From ATLANTA Medicine, 2013, Care for the Underserved, Vol. 84, No. 2
By Tabia Henry Akintobi, Ph.D., MPH, Lisa M. Goodin, MBA, & LaShawn Hoffman
Socioeconomic status and ethnicity have been associated with a variety of health outcomes. Blacks have disproportionately higher morbidity and mortality associated with cardiovascular disease, cancer, homicide, diabetes and HIV/AIDS. These persistent trends help to explain the increased focus of public health research agendas on ethnic disparities in health.
Many clinicians and researchers agree that social and environmental factors are crucial to understanding and addressing the determinants of health outcomes that increase the likelihood of mortality and morbidity across the lifespan. Historically, academic research in communities existed in which the academic institution received significant benefit; however, the community held no control of research projects and tended not to receive any benefit.
Oftentimes, this led to the community’s distrust of researchers in communities and the communities’ ultimate lack of participation in research programs1. The evolution and application of community-based participatory research (CBPR) in communities has led to increased research participation and community ownership globally. The Morehouse School of Medicine Prevention Research Center (PRC) has empowered representatives of metropolitan Atlanta Neighborhood Planning Units (NPUs) to define their research, service and education needs to address the health of their neighborhoods.
The PRC was established in 1998 and based on the applied definition of CBPR, where research is conducted with communities in a partnership relationship. This contrasts with the older approach to community-based research in which research was conducted on communities in an arrangement that often resulted in exploitation of the communities.
This positioning of communities as central to identifying their own health priorities is directly aligned with Morehouse School of Medicine’s prioritization of service to the underserved. The PRC’s research partner communities are located within City of Atlanta NPUs V, X, Y and Z. Each City of Atlanta NPU contains five to 10 well-defined neighborhoods. Each elects officers and holds monthly public meetings to discuss relevant and timely issues of importance to its residents (i.e. city zoning, economic and civic development, etc). The total population of PRC’s partnering communities in NPU V, X, Y and Z is 55,757, with 89.3 percent (48,701) being African Americans. 40.9 percent of African-American households within the four aforementioned NPUs live below the poverty level2.
Community-Prioritized Governance in Setting Health Agendas
The PRC’s partnering NPUs have been faced with increased poverty for decades, a lack of neighborhood resources and a plague of chronic diseases, so historically they have maintained a basic distrust in the research process. Several residents expressed their apprehension about participating in yet another partnership with an academic institution to conduct more meaningless research in their neighborhoods3. So at the outset, the PRC created a governance model in which the community would serve as the “senior partner” in its relationship with the medical school and other academic and agency collaborators.
The PRC is governed by a Community Coalition Board (CCB), to which all the identified partners belong, but community representatives hold the preponderance of power, literally putting them at the forefront of all CBPR and related approaches. Board members, including academic, agency and neighborhood representatives, truly represent the community and its priorities. Academic representatives include the faculty and staff that are frequently engaged in carrying out the research service or training initiatives affiliated with the PRC.
Agency staff (e.g., health department staff, school board representative) may not live in the community where they work, but their agencies serve the communities. Their input has value but represents the goals and objectives of their organization, rather than the lived experience of a resident. Residents of the community – “neighborhood representatives” – are in the majority, and one always serves as Board Chair, as opposed to agency or academic members of the CCB. The PRC’S CCB serves as a policy-making board– not an advisory board, which has created an opportunity for community partners to have an active voice in directing the operations of and sustainability for the Center.
The role of the CCB is to: (a) set policy and oversee the operations of the center; (b) identify priorities and approve projects; (c) provide information on center activities to the organizations and agencies represented on the Board; and (d) develop a strategic plan by which the Center may achieve its long-term objectives. The CCB established and ratified bylaws that provide a written blueprint for the governing body. Subsequently, the CCB articulated its values and priorities through the development, adoption and enforcement of community values, research priorities and evaluation criteria for projects.
The governance of the research partnership is largely through consensus decision making, in which CCB members prioritize critical needs, review them, discuss appropriate solutions and cast a vote during its bimonthly meetings. All decisions are based upon the Board’s charge that all research – past, present and future – is packaged in simple ways for everyone to understand and is disseminated to individuals, communities, organizations and institutions in partnership with the PRC and its partners. Therefore, projects, if successful: 1) will contribute to a reduction in the disparity in health status between the white population and the African American or other minority population; 2) will contribute to improving the health status of African American males; and 3) will reduce injustice, including environmental injustice.
Establishment of a governing body that ensures community-engaged research can be challenging when: 1) academicians have not previously been guided by neighborhood experts in the evolution of a community’s own natural environment, 2) community members have not led discussions regarding their health priorities, or 3) academic, agency and neighborhood experts have not historically worked together as a single body with established rules guiding roles and function. The PRC, however, has successfully engaged in community-research partnerships that have been sustained for more than a decade3.
According to the former CCB Chair, Ella Heard Trammell, community members allow researchers conditional access to communities in order to engage in research, training and/or service initiatives with established community benefit. To that end, engagement of community partners involves an investment of time, dialogue, compromise and consensus toward selective participation in activities with bi-directional value. The PRC’s ability to actively engage the CCB in a meaningful way (where they see value in the Center’s work and positive impacts within their communities) has led to the retention of community partners since the PRC was founded.
Community health priorities assessment surveys are conducted by the PRC staff and partnering communities at least every two years. CCB members are trained to conduct the surveys in their communities, and the results are disseminated throughout community-based venues, e.g., CCB and NPU meetings; PRC newsletters, website; and via CCB member communication in their communities.
PRC core research and other PRC projects are also developed specifically in response to priorities identified through the assessment surveys. The most recent (and prior) community health needs assessments identified HIV/AIDS prevention as the top priority, with cancer and heart disease/stroke prevention following closely. Therefore all MSM PRC core research projects target HIV/AIDS prevention among African Americans including the projects titled HIV/AIDS Prevention among African American Women [1998-2004]; HIV/AIDS Risk Reduction among Heterosexually Active African American Men and Women: A Risk Reduction Prevention Project (2004-2009); and Prevention Intervention: Meeting Them at the Gate (An African American male targeted detainee release HIV/AIDS prevention project, 2004-2014).
Cancer research projects were also sought, written with CCB review and recommendations, resulting in funding of cancer-focused projects like the Cancer Prevention and Control Research Network (2004-2009), Ethno-cultural and Regional Variations in Prostate Cancer Knowledge, Attitudes and Screening Behaviors of African American and Jamaican Black Men (2006-2010), and the Southeastern United States Collaborative Center for the Elimination of Health Disparities (SUCCEED), which focused on breast and cervical cancer screening (2007-2012), and the Colorectal Cancer Screening Intervention Project (2004-2009).
These projects were incorporated into the expansion of the PRC research design by developing the PRC Community-based Cancer Unit, which is also advised by the CCB and works in tandem with the Atlanta Cancer Awareness Partnership (a city-wide community board that guides cancer research efforts) to increase its cancer-focused outreach in communities.
The PRC is an award-winning center that has been nationally recognized for its sustained collaborations with the CCB in effective community-based participatory research (CBPR). The organization Community-Campus Partnerships for Health honored the PRC in 2002 in recognition of the Center’s community partnership’s “exemplary contribution towards improving health professions education, civic responsibility, and the overall health of communities.” A Certificate of Appreciation for “outstanding dedication to communities with the REACH for Wellness Program” was awarded by the Fulton County Department of Health and Wellness in 2005. Georgia Healthcare Foundation’s presented the PRC with its 2010 Joseph D. Greene Community Service Award for “continued extraordinary commitment to improving the quality of health.”
The PRC also received four Centers for Disease Control and Prevention (CDC) awards: Outstanding Community-Based Participatory Research Award in 2004, Award for Excellence in Community-Based Research in 20054; an award for effective implementation of CBPR in 2010, and Best Practice Award in Community-Based Participatory Research in April 2011.
Community Partner Benefits
The employment of community persons on the core HIV research projects is a tangible benefit of the community’s participation as a partner. Other benefits community members have gained are research development, training and evaluation of core HIV research skills through training by PRC researchers and staff. Further, community-based radio broadcasts on a local Atlanta radio station, WYZE 1480 AM, have facilitated real-time dialogue between metropolitan Atlanta community members and researchers to increase awareness regarding HIV and other community health issues through which communities can be empowered to improve their health.
Other benefits have been the creation or expansion of jobs and health promotion initiatives through grants for community-led health initiatives, like the recent award of the Minority Men’s Oral Health and Dental Access Program – a community-campus project led by a community-based organizations, funded to increase an understanding of oral health issues and to increase access to oral healthcare among African-American men living in NPUs V, X, Y and Z.
An expansion of the research goals beyond HIV afforded the PRC with an opportunity to apply for and receive diverse grant funding, resulting in other projects benefitting the community. One such program involved decreasing the “digital divide” among communities in which few people had computers. Now the community area has a technology center that is still operational. This allows people in the community who did not have access to computers and the internet with the opportunity to expand their knowledge and develop skills to improve their standard of living.
The Colorectal Cancer Screening Intervention Project involved seniors in an education series on colon cancer screening tests. The information was disseminated to senior citizens facilities, recreational centers, YMCAs and churches in PRC’s partnering communities. The funding of evaluation projects has led to the establishment of our Evaluation Unit, in which evaluation leadership in partnership with community-based organizations has resulted in communities’ capacity to assess their own programs.
Academic Partner Benefits
The implementation of the CBPR model has been the cornerstone of the PRC’s success in building effective community-campus partnerships. This model is being used as the guide for other federally and privately funded grants that foster community-driven health initiatives designed to addressing health disparities and to also guide researchers on the processes critical to effective CBPR.
For example, the Community Engagement and Research Program (CERP), through the Atlanta Clinical and Translational Science Institute, funded by the National Institutes of Health to Emory University, is led by the PRC. CERP unites existing academic community research partnerships, develops new bi-directional collaborations and seeks to transform research from a scientist-subject interaction that generates publishable data to a more equitable partnership – one in which the process of research, as well as the outcomes, benefit both the researchers and the community.
The PRC also leads the Community Engagement Core for the National Institutes of Health-funded Center of Excellence in Health Disparities-Reducing Health Disparities in Vulnerable African American Families and Communities. The grant has the overriding goal of building the capacity of partner communities to reduce racial and ethnic health disparities through systematic engagement in the planning, implementation and evaluation of CBPR through health priority assessment, advising community-engaged research, and connecting families to medical homes.
Conclusion
Researchers that work with community coalitions utilizing a participatory approach build trust and a sense of ownership of the prioritized health issues through identifying the most culturally relevant approaches. While not without challenges due to differing priorities and being accountabilities5, major lessons learned are that: 1) community partnerships are developed over months or years, and therefore should not ideally depend on a single grant, and 2) genuine partnership means resources and control are shared and that academic partners must be prepared to share funds or to serve in a support role with communities serving as fiscal agents for the health initiatives that they lead3, 6.
The effective use of CBPR has helped the PRC and the CCB to develop collaborative solutions that have brought the community and the institution together as equal partners in developing targeted approaches to addressing health disparities.
For more information, visit Morehouse School of Medicine Prevention Research Center.
Acknowledgment
NIH: ULIRR025008, Clinical and Translational Science Award; CDC: U48DP000049, Health Promotion and Disease Prevention Research Center; U58DP000984, Racial and Ethnic Approaches to Community Health (REACH); U57CCU42068, Community Cancer Control
References
1Blumenthal, D.S. A Community Coalition Board Creates a Set of Values for Community-Based Research
Preventing Chronic Disease [serial online] Available from: URL: http://www.cdc.gov/pcd/issues/2006/jan/05_0068.htm, 2006.
22005-2009 American Community Survey [Georgia]/prepared by the U.S. Census Bureau, 2011.
3Henry Akintobi, T, Goodin, L., Trammel, E., Collins, D., & Blumenthal, D. “How do you set up and maintain a community advisory board?” Section 4b of “Challenges in Improving Community Engagement in Research,” Chapter 5 of The Clinical and Translational Science Awards Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. Principles of Community. Engagement, 2nd Edition. Washington, DC: U.S. Department of Health and Human Services, 2011.
4Centers for Disease Control and Prevention. Prevention Research Center 20th Anniversary Program. Accessed 4/25/07
5Blumenthal, D. Is community-based participatory research possible? American Journal of Preventive Medicine, 40(3), 386-389.2011.
6Blumenthal, D. “How do you start working with a community?” Section 4a of “Challenges in Improving Community
Engagement in Research,” Chapter 5 of The Clinical and Translational Science Awards Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. Principles of Community Engagement, 2nd Edition. Washington, DC: U.S. Department of Health and Human Services, 2011.
Tabia Henry Akintobi, PhD, MPH received her Master of Public Health degree and Doctorate of Philosophy in Public Health from University of South Florida’s College of Public Health. She is an Associate Professor of Community Health and Preventive Medicine at the Morehouse School of Medicine and Director of its Prevention Research Center. She has over a decade of experience in the conduct and evaluation of community-based participatory research, training and service initiatives.
Lisa M. Goodin, MBA is the Associate Director for the Morehouse School of Medicine Prevention Research Center. Ms. Goodin has responsibility for the management of the Center’s participatory community‐based research projects, development of community partnerships, management of evaluation programs, and health promotion and disease prevention initiatives. She led the Center’s Core HIV Risk Reduction project focused on African American women. She produces and serves as a co‐host on MSM PRC’s Community Health Connections radiobroadcast (designed to promote health and aid in eliminating health disparities) and is at the helm of the Center’s social media development and implementation.
LaShawn M. Hoffman is one of Atlanta’s most distinguished young civic leaders. An 10-year resident of the city’s southwest neighborhoods, Mr. Hoffman lives and works in Atlanta’s historic Pittsburgh community. He currently serves as Chief Executive Officer (CEO) of the Pittsburgh Community Improvement Association, Inc. (PCIA) a neighborhood-based not for profit community development corporation.Through his leadership, this neighborhood-based community development corporation is preparing for thoughtful development, both human and physical, as the Pittsburgh community embraces a city that is constantly changing. LaShawn’s other numerous civic activities includes Chairperson for the Morehouse School of Medicine Prevention Research Coalition Community Board.
