These tokens have to be worth something in order for the security to functionally exist. You can't separate the monetary side from the security, because the monetary side incentives the security. And security is the only thing blockchain adds.
Not wanting it to be public should be obvious. Immutable though, what if I need to change my name/gender to match reality?
It's not enough to just update the value, because the old value still exists on the blockchain. That's just another method to find my deadname and use it for harassment.
But the points you raise, are exactly the issues I've been thinking could be solved with web3. I am imagining using it to give control to the patient of who has read access(to what and when), who can add data, etc.
I.e. give full transparency and control to the patient. Instead of the current situation where a patients data is on different systems, you don't know what it actually says, besides what a doctor tells you.
But as far as I understand, it should be possible for a user on a blockchain, to have their set of data encrypted in the ledger. It should also be possible to implement a sort of permission scheme.
So I am imagining, instead of relying on things like Epic Systems and other EHR systems, that control your data and might have incentives to not share them with other systems. One could imagine a EHR system based on a blockchain. The patient can then grant permission to, say a hospital, to read certain data from the ledger. This could be scoped to what is necessary in the context of their visit or procedure. After the visit to the hospital, the patient has full transparency to read what data has been added to their own records.
Anyway, I am not capable to give a full technical solution, since I have not thought it fully through, and not nearly knowledgable enough to actually know. So I might be very wrong in my assumptions, and would gladly be told otherwise if that is the case.
Then there's the whole issues of how do you get existing systems as Epic to integrate with said "blockchain EHR".
Edit: This might be of interest: https://journals.sagepub.com/doi/full/10.1177/14604582198663...
