A Multi-Stakeholder Perspective to Address Factors Driving Medical Mistrust with Communities of Color

Background and Purpose: Despite advancements in medical therapies for cancer care in the United States, disparities in health and health care by race and ethnicity persist in the United States. A growing number of researchers are exploring the factors that fuel medical mistrust, particularly among Black and other patients of color. Research has found that medical mistrust is not just related to past legacies of mistreatment, but also stems from people’s contemporary experiences of discrimination in healthcare practices. To improve trust and thus cancer care delivery, as a field we should create more collaborative relationships to endeavor to broaden our understanding of medical mistrust and shift our emphasis to its ongoing, rather than solely historical, nature.

Methods: This study approached the research question, "What is fueling medical mistrust?”, from the perspective of three stakeholder groups: oncology professionals; patients/survivors; and community-based providers, many of whom were social workers. We approached the project using two methodologies: 1) In-depth qualitative semi-structured interviews with cancer survivors from across the country who identified as people of color. 2) Systems Dynamics Group Model Building (GMB), which is a community-engaged research approach used to involve communities in conceptualizing a system, how it works, what influences trust in oncology programs, and what gaps exist. Individual interviews were held virtually; interviews lasted 60 minutes. Interview transcripts were systematically coded using NVivo 10.0 software. For the GMB sessions, the investigator held three separate 120-minute group sessions, one with each of the group of stakeholders, and a fourth 60-minute session with all stakeholders combined. Vensim PLE software was used to organize and analyze the GMB data.

Results: Twenty-one cancer survivors participated in the in-depth interviews. Participants represented urban and rural environments from across the US. The majority identified as Black or African American. The additional 21 Participants from the GMB sessions represented social workers, practitioners, health administrators, and academics nationwide. Analysis revealed that patients view medical encounters as a constant play for power between patient and provider. Historically, the provider held the power, but participants described a vital shift in who has the power in more contemporary medical encounters. Now they described seeking out second opinions as the rule and switching providers if they feel disrespected and not heard. The stakeholders spoke about the importance of interdisciplinary teams to encourage an environment of shared decision-making. Also, peer patient advocacy played an increasingly important role. Participants describe trust in the health care system as an equation: confidence (self-efficacy) + Knowledge = Voice (empowerment) + energy.

Conclusions and Implications This research explores services and resources needed to encourage continuity in care for cancer care programs servicing marginalized communities along with the identification of policy changes required to improve trust. Social Workers play a large role as patient care providers and patient advocates Collaborative interventions that include social workers at the table as team members could be efficacious at addressing current health disparities in terms of access to preventive care, mental health, and behavioral health services, as well as improving patient outcomes.