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Comment by pessimizer | Hacker News Reader

This is great. Now let us delete them.

Good luck with that. If the medical group you are a part of is in their regional, statewide or a country wide HIE, you'd have to check with every connected partner to see what other systems may have queried for your data and potentially have copies as well.

You typically won't have your data in too many other systems unless you are hopping between different medical groups/hospitals. There's just a possibility that the above could happen because, seeing and making the sausage, I wouldn't trust anyone to be able to tell me who has seen my health records.

Or you can request your MIB, which is basically like a credit report for healthcare.

https://www.mib.com/request_your_record.html

The providers I've seen have had my records online since at least 2015 so this regulation doesnt really affect me much. You just have to know who what and how to ask.

I can see something like this negatively impacting what doctors say to each other.

Why?

You may have read the comment the way I initially did:

as "Now let us (let's) delete them"

I think his meaning was "give us the right to delete them" which IMO should be the standard.

Privacy, “right to be forgotten”, self-determination, etc. seem like likely reasons for someone to want that.

Because patients should have the right to decide whether and where their confidential medical data is stored.

Astounding to me that anyone is downvoting this sentiment. I would love to hear some sort of rationale from anyone who believes that individuals shouldn't have the right to control who has access to their own private medical information and who stores it.

Not the down voter, but if you look through guidance from the malpractice insurance industry (e.g., https://www.thedoctors.com/articles/medical-and-dental-recor...) you will see that defense against potential malpractice claims is a key driver of retention practices. Introducing a right to be forgotten in healthcare would presumably require concomitant reform of the medical malpractice landscape.

I'm not arguing against the sentiment (and indeed I think patients should have a much stronger ability to audit and control how their records are shared, including the ability to opt out of sharing) -- but when it comes to records retention by the originating organization, it's important to evaluate these practices in the broader context.

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