Having a chronic illness brings a thousand small administrative tasks. One of the most frustrating new ones is having to go through every doctor's note, letter, pathology form, and consultation report and correct the little bits of fiction that their LLM note-taking app has added in.

I don't need this extra task! My illness is already a full-time job.

#LLM #fuckAI #chronicillness

This worst part is not the little mistakes, e.g. the wrong condition written on a form. Doctors make those mistakes too, and even though the LLM makes more of them, they're easily corrected.

The bigger issue is the focus problem. The LLM doesn't know what's important.

I'm currently seeing a doctor for a course of treatment. We check in monthly to see how the treatment is going, tweak my other meds, and talk about any issues that come up.

Because he is a normal human person, he starts every consult by asking me how I am and what's happening in my life. At our last consultation, I mentioned some life stress.

The LLM wrote in my consult notes that I was consulting him for the life stress. It doesn't even mention the condition I'm being treated for. Now that's in my notes, and when the doctor goes to review them (or if another clinic needs to look at them), they'll get completely the wrong idea about the consultation. The very serious medical condition is de-emphasised, and the inconsequential chatter is given pride of place.

I'm basically in the position of having to write my own consult notes for every consultation, and give a list of corrections to the doctor. It's another laborious task that makes medical care inaccessible.

We also briefly discussed a relative of mine who has dementia. The LLM has given me a differential diagnosis of early familial cognitive decline, currently asymptomatic.

Reader, it goes without saying that I do not have this. And neither does my relative, who is in their 80s. Their condition is not "early" by any measure.

Correcting these bullshit AI notes is going to take me hours.

@fullfathomfive I'm taking care of my 80 year old grandmother with Dementia, and work with a specialist that deals with it through her home health service. And there is no such thing as a "typical demential" case. It's really not asymptomatic as I understand. It's either there or it isn't. I would NOT trust an LLM with my Nanny's care at all.
@fullfathomfive Can you point out some of the more egregious screw-ups to your doctor and request that no AI transcripting be used? I dunno, it seems really strange to be foisting it on you. And what if you miss something?

@kauer I can and will point the errors out, but if I request AI summarising not be used, I will be charged an extra fee for the time it takes the doctor to write case notes himself, and his fees are pretty high.

Also, I can ask this doctor not to use it because we have a good relationship, but every doctor I've seen in the past year uses LLMs. Some specialists are hard to access, and there are very few that treat my condition. If you say up front you don't want AI used, they can refuse to see you. Or if you do it during a consult, you risk alienating them and derailing your treatment.

It's an exhausting extra hurdle to negotiate, however you approach it.

@fullfathomfive @kauer jfc i’m lucky my doc doesn’t see value in this, when he retires (inevitable, i have to accept), the shock of this new norm’s going to send me

@fullfathomfive
Asymptomatic. So, there are no symptoms.
What exactly does it thin,. oh yeah! it's a chaos machine -- NOT an intelligence.

And I'm guessing most doctors are generally not critical enough to think about this fact when they read nonsense streams of perfect grammar

@fullfathomfive There's been some work done on this, and lots of anecdotal evidence around it too, where people have been able to deliberately bias or derail a transcript. Sometimes it's as simple as saying a key word a few times. One of the "vectors" mentioned was that transcripting LLMs will often assume the start of the transcript "sets the scene", i.e., is more important than it really is.

I know - anecdotal, but it does kinda track.

@fullfathomfive I had a similar experience, an appt with a new general practitioner. The ai summary reduced our conversation to “hand and foot pain” and eliminated mention of bilaterality, joint deformities, worse in the morning, better with activity, and months long duration … ALL of which point to Rheumatoid Arthritis, the whole point of the visit. I scolded the doc, reminded him that millions of Americans have hand and foot pain but not RA.
@BegoniaArizona That's so frustrating and dangerous! So many people could be misdiagnosed and given the wrong treatment (or no treatment at all!) because of this.