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.