Responding to healthcare distrust among underserved communities: Phase II.

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.

Understanding Multilevel Factors Related to Urban Community Trust in Healthcare and Research.

BACKGROUND: Community and patient engagement in the healthcare system and biomedical research are prerequisites for eliminating health disparities. We conducted a "listening tour" to enhance our understanding of multilevel factors associated with community trust. METHODS: Using community-based participatory research (CBPR) methods, we conducted a phenomenological qualitative study. "Town-hall" style discussions were held at nine sites across an urban, Midwestern city. We recruited adults (N = 130) via community networks, social media, flyers, and word-of-mouth. Demographic assessments were self-administered and listening tour sessions were conducted by trained moderators. Themes were framed within the social ecological model (SEM; intrapersonal, interpersonal, institutional, community, and policy levels). RESULTS: Participants were mostly female (68%), African American (80%), had health coverage (97%) and were diagnosed with a chronic health condition (71%). The overarching theme was sociodemographic differences in distrust, such that African Americans and deaf/hearing impaired participants perceived disparities in healthcare, a lower quality of care, and skepticism about biomedical research, relative to Whites. CONCLUSIONS: The depth of distrust for healthcare providers, systems, and researchers in underserved communities remains strong and complex. Findings highlight the need to understand the lived experiences of community members, and how distrust is maintained. Multilevel interventions to increase trust and the accrual of underrepresented populations into clinical trials are needed.