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Being involved in researching community engagement in HIV vaccine research I have not had an input into the identification or prioritisation of stakeholders. The sites at which I have conducted research tend to use an approach in which they partner and collaborate with existing governmental, NGO and CBOs, religious organisations, health and HIV-related organisations in the community in their efforts to raise awareness of the research being conducted. The primary mechanism for stakeholder engagement in these settings, however, is the CAB.
In the context that I have been conducting my research, a primary strategy described for engaging the community and involving them in the research process is through the CAB advisory mechanism. Community members who represent NGOs and other organisations in the setting in the research is being conducted are invited to become CAB members by research centre community outreach workers. These CAB members fulfil the crucial role of providing the community perspective in the research process. However, such a perspective, in which the mechanism for community engagement is primarily through the CAB is limiting as it is not clear to which CAB members represent all sectors of the community, who the community is that they are presenting and the extent to which message about the research filters through to maximum stakeholder groups who are affected by the research. These factors impact inter alia, trial recruitment, knowledge and awareness of the research and the ability to ensure that the clinical research takes into account the specificities of the socio-cultural context in which it is being conducted. Operational, ethical and community engagement imperatives, therefore, are not optimally aligned.
My colleagues and I have been involved in research where our focus is on describing and evaluating current community engagement practice at a research centre in the Cape Town, South Africa. This was also the focus of my doctoral research. Across the two settings in which I have been conducting this research I/we utilised formative activities such as focus groups and key informant interviews to develop an understanding of and document stakeholder’s descriptions, understandings and perceptions of community engagement and their role in this process at these sites. I/we, also examined the community engagement plan developed by the research centre staff to guide their community engagement activities and reviewed the literature on community engagement in HIV vaccine research. The stakeholders involved in our formative data collection have been clinical research participants, community outreach staff and CAB members. The data collected has provided us with an understanding of how community engagement is currently being practiced, understood and experienced by stakeholders involved in this process. The next step in our formative research is to develop a survey to assess community members’ levels of knowledge of HIV vaccine research and their confidence in making decisions about HIV vaccine trial participation.
