UC Health release data governance guidelines
On May 1, 2024, President Michael V. Drake, MD issued new health data governance guidelines, part of the 2024 UC Health Data Governance Task Force Report. The Report provided specific recommendations on how UC Health locations can use data assets to advance science and clinical care, while acting as stewards of this resource. The Center for Data-driven Insights and Innovation (CDI2), part of UC Health (UCH), is leading the implementation of these recommendations.
Finalized in February 2024, the Report is the result of extensive work by a cross-functional team established by President Drake and former UC President Janet Napolitano in 2021. To thoroughly address the complex issues related to patient data governance, the Task Force included a diverse group of scientists, clinicians, ethicists, privacy and regulatory experts, as well as Information Technology (IT) specialists from throughout the UC Health system and the UC Office of the President.
The importance of effective data governance
In his introduction to the Report, President Drake highlighted the need for effective governance in the handling of data:
The importance of data in transforming health and medicine has never been more clear. As a leading healthcare delivery and public research institution, the University of California has a duty to utilize its health data assets and do so in a safe and responsible way.
Michael V. Drake, MD
2024 UC Health Data Governance Task Force Report Summary Overview and Guidelines
The Report consists of two portions, Part I and Part II, summarized below. The appendices include updated (as of February 2024) data sharing guidelines, in addition to resources for data governance.
Report Part I: Development of a Patient-informed, Justice-based Model of Health Data Use
The first section of the Report focuses on integrating patient feedback, upholding data ethics, and promoting cross-sector collaboration. These insights and further expert consultations led the Task Force to advocate for a patient-informed, justice-based model of data governance that focuses on the following three factors:
- Transparency
- Education
- Community engagement
Report Part II: Operationalizing Responsible Health Data Governance at UC Health
The second section of the Report focuses on operationalizing responsible health data governance within UC Health. It advocates for a systematic approach to managing data sharing agreements, both locally and systemwide. This includes tracking data sharing agreements with third parties, and transparent processes to ensure responsible data management.
The UC Health Data Sharing Guidelines
UC Health Data Sharing Guidelines (Report appendix 1)
The Task Force developed an updated set of Health Data Sharing Guidelines, which can be found in Appendix 1 of the report. These guidelines provide a streamlined, transparent, and replicable framework for assessing health data sharing partnerships with parties outside UC.
White Paper on “Got Health Data” Conference (Report appendix 2)
In April 2022, UC Health sponsored the “Got Health Data? Moving Towards a Justice-based Model of Data Use” conference. This event highlighted the crucial role of health data in advancing public health, addressing healthcare inequities, and enhancing data governance amid growing challenges in legal, ethical and privacy concerns. Topics discussed included:
- The power of data-analytics to improve health care
- Limitations of the current regulatory landscape
- Health data as a public good
- Rethinking consent: the importance of trust, transparency, and engagement
- Moving forward in collaboration and partnership
Conclusion and Next Steps
Realizing a critical vision in a dynamic market, the Report concludes:
“Data are central to UC’s mission to improve the health and well-being of all people living in California, the nation, and the world. The recommendations set forth in this report reflect UCH leadership’s continued focus on balancing the importance of utilizing data at scale while also acting as a steward of this resource. As the health data sharing landscape continues to evolve, responsible data governance will require ongoing, cross-functional efforts at campuses, and coordination of these efforts systemwide. The collective adoption of measures to promote the safe and responsible sharing of Health Data will enable UC to facilitate scientific collaboration, discover new treatments, and deliver exceptional care.”
Expert Communications and Implementation
The dissemination and integration of these recommendations are critical for success. This will require continuous leadership and a structured approach to review and adaptin these guidelines as new technologies emerge and other situational factors arise. President Drake emphasized the importance of these efforts.
I encourage UC Health and the campuses to implement these recommendations into their local processes. I have directed UC Health, through its Center for Data-driven Insights and Innovation (CDI2), to continue to lead this work.
President Michael V Drake, MD
Implementation Task Force Members
Steering Committee
● Cora Han, Chief Health Data Officer, UC Health, UC Office of the President [Chair]
● David Rubin, Executive Vice President, UC Health, UC Office of the President
● Hillary Kalay, Senior Principal Counsel, UC Legal, UC Office of the President
● Lars Berglund, Associate Vice Chancellor Emeritus for Biomedical Research, UC Davis
● Theresa Maldonado, Vice President, Research and Innovation, UC Office of the President
● Susan Cochran, Professor of Epidemiology and Statistics, UCLA
● Van Williams, Vice President, Information Technology and Chief Information Officer, University of California
Work Group A – Justice-based Model of Health Data Use
● Christine Cassel, Adjunct Professor of Medicine, UCSF [Co-Chair]
● Laurie Herraiz, Associate Program Director, CTSI, UCSF [Co-Chair]
● Barbara Koenig, Professor Emeritus of Medical Anthropology & Bioethics, UCSF
● Shanda Hunt, Assistant Vice Chancellor for Research Compliance and Integrity, UC San Diego
● Sarah Dry, Vice Chair, Biobanking and Research Services Director, UCLA Health
● Vivek Rao, Faculty, Human-Centered Design, UC Berkeley Haas
● Jason Phillips, Assistant Director, UCSF Health Experience, UCSF Health
● Sara Ackerman, Associate Professor, Social and Behavioral Sciences, UCSF
Work Group B – Health Data Set Access Repository
● Tom Andriola, Vice Chancellor, Information Technology and Data and Chief Data Officer, UC Irvine [Chair]
● Noelle Vidal, Healthcare Compliance and Privacy Officer, ECAS, UC Office of the President
● Brian Russ, Research Policy Manager/Interim Contracts and Grants Operations Officer, RPAC, UC Office of the President
● Nadya Balabanova, Data Scientist, UC Health Data Warehouse, UC Irvine
Work Group C – Data Sharing Guidelines
● Jason Yeates Adams, Director of Data and Analytics Strategy, Associate Professor of Pulmonary, Critical Care, and Sleep Medicine, UC Davis Health [Co-Chair]
● Albert Duntugan, Chief Data Officer, UCLA Health [Co-Chair]
● Vanessa Ridley, Chief Compliance Officer & Chief Privacy Officer, UCSF
● Erick Jenkins, Manager, Clinical Trials Contracts, UC Davis Health
● Michael Hogarth, Chief Clinical Research Information Officer, UCSD Health
The UC Health Data Governance Implementation Task Force would like to thank those members of the Task Force and Work Groups who contributed their time and effort to the development of the Report and recommendations but who were unable to continue their participation:
● Carrie Byington, UC Office of the President
● Rachel Nosowsky, UCSF Health
● Jennifer Chayes, UC Berkeley
● Susan Pappas, UCSF
● Aaron Neinstein, UCSF
● Lucila Ohno-Machado, Yale University
Special thanks to Pagan Morris (UC Office of the President) and Jennifer Benbow (UC Office of the President) of the Center for Data-driven Insights and Innovation for work group facilitation, project management, and for their design, compilation and editing of the Report.
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