STAT+: Patient health data as a public utility: A former ARPA-H data chief explains

Last year, the Department of Health and Human Services published a sweeping document that described the agency’s approach to real-world data. Historically, health and biomedical data has been intentionally manufactured, the output of carefully designed clinical trials. But in a digitized world, it can instead be mined — and patients’ interactions with the health care system are the natural resource.

The Living HHS Open Data Plan, published in July, proposed treating data more like we do other natural resources. “At the core” of the plan, it reads, “lies the concept that data is a ‘public utility’ for good that powers scientific advancement, innovation, and progress.” Patients should have access to that utility, HHS argued, but it should also be easier to leverage for research, safety monitoring, and other uses in the public interest. 

On Thursday, a group of researchers, former agency officials, and health data companies continued that call in a policy forum published in Science. If health data is to be treated like a public utility, they write, it should be similarly governed. Like electricity, the system would have to involve customers, local distribution companies, transmission companies, generators, and the government. 

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