this post was submitted on 08 Dec 2023
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At a time when abortion access can vary widely across the U.S., many reproductive health advocates are concerned about the impact of data sharing systems that automatically transmit patients’ electronic health records across institutions and state lines. The Biden administration is looking to introduce new regulations to bolster patients’ privacy — but the proposed rules are getting pushback from companies like UnitedHealth Group and Epic, which argue that they would make data sharing harder overall, contrary to the overarching goals of the health care system.

In April 2023, the Office of the National Coordinator for Health Information Technology (ONC) proposed regulations that aim to bolster patient confidentiality by forcing software makers to ensure that health care providers can easily segment and protect specific information from disclosure when requested by patients.

According to the proposal, health records systems will be required to comply with a new privacy and security framework by January 2026.

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[–] [email protected] 4 points 1 year ago

I understand the position here - particularly since abortion history is important information in certain clinical contexts, and is noted for stuff like pap smears etc. - but given the current legislative stuff going on in certain states these proposed regs make sense.

That said, not all contexts - people in Ontario Canada can opt out of their lab test data getting stored by OLIS, for instance, but all that really does is make it a bit harder to get your medical history.

[–] [email protected] 1 points 1 year ago* (last edited 1 year ago)

We so need this change or something like it. There's an un believable amount of waste and medical errors in the Healthcare system that results from poor communications between different Healthcare Institutions. I'm skeptical about push back from the big companies like epic, who use things like their own care everywhere system, that do this but only between institutions that use them, as a selling point.

I totally see the concern of reproductive rights advocates though. I think the ideal solution is to codify roe v wade into federal law and also just generally protect people's Healthcare data from bad faith state actors better. But in the meantime maybe something like an opt out? Like a central registry where you can say, hey I don't want my data to be able to go to my new doctors automatically when I see them. And then if you previously had an abortion or you're getting care for your trans child out of state or something it would be inaccessible to new health care providers. Like a federal government website where you could manually shut off the data sharing yourself for any reason.