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

TL;DR

This paper explores medical mistrust among Black older adults in subsidized housing, revealing community perspectives and proposing design principles for health technologies sensitive to their lived experiences and historical context.

Contribution

It centers race-based medical mistrust in human-centered computing, offering new insights and design principles grounded in Black Feminist Thought for health tech development.

Findings

Community skepticism of healthcare motives

Concerns about health AI and institutional trust

Reflexive considerations for researchers engaging with marginalized communities

Abstract

Despite increasing interest in culturally-sensitive health technologies, medical mistrust remains largely unexplored within human-centered computing. Considered a social determinant of health, medical mistrust is the belief that healthcare providers or institutions are acting against one's best interest. This is a rational, protective response based on historical context, structural inequities, and discrimination. To center race-based medical mistrust and the lived experiences of Black older adults with low income, we conducted interviews within publicly subsidized housing in the Southern United States. Our reflexive themes describe community perspectives on health care and medical mistrust, including accreditation and embodiment, skepticism of financial motivations, and the intentions behind health AI. We provide a reflective exercise for researchers to consider their positionality in relation to community engagements, and reframe our findings through Black Feminist Thought to propose design principles for health self-management technologies for communities with historically grounded medical mistrust.