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From Formation to Maintenance: Developing a Community-Led Coalition Within a Center for AIDS Research
Emma Sophia Kay1, Harriette Reed-Pickens1,2, Donna Porter Crawford1
1The University of Alabama at Birmingham, USA.
Abstract:
Community-engaged research (CEnR) involves a collaborative research approach between researchers and community members. Community advisory groups, often central to CEnR, have a strong tradition and role in HIV research. Applying an established framework for community group processes, we describe the formation, operation, and maintenance planning of a community-led coalition housed within a Center for AIDS Research (CFAR), whose mission is to support HIV-related CEnR. While most academically affiliated community groups are led by researchers, our Coalition utilizes a governance structure that prioritizes community leadership. Using a human-centered design framework, we led a 2-hr group meeting on November 25, 2025 in which Coalition members discussed group strengths and weaknesses, opportunities for change, and how to better meet the needs of the community. Human-centered design is an accessible framework used to stimulate group discussion and identify priorities. Participants identified community-led leadership and geographic diversity as major strengths. Although representation of racial, ethnic, sexual, and gender minorities remains insufficient, enhancing diversity of the coalition was identified as both an opportunity for growth and the Coalition's top priority for the coming year. Our Coalition's experience exemplifies the dynamic nature of community groups and the need to continuously revisit group priorities. It also highlights the importance of community-led advisory groups to ensure HIV researchers and their support systems center community needs and prioritize them.
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