Researchers Call for Governing Health Data as a Public Utility to Unlock Real-World Evidence and Protect Patients

Electronic health records (EHRs). Insurance claims. Patient registries. Wearable devices. Never before has health data been so abundant.

Yet the United States continues to struggle with siloed systems that make it difficult to streamline and use this information to advance science and medicine – particularly in areas such as public health, safety monitoring, and precision medicine.

Now, a multidisciplinary team of researchers, clinicians, technologists, and policy experts argues that the country should rethink how this data is managed. In a new paper published in Science, the group calls for real-world health data (RWD) to be governed as a public utility – an essential piece of public infrastructure, akin to electricity, water, and the internet.

To address data silos, patient privacy, and other related challenges, the researchers looked to lessons from the creation of public utilities throughout history – such as the electrification movement, federal drinking water standards, and the advent of the internet.

They propose that a public utility model could better govern health data and ensure it flows where it matters most: from patients to new and innovative solutions and back again to benefit the public.

The public utility approach would ensure that there is governmental regulatory oversight, ensuring fair access, transparency, and accountability for health data. 

Governance would be distributed to utility boards, while the government would establish and enforce regulations and standards, enabling individual research entities and stakeholders the freedom to address their own research questions and challenges. Like other public utility boards, this information could be accessed by patients and the community, ultimately empowering them with a formal role in oversight and data sharing.

The researchers also argue that current U.S. privacy laws, including HIPAA, are insufficient for today’s digital health ecosystem. They call for extending HIPAA-like protections to include consumer health data (including wearables, genomics, and mobile apps), clarifying public health and research use cases, and more.

Researchers also recognized that transforming health data governance will require both legal reform and cultural change. They underscore that healthcare organizations and policy-makers must recognize health data as shared infrastructure with collective value, not just a secondary byproduct of clinical care.