Last year, the Department of Health and Human Services (HHS) released a comprehensive document outlining its strategy for real-world data utilization. Traditionally, health and biomedical data has been generated through meticulously controlled clinical trials. However, in an increasingly digital landscape, this data can be extracted from the everyday interactions patients have with the healthcare system, positioning these interactions as a valuable resource.
The recently published Living HHS Open Data Plan advocates for a paradigm shift in how we perceive health data, suggesting it should be treated akin to other natural resources. The plan emphasizes that data should function as a “public utility” that fosters scientific progress and innovation. HHS contends that not only should patients have access to this utility, but it should also be more readily available for research, safety monitoring, and other public interest applications.
On Thursday, a coalition of researchers, former agency officials, and health data companies reiterated this vision in a policy forum published in Science. They argue that if health data is to be managed as a public utility, it requires a governance structure similar to that of essential services like electricity, involving stakeholders such as customers, local distribution companies, transmission entities, generators, and government oversight.
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