Entries by Tag health data
Dec 16, 2024
entries sorted by tags. (also see entries by date.)
Citizen-Sourced Data Commons
governance implications for <b>Open Science</b> more
Citizens Consent
An idea for more informed citizens based more
Federal Data Insurance Corporation
A Governance Model for a Health Repo
A Health Privacy API
My Hurt Locker
“Open” health data and GDPR
Perfect Health Repo Desiderata
Sharing v. Privacy
While the need for privacy and security have to be respected, access to patient data is essential for continuous learning as well as for diagnosis of edge cases. But the former makes it difficult to achieve the latter creating a tension that seems intractable. A workshop organized by Creative Commons, with generous support from Robert Wood Johnson Foundation, brought together those eager to resolve this tension, and make it possible to share data while respecting privacy. more
The Three Locks
Who Owns My Data?
Ownership, legally defined as a bundle of rights in the thing that is owned, arises from some provision in either common law or in statute that gives us rights in that thing in the first place. We own land because we bought it or we inherited it from someone who bought it or either we or our ancestors laid claim to it in the absence of anyone else contesting our claim. Similarly, we own other property because we bought it we were gifted it or we inherited it. If there are competing claims to our property, our own claim is weakened until we can prove otherwise. We own statutory rights in intellectual property based on our authorship of that work with sufficient creativity. However, none of these characteristics define health data. We produce health data through the act of existing, but we don’t have any creativity in it. The only thing we have is a right to privacy that gives us the prerogative to deny the use of our data by others. The question then becomes – should we own our health data or not? and what would be implications of doing so one way or another? more
Sharing v. Privacy
While the need for privacy and security have to be respected, access to patient data is essential for continuous learning as well as for diagnosis of edge cases. But the former makes it difficult to achieve the latter creating a tension that seems intractable. A workshop organized by Creative Commons, with generous support from Robert Wood Johnson Foundation, brought together those eager to resolve this tension, and make it possible to share data while respecting privacy. more