Why RFK Jr.’s data plans might hit a real world snag

Mario Aguilar covers technology in health care, including artificial intelligence, virtual reality, wearable devices, telehealth, and digital therapeutics. His stories explore how tech is changing the practice of health care and the business and policy challenges to realizing tech’s promise. He’s also the co-author of the free, twice weekly STAT Health Tech newsletter. You can reach Mario on Signal at mariojoze.13.

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Federal health department leaders have touted the potential of using patient data, including health records, to study autism, chronic disease, vaccine injuries, and more. Just yesterday, the National Institutes of Health and the Centers for Medicare and Medicaid Services announced a plan to use CMS claims data though an existing research program for this purpose, promising the agencies will “establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange.” But that’s claims. The plan to get health records remains fuzzy.

As STAT’s Katie Palmer reports in a new story, getting access to huge troves of actual patient data may prove more difficult than the confident statements of leaders like Marty Makary and Jay Bhattacharya let on. The idea of building a platform for real world data to study diseases isn’t new, and previous efforts, including by NIH, have been dogged by the thorny questions: Who owns the data? Who will profit from it? How do you keep it safe? And how do you get health organizations to play nice? Even assuming you can get data, making it usable can be maddeningly complex.