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)”.
How to contribute:
Did you come across – or create – a compelling project/report/book/app at the leading edge of innovation in governance?
Share it with us at info@thelivinglib.org so that we can add it to the Collection!
About the Curator
Get the latest news right in your inbox
Subscribe to curated findings and actionable knowledge from The Living Library, delivered to your inbox every Friday
Related articles
Artificial Intelligence
DATA
Meaningful Engagement: Lessons from Canada and Other Democracies
Posted in May 23, 2026 by Stefaan Verhulst
E-Gov
INSTITUTIONAL INNOVATION
The GovTech Compass: Ten Principles for the Responsible Implementation of GovTech and Digital Public Infrastructure
Posted in May 22, 2026 by Stefaan Verhulst
DATA
Data Collaboratives
Global approaches to infectious disease surveillance and modeling
Posted in May 22, 2026 by Stefaan Verhulst