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

March 5, 2026 - 23:34

The immense volume of health data generated by patients through wearables, apps, and medical records is largely controlled and monetized by private technology and insurance companies. This model, critics argue, creates data silos, limits research potential, and raises significant privacy concerns while corporations profit from sensitive personal information.

In response, a growing policy movement is advocating for a fundamental shift. Proponents propose reimagining health data infrastructure as a regulated public utility, similar to water or electricity. Under this framework, a trusted, non-profit entity would serve as the steward for this critical resource. The core principle is that the data, derived from patients, should serve public good and scientific advancement first.

This utility model would aim to establish a secure, standardized national health data repository. Researchers could access anonymized datasets to accelerate medical breakthroughs, public health officials could better track disease outbreaks, and patients could potentially share their complete health history seamlessly between providers. Crucially, individuals would retain ownership and control over their own data, deciding who can access it and for what purposes.

The proposal faces substantial challenges, including navigating complex privacy laws, establishing robust cybersecurity, and overcoming political and industry resistance. However, the concept reframes the debate, suggesting that in the digital age, the collective health data of the population is a national asset too vital to be left solely to the private market. The discussion is now centered on how to balance innovation, profit, and the ethical imperative to harness data for the broadest possible health benefit.