Centered around trust, communication and collaboration, community based participatory research (CBPR), focuses on the needs, expectations, and desires of community members for engaging in HIV research. Community participation in HIV research culminated with the early vaccine trials for HIV prevention. Researchers truly embraced the community and partnered with their CABs to identify potential study problems, inform recruitment practices, monitor research and ultimately disseminate study findings. It is widely perceived that without community involvement, participant recruitment and the overall quality of the research would have been compromised. This experience demonstrated the power of advocacy and the importance of transparent and effective communication between researchers, participants and the community.
In order for CBPR to be successful, it must be understood that investment in meaningful and effective academic and community partnerships take time, financial resources, training in community engagement, cultural competency and unwavering institutional support must be front and center and a priority for all research efforts within all CFARs. CPBR is not to be viewed as a tokenistic process and it should not be just checking the box. CBPR should always be considered as a best practice to engagement in successful research practices.
Top Down or Bottoms Up……
There is often a power dynamic between researchers and community. Power inequities due to expert knowledge and training as well as differences in circumstances often lead to top-down engagement with the community. (Also, the belief that researchers are the experts and communities are not, is a notion that continues to perpetuate the research field) That is, an expert develops an idea, without community input, tests the idea in the community (i.e. focus groups) and ultimately implements the research. CBPR must include the community at the development stage, and all stages of research from beginning to end to avoid missteps in the research process. Methods used to engage with communities are also often researcher driven and utilize formal consultation methods, such as interviews or focus groups, that do not afford PLWHIV any power to influence the research process. Other barriers to effective community involvement in HIV research include limited understanding or awareness among researchers or community members about what community involvement requires, what the community really needs and poor communication between researchers and communities, or a history of community mistrust in research.
Bottom-up approaches start with the community to identify the problem (e.g., include persons living with HIV, patient advocates, clinicians, and researchers), involves the community (who are experts through lived experience) in iterative development of solutions or approaches and engages the community in the performance of research. When these approaches are blended, through a) academic and community flexibility and power sharing, b) training in community developed cultural competency and/or c) in the intentional identification of scientific leadership who are also part of the community, engagement as defined by CBPR principles. Recognizing multiple realities and sources of knowledge can increase the validity of the findings and lead to successful research methods and results. Effective engagement processes can help build trust within communities, ensure efficient implementation of decisions, and result in better science and allocation of services.
The Providence/Boston CFAR’s newly engaged Community Research (CEnR)Partnership Development Program seeks to change the paradigm by ensuring multiple levels of Community Engagement in HIV research and relationship building through the development of a shared vision for research. The underlying goals are relationship building with community, co-learning, contesting inequities, redistribution of power and a collective action to advance justice, transparency, equitable distribution, shared decision making, and accountability within the research process.
It is important to remember that history has demonstrated to us that partnerships between academia and the community are capable of accomplishing tremendous positive change/s for and in research. Continued advancement of CBPR in HIV research will require the development and integration of specific community engagement standards and requirements and commitment and support to do so from funders, conferences, research journals and institutions.