Short abstract:

Drawing on interviews with patients at a U.S. academic medical center, we present patient visions for shared governance of health data, challenging the dominant biomedical platform for health data sharing whose claim to openness obscures intertwined practices of data monetization and medical racism.

Long abstract:

Biomedical platforms for health data sharing often frame patient data as a “common good.” Patients’ electronic health records and bodily materials circulate between exam rooms, laboratories, and machine-learning applications and are aggregated and transformed into data that is “open” for research. However, while fostering knowledge creation, health data also becomes monetized or directed toward other kinds of value creation once it is “de-identified” and constituted as not “belonging” to individual patients or requiring consent for ongoing use. Moreover, data oversight prioritizes compliance with laws and regulations rather than public benefit, and rarely incorporates the perspectives of those who provide health data. Seeking to understand what role patients might play in the (re)formation of this platform, this paper reports on interviews with patients at a U.S. academic medical center and reflects on their perspectives on “open” health data sharing. Surprised to learn that de-identified data could be shared with for-profit entities without their explicit consent, patients highlighted contradictions of biomedical platforms that are “open,” yet opaque and profit-seeking."Open" sharing within a market-based system risks perpetuating inequities, particularly when oversight does not include those most affected by these harms. In considering a way forward, we expand on what one patient called an “alternative imaginary,” a model for shared governance of biomedical data by patients, community members, clinicians, and researchers. Shared governance would center perspectives of groups disproportionately harmed by health data expropriation and medical racism. By reforming biomedical platforms with patients, we seek a governance model that prioritizes equity and justice.