Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit?
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Yep. And I said no. She initially said not to worry because it's all deleted afterwards. I said that, no, it is not. That's not how LLM's work. All that data remains in there somewhere and can be hacked, plus I don't want anything about me used to train those things on principal. She didn't argue.
@Mikal @emilymbender I suspect the disconnect here is that based on how medical information is suppised to be handled, she should be right.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender The booking system wouldn't let me proceed without providing consent. I'm allowed to opt-out by providing a written request; I've not (yet) done that.
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@emilymbender The booking system wouldn't let me proceed without providing consent. I'm allowed to opt-out by providing a written request; I've not (yet) done that.
@BoydStephenSmithJr That ... isn't really consent.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
My doc did say she was going to use it, but I said no. She said it's easier for her. I said no. She no longer brings the thing in the room. My cardiologist, however, just put the device on the desk & I said no. He started to hem & haw, reached to turn it on, then said it wasn't working. I talked about lots of things, and how it felt like I had a basketball in my gut. The summary "he" wrote said that I play basketball for exercise. I'm 71 with health issues. He lied.
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Doctor at Kaiser did ask. I asked what happened if I refused, and they actually weren't able to tell me. So I assume they are recording everything regardless of what I say.
@EverydayMoggie @emilymbender That…would honestly scare me more than the initial request, I think. How are you a medical provider and you don’t know what happens when a patient refuses to consent??
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender yes. I said no. Said I was very against it.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender yes. I said no. That I was very much against it.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender yesterday, and I said no.
thanks for putting out a newsletter talking about it
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My doc did say she was going to use it, but I said no. She said it's easier for her. I said no. She no longer brings the thing in the room. My cardiologist, however, just put the device on the desk & I said no. He started to hem & haw, reached to turn it on, then said it wasn't working. I talked about lots of things, and how it felt like I had a basketball in my gut. The summary "he" wrote said that I play basketball for exercise. I'm 71 with health issues. He lied.
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@BoydStephenSmithJr That ... isn't really consent.
@emilymbender I agree. I didn't feel like fighting it. Healthcare in the U.S. is tiring for everyone.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender THANK YOU for point 9. It drives me batty how poorly people (read: management) rate the importance of mental review, slower moments, and backburner thinking for improving or maintaining skills. Something something working out is 10% active work and 90% fueling/rest.
Not to mention that a rushed/stressed provider makes ME stressed and less likely to be candid or “be complicated”, which is not the point of a visit!
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender Yes. I think this is becoming quite common. Medical groups are providing this service through enterprise-wide medical information systems. I was grateful to be asked. I’ll just add that doctors do not like lectures from patients.
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@emilymbender Yes. I think this is becoming quite common. Medical groups are providing this service through enterprise-wide medical information systems. I was grateful to be asked. I’ll just add that doctors do not like lectures from patients.
@meltedcheese Nowhere am I suggesting that patients lecture their doctors, though?
This information can help patients make decisions for themselves about this. If consent is being requested (as it should be), then 'no' is a complete sentence.
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@emilymbender yes. I said no. Said I was very against it.
@JoBlakely @emilymbender I asked a therapist: was our session being used to train the AI? Because I did not want that.
She said she didn't know, and said she wouldn't record any more until she had the answer.
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@emilymbender I agree. I didn't feel like fighting it. Healthcare in the U.S. is tiring for everyone.
@BoydStephenSmithJr @emilymbender Brought to you by the Consently(TM) platform
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@JoBlakely @emilymbender I asked a therapist: was our session being used to train the AI? Because I did not want that.
She said she didn't know, and said she wouldn't record any more until she had the answer. @deborahh @emilymbender I just forwarded this article to my doctors office. Hopefully those using it will read it.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
@emilymbender Great article. The privacy of my protected health information is my immediate concern. There are many ways it can and does leak. It’s not the provider’s fault, it is in the whole chain of info systems backing them up. Using an LLM multiplies the risk. Training data is EXTREMELY valuable. There is no way the recording or transcript are getting deleted. It’s getting sold. The incentives are all wrong to ensure HIPAA compliance.
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
Yes, and by a couple of specialists who it has taken a lot of time/money to get in to see, so I've felt almost coerced into agreeing as I didn't want to risk them declining to see me so I consented against my better judgement.
Do you think there are other ways we can fight this outside of directly declining consent in these situations? One of the providers I see who has been using one for ~2 years now is the only person I've been able to see locally who can prescribe a tightly controlled medication, so I'm quite reluctant to risk the (tenuous) relationship I have established (I already don't feel like I can be completely open and honest with her, and fear what may happen if I decline the use of the scribe).
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Have you been asked by a medical provider recently for consent to have an "AI" scribe record your visit? Us, too. And we have **thoughts**
Why you should refuse to let your doctor record you
By: Emily M. Bender and Decca Muldowney At a recent appointment, Emily’s physical therapist (who knows some about her research) said, “Before we get started,...
(buttondown.com)
Refuse! Don't do the doctor's job of taking notes, let alone support their choice to have AI transcribe notes for them. The accuracy rate is poor, but incorrect notes would still be used to treat you.
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@emilymbender Yes. I think this is becoming quite common. Medical groups are providing this service through enterprise-wide medical information systems. I was grateful to be asked. I’ll just add that doctors do not like lectures from patients.
@meltedcheese given my frankly dreadful and queerphobic/allistic centric medical experience in the supposedly 'better' NHS in the UK - I don't care for doctor's fee-fees about being 'lectured'.
At least 2-3 cases in my life where doctor's egos over a patient daring to contradict them cos 'I'm the trained medical professional here' has meant they refused to accept something that down the line was proven scientifically to be 100% correct.
Like my NCGS, apparently all in my head...until someone did a double blind study and it was grudging acceptance that I wasn't lying about my gluten issues...they totally missed my neurodivergence even with me being taken as a child to the GP with classic issues over hyperfocus and not hearing my parents. Putting me on child doses of my inhaler as an adult cos I argued over them removing steroidal drugs from repeats without asking.
Have been gaslit by other doctors over THEIR COLLEAGUES diagnoses as well.
So yeah...fuck them. Lectures kept me alive so far. Do not trust.
