Given all the hoops you have to jump through to obtain your medical records, it’s easy to assume that hospitals take patient privacy seriously. But as long as hospitals remove your name, address and other identifying information from those records, federal laws allow them to sell your medical data to corporations without your consent. Or as an editorial published in The New England Journal of Medicine puts it, “Although patients (and their physicians) still have difficulty obtaining complete medical record information in a timely fashion, HIPAA policies permit massive troves of digital health data to traverse the medical-industrial complex unmonitored and unregulated.”
While that may seem like a dick move, new research from a multidisciplinary team of legal scholars, health information exchange experts and bioethicists entertains an intriguingly modern solution to a growing privacy problem: What if we turn our medical records into NFTs?
Non-fungible tokens first emerged in the art world as one-of-a-kind digital assets legitimized by a digital contract and bought and sold using blockchain technology. But now, researchers speculate that these same NFT contracts could be used to give patients more control over their data and personal health information. “NFTs have evolved into digital contracts composed of metadata to specify access rights and terms of exchange,” the study authors write. “Their nature as metadata means that NFTs point to digital content but are not the content itself.”
They go on to elaborate that it’s this digital contract that prevents the “unsanctioned circulation of artwork online” that has since “bled into sports, entertainment and even health care, commodifying digital information and creating a multi-billion-dollar market.” Essentially, the digital contract and protection of it is what makes something an NFT.
“In the midst of what some people are calling the ‘NFT craze,’ we noticed that the underlying technology — smart contracts — offer some potential to address the data protection gaps and return some measure of control to patients in deciding how their data is shared,” Kristin Kostick-Quenet, assistant professor at the Center for Medical Ethics and Health Policy at Baylor University and co-author of the study, tells me. “This can only work if your health data is safely stored, and the NFT acts as a kind of gatekeeper.”
That said, at the moment, Kostick-Quenet and her colleagues’ findings are entirely speculative and hypothetical. It’s also important to note that the NFT space is still very new and riddled with data security problems itself as well as disagreements over intellectual property — all of which would need to be resolved before any such system might be useful for protecting medical records.
“For NFTs to work as tools for data protection and consent to exchange, they need to be supported by a larger system of technologies — like encryption and federated learning — and, of course, the will of individuals to care about their privacy,” Kostick-Quenet explains. And unfortunately, we’re not quite there yet. “If it’s in an insecure database or already being shared by the hospitals and according to data sharing agreements that are outside of your control, then NFTing your health data isn’t going to be of much use to you.”
Still, Kostick-Quenet and her colleagues are optimistic that more research like theirs could push our currently flawed health-care system in a more democratic direction regarding personal data. “Using NFTs for health data is the perfect storm between a huge marketplace that’s evolving and the popularity of cryptocurrency, but there are also many ethical, legal and social implications to consider,” says Amy McGuire, senior author of the paper and the director of the Center for Medical Ethics and Health Policy at Baylor University, in a press release.
At the same time, it’s not as though the current system is any better. So if anything, it might just come down to whether you want your health data surfing the open web with everyone else’s, or deciding that this is the one thing worth jumping on the NFT bandwagon for.