CENTERS FOR DISEASE CONTROL AND PREVENTION
Volume 15 • Number 1 • Winter 2002

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Public Health Benefits When Communities Participate and Help to Guide Research

The best solutions to public health problems are produced when communities and researchers work together. Community members can pinpoint health problems that are important to them, warn about obstacles, and suggest practical solutions. “Such engagement with communities is essential if we are to understand and eliminate the root causes of health disparities,” said Donna F. Stroup, PhD, MSc, Associate Director for Science, NCCDPHP. The following examples show how public health benefits when communities are involved in research from the start. 

Project DIRECT Tackles Diabetes Disparities 
African Americans are far more likely than whites to develop type 2 diabetes, suffer from its disabling complications, and die. In southeast Raleigh, North Carolina, researchers are working closely with the African American community to reduce these disparities by testing diabetes interventions and finding strategies that will be effective throughout the country. Project DIRECT (Diabetes Intervention Reaching and Educating Communities Together) has these goals: 

• Reduce African Americans’ risk factors for developing diabetes. 
• Identify African Americans who already have diabetes. 
• Improve the quality of diabetes health care provided to African Americans.

Raleigh was chosen as the project site because of its large African American community (about 40,000) and diabetes rates that are higher than the national average. “We knew from the pilot study that the African American community was well established, with identified leaders and highly effective networks. The community was also willing, capable, and interested in the study,” said CDC epidemiologist Michael M. Englegau, MD, MS. 

Specific interventions conducted by Project DIRECT include the following: 

• Promoting good nutrition. Churches have been involved in several interventions, including a successful program to improve nutrition among African Americans. Project DIRECT staff trained members of church food preparation committees to plan and prepare healthier meals. A registered dietitian gave brief presentations, demonstrated healthy cooking techniques, and offered samples of the prepared foods. Churches also allowed Project DIRECT staff to attend events where food was served so they could gather information from food preparation staff and the congregation. 
• Encouraging people to be active. Health education campaigns have also proven effective in helping African Americans with diabetes. For example, Ready, Set, Walk is a 6-week class that prepares people with diabetes to increase their physical activity level by walking regularly and making healthier food choices. The classes are promoted through churches and community health centers. Some participants are trained as lay exercise leaders to keep the groups going. More than three-fourths of participants said the program helped them start walking. CDC study coordinator Betty Lamb, RN, MSN, reports that the community has now adopted walking as a lifestyle: “You see people of all ages in parks and on trails.” 
• Improving diabetes self-management. More than 400 people have attended diabetes self-management classes, which are offered at community health centers, a senior center, the YMCA, and Project DIRECT’s community office. Tests before and after the program show that the classes are helping patients better control their blood glucose levels. Community members are also more likely to acknowledge that they have diabetes. One physician remarked, “When my patients are telling me they need a support group, I don’t need a survey to know we’ve made progress.” 
• Improving quality of care. Audits of medical charts showed that primary care providers needed to improve diabetes care. Patients saw their primary care physicians regularly but went for long periods without foot and eye exams. Some patients had conditions such as high blood pressure that were being monitored but not adequately addressed. Getting health care providers to participate in this program focused their attention on indicators of care. Trend data show that since the program began, participants are more likely to be referred for eye exams and tested for early signs of kidney disease. 

Project DIRECT has been extremely effective because “community involvement and ownership have been outstanding,” said Ms. Lamb. Partners include the community of southeast Raleigh; the Division of Public Health in the North Carolina Department of Health and Human Services; Wake County Human Services; and CDC. Despite staff turnover (each intervention had its own coordinator), the community has kept the project active. “Community members involved with the project are now urging other communities to adopt similar strategies,” noted Ms. Lamb. 

Building this kind of relationship with a community does not happen overnight. “It takes a lot of work and effort to organize the community,” said Dr. Engelgau. “It then takes a lot of time to get it going. But we would not have seen such dramatic changes without those efforts. Patience is necessary.” 

 
Community Advisory Boards Help Guide CDC’s Prevention Research Centers 
To effectively change health behaviors, researchers must work with—not on— communities. This is the philosophy that drives CDC’s 26 Prevention Research Centers (PRCs), based in schools of public health and medicine across the United States. These centers are dedicated to conducting research and education that promotes the health of communities. The PRCs focus on populations with the highest rates of morbidity and mortality, especially those in which health disparities are related to adverse social and economic conditions (http://www.cdc.gov/prc/). 

One way the PRCs involve local people is by working with community advisory boards, which are generally a diverse group of community members, volunteers, health and education professionals, and representatives of local and state service organizations. Their role is to help PRC staff understand community values and plan research and interventions that reflect these values. Elleen M. Yancey, PhD, Director of the Morehouse School of Medicine PRC in Atlanta, especially appreciates the cultural perspective provided by Morehouse’s board. “Our board chairman, a retired school-teacher who taught in the local schools, is familiar with the history of the neighborhoods we work with,” she noted. 

“Community advisory board members bring us a knowledge of the community and help us frame questions in ways that are relevant,” said Marc Zimmerman, PhD, Director of the University of Michigan PRC. “I can tell you we have a better product because the community is involved.” 

LuAnn White, PhD, Co-Director of Tulane University’s PRC in New Orleans, agreed. “They’ve been very helpful to us in interacting with the community and sharing what we’re doing with their various community-based organizations,” she said. 

Community advisory board members also recognize the value of their role. “We firmly believe that no one who is affected by the outcome of a study or intervention should be excluded from the process of planning, conducting, and evaluating it,” said E. Yvonne Lewis, a member of the community advisory board at the University of Michigan PRC. 

The Johns Hopkins University’s PRC, which focuses on adolescent health, has a youth advisory committee of Baltimore youth aged 13–19 years co-facilitated by one adult PRC staff member and a youth advisory committee alumnus (the center also has a community advisory board of adult professionals and other community members). The young people on the committee have the same responsibilities and standards as adult members: they provide feedback on surveys and publications targeted to young people, suggest strategies for recruiting young people into studies, participate in training workshops, plan and conduct youth retreats, recruit new members, and contribute to the PRC newsletter. Over the years, they have worked with project investigators to make substantive changes to numerous surveys and other research projects. For example, when the Baltimore City Health Commissioner wanted to determine the impact of needle exchange programs on adolescent perceptions of drug use, members of the youth advisory committee reviewed a draft questionnaire and provided feedback. “Involving young people in the work of the center through this committee helps researchers to better understand the challenges and concerns of urban youth while providing a unique opportunity to develop positive adult-youth relationships,” says PRC staff member Lisa Hohenemser, MPH. 

Community advisory boards can also bring projects to the table or participate in grant writing, data collection, or administrative responsibilities. They often help PRC staff identify and focus on concerns important to the community. At Tulane, a demonstration project began when community members came to the PRC with concerns about lead levels in a New Orleans housing project. One aim of the project was to see what mothers in the area could do to help lower their children’s blood lead levels, which were extremely elevated. The PRC collaborated with the community to develop the project. 

The community was also concerned about jobs at that time (1998) because of impending Welfare-to-Work laws. Thus, the project includes lay persons who carry out the intervention study with the community. Called “Lead Busters,” these workers receive 6 months of training on basic lead information, professionalism, public speaking, outreach, and research concerns. Their duties include visiting people’s homes, training them in how to reduce lead in their homes, and delivering health education messages. 

“Now, as we design a project dealing with lead, it’s actually our Lead Busters who tell us how we ought to do things in a community,” said Dr. White. “They help us set some of our goals and objectives for the studies—what’s going to work and what’s not, how we ought to design the study so that the community will be responsive to it and so it’s something that the community actually needs and wants done.” 

Dr. Zimmerman noted that sometimes a community advisory board member, not the university, takes the lead in a project. At the University of Michigan PRC, a community advisory board member is the principal investigator of a project to reduce racial disparities in infant mortality. The University’s role is to provide evaluation support. At Morehouse, the community advisory board helps set PRC policies. Such activities are why PRCs have come to view their community boards not as participants, but as partners. 

“And it’s extremely important for it to be a partnership,” noted Dr. Yancey, Director of the Morehouse PRC. Communities must be involved in research early on. Before designing any study, PRCs must ask: What is the community’s view of the problem, and what steps would they want to take to approach it? At many PRCs, community boards review research proposals before they are submitted to funding entities, and principal investigators have revised proposals based on their recommendations. 

Productive Tensions, Continuing Challenges 
PRC directors acknowledge that this form of collaboration is not always easy. Communications are a constant challenge. The administrative burden of planning meetings and retreats, recordkeeping, providing refreshments and reimbursement for travel, issuing reminders, preparing agendas and other materials, usually falls to the PRC. PRCs sometimes offer board members training in meeting facilitation or other management skills, with support from CDC. 

Michigan’s Dr. Zimmerman notes that community boards and PRCs “definitely have different priorities,” which makes negotiation and dialogue necessary and sometimes difficult. Tension can also develop over the process or pace at which projects proceed. The need for timely publication might drive the PRCs’ timetables, while community advisory boards want to fine-tune the message. Dr. Zimmerman said that one of the community advisory board members he works with described the tension this way: “Sometimes the university partners want to go 75 miles an hour and the community wants to go 25.” 

Research Can Make Communities Stronger 
Academic partners need to learn how to work with communities and take time to develop a relationship of trust and familiarity. They sometimes also must help community boards develop the necessary infrastructure. The Morehouse PRC operates four technology training centers, two of which teach adolescents how to retrieve health information from the Internet, and has also offered a series of workshops on grant writing. The University of Michigan PRC has helped community advisory board members learn more about research methods; as a result, they are now better able to articulate questions about such matters as the selection of control groups for studies, said Dr. Zimmerman. 

The PRC directors supported the formation of a steering committee of representatives from the community advisory boards to provide guidance to the PRCs at the national level, not just to each center separately (research and communication committees were also established). Through the PRC national community committee, CAB members can come together to help existing and new boards by sharing ideas, discussing common concerns, and finding ways to help each other. One idea in the works is to offer board members training in evaluation (as some PRCs already do) so they will better understand the process and be able to offer meaningful input when discussing evaluation projects with PRC staff. 

PRC directors are enthusiastic about bringing community participation to the national level of their network. “Seeing how other community advisory boards function, particularly those that have been around for a very long time, will help us work together at a higher level and develop at a faster rate,” said Dr. White. 

Ms. Lewis, who (with Ms. Ella Greene-Moton) co-chairs the national community committee of PRC community advisory board members, said, “Our goals are to bridge the gaps, highlight our similarities, and celebrate our differences.” 

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