In today's digital age, where data fuels advancements in health care and medicine, ensuring the responsible use of health data is paramount. 

For patients, this means safeguarding personal information while harnessing its potential to improve treatment outcomes, enhance medical research and ultimately, elevate the quality of care they receive. The University of California has been at the forefront of data governance for many years, establishing frameworks to uphold patient privacy, foster transparency and promote ethical data practices. 

UC’s Health Data Governance Task Force, made up of scientists, clinicians, bioethicists, privacy experts, regulatory specialists, and IT professionals, has taken the lead on UC's data governance work. The Task Force has shared its updated principles and recommendations in a newly published Health Data Governance Task Force Report to further inform UC’s approach and the national dialogue on health data governance. 

The following Q&A provides highlights from the report and an expert discussion at a recent UC Board of Regents meeting. 

What are the foundational principles of UC’s health data governance?

The five principles outlined by the task force collectively aim to uphold ethical standards, promote equitable access to benefits derived from health data, and prioritize the interests of UC Health patients and society at large in data-sharing work.

1. In the first principle, UC acknowledges its unique role as a public research and educational institution committed to creating and disseminating knowledge while ensuring sensitive information is safeguarded. 
2. Secondly, the University stresses the importance of sharing health data for public benefit, emphasizing collaboration with diverse sectors but requiring a clear public benefit in all data-sharing arrangements, particularly commercial transactions.
3. The third principle focuses on justice and underscores UC's commitment to addressing societal inequalities by actively engaging disenfranchised communities in health research and policymaking. 
4. Fourth, transparency and patient engagement must be prioritized to empower patients and ensure understanding of UC’s data activities.
5. Lastly, responsible stewardship guides UC’s approach to managing health data, emphasizing rigorous assessment of the benefits of data sharing, protection of patient privacy and data security and widespread sharing of scientific findings. 

What is a justice-based model of health data use that the task force is proposing?

As described by the task force, a justice-based model of health data use centers on promoting equity and public benefit in the use of health data. It emphasizes transparency, education and community engagement to ensure that health data are used ethically and responsibly. This model seeks to empower patients and historically marginalized or excluded communities by involving them in decision-making processes related to health research, clinical practices and policy development. By encouraging dialogue and collaboration among stakeholders—including researchers, bioethicists, clinicians, patients and industry leaders—the model aims to address societal inequalities and maximize the positive impact of health data on public health.

Why is a justice-based model of health data use important for patients?

A justice-based model of health data use is crucial for patients as it prioritizes their rights, privacy and interests within the broader context of data sharing and use. Through transparency, patients gain a better understanding of how their health data is collected, used and shared, thereby fostering trust in health care institutions. Education initiatives work to inform patients about the purposes and potential benefits of data use, empowering them to participate meaningfully in decisions affecting their health care. Community engagement bring diverse perspectives and needs into consideration, particularly those of marginalized groups, to promote fairness and reduce health disparities. Ultimately, this model aims to uphold patient autonomy and welfare while harnessing the full potential of health data to advance scientific research, improve healthcare delivery and enhance public health outcomes.

What are some of the task force recommendations for responsible data sharing? 

The task force also made recommendations for how UC Health can operationalize the foundational principles for health data governance. These include tracking data sharing agreements with third parties and implementing transparent processes to ensure responsible data management. In particular, the task force set forth an updated set of Health Data Sharing guidelines that provide a streamlined, transparent, and replicable framework for assessing health data-sharing partnerships with parties outside UC.

How does UC ensure the security of health data?

The task force recognized that attention to cybersecurity is a critical element of data stewardship. Strong security protections at UC include implementing strong encryption protocols, limiting access to authorized personnel only and regularly auditing systems to detect and mitigate potential breaches. UC also employs advanced technological solutions such as firewalls, intrusion detection systems and secure cloud storage to safeguard health data. Regular security assessments and audits help identify vulnerabilities and ensure compliance with industry standards and regulatory requirements.

What are the future directions for UC’s health data governance?

Looking ahead, as technologies and the regulatory landscape evolve, responsible data governance will require ongoing, cross-functional efforts at campuses, and coordination of these efforts systemwide. Interest in the development and implementation of artificial intelligence (AI) tools in health care is also rapidly increasing. Since AI technologies rely on data, promoting responsible AI by mitigating risk in areas like fairness, safety, transparency, privacy and security, and ethics, will become an important part of data governance efforts throughout UC Health.  

About University of California Health

University of California Health comprises six academic health centers, 21 health professional schools, a Global Health Institute and systemwide services that improve the health of patients and the University’s students, faculty and employees. All of UC’s hospitals are ranked among the best in California and its medical schools and health professional schools are nationally ranked in their respective areas.