Objective: Medical distrust is both a psychosocial construct and an underappreciated individual social determinant of health with the potential to affect oncology care and clinical trial participation. A community-based participatory research effort, called the Forward Movement Project (FMP), identified multilevel factors affecting trust for healthcare and research in an underserved urban community. In FMP Phase II, we implemented a community-responsive approach to provide lay-oriented education and address misinformation, with the goal of beginning to remediate distrust for healthcare systems and biomedical research.
Methods: Community residents (N = 154 adults, 64% male, M = 61.5 years old, 53% annual income <$10,000, 83% African American/Black) engaged in participant-driven dialogues with oncology clinicians/clinical researchers and support services professionals. A program evaluation focused on trust for healthcare and biomedical research.
Results: Participants reported positive evaluations of both the program and the cancer center clinicians and staff, who were rated as trustworthy (80% strong agreement). However, trust for healthcare systems ("Strongly agree" = 58%) and medical researchers ("Strongly agree" = 50%) following the program was moderate. Over half of the sample (52%) strongly agreed they would participate in a clinical trial compared to before joining this study.
Conclusion: Findings supported the user-generated program approach. The FMP is an example of a model for true community engaged research and has implications for rebuilding trust in healthcare and research.
Keywords: African Americans; community-engaged research; distrust; health care; mistrust; racial and ethnic disparities; research; trust.
© 2021 John Wiley & Sons Ltd.