Health Data as Utility: A Radical Shift for Patients

Patient-generated health data has become a goldmine for private companies, yet the individuals who produce it see little benefit. A policy group, including former ARPA-H data chief Dr. Shannon Sartin, is now proposing a radical alternative: treating this data as a regulated public utility. The idea hinges on a simple but disruptive premise—if health data were managed like water or electricity, access, equity, and accountability could be dramatically improved.

The current system is opaque. Tech giants, insurers, and pharmaceutical companies routinely monetize patient data, often without explicit consent or compensation. A 2023 STAT report found that less than 10% of patients are even aware of how their data is used. The utility model would not only democratize access but could also create standardized data-sharing frameworks—potentially accelerating research while protecting privacy.

Still, the proposal is in its infancy. Critics argue that regulating health data like a utility could introduce bureaucratic inefficiencies, while others warn of unintended consequences, such as stifling innovation. The World Economic Forum recently noted that any such shift would require robust oversight to prevent misuse or exploitation by governments or corporations.

For patients, the implications are profound. A utility-style system could ensure that individuals retain ownership of their data, with clear rules about who can access it and for what purpose. This model has precedent in other sectors—think of how energy grids operate under regulatory bodies—but health data presents unique challenges, including privacy concerns and the sheer volume of sensitive information.

The biggest hurdle may be political will. The U.S. has no federal data-privacy laws, and fragmented state regulations make a unified approach difficult. Meanwhile, the European Union’s GDPR offers a glimpse of what stricter data governance could look like, though its enforcement has been uneven. Sartin’s group acknowledges these challenges but argues that the status quo is unsustainable—patients deserve more than to be passive data sources for corporate profit.

What’s missing from the conversation? The specifics. The proposal lacks details on implementation, from funding mechanisms to enforcement. Would patients be compensated? How would data breaches be handled? And crucially, how would this model interact with existing healthcare systems, many of which already rely on private data brokers? These questions remain unanswered, leaving the proposal’s feasibility in doubt.

The real signal here isn’t just about data—it’s about power. Shifting health data into a regulated utility framework could rebalance the scales, but only if policymakers, technologists, and patients align on what that future should look like.