Lessons Learned for Designing a Flexible, Activity-Based Community Advisory Committee for People Living With HIV Who Use Drugs

Abstract

Community advisory committees (CACs) are frequently used in research as one way to obtain feedback from community members (e.g., patients, caregivers, health advocates) on research design, analysis, and dissemination. However, CACs may not always be designed in ways that are accessible for communities experiencing the intersections of complex health issues, institutionalized stigma, and marginalization. In this case study, we share our experiences and reflections designing and facilitating a flexible and activity-based CAC model for people living with HIV who use drugs. This model was designed to consult this community on for a study about the acute care hospital stays of people living with HIV who use drugs, as part of a larger program of research conducted in partnership with Casey House, a subacute hospital for people living with HIV.

Drawing on our Research Rec’ CAC model, we present “lessons learned” for graduate students and early-career researchers interested in developing a CAC to engage community members to advised on their research. Considerations include adopting a participatory approach, considering research and experiential objectives, building in different types of activities, attending to issues of accessibility and stigma, and building trust and community. We conclude with a table of questions that may be used to reflect on CAC design and implementation for graduate students and early researchers.

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