Profit for patients: can NFTs allow people to monetise their health data?

NFTs could democratise access to health information, but challenges around the nascent technology must first be addressed, writes Darcy Jimenez.

Whether you know what they are or not, chances are you’ve heard of non-fungible tokens, or NFTs. NFTs are digital tokens that represent ownership of entirely unique items; stored and traceable in a blockchain, they cannot be modified, replaced, or duplicated. Assets minted as NFTs are sold and traded on digital marketplaces and can have only one official owner at any time.

From art to real estate, it seems NFTs are infiltrating almost every market – and healthcare could be next. In a commentary published in Science earlier this month, a cross-sectional team of scholars led by bioethicists at Baylor College of Medicine (BCM) proposed that the emerging technology could allow patients to control and profit from their medical data.

Shifting the ownership of data back to patients is a notable long-term goal, but unknowns surrounding data integrity and privacy, and blockchain technology’s harmful environmental impact, make any overarching assertions on the influence of NFTs in healthcare premature. Still, given that 80% of data from the approximately 1.2 billion clinical documents produced in the US every year is trapped in electronic health record systems, patient data NFTs have emerged as one potential solution.

The state of health data

So, what’s wrong with the way health information is collected and used now?

Well, quite a few things, according to bioethicist Kristin Kostick-Quenet, who is an assistant professor in the Center for Medical Ethics and Health Policy at BCM and first author of the Science paper. One of the key issues, she says, is that people don’t know where their medical data ends up after it’s been collected.

“It’s something that patients currently don’t have much control over,” Kostick-Quenet explains. Right now, the health exchange marketplace is dominated by a few powerful players, without much incentive for patients to participate in decisions about who gets access to their health information, she says.

With AI and big data becoming increasingly vital to drug research, sensitive health data like hospital records or genetic information is a highly valuable commodity

With AI and big data becoming increasingly vital to drug research, sensitive health data like hospital records or genetic information is a highly valuable commodity – and it can often be bought, sold or exchanged entirely without a person’s knowledge or consent.

Kostick-Quenet adds that there is an emerging industry which seeks to re-identify anonymised data, connect it with data on other platforms like social media to build an individual’s profile, and sell this information to third parties. Smart contract technology that allows for digital ownership, she says, holds promise as a means of securing personal records and “democratising access” to health information.

How do health data NFTs work?

Put simply, an NFT consists of a unique identification code and link to an asset’s online location. When applied to medical data, this could serve as a de-identified, patient-controlled copy of one’s health information, including the terms and conditions under which the data can be obtained and used.

For Kostick-Quenet, it’s too early to say exactly how health data NFTs would look in practice. “It all depends on how quickly other technologies keep pace,” she says, and the kinds of opportunities they provide for interactions with smart contracts.

Put simply, an NFT consists of a unique identification code and link to an asset’s online location. 

Those working in the NFT space will also admit the technology is nascent at this stage – but for Aimedis, a health tech company that recently launched a digital marketplace for medical data NFTs, it’s already a reality. In Aimedis’ DataXChange marketplace, a person’s anonymised, health-related data is minted by the accredited institution – for example, a pharmaceutical company or CRO – that wishes to purchase it. Patients can be paid in cryptocurrency or in tokens to be used towards Aimedis’ other healthcare services – but the company’s CEO Michael Kaldasch says they are working to make payments in regular currency an option too.

Impact on the pharma industry

In Kaldasch’s view, monetising health data through NFTs can incentivise patients to offer up information. On the flipside, since the data associated with the NFT is defined, a company would benefit from knowing exactly what information they’re getting.

“You say, ‘I need people with this diagnosis, and age range’, and that is then put into an NFT and delivered to the customer,” Kaldasch explains. Pharma companies can buy information tailored to their needs and save money that would otherwise be spent on “dummy data”.

NFTs could ensure better data integrity for purchasers, too. As Kostick-Quenet’s Science article notes, the blockchain-based technology would allow companies or research groups to verify “the authenticity and provenance of [the] health data” they are buying.

NFTs give transparency and accountability to the exchange of personal data, and could improve public trust in the drug industry. 

Jim Nasr, CEO of blockchain-enabled software developer Acoer, says NFTs give transparency and accountability to the exchange of personal data, and could improve public trust in the drug industry. Last year, Acoer launched a decentralised software engine called RightsHash, which allows a person’s rights – like their consent to participate in a clinical trial – to be managed and tracked as NFTs.

By opting for data that is patient-controlled and traceable, Nasr says, the pharma industry “can essentially engage [its] patients directly and be much more accountable”.

Even if drug companies are reluctant to embrace the concept of health data NFTs, Kostick-Quenet says it’s only a matter of time before the industry accepts the technology’s growing presence – and patients’ demands to be involved in the exchange of their personal information. As the ethos of decentralisation with greater democratisation and personal control of one’s digital information gains traction, she says, “it’s going to be impossible for pharma and other big industries to ignore that movement”.

Medical NFTs: the challenges

While Kaldasch and Nasr guarantee the security of any personal information managed by their companies, NFTs are in their infancy, and concerns about data protection remain.

Unlike NFT-monetised artworks which are visible even to those who don’t own them, data on Aimedis’ marketplace can only be accessed by the provider and whoever has purchased it. Should the NFT be sold to a new owner, the patient who originally provided the health data is able to track where it is being bought and used.

“The security of that information is only as good as where the data is stored,” Kostick-Quenet explains. NFTs are smart contracts that point to where the information is online, and if this data is stored in an insecure place that’s susceptible to security breaches, blockchain and smart contracts are not going to help. One exception is if the NFT metadata is stored ‘on-chain’ or includes information on all the recorded transactions associated with it.

When we think about using smart contracts to help democratise access, control and exchange of personal health information, Kostick-Quenet says it must all be considered within the context of larger technological solutions that take data integrity and protection into account. “No place [online] right now is completely secure.”

What’s more, while the immutable nature of the blockchain is touted as proof of its security, this unique feature could cause serious problems for both patients and the parties purchasing the health data. If we are unable to erase or modify data stored on the blockchain, any errors or inaccuracies in a person’s health information cannot be rectified – potentially compromising both the medical research and patient care that rely on that data. The blockchain’s immutability is also at odds with the European Union’s General Data Protection Regulation – the most stringent privacy and security law in the world – which grants individuals the right to have their personal data rectified or erased.

There’s also no escaping the fact that NFT technology is complicated. How can we expect patients to willingly submit sensitive information when, at this stage, NFTs are too complex for the average person to fully understand? The Science commentary points out that if people need potentially expensive intermediaries to help mint and manage their NFTs, “socioeconomic factors will act as gatekeepers for digital ledger citizenship” and exacerbate “existing digital divides and participation gaps”.

Kaldasch admits that accessibility to NFTs is a problem but says companies in the space are working to change this, and he’s optimistic things will improve in the next few years.

“It’s good to be in [this space] early, to adapt the technology, grow with it, and support the mission to make this more accessible,” he says.

Last but certainly not least, NFTs are currently an environmental nightmare. A mind-bending amount of energy is consumed with every transaction, and mining the cryptocurrencies used to buy them is an incredibly carbon-intensive process. We must consider whether the technology, and the solutions and possibilities it offers, could ever outweigh its environmental impact in the face of a climate crisis. The pharma industry, which is already facing pressure to reduce its carbon footprint, should be particularly cautious when it comes to adopting eco-unfriendly technologies.

The future of patient data?

NFT technology is still finding its feet, and there is a lot that must (and possibly may never) be ironed out – but Kostick-Quenet says “it’s never too soon” for drug companies to think about getting involved. Aimedis’ NFT technology is already being employed in hospital projects and clinical trials, and Nasr says Acoer is in active discussions with a major pharma company about applications for the company’s software.

At the heart of the concept of health data NFTs is accountability and patient control; when or if ever the technology becomes widespread in health research and care, those values must remain the priority.

“It would be really great for all parties involved to think about how we could mutually benefit from the exchange of personal health information,” Kostick-Quenet says. “So that it’s not favouring just a small number of players, and the profits aren’t all going in one direction.”