In a Policy Forum, Kristin Kostick-Quenet and colleagues highlight the potential for non-fungible tokens (NFTs) to be used in the health information exchange (HIE) to improve patient control over their personal health information (PHI). “We argue that NFTs or NFT-like frameworks can help incentivize a more democratized, transparent and efficient system for HIE in which patients participate in decisions about how and with whom their PHI is shared,” writes Kostick-Quenet et al.
As big data and machine learning continue to move to the forefront of health care and translational research, an individual’s PHI has become more valuable to those who seek to use it. This information is often exchanged on HIE, a market dominated by commercial interests where PHI is regularly accessed and used by institutions, organizations and third parties without patients’ knowledge or consent. In most cases, patients have very little say in which of their PHI data is shared and with whom.
However, according to the authors, there are many situations where the unique and distinctive features of NFTs – which have experienced a recent cultural explosion in the context of digital asset ownership – could offer patients more agency in the access and use of their PHI. Put simply, NFTs provide a way to secure ownership over the management of digital information using blockchain technology. Here, Kostick-Quenet et al. explore how the technology could be applied to healthcare data, as well as the potential practical and legal considerations and challenges of doing so, including ensuring data security, privacy and intellectual properties rights, and also equity, sustainability, and public trust of the technology.