Healthy African American Families is a sustained community participatory organization that conducts research on pregnancy health and other public health issues in LA. The organization transformed the use of community-based participatory research into a productive model of community-partnered participatory research. In this work, the local community is actively engaged in participatory projects where the locus of control and ownership is mutual between partners and where there is respect, collaborative leadership, reciprocation and sharing, mutual learning, relationship building, problem solving, and joint action. In CPPR, the local community is not researched, rather research is conducted with the community as a full partner in the endeavors.2,3,5
The organization proactively initiates its own projects, soliciting its own partners, in response to community-identified needs.
Healthy African American Families is an intermediary link and catalyst between community and science expertise, voices, and resources for local public health advocacy, data, and research for local benefit. Throughout its development, HAAF has addressed key questions about the conduct of research with a community of color, such as “What does it mean to be participatory in an African American community?”, “How is equity among partners possible when there are underlying power differentials?”, “How do we move from a hierarchical to an egalitarian project structure?” and “How do we increase ownership of both issues and solutions?” In addition, HAAF has considered what kinds of information are needed to address community public health issues, how should this information be presented, how to recognize, share and respect voices and expertise from both science and community, and what skills and resources are necessary at the community level for research and for intervention development.
Despite an increased sustainability throughout more than a decade of work, HAAF still sits precariously. As with many CBOs, financing is an ongoing issue. Active involvement of key people remains important in the project’s conduct and survival.10
The organization could have ended at several key points of struggle and conflict during its history but it survived largely because of the individual resolve of the coauthors and CAB members to work through bureaucratic issues and to openly address challenges in working with a historically oppressed community. These challenges included distrust, conflict over community benefit and interventions, and data access and usage.
When HAAF began, government and academic institutions were not trusted in the local community for a variety of reasons. Some of this distrust was related to the legacies of Tuskegee and of scientific racism.27–30
However, the original project was also initially perceived as yet another program coming into the community as a result of the 1992 LA riots.16
It was suspiciously viewed as another “here today, gone tomorrow” project with no real intent to provide community benefit.16
The distrust was based on prior local community experience with research projects with preset agendas, no clear or immediate community benefit, unequal power relationships, disrespect for community knowledge, and that allowed community victimization, humiliation, and stereotyping.5,16
Furthermore, previous research did not address questions immediately important to communities, nor help community members to investigate these, and did not examine environmental and broader social factors related to disease occurrence.5,16
Data concerns included having culturally-informed interpretation of community data, community access to collected data, and translation and dissemination of findings to community audiences.5,16
Within HAAF, we repeatedly addressed these issues openly and honestly and worked to ensure project follow-up, data access and dissemination in lay language, and direct community benefit in multiple ways throughout the project.
The conduct of CPPR requires an honest assessment of the strengths and limitations of each partner so that strengths may be shared and limitations addressed by addition of new partners. Community-partnered participatory research partnerships also require time, commitment, patience, mutual respect, labor, money, structure and flexibility, problem-solving, evaluation, and appropriate personalities for collaborative work.2,21,31,32
Within HAAF, we found that when these elements did not exist, the partnership was divisively and antagonistically pulled into its separate member components. We then depended on our long-standing commitment to the project to resolve the underlying issues.
The HAAF CPPR process builds on already-existing community resiliency and resources, and on centuries of self-help, problem-solving, cooperative action, and community activism within the African American community.1,33–39
This commitment to caring for neighbors is an African American cultural strength. This is a radically different perspective of African American communities, which have previously been viewed as deficient.5,34,35
The commitment to collective action, traceable to African cultures and reinforced and modified during slavery and post-slavery, provided group survival, care, resources and information not available through the dominant society. Collective action and self-help created mutual social obligations, responsibilities, and interdependence. This occurs between individuals, within family and social networks, and in the broader community. Historically, these activities occurred through individual and family action, churches, clubs, secret orders, mission societies, hospitals, and auxiliaries and often included working with federal, state, and local governments.1,33–39
This rich history and cultural dynamics provided the foundation for the development of HAAF. In essence, the African American participatory approach was already established historically - nothing new needed to be created.
The HAAF CPPR model is a valuable public health approach for working with communities of color. Community partnering, with mutual ownership, responsibility, liability, and benefit, is the heart of the CPPR process. In CPPR, an intimate relationship is formed where communities are not merely advisors to academic or clinical partners, nor do they act in a time-limited way. Rather community members/representatives are fully and equitably engaged as committed stakeholders and owners in the entire research process, directly participating in problem-solving, project conduct, and benefits over a long time period.
The CPPR process by itself cannot be the sole solution to decades of racism, job loss, environmental injustice, and neglect of infrastructure within disenfranchised communities. However, CPPR, as exemplified by HAAF, can become one means for tackling broader social, economic, and environmental issues by increasing community needs assessments and community voices against adverse outside influences. Community-partnered participatory research can be a community-oriented, self-help mechanism for directing power, collective action, system change, social justice, and civil rights in addressing health disparities at the local level.