The role of community advisory boards in community-based HIV clinical trials: a qualitative study from Tanzania

Abstract

Background Community Advisory Boards (CAB) have become essential organs of involving communities in HIV clinical trials especially in developing countries. However, limited empirical evidence exists on the role of CABs in low and middle-income countries including Tanzania. This study aims at exploring the role of CABs in community-based HIV clinical trials conducted in Tanzania. Methodology We adopted a phenomenological approach to purposefully select HIV clinical trial stakeholders. These included CAB members, researchers and Institutional Review Board (IRB) members in Tanzania. We conducted In-depth Interviews (IDIs) with ten participants and three Focus Group Discussions (FGDs) with eighteen participants. The data were thematically analyzed with the aid of MAXQDA software version 20.2.1. Results The findings indicate that at every stage of implementation of a community-based HIV clinical trial, a functioning CAB is important for its success. This importance is based on contextualization of the informed consent process and protocol, managing rumours in the community, weighing trial risks and benefits, sensitizing the community, assisting participant recruitment, tracing and retention. However, being perceived as financial beneficiaries than community representatives emerged as a challenge to CAB members. Conclusion The study empirically indicates the need for functioning CABs in every stage of implementation of community-based HIV clinical trials. The roles of which are interwoven in serving research goals and protecting the interests of the community and that of trial participants.

Community engagement in research addressing infectious diseases of poverty in sub-Saharan Africa: A qualitative systematic review

“…Nineteen studies [ 11 , 12 , 14 , 15 , 48 , 49 , 53 – 56 , 59 , 60 , 62 – 65 , 67 , 72 , 73 ] provided data about community engagement in HIV/AIDS-related research, while 14 studies [ 9 , 12 – 15 , 46 , 47 , 50 , 54 , 60 , 69 , 72 – 74 ] provided data on malaria-related research. The remaining studies provided data on Schistosomiasis [ 46 , 58 ], Ebola [ 45 , 68 ], tuberculosis [ 50 ], Lymphatic Filariasis [ 61 ], and Typhoid [ 52 ].…”

“…Depending on the local context, the CAB plays multiple roles [ 55 ], which are crucial for the success of the research, from ensuring that the research fits and addresses the local needs and views to building trust and partnerships were also crucial in shaping the research strategy and effective implementation [ 74 ]. Thus, research institutes and academics must ensure functional and representative CAB that fully and responsibly operates in the entire research cycle.…”

Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework

“…Intermediaries would largely mediate the discussion and decisions regarding benefit-sharing lather becoming ultimate decision-makers. Similar to other clinical trials, CAB in HIV vaccine trials, are made up of representatives from the community and usually act to advance the goals of the research community while protecting the interest of the researched community [ 29 ]. However, not all clinical trials will have a fully functioning CAB and this could create a loophole when deciding about benefits to be shared.…”

A scoping review of smoking cessation pharmacogenetic studies to advance future research across racial, ethnic, and ancestral populations

“…CAB review study details and offer feedback on proposed approaches with a goal of increasing study accessibility to the lay public ( Mitchell et al, 2020 ). Use of these strategies along with others can help to tailor ascertainment strategies, increase participation, and improve retention ( Wong et al, 2021 ; Pancras et al, 2022 ). A few of the reviewed trials reported use of a CAB in study development ( Ahluwalia et al, 2006 ; Cox et al, 2012 ; Lerman et al, 2015 ).…”