![]() | Sara Ackermann Associate Professor - University of California San Francisco |
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03.07.2024-29.07.2024
Toward Patient and Public Involvement in Health Data Governance
The engagement of patients and communities is an important dimension of what we refer to as an institution’s culture of data sharing. A culture of data sharing is a dynamic system of stakeholder groups, their interests, and the rules, norms, interests, infrastructure and technological systems that shape how personal health information is created, stored, transmitted and used. This research project involves an ethnographic investigation of the culture of data sharing at the University of California, San Francisco (UCSF) and how it enables and/or limits meaningful patient and community involvement in data governance. Specifically, our aims aims are to use ethnographic methods to: (1) describe the values, priorities and interests guiding policy making related to the sharing and use of patient health information; (2) assess the extent, quality and impact of patient and public participation in data governance; and (3) develop guidelines to promote meaningful public engagement in decisions about the use of patient health information. Project findings will directly support UCSF’s stated commitment to increasing the transparency and accountability of data use policies, and will contribute to broader efforts to understand and establish participatory data governance structures and processes at health science institutions around the world. My goal for the Brocher residency is to report these findings through the writing of two manuscripts. The first will offer a normative framework for promoting patient and public participation in data governance at large health insitutions, and the second will present empirical findings from our ethnographic case study of the culture of data sharing at one U.S. academic medical institution.