemented statewide. There is interest in taking the Oklahoma REACH model and applying it to other health initiatives, such as nutrition education or tobacco cessation training, among others. Another project coordinated by a local university, called the Community Networks Project, has been initiated to work with tribes and historically black towns in Oklahoma. There is a great deal of work yet to be done. STEPS TO A HEALTHIERUS The Steps program is a 5-year initiative originated by CDC; requests for funding opportunities were accepted in 2003 and 2004, explained Ms. Nancy Williams. The fundamental goal of the Steps program is to channel money into community-level, rather than state-level, programs. Program funding goes to the state initially, but then 75 percent of the   This section is an edited transcript of Ms. Nancy Williams’s remarks at the workshop.

80 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES funds are redistributed to state-coordinated small cities and rural regions or counties. The Steps program also funds large cities, urban intervention areas, and tribal entities like the Cherokee Steps and the Cherokee Nation. In all, 40 communities throughout the United States were awarded Steps to a HealthierUS programs. During application development, states, large cities, and tribes apply- ing for the program were required to put together a community coalition engaging a wide variety of community partners, develop plans for leverag- ing funds, and have an actionable plan prepared to start a program. Appli- cants were required to plan evidence-based interventions using community and clinical guides and other tools developed at CDC or by other national partners. The proposed programs could not duplicate existing services, but they could expand the reach of an existing service or expand community outreach. The programs had to identify a specific target area and design an intervention that would directly affect the subset of community mem- bers within the target area who carried the most chronic disease burden. The programs also had to be evaluated locally and nationally. The Steps programs are required to work across three diseases (asthma, diabetes, and obesity) and three risk factor areas (physical activity, poor nutrition, and smoking), and programs have to integrate four sectors: community, schools, worksite, and health care. One Steps to a HealthierUS program was awarded to Seattle–King County, Washington. The Seattle–King County program coordinators have worked very hard to provide integrated, coordinated health care to com- munity members by developing a program that combines the clinical and community perspectives into a hybrid approach. They have case manage- ment programs that help identify individuals who lack a medical care provider and help direct those people to places where they can receive appropriate health care. They have community health workers with access to community resources who help match individuals to appropriate diabetes education or physical activity programs. They have also been able to obtain Medicaid funding for some of their community wellness advocates who work with asthmatics and diabetics. The Steps program in Seattle–King County worked to develop very broad-based partnerships. They work with the REACH 2010 program in Seattle–King County and with their local Prevention Research Centers, two hospitals in the area, and a large range of community organizations. Other effective programs are Steps to a Healthier DeKalb in Georgia and the Boston Steps program. Steps to a Healthier DeKalb has focused on ensuring healthy communities in which community members live, work, play, receive education, worship, and receive health care. They have worked in specific neighborhoods and in the southern part of DeKalb County. They have also reached out to other community partners or coalitions, such

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 81 as Morehouse School of Medicine and Emory University, and have very effective partnerships with Kaiser Permanente, the YMCA, and Children’s Health Care of Atlanta. Steps to a Healthier Boston had a neighborhood walk and set up 51 walking groups in 7 target neighborhoods—­Dorchester, Hydepark, Jamaica Plain, Mattapan, Roxbury, South Boston, and South End/Chinatown. This was one small program out of many they have done. A Steps to a HealthierUS program in Arizona works in the border region: Cochise County, the federally qualified health care center in Nogales, Yuma County, the Cooperative Extension Services, and the Tona–Ogden Nation. This group has been working on both sides of the U.S.–Mexico border to reach people in adjacent communities who routinely travel across the border and because the tribe has members in both Mexico and the United States. This program has played a very active role in empowering com- munity members to take more active roles in the community-development process. From a national perspective, all of the Steps communities are encour- aged to move toward policy, organizational system, and environmental change. These goals are not easy in the public health arena, but they are necessary for creating sustainable programs. Many of the Steps pro- grams have been heavily involved in worksite wellness initiatives for large and small businesses. Emphasis has been placed on making changes to local school policies by creating school wellness plans or making vending machine policy changes. School health coordinators have been instrumental in developing and implementing wellness policies in the school districts and throughout the Steps communities. Steps programs have also been instru- mental in instituting changes in the built environment, improving disease registries, and increasing access to quality health care. The Steps programs have worked hard to establish national partner- ships. The YMCA was a national partner and provided $500,000 a year for 4 years. This collaboration allowed Steps communities to work very closely with their local YMCAs to make substantial changes in communi- ties. Through such partnerships as these, the Steps programs have been able to build capacity within the Steps communities. Steps programs have advanced chronic disease control and prevention in 40 regions across the country, but there is much more work to be done. In the future, Steps communities must work more closely with community development organizations, and program coordinators will be encouraged to start disseminating some of the lessons they have learned to other com- munities that are implementing new programs. There are always lessons to learn and opportunities for improving existing programs.

82 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES STEPS IN BROOME COUNTY The Steps program in Broome County is one of four Steps communi- ties in New York State coordinated by the New York State Department of Health, explained Ms. Mary McFadden. Combined, the four Steps communities serve about 700,000 New York State residents. Broome County is a rural residential county in New York, about 10 miles north of the ­Pennsylvania border. The population of Broome County is close to 200,000 people, and residents are predominantly white (92 percent) and black (4.1 percent). Roughly 12.8 percent of Broome County’s residents fall below the federal poverty line. In some of the rural school districts, 70 percent of the schoolchildren receive free or reduced priced lunches. Steps in Broome County has developed a hybrid approach to helping reduce health disparities by creating science-based programs that lead to sustainable policy, environmental, or system changes. The program specifi- cally targets blacks, children and young adults; seniors; veterans; and rural, low-income, and disabled residents. By developing broad-based programs that build on the strength of existing community infrastructure, Steps in Broome County has created new programs that have enhanced benefits and features for community members. The Steps program builds capacity for sustaining successful interventions across each of the sectors and in the priority populations, working hard to weave its programs and public health agenda into the fabric of the community. It does all of this, however, while being severely underfunded. Four years into a 5-year grant, Steps of Broome County is eager to show the impact of their program and to show how much has been achieved with limited funding. An integrated approach is taken with the program, meaning that the project promotes partnerships, works to avoid duplication of efforts, maxi- mizes resources, enhances coordination between systems, develops system- atic identification of common problems and gaps and shares opportunities for addressing them, enables sharing of data and best practice, and changes the business-as-usual approach. The program currently has over 100 tradi­ tional and nontraditional partners and continues to work hard to have a presence in every facet of the community, including where people work, learn, play, pray, and use the health care system. Ongoing evaluation is extremely important, and the Steps program uses the Behavioral and Risk Factors Surveillance Survey (BRFSS) and the Youth Risk Behavior Survey (YRBS), as well as local-level data, to track the community’s progress. Both the BRFSS and YRBS are specific to Steps to a HealthierNY and are heavily emphasized as data sources for determining Steps progress. The school health index is used as a model to identify where the greatest needs are and where problems exist that need to be addressed.   This section is an edited transcript of Ms. Mary McFadden’s remarks at the workshop.

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 83 A fitness grant is being implemented that will provide baseline data, includ- ing body mass index (BMI) and a physical assessment, for approximately 30,000 children in elementary, middle, and high school. The program has also worked with each of the county’s 12 school districts to implement wellness policies. Several broad-based Broome County Steps interventions combine approaches from the community and health care sectors. A Farmer’s Market has been instituted at Mets Stadium and the stadium gives free apples and grapes to children during Sunday baseball games. Other programs include Breathe Better in Broome which focuses on asthma educational programs; BC Walks, focusing on organized walking programs; BC Breastfeeds-­Loving Support; Farm-to-You, a five-a-day fruit and vegetable program; Rock on Café, a community collaborative effort to provide healthier meals and food options in local schools; Young Lungs at Play; Loud and Local Community- wide Steps Campaign; Mission Meltaway; and community gardens that have been started throughout the area. The community has also instituted a policy stating that they will not contract with any company that will not change policies or systems or make environmental changes that serve to improve the health of the community. All new programs must also be sustainable. Mission Meltaway is an evidenced-based program designed to promote a team approach to healthy eating and increased activity, while foster- ing sustainable changes through systems, policies, and the environment. M ­ ission Meltaway is an 8-week healthy weight education program focusing on black participants who participate in faith-based communities. This pro- gram has been instituted at worksites; community organizations; schools; state, county, and municipal government offices; senior sites; first responder sites; and in health care system facilities. The program is led by community members, who, after receiving training about the program, become peer leaders for others in the community. In addition to running the program, community peer leaders are also responsible for recording and tracking participant’s weight, blood pressure, BMI, and physical measurement on a weekly basis. Each organization that partners with the Broome County Steps ­Mission Meltaway signs a memorandum of agreement stating that they will create policy systems and institute environmental changes related to physical activity and nutrition, so their employees and community members will have more opportunities to stay fit. With the support of teammates, par- ticipants from partner organizations lead healthier lifestyles by adopting healthier eating habits and exercising more. These efforts, in addition to other benefits, prevent and control the onset of diabetes and create sustain- able changes to support healthy living throughout all the sectors in the community.

84 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES To date, there are over 100 participating Mission Meltaway sites in Broome County, and the New York State Diabetes Prevention and Con- trol program and the New York State Healthy Heart worksite initiative have adopted this program as a community-based intervention strategy for reducing diabetes risk. In light of the program’s success, other coun- ties participating in the Healthy Living Partnership NYS Diabetes Preven- tion and Control Initiatives, as well as other NYS Steps communities and Steps communities throughout the nation, are considering adopting the Mission Meltaway program. Even the hardware chain store Lowe’s, a non­ traditional partner, has initiated the program at their national headquarters, and they are adding Mission Meltaway as a worksite wellness opportunity for employees throughout the entire Lowe’s chain. The Mission Meltaway program has had a tremendous impact on the health of participating community members. Before beginning the program, 83 percent of participants were classified as being obese or overweight and 68 percent were identified as being at risk. A majority of program par- ticipants reported needing to lose weight (98 percent), a portion of whom reported wanting to lose substantial weight (ranging up to 200 pounds). Participants reported joining Mission Meltaway to improve eating habits, increase their level of physical activity, or to take part for social reasons. It is a group-supported weight loss program, and many participants have found that the group support motivated them to stay with the program. Mission Meltaway has been successful in reaching overweight and obese individuals, as well as those who are or have been at risk for diabetes. All areas of measurement have demonstrated statistically significant health improvements, providing strong evidence of the program’s success. Among other results, participants reported an increase in their fruit and vegetable consumption by approximately a half-serving per day; consumption of fast food, bakery goods, fried foods, processed foods, candies, and chips declined significantly; mean weight decreased by 4.7 pounds per partici- pant, with a total weight loss for the program of 4,429 pounds; waist sizes decreased by nearly 1.4 inches, with 547 inches lost in total; and 62 percent of participants decreased their BMI by at least 1 point. Through targeted physical activity and nutrition interventions such as Mission Meltaway, Broome County has taken positive steps to achieve a healthier New York State. CHEROKEE NATION I was born and raised in Adair County, which is the most heavily popu- lated native county in Oklahoma, and I have been with the Cherokee Nation   This section is an edited transcript of Ms. Lisa Pivec’s remarks at the workshop.

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 85 for 16 years, explained Ms. Lisa Pivec. Both of my grandparents were original enrollees of the Cherokee Tribe, and my great-grandparents came across the country during the forcible removal of native Indians from Georgia, North Carolina, and Tennessee. I am very proud to be a member of the Cherokee Nation, and I am very proud to work for my tribe. When I first started working with the Cherokee Nation as a Health Educator, I promoted women’s breast health by traveling to small commu- nities to talk about self-breast examinations. Although I believed that this issue was very important, I quickly discovered as I went into the different communities that breast health was the last thing on women’s minds. The women I spoke to were struggling with more pressing concerns, like getting food for their children, trying to take care of their family, trying to keep the electricity from being shut off, or trying to make sure they had a home in which to live. Self-breast examination, although important, was one of the least important things that these people were trying to cope with. This got me thinking about how issues are prioritized in the community and how to promote healthy communities. The Healthy Nation Program was started in 1994, through a grant from the Robert Wood Johnson Foundation. The original funding was pro- vided to address substance abuse in communities using new approaches that focused on community-level interventions. Since substance abuse is systemic with other problems in the communities, early efforts began by having an open dialogue with community members about this issue. As members of the community ourselves, we realized that it was vital to get input from other community members if we hoped to create a program that would truly have an impact. The programs that the Healthy Nation Program initiates benefit the entire community. All of the community health programs are open to tribal members as well as members of the larger community. The mission state- ment is that the Healthy Nation Program promotes healthy communities through increasing physical activity, improving nutrition, and preventing tobacco abuse. The priorities of the tribes are preserving the native lan- guage, ensuring that there are jobs and economic opportunities for tribal members in local areas, and investing in communities and community infra- structure. These priorities go hand in hand with the Healthy Nation Pro- gram efforts in the area of health promotion. There are over 100 ­Cherokee communities in the tribe, and this program works with approximately 30 of them. The work that is currently being done is centered primarily in five counties in eastern Oklahoma. The Healthy Nation Program uses an integrated approach to address problems in the community (Table 4-1). Using the integrated approach, dif- ferent programs are coordinated in a variety of settings, including schools, worksites, communities, and health care sites. Many health educators work

86 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES TABLE 4-1  Integrated Approach School-Based: Worksite: School Health Index Worksite Wellness Index School Health Inventory Smoking Cessation Wings 4 Youth Facilitator Training Fitness Camps S.W.A.T. Community-Based: Health Care: Wings Fitness Smoking Cessation Community Physical Activity Events Facilitator Training Healthy Restaurants OK Quit Line Provider Referral Program Healthy Women BMI Screenings on programs that focus on a variety of disease conditions and risk factors, including diabetes, asthma, obesity, physical activity, nutrition, and tobacco use, in all four of the community settings. The Healthy Nation Program is a REACH 2010 and a Steps to a Healthier Cherokee Nation site—one of only three tribes funded nationally as a Steps site. The Steps program was originally funded in 2004 with a 5-year Steps cooperative agreement. When planning a community program, it is important to remember that no single intervention will work for every participant. Programs should consist of various activities that appeal to a wide range of interests and skill levels, offering opportunities for participants to gain exposure to new opportunities and glean knowledge from their experiences over an extended period of time. When working with communities, it is important to rec- ognize the relationship between people and their social networks and to respect that lifestyle choices are dependent on a complex mix of social and community environments. Community programs can either actively support or obstruct positive personal change. The Healthy Nation Program uses an integrated approach in order to saturate all levels of the social structure. Within the tribal entities, there is an effort to work closely with the commu- nity services programs, which oversee most of the housing and public works programs. The Healthy Nation Program also tries to work closely with the education department and the Department of Human Services. In this way, initiatives can saturate all levels of the social structure and institute programs that encompass and meet the needs of the community members. One method for accomplishing the organizational goals of the Healthy Nation Program was to begin administering the BRFSS within the Cherokee Nation. Since 2005, the program has been able to oversample the counties and statistically analyze specific counties of interest. Using the BRFSS, it

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 87 was determined that American Indians in the Cherokee Nation have higher rates of diabetes than other groups. In some of the Steps areas where physi- cal activity programs were operating, it was discovered that although most people reported that they were getting the recommended amount of daily activity, American Indians in the Steps project area were significantly more likely to be obese than Oklahomans overall. The BRFSS also revealed that people in the Cherokee Nation reported that they were not consuming the recommended amount of fruits and vegetables and were more likely to smoke cigarettes. In addition to the Cherokee Nation BRFSS, the Steps to a Healthier Cherokee Nation and the Reach programs incorporate many different planning and evaluation tools, including BMI assessment, weekly logs (database), referrals from health care providers, the Oklahoma State Health Policy Review, the School Health Inventory, OK Quit Line Data, the YRBS, and follow-up on smoking cessation programs. Another evaluation tool called the Knowledge, Attitudes, and Practice analyzes BRFSS information and tries to evaluate why people provide certain responses to questions. This tool evaluates how respondents’ answers are affected by such concerns as lack of self-efficacy, skills competency, or the lack of infrastructure. To improve the health status of the members of the Cherokee Nation, several new programs have been instituted. Programs have been started to coordinate and sponsor BMI screenings and direct summer youth and f ­ amily fitness camps. The school health index has been used to help approx- imately 30 rural community schools develop improvement plans, which were implemented using tribal funds. Other programs include ongoing smoking cessation and tobacco abuse prevention programs and worksite wellness initiatives. The Wings Club is an organization with over 1,500 active members that sponsors as many as 165 events each year. More importantly, this club has demonstrated how willing people are to participate in local programs when opportunities to do so are provided. If an activity is offered, there is an effort to ensure that it is accessible and that any transportation barriers are overcome. When programs are offered that people want, they attend and actively participate. In June 2007, a 5K road race was sponsored and, despite heavy rain on the day of the event, 293 people entered the race. In addition to these programs, the Cherokee Nation has also sponsored hiking, bowling, swimming, Cherokee marbles, dances, and soccer in the communities. They sponsor any kind of activity that people might want to do. There are summer youth fitness camps, 2-week residential camps offered to fourth through sixth graders (ages 9–12), and day sessions are offered focusing on physical activity and nutrition. Day camps are operated in partnership with local school districts, so that camps can be implemented in communities. Evening sessions focused on skill building and traditional

88 CHALLENGES AND SUCCESSES IN REDUCING HEALTH DISPARITIES Cherokee culture are also available. Family Fitness Camps are offered that emphasize Cherokee culture and incorporate healthy lifestyle tips and skills building. All of the camps are coordinated through local community orga- nizations that are administered through the community services and educa- tion and human services divisions. A partnership with the Florida Atlantic University’s Nursing Program provides nurses who complete internships in the Cherokee Nation as part of their master’s program. The School Health Index has been adapted and used to evaluate exist- ing policies, make plans for improvement, and provide funding, technical assistance, and training to implement improvements at the local schools. Grant money and federal funds have been used in nontraditional ways, such as to build facilities and infrastructure, and purchase equipment. We also implemented a series of Tobacco Abuse Prevention programs. These efforts included funding the CDC Tribal Support Center, which offers smoking c ­ essation and promotes the Oklahoma Quit Line; the Great American Smoke-Out; Students Working Against Tobacco; and 24/7 Policy Develop- ment, which has now been implemented in 14 schools. In 2005, the Cherokee Nation began promoting the Oklahoma Tobacco Quit Line through local communities, providers, and the state of Oklahoma, translating cessation materials into Cherokee accompanied by Cherokee imagery. Of the 191 participants enrolled initially, 59 quit smoking—a quit rate of 31 percent, which is consistent with current research regard- ing quit rates. Of the remaining participants, 132 continue to smoke and 51 were interested in enrolling in another class. Since the initial program, the number of enrollees in the program and the number of people who have success­fully quit has increased significantly. Other smoking cessation programs and the Tobacco Quit Line have also been successful. Disparity between nonnative and Native Americans smoking cigarettes daily is declin- ing, call rates have gone up, and the percentage of American Indians who smoke is beginning to decline. The Cherokee Nation has initiated a new program called Eat Better, Move More, which is focused on increasing physical activity, improving nutrition for elders, and providing nutrition centers. It is a 12-week program that includes functional testing and a variety of activities. Leaders from each participating group are identified and taught how to lead classes after the initial program ends. The program is being piloted at three sites and a manual is being created for systemwide distribution throughout the communities. Program Challenges The work that the Cherokee Nation does is very important, but it is just beginning. It has not reached its full potential for long-lasting change. The programs have been implemented and funded within the last 10 years, and it

SUCCESSFUL CLINICAL AND COMMUNITY-DEVELOPMENT STRATEGIES 89 is going to take many more years to make lasting changes. There is a lack of physical infrastructure in the rural communities, and the rural service area is extremely large. There are currently 14 staff people who oversee programs in 100 local communities. That is why it is imperative to partner with other community services and education and human services programs. Local community members stated that they would like more individual exercise instruction, in-depth nutritional programs, additional group activities, and activities for special populations. Prioritizing policy adoption for health pro- motion programs in the Cherokee Nation has been challenging, as has strat- egizing implementation procedures and methods for reaching program goals and objectives. Recruiting staff and training individuals who are invested in their local community and willing to stay involved in the long term has been increasingly difficult, and managing competing priorities among program participants has been an ongoing challenge. Looking Forward Programs under development will be framed around curriculum-based group activities that provide social support from the local community to ensure that community members have an opportunity to participate in different activities at the local level and start developing new skills. There is a focus on sustainability using community strategies, mutual contribu- tion, providing options for communities, and direct funding to provide community groups with the financial capital necessary to carry out com- munity projects and learn how to manage the essential processes. Partner- ships are being formed to help ensure the continuity of existing programs. C ­ ommunity-level interventions are getting under way and there are efforts to change health conditions at the local level.

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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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