Paper by Kristin Kostick-Quenet et al: “Personal (sometimes called “protected”) health information (PHI) is highly valued and will become centrally important as big data and machine learning move to the forefront of health care and translational research. The current health information exchange (HIE) market is dominated by commercial and (to a lesser extent) not-for-profit entities and typically excludes patients. This can serve to undermine trust and create incentives for sharing data. Patients have limited agency in deciding which of their data is shared, with whom, and under what conditions. Within this context, new forms of digital ownership can inspire a digital marketplace for patient-controlled health data. We argue that nonfungible tokens (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…(More)”.
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