Community Involvement in Development of Evidence-Informed Recommendations for Rehabilitation for Older Adults Living With HIV

BACKGROUND: Involving community in development of clinical practice guidelines (CPGs) can decrease the gap between patient preferences and research evidence. OBJECTIVE: To incorporate meaningful participation of people living with human immunodeficiency virus (HIV; people living with HIV [PHAs]) in the development of evidence informed recommendations for rehabilitation practice. METHODS: PHAs were involved in a process to develop practice recommendations internally as members of a project team and externally through formal endorsement of the recommendations. LESSONS LEARNED: Lessons learned include 1) providing time to develop as a team and understand the roles, biases, and expertise of each member, 2) engaging community in initial discussions to determine the most meaningful involvement, 3) realizing that participation in research may trigger anxiety and stress in community members, 4) developing terms of reference to clarify roles and expectations, 5) providing opportunities for skill development, and 6) conducting formal evaluation of the process and satisfaction of community. CONCLUSION: Meaningful inclusion of community can improve the quality of practice guidelines.