Stream: patient empowerment
Topic: Data Self-Sovereignty
Peter Jordan (Jun 22 2020 at 21:51):
Some interesting perspectives in this article... https://bert.substack.com/p/long-take-data-self-sovereignty-cant
Hamish MacDonald (Jun 22 2020 at 22:18):
Peter Jordan said:
Some interesting perspectives in this article... https://bert.substack.com/p/long-take-data-self-sovereignty-cant
Thanks @Peter Jordan I have a specific view on Data Sovereignty as it relates to healthcare. On the general level, indeed we cannot claim to "own" all sorts of data about us that is "out there" in the economy and society. Such information is essential to the efficient functioning of society. But what we can own is our own copy of our healthcare data - that particular copy becomes our own personal property, and then share it as we like, with whom we like, for whatever reason. From that perspective, the goal then becomes to obtain as much pertinent healthcare data (including SDOH etc, not usually found in any meaningful quantity or quality in clinical records) about ourselves as possible, so that our record becomes not just a credible source of truth, but "the best source of truth" about my health. And that particular source is mine. This does not impinge in any way on the source of truth held in any EHR or government database, etc.
Last updated: Apr 12 2022 at 19:14 UTC
