303 Health data stewardship: Toward transparency, community engagement, and shared governance

Abstract

Objectives/Goals: To guide UCSF in adopting a justice-based, patient-informed model of health data sharing that moves beyond traditional regulatory frameworks that focus on individual privacy and do not address public good and health equity; to create a roadmap for UCSF to implement transparent, community-engaged data governance that is both responsible and effective. Methods/Study Population: We conducted 24 hours of observation at outpatient clinics and 75 in-depth interviews with multiple stakeholder groups: patients, community advisors, and UCSF faculty and staff involved in managing and governing health and research-generated data. We used an ethnographic approach to investigate health data sharing policies and practices and explore perspectives on data governance. We were particularly interested in how data sharing is explained to patients, and what patients and community members know and think about how patient data may be used other than for clinical care. We explored faculty, staff, patient, and community member perspectives about the potential involvement of patients/communities in data governance. We also reviewed UCSF websites with information about data use and sharing policies. Results/Anticipated Results: Policy Awareness: Clear communication and improved guidelines for data use policies will enhance awareness among patients, the public, and researchers, boosting UCSF’s credibility as a data steward. Risks/Benefits: Data sharing drives scientific and clinical progress but raises concerns about privacy, profiteering, and unequal benefit distribution. Improving the Data Ecosystem: Safe data sharing and public benefit can be strengthened through centralized governance and better communication. Key growth areas include deidentification, external sharing criteria, and leakage prevention. Shared Governance: Patients and community advisors favor shared governance with public involvement, while UCSF informants were equivocal. All are concerned about equitable representation and technical training challenges. Discussion/Significance of Impact: Our recommendations to University leadership: Improve communication of data sharing policies to patients and the public. Involve patients and the public in data governance. Support investigators to ensure understanding and compliance with data use policies. Hold UCSF and collaborators accountable for transparency, equity, and public benefit.