The value of outside engagement-civil society led engagement in PopART


BACKGROUND: Between 2013 and 2018 the PopART study, a randomized study evaluating community level impact of a package of HIV prevention interventions on HIV incidence, was conducted in South Africa and Zambia. Community Advisory Boards (CABs), a common mechanism of community engagement, were established early in the research process and served as a main form of communication. In Zambia, CAB engagement included quarterly meetings, protocol review, and participation in national HIV events. At community level, however, the CAB had limited spaces to provide feedback to community health structures, civil society organizations (CSOs) and the general population. To help address this gap, seven CSOs formed the Community Partnership Platform (CPP). This 'outside-in' or CSO led model of engagement built broader support for the study intervention.
METHODS: The CPP partnered with the PopART trial team to build capacity of stakeholders on the Good Participatory Practice guidelines (GPP). The CPP used a mixed method approach to identify the impact of the trial sites' stakeholder engagement programs. Score cards were created to anonymously evaluate perceived stakeholder engagement quality by the community in line with GPP. Focus groups were conducted with a range of stakeholders to provide a robust picture of community involvement throughout the research process. Findings were reported back to the trial in real-time.
RESULTS: Through community trainings, the CPP identified treatment literacy needs and supported development of effective training tools and evaluation measures. Through networking, the CPP held meetings with at-risk populations to create demand, increase awareness, and ensure meaningful engagement with the study team. At the national level, the CPP represented community groups and CSOs in the National Steering Committee of the PopART study. This helped amplify the community voice during Pop ART study forums.
CONCLUSIONS: The use of CSOs as a community engagement mechanism is critical to optimizing the research process. The CPP initiative provided a parallel opportunity for engaging broader stakeholders in research and ensures the wider viewpoints of a community are included. This approach has the potential to improve transparency and accountability at a range of stakeholder levels from trial staff to policy makers.