Community Collaborative elevates community voices in HIV research
Kiwan Lawson, Michael Durkin, and Octavio Mesner participating in the Midwest D-CFAR Research Community Collaborative meeting on April 11, 2025. (PHOTO: Tina McGrath Photography)
On Friday, April 11, the Midwest D-CFAR Scientific Working Group (SWG) hosted a gathering of the Research Community Collaborative at the Missouri Foundation for Health, located in the heart of the Tower Grove neighborhood. Community leaders, researchers, academic institutions, and state partners from across Missouri joined the conversation to advance community-engaged HIV research and lay the groundwork for equitable health solutions that address the root causes and social determinants of health.
The day was structured intentionally to foster inclusive dialogue and meaningful engagement. Participants connected through a dynamic “speed dating” icebreaker, designed to create bridges across silos and build trust among attendees. These interactions set the tone for a day of breakout sessions where groups brainstormed project ideas aimed at addressing the unique challenges faced by Black-led organizations, rural communities, unhoused populations, and those engaged in harm reduction work.
Erise Williams gives a presentation at the Midwest D-CFAR Research Community Collaborative meeting on April 11, 2025. (PHOTO: Tina McGrath Photography)
A key highlight of the convening was a powerful talk by Erise Williams of Williams & Associates, who reflected on the transformative role of relationships in research and care. “The power of relationships lies in their ability to connect, support, and inspire people in profound ways,” he shared, emphasizing that real collaboration starts with inclusion from the beginning—not as an afterthought. “Don’t bring us to the table after you’ve made the plan. Bring us in from the beginning. That’s real partnership.”
The collaborative also introduced a five-step model for building authentic partnerships: 1) initiation, 2) planning, 3) community engagement, 4) implementation, and 5) evaluation and sustainability. This framework encourages intentional collaboration between academic institutions and community partners, ensuring that all voices are heard and solutions are co-created, not imposed. Tools like group concept mapping were suggested to democratize idea generation and guide decision-making with community priorities at the center.
As Kimberly Smith, a leading Black HIV researcher, once said, “To truly improve the continuum of care, we must listen to and partner with Black communities. Only by centering their experiences can we close the gap and achieve health equity.” This sentiment was echoed during the collaborative, reinforcing the belief that authentic engagement of impacted communities is paramount.
Participants in the Midwest D-CFAR Research Community Collaborative meeting on April 11, 2025. (PHOTO: Tina McGrath Photography)
Participants at the event shared their thoughts on the impact of the day:
“By engaging communities in the research process, researchers can learn about local needs, develop solutions, and ensure research is relevant and impactful, ultimately leading to meaningful societal improvements. The connection between community partners, those with lived experience, and researchers is monumental to a project’s success,” said Jordan Braxton, a collaborative member.
Lindsey Filiatreau, assistant professor of medicine at WashU noted, “The community collaborative created an outstanding opportunity to connect to, learn from, and grow with community-based partners, expert implementers, and individuals with lived experience working together to end the HIV epidemic. Such experiences are critical to centering the people and problems that matter most in HIV prevention, treatment, and care research.”
“The Midwest D-CFAR SWG Annual Community Collaborative was an amazing experience. The insightful presentations and interactive activities were thoughtful, engaging, and innovative. It was very impactful to be in community with researchers and community-led organizations to share collective solutions on how to obtain and implement data and resources—prioritizing community members sharing their lived experiences to truly inform the data,” Aja Owens from the Community Health Commission of Missouri added.
This Research Community Collaborative event served as more than just a meeting—it was a model of hope, visibility, and mutual empowerment. It reinforced the idea that when communities are authentically engaged and valued from the start, we not only generate better science but also build a healthier, more just future for all.
Written by Kneeshe Parkinson, edited by April Houston