Designing with Medical Mistrust: Perspectives from Black Older Adults in Publicly Subsidized Housing

Paper Title

Designing with Medical Mistrust: Perspectives from Black Older Adults in Publicly Subsidized Housing

Publication Info

• Topic area: Community-engaged design of health technologies addressing medical mistrust.
• Keywords: Medical mistrust, health technology, Black older adults, human-centered computing, diabetes self-management, health AI, culturally sensitive design, Black Feminist Thought, community engagement, health equity.

Background and Problem

• Problem / challenge: Medical mistrust, particularly within Black communities, is underexplored in human-centered computing. Existing health technologies often fail to address the historical and systemic roots of mistrust, leading to skepticism and reduced engagement.
• Significance: Medical mistrust is a rational response to historical and ongoing inequities in healthcare. Addressing this mistrust is critical for designing ethical and equitable health technologies that can improve health outcomes for marginalized communities.
• Motivation and related work: Prior HCI research has focused on trust in health technologies but often neglects the broader systemic and historical factors influencing mistrust. While some studies have explored culturally sensitive design, few explicitly center medical mistrust or engage deeply with the lived experiences of Black communities. This paper aims to fill this gap by focusing on Black older adults in publicly subsidized housing.

Solution

• Proposed approach: A community-engaged study that centers race-based medical mistrust and the lived experiences of Black older adults to inform the design of health self-management technologies.
• Novelty:
  1. Distillation of eight reflexive themes on medical mistrust and community health experiences.
  2. Development of a reflective exercise for researchers to consider their positionality in community engagements.
  3. Proposal of a design framework using Black Feminist Thought to create ethical and equitable health technologies.
• Procedure and key techniques:
  • Semi-structured interviews with 16 residents of two publicly subsidized housing sites in the Southern U.S.
  • Reflexive thematic analysis to identify patterns in community perspectives on healthcare, medical mistrust, and health AI.
  • Reframing findings through Black Feminist Thought to propose seven design principles for health technologies.

Results

• Concrete findings:
  • Eight themes of medical mistrust, including skepticism of doctors’ financial motivations, mistrust of pharmaceuticals, the tension between accredited and embodied truths, and the importance of agency and intention behind health AI.
  • Community members valued personal accountability, transparency, and positivity in healthcare interactions.
  • Health AI was viewed with conditional trust, contingent on its intentions and applications.
• Advantage over baselines: Unlike prior work that frames mistrust as a barrier, this study validates mistrust as a protective and rational response, offering actionable design principles grounded in lived experiences and historical context.
• Experiments / evaluation:
  • Participants: 16 residents (94% Black, 75% female, 88% with diabetes) aged 40–79.
  • Methods: Semi-structured interviews, reflexive thematic analysis, and community feedback on findings.
  • Metrics: Qualitative insights into trust, mistrust, and perspectives on health AI.
• Limitations and future work:
  • Limited to two community sites in one U.S. city; findings may not generalize to other contexts.
  • Participants were relatively engaged with institutional systems, potentially excluding more isolated individuals.
  • Future work should involve iterative co-design with community members and expand to other marginalized groups experiencing medical mistrust.

Summary

This paper explores medical mistrust among Black older adults in publicly subsidized housing to inform the design of equitable health self-management technologies. Through interviews and thematic analysis, the study identifies eight themes of mistrust and proposes a framework of seven design principles, including disclosure, temporality, information, pluralism, embodiment, positivity, and agency. Reframing findings through Black Feminist Thought, the work emphasizes the historical and systemic roots of mistrust and advocates for community-centered, ethical design practices. These insights provide a foundation for addressing mistrust in health technology design and advancing health equity.