Jun 29, 2022 06:54 PM
(This post was last modified: Jun 29, 2022 06:55 PM by C C.)
https://www.theverge.com/2022/6/29/23188...-dobbs-roe
EXCERPT: Most patients don’t own their own medical records. Only one state — New Hampshire — gives people explicit ownership over their medical records. In some other states, laws specifically say that medical providers or hospitals own the records. “Most health systems will claim it’s their property,” says Eric Perakslis, the chief science and digital officer at the Duke Clinical Research Institute. “And that they have a right to it.”
HIPAA, the law governing medical privacy, requires that people are able to see their full medical records. But research shows that the process is often complicated and that clinicians sometimes don’t comply with policies designed to help people access their records. Even if someone manages to get full access, it can sometimes be missing things like clinicians’ notes or other details. Tracking down the complete picture can be difficult for anyone without the time and resources to advocate for themselves.
If they are able to get a full picture, patients are also able to request amendments to their medical records if they think something is inaccurate. Records often include decontextualized information, and it can be easy for people to spin that into whatever story they want to tell. With laws in place criminalizing abortion, people might want to make sure that their records are clear about how and why they sought out certain medical procedures. Doctors and hospitals, though, don’t have to agree to make that amendment.
“How can you even request changing things when you can’t get basic access to your medical information?” says Jennifer Miller, a bioethicist at the Yale School of Medicine. “That’s troubling.”
It’d be even more difficult to try to adjust medical records to keep out something that did happen, like a pregnancy-related procedure that could be deemed illegal. “There’s not any formal mechanism by which you can insist that something true be taken out of your record,” Zubrzycki says.
The conversations between doctors and patients may play out differently on the ground, and some doctors might be more open to requests to make changes — or to keep information from entering the record in the first place, Zubrzycki says. But that depends on the doctor being trustworthy and a patient having the experience, knowledge, and resources to self-advocate around their medical data. It’d be a case-by-case situation.
So, patients don’t have control of what goes in their records. But they also have limited control over where that opaque, unchanging medical record goes... (MORE - missing details)
EXCERPT: Most patients don’t own their own medical records. Only one state — New Hampshire — gives people explicit ownership over their medical records. In some other states, laws specifically say that medical providers or hospitals own the records. “Most health systems will claim it’s their property,” says Eric Perakslis, the chief science and digital officer at the Duke Clinical Research Institute. “And that they have a right to it.”
HIPAA, the law governing medical privacy, requires that people are able to see their full medical records. But research shows that the process is often complicated and that clinicians sometimes don’t comply with policies designed to help people access their records. Even if someone manages to get full access, it can sometimes be missing things like clinicians’ notes or other details. Tracking down the complete picture can be difficult for anyone without the time and resources to advocate for themselves.
If they are able to get a full picture, patients are also able to request amendments to their medical records if they think something is inaccurate. Records often include decontextualized information, and it can be easy for people to spin that into whatever story they want to tell. With laws in place criminalizing abortion, people might want to make sure that their records are clear about how and why they sought out certain medical procedures. Doctors and hospitals, though, don’t have to agree to make that amendment.
“How can you even request changing things when you can’t get basic access to your medical information?” says Jennifer Miller, a bioethicist at the Yale School of Medicine. “That’s troubling.”
It’d be even more difficult to try to adjust medical records to keep out something that did happen, like a pregnancy-related procedure that could be deemed illegal. “There’s not any formal mechanism by which you can insist that something true be taken out of your record,” Zubrzycki says.
The conversations between doctors and patients may play out differently on the ground, and some doctors might be more open to requests to make changes — or to keep information from entering the record in the first place, Zubrzycki says. But that depends on the doctor being trustworthy and a patient having the experience, knowledge, and resources to self-advocate around their medical data. It’d be a case-by-case situation.
So, patients don’t have control of what goes in their records. But they also have limited control over where that opaque, unchanging medical record goes... (MORE - missing details)
