The role of community advisory boards in health research: Divergent views in the South African experience

Abstract

In the light of the growing involvement of community advisory boards (CABs) in health research, this study presents empirical findings of the functions and operations of CABs in HIV/AIDS vaccine trials in South Africa. The individual and focus group interviews with CAB members, principal investigators, research staff, community educators, recruiters, ethics committee members, trial participants and South African AIDS Vaccine Initiative (SAAVI) staff members demonstrated differences in the respondents' perceptions of the roles and responsibilities of CABs. These findings question the roles of the CABs. Are they primarily there to serve and be accountable to the community, or to serve the accomplishment of the research objectives? Four emergent themes are discussed here: purpose; membership and representation; power and authority; sources of support and independence. The CABs' primary purpose carries significant implications for a wide range of issues regarding their functioning. The dual functions of advancing the research and protecting the community appear to be fraught with tension, and require careful reconsideration. Résumé À la lumière de l'implication croissante des conseils consultatifs communautaires (CAB) dans la recherche dans le domaine de la santé, cette étude présente les résultats empiriques des fonctions et des opérations des CAB dans les essais vaccinaux sur le VIH/ SIDA en Afrique du Sud. Les entretiens individuels et en groupe ont été menés avec les membres des CAB, les principaux chercheurs, le reste du personnel, les éducateurs de la communauté, les recruteurs, les membres du comité d' éthique, les participants aux essais et la South African AIDS Vaccine Initiative (SAAVI). Les auteurs ont mis en évidence les différences de perception des personnes interrogées à propos des rôles et des responsabilités des CAB. Ces conclusions posent la question du rôle de ces derniers. Sont-ils d'abord là pour être au service de la communauté et être responsable devant elle, ou sont-ils là pour permettre d'atteindre les objectifs de l' étude menée ? Quatre thèmes ont été relevés et sont examinés ici : le but du CAB, sa composition et sa représentation, son pouvoir et son autorité, ses soutiens et son indépendance. S'interroger sur le principal objectif des CAB est essentiel car le choix de telle ou telle réponse entraîne des conséquences importantes sur leur mode de fonctionnement. Sa double fonction consistant à la fois à faire progresser la recherche et à protéger la communauté semble entraîner des tensions et ne plus être tenable. Keywords

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

“…Since there is always a level of risk involved in taking part in the research, CABs' role in facilitating the research might result in tension with their protective stances. Drawing on their empirical findings on integrating CABs into HIV/AIDS vaccine trials in South Africa, they argue that mixing the roles seems no longer sustainable and promising (Reddy et al 2011). While the scope and severity of risks in AIDS research might seem more complicated, it should be noted that pharmacogenetics studies are also usually an add-on to a clinical trial, escalating the overall risks of enrolling in the research.…”

“…By drawing an analogy with how the researchers left out from ethical review of the research, Reddy et al (2011) challenge the expectation that CABs can play both roles of facilitating the research and providing oversight. Since there is always a level of risk involved in taking part in the research, CABs' role in facilitating the research might result in tension with their protective stances.…”

“…The reliance of CABs on external funding resources might challenge the independence and transparency. The reliance of CABs on the researchers' financial support has been shown to result in frustration among CABs members (Reddy et al 2011). It might be even more problematic in industry-sponsored research concerning conflict of interest in decisions CABs make on behalf of the communities.…”

Assessing the effectiveness of a longitudinal knowledge dissemination intervention: Sharing research findings in rural South Africa

“…Radio-based soap operas or talk shows (edutainment) have been effective in engaging the public with health research in Malawi (Nyirenda et al 2016) and South Africa (Jana et al 2015). Longitudinal HDSS sites have an opportunity to develop strategies for regular information sharing through community advisory groups (Reddy et al 2010) and wider village-based dissemination. While difficult to do, it would be important to clearly articulate the expected outcomes of these different strategies in order to evaluate their effectiveness if undertaken in HDSS sites.…”

‘We are the eyes and ears of researchers and community’: Understanding the role of community advisory groups in representing researchers and communities in Malawi

“…31 Despite these few successful examples, challenges to engage communities appear to come down to power dynamics between researchers and CAG members, low science and ethics literacy, and limited access to resources independent from the research projects that they advise on. 32 Our results suggest that neither democratic nor purposive selection approaches for CAG members led to effective representation of community concerns to reduce harm in research.…”