Engaging community to support HIV prevention research

Actively engaging communities in effective partnerships is considered critical for ethically robust and locally relevant HIV prevention research. This can be challenging in developing countries that have little prior experience in this area. This paper summarizes processes and lessons learnt while setting up the Community Involvement Plan of National AIDS Research Institute, Pune, India. Formal partnerships were established with voluntary agencies. The focus was on using strategies adapted from participatory learning and action techniques. The community program was implemented through peer educators specifically identified from the communities where partner non-governmental organizations function. At the grass root level, peer educators imparted education to the common people about research studies and helped to implement community based recruitment and retention activities. The focus was on facilitating periodic interaction between the outreach workers of the research team and the peers and modifying the strategies till they were found locally implementable and appropriate. Through adequate time investment, mutually beneficial and respectful partnerships with community based organizations and grass root level workers, the community became actively involved in clinical research. The program helped in developing a sense of partnership among the peers for the research conducted by the research organization, widening the net of community education and identification of research participants. By building trust in the community and implementing research within an ethical framework, culturally sensitive matters were appropriately addressed. The community involvement process is long, laborious and ever-evolving. Effective community engagement requires institutional leadership support, adequate funding and commitment by researchers. It is possible to sustain such a model in a resource limited setting.