Stakeholders engagement and advocates' role in biomedical HIV prevention clinical trials – Perspectives of advocates working in Africa

Objective: The aim of the study was to identify the perspectives of community advocates working in Africa about meaningful and ethical stakeholder engagement with biomedical HIV prevention trials; and their role in facilitating this engagement. Materials and Methods: An open-ended questionnaire was administered through an online survey made accessible through listservs and community liaison officers devoted to biomedical HIV prevention research advocacy. The survey included five questions that explored respondents' perspectives about meaningful and ethical stakeholder engagement in clinical trials, and the roles of advocates in facilitating this engagement. Analysis of the 32 transcripts consisted of structural coding of transcripts, summary of responses, identification, description of emerging themes and quotes reflecting the themes corresponding to interview questions. Results: Meaningful and ethical community engagement was majorly conceptualised as the involvement of stakeholders throughout the research life-cycle: Planning, design and implementation of clinical trials; and providing community-wide information about trial progress and results. Identified advocates roles include advocacy for ethical standards of practice, facilitating community research literacy and community inputs into research protocols, empowering community members to engage with researchers, and monitoring research practices. Conclusion: Advocates self-identified their perspectives on and roles in meaningful and ethical engagement with research conducted in Africa. Some of these roles have not been articulated in community engagement guidance documents like the UNAIDS/AVAC Good Participatory Practice guidelines.