Community engagement in health research: two decades of experience from a research project on HIV in rural Uganda

To describe how a research project on HIV epidemiology in rural Uganda has engaged the community over the past two decades, describing activities, opportunities and challenges that have arisen. The review draws on the experience of the authors as investigators involved in the project at various times since its inception in 1989, and on project documents and peer-reviewed publications. The project attracts community interest, participation and support mostly through community groups. The three main areas of activity are: health care and promotion, HIV/AIDS prevention and care, and community development aimed at poverty reduction. Key opportunities arise from the long-term joint commitment of the project and the community over nearly 20 years, and the potential to accommodate research beyond HIV. Challenges arise from participation fatigue, countered by innovations for the community and investment in capacity development for staff, and from the need to balance community development expectations and the project focus on HIV research. Judged by criteria of longevity, acceptance, and scientific output, community engagement in this HIV research project in rural Uganda has been successful. The experience from this project contributes to the collective documentation and analysis of case studies from various research projects in developing countries which identify good practices from multiple stakeholder perspectives.