4. Initiating a Project with a Community and Developing a Community Advisory Board
As described in Chapter 1, partnerships evolve over time. Often, the first steps toward engagement are the most difficult to take. The vignettes in this section demonstrate some effective ways of initiating research collaborations.
A. How do you start working with a community?
Daniel S. Blumenthal, MD, MPH
In the mid-1980s, the Morehouse School of Medicine in Atlanta was a new institution, having been founded only a few years earlier. Because its mission called for service to underserved communities, two contiguous low-income African American neighborhoods in southeast Atlanta were engaged. These neighborhoods, Joyland and Highpoint, had a combined population of about 5,000 and no established community organization. Morehouse dispatched a community organizer to the area, and he spent the next few months learning about the community. He met the community leaders, ministers, business people, school principals, and agency heads, and he secured credibility by supporting neighborhood events and even buying t-shirts for a kids’ softball team. Soon, he was able to bring together the leaders, who now knew and trusted him (and, by extension, Morehouse), to create and incorporate the Joyland-Highpoint Community Coalition (JHCC).
With the help of the community organizer, the JHCC conducted an assessment of the community’s health needs, mostly by surveying people where they gath-ered and worked. Drug abuse was at the top of the community’s problem list, and Morehouse secured a grant to conduct a project on preventing substance abuse. Most of the grant was subcontracted to the JHCC, which was able to use the funds to hire a project director (who also served as the organization’s executive director) and other staff.
Morehouse continued to work with Joyland, Highpoint, and the surrounding neighborhoods (known collectively as “Neighborhood Planning Unit Y,” or NPU-Y) for the next few years, even long after the original grant had expired. In the mid-1990s, it took advantage of the opportunity to apply to CDC for funds to establish a PRC. Applicants were required to have a community partner, and so Morehouse and NPU-Y became applicant partners. The grant was funded, and a community-majority board was created to govern the center. There were still issues to be worked out between the medical school and the community, such as the location of the center and the details of research protocols, but the foundation of trust allowed these issues to be resolved while preserving the partnership (Blumenthal, 2006).
- Community partnerships are not built overnight. A trusting partnership is developed over months or years.
- A partnership does not depend on a single grant, or even a succession of grants. The partnership continues even when there are no grants.
- A partnership means that resources and control are shared. The academic institution or government agency must be prepared to share funds with the community. The community should be the “senior partner” on issues that affect it.
- Community representatives should primarily be people who live in the community. The programs and projects implemented by agencies, schools, and other entities affect the community, but their staff often live elsewhere.
Blumenthal DS. A community coalition board creates a set of values for community-based research. Preventing Chronic Disease 2006;3(1):A16.
B. How do you set up and maintain a community advisory board?
Tabia Henry Akintobi, PhD, MPH, Lisa Goodin, MBA, Ella H. Trammel, David Collins, Daniel S. Blumenthal, MD, MPH
Establishing a governing body that ensures community-engaged research is challenging when (1) academicians have not previously been guided by neighborhood experts in the evolution of a community’s ecology, (2) community members have not led discussions regarding their health priorities, or (3) academic and neighborhood experts have not historically worked together as a single body with established rules to guide roles and operations. The Morehouse School of Medicine PRC was based on the applied definition of CBPR, in which research is conducted with, not on, communities in a partnership relationship. Faced with high levels of poverty, a lack of neighborhood resources, a plague of chronic diseases, and basic distrust in the research process, community members initially expressed their apprehension about participating in yet another partnership with an academic institution to conduct what they perceived as meaningless research in their neighborhoods.
Central to establishing the Morehouse Community Coalition Board (CCB) was an iterative process of disagreement, dialogue, and compromise that ultimately resulted in the identification of what academicians needed from neighborhood board members and what they, in turn, would offer communities. Not unlike other new social exchanges, each partner had to first learn, respect, and then value what the other considered a worthy benefit in return for participating on the CCB. According to the current CCB chair, community members allow researchers conditional access to their communities to engage in research with an established community benefit. Benefits to CCB members include the research findings as well as education, the building of skills and capacity, and an increased ability to access and navigate clinical and social services. The community has participated in Morehouse School of Medicine PRC CBPR focused on reducing the risk of HIV/AIDS and screening for colorectal cancer. Further, community-based radio broadcasts have facilitated real-time dialogue between metropolitan Atlanta community members and researchers to increase awareness regarding health promotion activities and various ways that communities can be empowered to improve their health. Other benefits have been the creation or expansion of jobs and health promotion programs through grants for community-led health initiatives.
Critical to maintaining the CCB are established bylaws that provide a blueprint for the governing body. As much as possible, board members should be people who truly represent the community and its priorities. Agency staff (e.g., health department staff, school principals) may not live in the community where they work, and so they may not be good representatives, even though their input has value. In the case of the Morehouse PRC, agency staff are included on the board, but residents of the community are in the majority, and one always serves as the CCB chair. All projects and protocols to be implemented by the PRC must be approved by the CCB’s Project Review Committee, which consists of neighborhood representatives. For more than a decade, critical research has been implemented and communities have sustained change. The differing values of academic and community CCB representatives are acknowledged and coexist within an established infrastructure that supports collective functioning to address community health promotion initiatives (Blumenthal, 2006; Hatch et al., 1993).
- Engagement in effective community coalition boards is developed through multidirectional learning of each partner’s values and needs.
- Community coalition boards are built and sustained over time to ensure community ownership through established rules and governance structures.
- Trust and relationship building are both central to having neighborhood and research experts work together to shape community-engaged research agendas.
- Maintaining a community coalition board requires ongoing communication and feedback, beyond formal monthly or quarterly meetings, to keep members engaged.
Blumenthal DS. A community coalition board creates a set of values for community-based research. Preventing Chronic Disease 2006;3(1):A16.
Hatch J, Moss N, Saran A, Presley-Cantrell L, Mallory C. Community research: partnership in black communities. American Journal of Preventive Medicine 1993;9(6 Suppl):27-31.
C. How do you launch a major community-engaged research study with a brand-new partnership that brings together diverse entities and individuals?
Mina Silberberg, PhD, Sherman A. James, PhD, Elaine Hart-Brothers, MD, MPH, Seronda A. Robinson, PhD, Sharon Elliott-Bynum, PhD, RN
As described in an earlier vignette, the African-American Health Improvement Partnership was launched in October 2005 in Durham, North Carolina, with a grant from the National Center for Minority Health and Health Disparities. AAHIP built on the prior work of participant organizations and individuals, but it created new relationships and was a new entity. The lead applicant on the grant was the Duke Division of Community Health (DCH), which had been working with community partners for seven years to develop innovative programs in care management, clinical services, and health education to meet the needs of underserved populations, primarily in Durham.
Until that point, research in the DCH had been limited to evaluation of its own programs, although some faculty and staff had conducted other types of research in their earlier positions. The AAHIP research team included Elaine Hart-Brothers, head of the Community Health Coalition (CHC), a community-based organization dedicated to addressing health disparities by mobilizing the volunteer efforts of Durham African American health professionals. The DCH had just begun working with the CHC through a small subcontract. Because the AAHIP was an entirely new entity, it had no community advisory board (CAB), and although the DCH and other Duke and Durham entities were engaged in collaborative work, no preexisting coalitions or advisory panels had the scope and composition required to support the AAHIP’s proposed work.
The CHC was brought into the development of the grant proposal at the begin-ning, before the budget was developed, and it played a particularly important role in developing the CAB. The goal was to create a board that represented diverse sectors of Durham’s African American and provider communities. On this issue, Sherman A. James (the study PI) and Mina Silberberg (currently the co-PI) deferred to the expertise of Hart-Brothers and Susan Yaggy, chief of the DCH, both of whom had broad and deep ties to the Durham community and years of experience with collaborative initiatives.
The research team decided it would be essential to evaluate its collaboration with the CAB to ensure fidelity to the principles of collaboration, to build capacity, and to help with the dissemination of lessons learned. For this external evaluation, it turned to North Carolina Central University (NCCU), enlisting the services of LaVerne Reid.
When the grant was awarded, it was time to bring together these diverse players and begin work in earnest. Hart-Brothers quickly realized that as a full-time community physician, she could not by herself fulfill CHC’s role on the project: to serve as the community “outreach” arm of the research team and participate actively in study design, data collection and analysis, and dissemination. She proposed a budget reallocation to bring on Sharon Elliott-Bynum, a nurse and community activist with a long and distinguished history of serving Durham’s low-income community. DCH faculty realized with time that Elliott-Bynum brought to the project unique expertise and contacts in sectors where DCH’s own expertise and contacts were limited, particularly the African American faith community. Similarly, Reid, who had recently been appointed interim Associate Dean of the College of Behavioral and Social Sciences at NCCU, recognized that she no longer had the time to evaluate the CAB-research team collaboration on her own and brought in Seronda Robinson from NCCU.
As the work progressed, new challenges arose in the relationship between Duke and the CHC. As a small community-based organization, the CHC used accounting methods that did not meet Duke’s requirements or those of NIH; invoices lacked sufficient detail and documentation. Payment to the CHC fell behind, as the DCH returned invoices it had received for revision, and both parties grew frustrated. The partners decided that the DCH administrator would develop written instructions for the CHC on invoicing for purposes of the grant and train CHC staff on these procedures. Eventually, CHC also brought on a staffer with greater skills in the accounting area.
Duke’s lengthy process for payment of invoices frustrated the CHC, which, as a small organization, was unable to pay staff without a timely flow of funds. In response, the research team established that the CHC would tell the DCH immediately if its check did not arrive when expected, and the DCH would immediately check on payment status with the central accounting office. Moreover, the DCH determined that when the CHC needed a rapid influx of funds, it should invoice more frequently than once per month. In this way, through sustained engagement by all parties, the DCH and CHC moved from pointing fingers at each other to solving what had been a frustrating problem. In explaining the AAHIP’s capacity to work through these invoicing issues, participants cite not only the actions taken in that moment but also a history of open communication and respect, particularly the inclusion of the CHC in the original budget and the understanding that all members of the research team are equal partners.
- Create the preconditions for solving problems and conflicts through a history and environment of inclusion (particularly with regard to money).
- Recognize and use the unique expertise, skills, and connections of each partner. Step back when necessary to defer to others.
- Be flexible. The study needs will change, as will the circumstances of individual partners.
- Put the right people with the right level of commitment in the right job.
- Commit the staff time required for effective, active community participation on a research team.
- Communicate and invest in capacity building. The operating procedures and needs of academic institutions, federal agencies, and small community-based organizations are usually very different. As a result, community and academic partners may come to view each other, perhaps mistakenly, as uncooperative. Partners will need to learn each other’s procedures and needs and then solve problems together. Community partners are also likely to need capacity building in the accounting procedures required by academic institutions and the federal government.