The investigators conducted two virtual focus groups with local CAB members to ask participants about their understanding of the research process, experience with clinical trials, and methods for receiving research information. The researchers then conducted a content analysis, which identified emerging themes regarding the participants’ perceptions of clinical research.
Baseline data from the ASH RC found that, of 21 CAB participants, 40% had previously participated in clinical research, and 30% had served as co-investigators or stakeholders. Overall, participants commonly associated clinical research with seeking cures, testing new medications, and gathering information. They expressed concerns about trial risks, potential side effects, and impact on family responsibilities.
The participants expressed a desire to increase personal research literacy to better advocate for their community, suggesting that empowerment-based education and experiential learning would be welcome among these groups.
