Community-based participatory research (CBPR) continues to come up in conversations surrounding diversity and inclusion in clinical research. This specialized method of research can be used to investigate public health issues such as HIV and violence prevention, mental health issues, and chronic conditions such as diabetes and heart disease. As researchers engage in this type of research, it is important for IRBs to understand what it is, how it can be used to inform efforts to improve the health of our communities, and how the review of this type of research calls for specific expertise.
What Is CBPR?
CBPR is a translational approach to research that focuses on equal participation between the researchers and the community being studied. It seeks to build community capacity, improve health outcomes, and, at times, enact policy or social change within the community. CBPR calls for full cooperation between all the stakeholders in the design, implementation, and evaluation of the study.
In this specialized method of community engagement, community members and community and organizational leaders are a part of the scientific process. There is equal participation from everyone involved to ensure that the design of the research is sound and impactful, recruitment processes are realistic and achievable, and the implementation of the intervention is effective. Data are analyzed and results are shared among all the partners involved in the research.
CBPR begins with understanding the needs of the community. Thought leaders from the community, personnel from community organizations, community members themselves, and researchers from academia come together to assess needs and evaluate common goals and interests. For example, communities with chronic health conditions such as diabetes may find that when researchers work closely with community physicians, clergy, and civic leaders, they can impact the health of the local population by implementing exercise programs, offering nutrition education in community settings, and assisting local food banks to offer more healthy options to residents.
Advisory boards may be formed to formalize the process and establish priorities for the community. The honest exchange of information between stakeholders involved in the research is a hallmark of CBPR, as it informs a deeper understanding and appreciation for the health indications you are attempting to impact and facilitates the setting of expectations for everyone involved. Through their interactions and fact-finding exercises, the team may identify additional priorities for the community or adjust their study design to ensure the most benefit for the community.
Keys to Success
CBPR calls for collaboration and open communication between the various stakeholders. Full transparency and the sharing of ideas and experiences is extremely important for CBPR to be effective. Trust in and between the groups involved in the CBPR process is also essential.
While the sharing of power is an important element for CBPR, it also presents some challenges. Academic researchers have the name recognition, expertise, and reputation to receive funding for projects aimed at improving health outcomes in a community. Community leaders have access to the participants and the expertise to promote community capacity. All parties must share the power equally for the benefit of the community.
Any products or tools developed as a result of the research are also shared equally among all stakeholders. This not only enhances the relationships and trust that were built during the process; it ensures that the programs or knowledge can be sustained well after the research is complete.
Challenges to CBPR
Building trust and rapport between the researcher and the community takes time and dedication to the process. Communities have immediate health needs that require attention, and they may not have the luxury of waiting months or years for the process to evolve. Sustainability and evaluation of the resulting programs may also be difficult to assess. If funding is no longer available through grants or donations, community representatives may not be able to provide the resources necessary to continue programs implemented during the research.
Considerations for the IRB
The federal regulations state that the IRB should possess professional competency to review research in terms of “institutional commitment and regulations, applicable law, and standards of professional conduct and practice.” Therefore, IRBs should include persons knowledgeable in the areas of research under review. Institutions with investigators who conduct CBPR should include members on the IRB who possess similar expertise. Community representatives also play an important role in the review of research involving CBPR.
CBPR is often utilized in research that aims to reduce or eliminate racial and ethnic health disparities in under-represented populations. The IRB may need to consider special protections for vulnerable populations involved in the research.
Given the fluid and translational nature of CBPR, IRBs should be flexible and work closely with researchers to understand their needs while also ensuring the protection of human subjects. Institutions considering applications for AAHRPP accreditation will note Element I.4.C requires organizations with researchers conducting CBPR to demonstrate how they promote “the involvement of community members, when appropriate, in the design and implementation of research and the dissemination of results.”
To find out more about CBPR and community engagement in research, view our webinar Racial Diversity in Clinical Trials: Building Trust in Participant Engagement.