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

Abstract

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.

Ethical Allocation of Remdesivir

“…The second way that allocating by death rates achieves benefits that would be lost by prioritizing other communities is that the communities in which death rates are the highest are the same communities that have long histories of disparities wrought by, among other thigs, mistreatment and mistrust (Webb Hooper et al 2019). Prioritizing these communities can help repair this trust.…”

Lack of association between acute stroke, post-stroke dementia, race, and β-amyloid status

“…Medical research on African Americans (AAs) has a fraught history that has resulted in limited knowledge of racial differences in various pathologies, as well as an understandable hesitance for minorities to participate in research ( Hooper et al, 2019 ). Several studies addressing racial disparities in Alzheimer disease (AD) and stroke have found higher incidence rates in the Black population for both diseases as compared with the non-Hispanic white (NHW) population ( Benjamin et al, 2017 , Manly and Mayeux, 2019 ).…”

‘Listen and learn:’ participant input in program planning for a low-income urban population at cardiovascular risk

“…In the context of health care, competence means possessing resources and knowledge, and feeling capable of taking the steps required to maintain one’s health. Autonomy refers to the choice to pursue specific health goals rather than feeling pressured to follow a doctor’s orders or by an already distrusted medical establishment [ 15 ]. Relatedness in the healthcare environment means feeling supported by health care professionals and by peers.…”