New Science paper calls for public utility framework for real-world health data governance

A perspective article, ‘Governing real-world health data as a public utility’ published in Science outlines a proposed framework for governing real-world health data as essential public infrastructure, with the aim of improving interoperability, supporting evidence generation, and strengthening patient protections. 

Large volumes of health information are generated through routine healthcare interactions and digital technologies, including electronic health records (EHRs), insurance claims, patient registries, and wearable devices. However, much of this data remains fragmented across incompatible systems, limiting its usefulness for research, public health surveillance, safety monitoring, and precision medicine.

In the perspective paper, a multidisciplinary group of researchers led by the University of North Carolina (UNC) School of Medicine propose a governance framework that treats real-world health data (RWD) as a public utility. The concept draws on models used for other essential infrastructure systems, such as electricity, water, and the internet, which operate under shared standards, regulatory oversight, and public accountability.

The authors argue that the main challenge facing RWD is not a lack of information, but the absence of consistent governance and aligned incentives for data sharing and stewardship. As a result, existing initiatives such as distributed research networks and data-sharing platforms have demonstrated value but remain constrained by voluntary participation and uneven standards.

Melissa Haendel, PhD, Sarah Graham Kenan Distinguished Professor of Genetics at the UNC School of Medicine and lead author of the paper, explained:

“Health data are now as fundamental to society as power grids and clean water. Yet unlike other essential utilities, health data infrastructure is largely voluntary, fragmented, and economically misaligned.”

The proposed framework emphasizes a federated model in which data remain with the individuals and organizations that generate or steward them, while oversight is provided through government-established regulations and community-informed governance structures. Utility-style boards would support transparency and accountability, while national standards would guide interoperability and responsible data use.

Researchers suggest that such a model could also provide more stable and sustainable funding for health data infrastructure.

 “We take for granted having ready access to high-quality clinical data, but that access really depends on the existence of consistently funded, reliable, and secure data infrastructure,” said Emily Pfaff, PhD, Associate Professor of Medicine at the UNC School of Medicine and co-author of the study. “On the research side, that consistent funding is not guaranteed, leading to eventual degradation or disappearance of important data repositories.”

The framework also highlights the importance of updating privacy protections to reflect the current digital health landscape. The authors note that existing legislation such as the Health Insurance Portability and Accountability Act (HIPAA) was introduced before the widespread use of mobile health applications, genomic sequencing, and AI-driven analytics:

“We must modernize privacy protections while ensuring that patients, not just institutions, benefit from the evidence their data generate,” Haendel said.

Researchers also emphasize that changes in governance will require broader shifts in how health data are viewed within healthcare systems. Shaun Grannis, MD, Vice President for Data and Analytics at the Regenstrief Institute, noted that health data are often treated as a secondary byproduct of care rather than a shared resource that can support continuous improvement:

“If we want a true learning health system, one that continuously improves based on real-world experience, we need coordinated, sustainable infrastructure that enables a pace of innovation that address the challenges facing patients and communities in a more timely fashion.”