Rethinking the practice of community engagement in health research: the case of the tenofovir trials in Cambodia and Cameroon.

Abstract

Recent developments in the governance of research have recognised the part that communities can and should play in emergent and inventive research. It is now widely agreed that community engagement is essential in certain kinds of research – indeed, an ethical prerequisite – and that it is indispensable to the success of many health research projects. Unfortunately, as an ethical requirement, community engagement has sometimes been seen as a hurdle to jump over rather than as an integral part of the research process. At times, inadequate attention has been paid to how and when community engagement should be implemented and on the need to engage the community meaningfully and genuinely throughout the research process. This is concerning given that researchers and sponsors invest large sums of money in the development of a product, training on clinical procedures, facility designing and building, etc., and yet seem to have repeatedly ignored the importance of meaningful community engagement processes, often at great cost. The aim of this study was to demonstrate, using the tenofovir trials that were stopped in both Cameroon and Cambodia in 2005, that inadequate community engagement might lead to significant scientific losses, whereas early, sustained and meaningful community engagement could prevent this from occurring. The study involved no human participants and used a case study design approach that was based on the secondary data analysis. The cases (Cameroon and Cambodia) for the study were chosen for a number of reasons, but perhaps most significant of these was that the Good Participatory Practice (GPP/AVAC) guidelines which set standard practices for stakeholder’s engagement in HIV vaccine trials, were established in response to the premature ending of the tenofovir trials in these two countries. Several lessons were learned from this study: one of the major ones was that it is not sufficient for researchers to maintain high ethical and scientific standards in a study; in many cases, it is equally important and necessary for them to work very closely with the communities through various flexible mechanisms. Examples of such mechanisms include the community advisory boards (CABs), as well as the local ethical review boards (ERBs). In cases where community engagement is relevant, participation should commence from the very start of the protocol development. Participation should focus on the methodology, participant selection, the procedures for the study results disseminations at different points of the research and finally on enhancing informed participation. Any consultation with the community after the protocol is developed may be regarded as cosmetic rather than as genuine community engagement.