In an op-ed for The New York Times this week, Dr. Miner described how he recently had to abandon his plans to create an AI-powered app that made recommendations based on users’ symptoms. “AI requires a lot of data, and when it comes to people’s personal health information, it’s incredibly difficult to gain access, even if the data is anonymized,” he wrote.
Dr. Miner offered several solutions that could ensure this access to researchers looking to build populationally representative AI health tools. For one, patients could be given greater control over their own data, with the ability to determine with a government-built repository how much they want to share and with whom. Another option would be to allow private companies to purchase that data directly from patients.
The most pragmatic solution, though, according to Dr. Miner, would be to scale back some of HIPAA’s stricter regulations: calibrate fines for HIPAA violations based on the level of verifiable harm and the size of the institution, and introduce standardized data-sharing agreements.
“Reforming HIPAA does not mean opening up all of our personal data to the highest bidder or for all uses,” he wrote. “Unlike the far more substantial privacy sacrifices we’ve already made in so many other aspects of our lives, at least we’ll have something to show for our efforts — the potential for a longer, healthier life.”
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