Community involvement in biomedical research conducted in the global health context; what can be done to make it really matter?

Abstract

BackgroundCommunity involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. Rules on involving the population affected when conducting research have been established in these fields. But what is the role of community engagement in clinical research and observational studies conducted in biomedical research outside of these specific areas?Main body of the abstractMore than 20 years ago, in the field of HIV medicine, regulatory bodies and funding agencies (such as the US National Institutes of Health) recommended the constitution of a formal organism, the Community Advisory Board (CAB), as part of the study requirements for HIV trials. More recently, CABs have been adopted and used in other fields of medical research, such as malaria. CABs are not without limitations, however, and there is little research on the effectiveness of their use in achieving community protection and participation. Nevertheless, CABs could be a model to import into clinical trials and observational research where no alternative model of community representation is currently being used.ConclusionsAllocating more resources to training and shifting more power to community representatives could be part of the solution to current CAB limitations. However, for researchers to be able to apply these recommendations on community involvement, certain conditions need to be met. In particular, funding agencies need to recognize the human and financial resources required for serious community involvement, and the academic environment needs to take community involvement into account when appraising, mentoring, and training researchers.

The Global Health Research Capacity Strengthening (GHR-CAPS) Program: trainees’ experiences and perspectives

“…It has also given us some tools on how to navigate some of the complex issues that can arise and to apply them in our work. Many of us have even presented or written about what we have learned and applied (eg, "protecting confidentiality while disseminating locally" 15 ; "ethical tensions in GH fieldwork" 16 ; " a definition of GH for nursing" 17 ; "how can the voices of French-speaking researchers be better heard" 18 ; and "Community involvement in biomedical research in GH" 19 ).…”

Lessons learned from engaging communities for Ebola vaccine trials in Sierra Leone: Reciprocity, reliability, relationships and respect (The Four R’s)

“…In addition to the potential benefits of CE, a review of evidence conducted by Attree et al highlighted the potential for unintended negative impacts (17); these include physical and mental exhaustion from the requirements of engagement that may not always outweigh the expected benefits (17). CE requires not only time and resources, but also researchers that are competent and capable of taking on the challenges of establishing this engagement with the community (18). A systematic review that analyzed community participation in health found that a community's "social hierarchies and economic or political divisions" were reflected in participation and may raise barriers influenced by power and resource prioritization [(19), p.457].…”

Standardized metrics can reveal region-specific opportunities in community engagement to aid recruitment in HIV prevention trials

“…The community engagement process continues throughout the lifecycle of a clinical trial, from concept generation through results dissemination and study close-out [ 3 , 4 ]. Community engagement is inclusive of community education, study recruitment, retention, and product adherence, and is recognized as a significant contributor to these important clinical trial elements [ 2 , 5 ].…”