Comment An alternative: Tim Berners-Lee's SOLID project (Score 1) 172
See: https://ancillary-proxy.atarimworker.io?url=https%3A%2F%2Fsolidproject.org%2F
Sir Tim had proposed this a while back and it does work. A group of friends set this up overnight to share info between ourselves on things we could borrow from each other - board games, powertools, etc. Took a couple of hours to set up - mostly because we all love arguing about stupid stuff.
With this tech I could set up my own medical data server if I want,. For my less tech savvy mom I can get her set up on a commercial server. Granting permission can be scripted, and can use credentials managed on a trusted server, so access grants can be automated if I am unconscious; but only to people who have been vetted by an authority I trust. I and my family can always see who was granted access to what data, and we can withdraw access at any time.
Completely decentralized, no single repository. All of the upsides, very few down sides.So why not this? Might it be that no great oligarch (and lets be honest thats what Bezos, Musk and Tim are; and Trump is trying to become) gets to own it?
It would be awesome if smart folks like the ones on Slashdot could get behind a community movement like this, and arm twist the government that is supposed to represent our needs to force hospitals to accept this as an alternative to a centralized on that requires I give up all rights to my own data.