Abstract B086: Increasing clinical research participation and input from underserved communities: Results from community engagement studios inform clinical study design
Authors: Gary Monique , Crandon Laura , Howard Tiffani L. , Bollinger Paul , Bonilla Natalie , Shannon Jackilen , Krinshpun Shifra , Sawyer Sarah , Bristow Sara L. , Malhotra Meenakshi , Jurdi Adham , Aleshin Alexey , Mitchell Breeana L. 
Published: September 2024

Underrepresentation of marginalized racial and ethnic groups has been a consistent challenge in clinical trials. With an intent to increase trial accessibility for underserved communities, we conducted community engagement studios (CES) to understand the various cultures, values, worldviews, and lived experiences from different communities that might affect clinical trial participation. We report on the CES discussions and how they modified the design of an early cancer detection clinical study. CES were developed in partnership with an academic community engagement expert, OHSU and via the patient advocacy group, Touch4Life, which focuses on decreasing cancer disparities in the BIPOC (Black, Indigenous, and people of color) population. Four CES were conducted: 1 with members of Asian (n=11), 2 with members of African American (AA) (n=16), and 1 with members of rural (n=7) communities. One AA CES was conducted with members of the Touch4Life network, with whom we piloted a subsequent oral debrief session to review CES thematic results and relay the impact it had on clinical study implementation, the results of which led to a corollary CES to be initiated in this network (n=7) to evaluate recruitment messages in the BIPOC population. Common themes for clinical trial recruitment strategies included the importance of messaging from trusted sources. While clinicians were a shared trusted source, Asian CES members preferred a personal connection, rural CES members preferred non-profit foundations, and AA CES members highlighted community networks (church and patient advocacy groups with shared experiences). Asian CES participants were hesitant to engage with pharmacists for clinical study recruitment due to a lack of personal relationships, but rural and AA communities would be open to hearing about clinical studies at their pharmacy, combined with consultation with their doctor. All communities expressed shared barriers for trial participation (time commitment, transportation, cost) and unique barriers were also expressed: childcare and distrust in biopharma in the AA CES; language in the Asian CES. All CES expressed interest in receiving updates on clinical trial progress and outcomes. Themes from the CES have been used to inform changes to both our recruitment and education strategies and outreach efforts for this clinical study for the early detection of cancer. One such modification included adding recruitment channels focused on engaging participants through patient advocacy groups and specific clinical study sites. Following guidance from both CES participants and our CES partners, and by sharing the CES results with the Touch4Life community, we developed a bidirectional flow of information and fostered a joint mission to deepen our working relationship with the community. Our research demonstrated that early collaboration between industry-sponsored researchers, community experts, and patient advocacy groups is an ideal model for gaining insights into specific communities and fostering relationships that can improve access to clinical studies.

Citation Format: Monique Gary, Laura Crandon, Tiffani L. Howard, Paul Bollinger, Natalie Bonilla, Jackilen Shannon, Shifra Krinshpun, Sarah Sawyer, Sara L. Bristow, Meenakshi Malhotra, Adham Jurdi, Alexey Aleshin, Breeana L. Mitchell. Increasing clinical research participation and input from underserved communities: Results from community engagement studios inform clinical study design [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B086.