Whether or not you know what they are, 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 only have one official owner at a time.
From art to real estate, it seems NFTs are infiltrating almost every market – and healthcare could be next. In a comment published in Science earlier this month, a cross-functional team of researchers led by bioethicists from Baylor College of Medicine (BCM) proposed that emerging technology could empower patients to control and benefit from their medical data.
Transferring ownership of data to patients is a notable long-term goal, but the unknowns surrounding data integrity and confidentiality, as well as the detrimental environmental impact of blockchain technology, make any blanket claims about influence premature. NFTs in healthcare. Yet, given that 80% of the data from the approximately 1.2 billion clinical documents produced in the United States each year is trapped in electronic health record systems, patient data NFTs have emerged as a potential solution.
The state of health data
So what’s wrong with the way health information is collected and used today?
Well, quite a lot, according to bioethicist Kristin Kostick-Quenet, who is an assistant professor at BCM’s Center for Medical Ethics and Health Policy and first author of the Science paper. One of the main problems, she says, is that people don’t know where their medical data ends up once it’s been collected.
“It’s something that patients currently don’t have much control over,” says Kostick-Quenet. Currently, the health exchange market is dominated by a few powerful players, with little incentive for patients to participate in decisions about 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 very valuable commodity – and it can often be bought, sold or traded entirely at without a person’s knowledge or consent.
Kostick-Quenet adds that there is an emerging industry that seeks to re-identify anonymized data, connect it with data on other platforms like social media to create an individual’s profile, and sell that information. to third parties. Smart contract technology that enables digital ownership, she says, holds promise as a way to secure personal records and “democratize access” to health information.
How do health data NFTs work?
Simply put, an NFT consists of a unique identification code and a link to an asset’s online location. When applied to medical data, this could serve as a patient-controlled, anonymized copy of their health information, including the terms and conditions under which the data may be obtained and used.
For Kostick-Quenet, it is too early to say exactly what health data NFTs would look like in practice. “It all depends on how quickly other technologies keep pace,” she says, and what kinds of opportunities they provide for interactions with smart contracts.
Those working in the NFT space will also admit that the technology is nascent at this point – 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, an individual’s anonymized health data is created by the credentialed institution – for example, a pharmaceutical company or CRO – that wishes to purchase it. Patients can be paid in cryptocurrency or tokens to use for other Aimedis healthcare services – but company CEO Michael Kaldasch said they are working to make cash payments as well running an option.
Impact on the pharmaceutical industry
According to Kaldasch, monetizing health data through NFTs can incentivize patients to provide information. On the other hand, since the data associated with the NFT is defined, a business would benefit from knowing exactly what information it is getting.
“You say, ‘I need people with this diagnosis and this age range,’ and that’s then put into an NFT and delivered to the client,” says Kaldasch. Pharmaceutical companies can purchase information tailored to their needs and save money that would otherwise be spent on “dummy data”.
NFTs could also ensure better data integrity for buyers. Like Kostick-Quenet Science article notes, blockchain-based technology would allow companies or research groups to verify “the authenticity and provenance of [the] health data” that they buy.
Jim Nasr, CEO of blockchain-enabled software developer Acoer, says NFTs bring transparency and accountability to the exchange of personal data and could improve public trust in the pharmaceutical industry. Last year, Acoer launched a decentralized software engine called RightsHash, which makes it possible to manage and track a person’s rights – such as their consent to participate in a clinical trial – as NFTs.
By moving to patient-controlled and traceable data, says Nasr, the pharmaceutical industry “can essentially commit [its] patients directly and be much more responsible”.
Even if pharmaceutical companies are hesitant to embrace the concept of health data NFTs, Kostick-Quenet says it’s only a matter of time before the industry embraces the technology’s growing presence — and the demands patients to be involved in the exchange of their personal information. As the philosophy of decentralization with greater democratization and personal control of one’s digital information gains traction, she says, “it will be impossible for pharma and other big industries to ignore this movement.”
Medical NFTs: the challenges
While Kaldasch and Nasr guarantee the security of all personal information managed by their companies, NFTs are in their infancy and concerns about data protection remain.
Unlike NFT-monetized artworks that are visible even to those who don’t own them, Aimedis’ marketplace data is only accessible to the vendor and whoever purchased it. If the NFT is sold to a new owner, the patient who originally provided the health data is able to know where it is purchased and used.
“The security of this information depends on where the data is stored,” says Kostick-Quenet. NFTs are smart contracts that point to where information is online, and if that data is stored in an insecure location that is susceptible to security breaches, blockchain and smart contracts aren’t going to help. An exception is if the NFT metadata is stored “on-chain” or includes information about all recorded transactions associated with it.
When we think about using smart contracts to help democratize access, control and exchange of personal health information, Kostick-Quenet says it all needs to be considered in the context of broader technology solutions. that take into account data integrity and protection. “No space [online] right now is completely secure.
Additionally, 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 parties purchasing the health data. If we are unable to erase or modify the data stored on the blockchain, any errors or inaccuracies in a person’s health information cannot be rectified, which could compromise both medical research and the patient care based on this data. The immutability of the blockchain is also at odds with the European Union’s General Data Protection Regulation – the strictest privacy and security law in the world – which grants individuals the right to have their data rectified or erased. their personal data.
It is also impossible to escape the fact that NFT technology is complicated. How can we expect patients to voluntarily submit sensitive information when at this point NFTs are too complex for the average person to fully understand? the Science The commentary points out that if people need potentially costly intermediaries to help them create and manage their NFTs, “socio-economic factors will act as gatekeepers to digital citizenship” and exacerbate “existing digital divides and gaps”. participation”.
Kaldasch admits accessibility to NFTs is a problem, but says companies in the industry are working to change that, 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 of making this more accessible,” he says.
Last but not least, NFTs are currently an environmental nightmare. A mind-blowing amount of energy is consumed with every transaction, and mining the cryptocurrencies used to buy them is an incredibly carbon-intensive process. We must ask ourselves if technology, and the solutions and possibilities it offers, could ever offset its environmental impact in the face of a climate crisis. The pharmaceutical industry, which already faces pressure to reduce its carbon footprint, should be particularly careful when it comes to adopting environmentally unfriendly technologies.
The future of patient data?
NFT technology is still finding its feet, and there are many things that need (and may never) be ironed out – but Kostick-Quenet says “it’s never too early” for pharmaceutical companies are considering getting involved. Aimedis’ NFT technology is already being used in hospital projects and clinical trials, and Nasr says Acoer is in active discussions with a major pharmaceutical company about applications for the company’s software.
At the heart of the concept of health data NFTs is patient responsibility and control; when or if technology ever becomes mainstream in research and health care, these values must remain the priority.
“It would be really great for all parties involved to think about how we could mutually benefit from the sharing of personal health information,” Kostick-Quenet said. “So that it doesn’t just favor a small number of players, and the benefits don’t all go in one direction.”