Meeting our children's needs: Community-driven HIV/AIDS research partnership

Issues: Community partnerships are essential to the development of relevant, meaningful, ethical, and successful clinical trials. In an international pediatric HIV/AIDS research network, community members collaborate with investigators to develop studies that meet their children's needs.

Description: This case study demonstrates how community members identified a health issue affecting their children and partnered with researchers to develop a study to address their concerns. Families noticed psychiatric issues among their HIV-positive children. They wanted to know if these issues resulted from neurological, mental, behavioral, cognitive, or environmental causes, or possibly HIV infection and/or antiretroviral therapy. In 2002, community members made psychiatric issues a network priority and forged key partnerships to support this important research.

Lessons Learned: This community-driven partnership resulted in a high-priority study among families living with HIV/AIDS. In 2005, the study opened to enrollment. Five-hundred eighty-two participants enrolled in the study at 29 sites across the United States. The study marks a successful partnership between the community, researchers, and different research agencies.

This partnership empowered the Community to shape pediatric HIV/AIDS research to meet their children's needs. They learned that their voices could result in action. The investigators learned the value of community-driven research even when it challenges their traditional research paradigm.

Recommendations: This case study highlights the importance of community involvement in HIV/AIDS research. The community will update their scientific priorities annually and participate in the development of the research network's agenda and clinical trials. This partnership will ensure the development of studies that respond to community priorities.