Cultural Insiders and Graphic Stories to Promote Research Readiness Among the South Asian Community: A Focus on Purpose, Protection, and Participation.

Abstract

South Asians living in the United States are frequently underrepresented in health research. Their lack of participation limits the generalizability of research to them and keeps them from receiving the high-quality care and innovation that some studies may offer. "Research Ready" is a five-panel, community co-created graphic-style story that encourages discussion around the purpose of research, safety/protection while participating, and why diverse participation-including South Asians-improves study results and leads to more effective interventions/treatments. This study leveraged trained young adult "cultural insiders" to invite attendees of a Midwestern South Asian Cultural Festival to read the story aloud together as the characters in English or Hindi and used a decision guide to invite discussion. Post-discussion surveys (N = 104) were analyzed using descriptive statistics. Participants spanned from 10 to 79 years, with 42% < 18 years and more females (61%). Only 18.3% indicated having prior research participation. Adults 40+ years (60%) requested the story/discussion in Hindi, compared to 2.3% of adolescents and 6.7% of younger adults. After the discussion, participants indicated their willingness to consider participation, with most being open to participating in surveys/interviews (95.2%); only 52.9% would consider studies requiring the taking of medicines. Adolescents, females, and adults with higher education were more willing to participate in medication studies. Nearly all (97.1%) said they would feel safe participating in research, and 88.5% shared that the discussion would help them better decide about future participation. In conclusion, "Research Ready" discussions shared by cultural insiders effectively encourage South Asians to consider future research participation.