Community leaders' perceptions of pain and research engagement: Implications for participant diversity and inclusion in pain clinical trials.

Clinical trials lack diversity and representation of minoritized groups, reducing generalizability and potentially the effectiveness of interventions across these populations. The purpose of this study was to identify how community perceptions of pain and pain research shape participation in pain-related clinical trials among underrepresented groups from the perspective of community organization leaders. We conducted a qualitative study with in-depth, semi-structured interviews with representatives from community-based organizations (N=20). Interviews represented experiences of leaders serving minoritized populations, including Black/African American, Hispanic/Latino, and Asian communities in the Greater Seattle Area. Data were analyzed in Dedoose using thematic analysis. We identified five main themes: (1) Community perceptions of and communication around pain, (2) Pain research is an extension of Western medicine, (3) Community leaders' experiences with researchers, (4) Returning the results to the community increases research meaning, (5) Understand the community experience with social determinants of health. Participants believed that their communities were largely uninterested in pain clinical trials because they perceived a misalignment between trial treatment options and their communities' preferences and needs. Future research investigating integrative approaches to pain care, engaging the community in research design, and considering ways to address social determinants of health may help overcome this misalignment and improve the relevance of pain research to diverse communities. PERSPECTIVE: This article presents perspectives on pain and participation in pain research among community organization leaders serving minoritized communities in the Greater Seattle Area. The expertise of community organization leaders may inform efforts to design pain research that best engages minoritized and underrepresented groups to improve equitable pain medicine and research.