Lemmy, I really would like to hear your opinions on this. I am bipolar. after almost a decade of being misdiagnosed and on medication that made my manic symptoms worse, I found stable employment with good insurance and have been able to find a good psychiatrist. I’ve been consistently medicated for the past 3 years, and this is the most stable I have been in my entire life.
The office has rolled out the use of an app called MYIO app. My knee jerk reaction was to not be happy about the app, but I managed my emotions, took a breath and vowed to give it a chance. After being sent the link to validate my account, the app would force restart my phone at the last step of activation. (I have my phone locked down pretty tight, and lots of google shit, and data sharing is disabled, so I’m thinking that might be the cause. My phone is also like 4-5 years old, so that could also be the cause.)
Luckily I was able to complete the steps on PC and activate that way. Once I was in the account there were standard forms to sign, like the HIPAA release. There was also a form there requesting I consent to the use of AI. Hell to the NO. That’s a no for me dawg.jpg.
I’m really emotional and not thinking rationally. I am hoping for the opinions of cooler heads.
If my doctor refuses to let me be a patient if I don’t consent to AI, what should I do? What would you do? Agree even though this is a major line in the sand for me, or consent to keep a provider I have a rapport with, who knows me well enough to know when my meds need adjusting?
EDIT: This is the text of the AI agreement. As part of their ongoing commitment to provide the best possible service, your provider has opted to use an artificial intelligence note-taking tool that assists in generating clinical documentation based on your sessions. This allows for more time and focus to be spent on our interactions instead of taking time to jot down notes or trying to remember all the important details. A temporary recording and transcript or summary of the conversation may be created and used to generate the clinical note for that session. Your provider then reviews the content of that note to ensure its accuracy and completeness. After the note has been created, the recording and transcript are automatically deleted.
This artificial intelligence tool prioritizes the privacy and confidentiality of your personal health information. Your session information is strictly used for the purpose of your ongoing medical care. Your information is subject to strict data privacy regulations and is always secured and encrypted. Stringent business associate agreements ensure data privacy and HIPAA compliance.
Edit 2: I just wanted to say that I appreciate everyone here that commented. For the most part everyone brought up valid points, and helped me see things I had not considered. I emailed my doctor and let them know I did not want to agree to the use of AI. I let them know that I was cool with transcription software being used as long as it was installed locally on their machines, but I did not want a third party online app having access to recorded sessions for the purposes of transcription. They didn’t take issue with it.
Thank you everyone!
I let them know that I was cool with transcription software being used as long as it was installed locally on their machines, but I did not want a third party online app having access to recorded sessions for the purposes of transcription. They didn’t take issue with it.
A cynical part in me thinks they’ll just have it “locally installed” in the same way that Firefox is locally installed (doesn’t mean the meaningful part runs locally), and that no third party has access because the servers just don’t show stuff from other tenants even though the server operator could theoretically see all. It’s not like the medical people necessarily know better if their vendor answered the concerns in this manner
One way to find out for lay people might be to turn off WiFi, or disconnect the network cable, and see if it still works — in case you’re in a position where the doc might seem willing to do such a 30-second experiment (if they haven’t already tried this in the past themselves). Doesn’t mean it doesn’t get uploaded when internet is reconnected (e.g. for backups), but that is much harder to check, and if the vendor already made sure the processing is all local then it’s probably okay and not being sold off as training or insurance data
Kudos for reading the terms of service and raising your concerns with them! So long as some of us keep doing that, the privacy of people who don’t know about this sort of thing is also better-protected. Thank you :)
I would nope the fuck out and change doctors. A regurgitation machine prone to hallucinations has no place in medical care.
If this was for a GP, I would agree with this stance. But a good, fitting and competent mental health professional can be harder to find.
That’s the last fucking profession who should be using LLMs… People can gaslight themselves with chatbots without paying for a trusted professional to reinforce that bullshit.
OP didn’t state this clearly, but I went and looked. The app is not for replacing consults, only billing etc. so I’d put it in the “annoying, but not world ending” category.
By god they’re going to make OP change doctors just because they hate “le stochastic parrot”. And op is probably in the US which makes the whole thing even crueller.
Literally a horde of teenagers playing with a bipolar’s head because they have big feelings about stuff.
And all this for a fucking note taking app Jesus Christ. Yeah sure OP is probably risking their mental health in the process but who gives a shit about that when you have an occasion to proclaim that le AI bad.
you seem to have no clue about the problem at hand. It’s the lesser of issues that the AI transcriber could hallucinate. the worse problem, which is irreversible, that the treatment session and every private detail that gets discussed is funneled to at best questionable companies who will do whatever they want with your private information. once that happened, you can’t just make them delete what they stored in the process, it is completely unveriable what they do besides offering the original service. everything that was told in the session will not stay between the two of you.
accepting this unknowingly is very dangerous. accepting it knowingly will alter what you say and the results with it, like going to a therapist who you know personally, which is not allowed for very good reasons.You think therapists and doctors in general don’t use Docs or Notes services that are hosted or backed up in the cloud ? You think having your medical data leaked to tech companies is new ? Just because the notes transcription app is AI doesn’t make it magically worse. In fact it makes the data harder to access as you need to re-infer the whole enchilada if you want to mine it (as opposed to, say, Google Drive who can just make a SQL query on your data and get it structured and ready to use).
It’s nice that mental health is so inconsequential to you that you can balance it against privacy purity politics. It’s really cool for you that you’re in this position of privilege. It’s not cool to be pushing on someone with a clinical condition in a way that will probably get them worse off, in a country with absolutely no mental health safety net. Just like antivax it’s coated in fake concern, but you’re playing a dangerous game with someone else’s life and you’re cool with it because you’re insulated from the consequences.
You guys really are a pure product of those amoral hyper-individualistic times.
It’s nice that mental health is so inconsequential to you that you can balance it against privacy purity politics.
oh now I’m a privacy purist! oh god what have I become! I want totally unreasonable things!!
or, it seems you by default don’t care about privacy at all because surely who needs it, and also already forgot the case of woman in USA using online period tracker apps that outed them for having an illegal abortion.
Just like antivax it’s coated in fake concern,
fake concern, sure… my concerns are very real, and OP has come for advice, asking among others what could be the consequences. well, this is one of the consequences there will be.
You guys really are a pure product of those amoral hyper-individualistic times.
yes, blame me, not the system that made this situation. don’t you want to call the cops on me?
I am concerned about what is done with the data generated via the saved recording and transcription. Yes I live in the USA. Our government is currently kidnapping people off the street and disappearing them for being brown. They are attempting to build databases identifying trans people. So yeah, I’m concerned that the third party my doctor is using, MYIO, could sell the data/transcripts, and before I know it I end up on a government list and disappeared because I am gay. Could the theft of this data being generated by the app lead to identity theft? MYIO says the videos aren’t stored long term, and everything is encrypted; but companies like and the monetary penalties are just rolled into the cost of doing business. This isn’t a note taking app, there are already plenty of transcribers on the market. This is something entirely different.
I’ve already had my identity stolen and credit cards opened in my name.
And no one is going to “MAKE” me change doctors. That’s something I decide for myself.
I don’t believe that. They just don’t want to pay them what they’re worth. Machines don’t ask for days off or health insurance, that’s their rationale. I hope they go out of business.
i would probably report him, and leave him a bad yelp review, warning others.
Yeah, though that’s about 4/5 of the actual people I’ve met working in psychology.
Definitely ask for how they are using it. I know a number of physicians that are just using it as a dictation software to quickly make a first draft for their paperwork, helps lighten a big load.
This is the answer.
Most docs can’t keep up with the mountain of paperwork or billing codes required by insurance companies these days. The software helps, but requires the doc to review and sign off the notes.
It’s not an LLM coming up with treatment plans, etc. It’s transcription+
Dictation and summary software could be installed onto the doctor’s computer.
There is something else going on here, with pushing an app onto patients.
The AI is the summary software. How else do you think the summary happens?
Lol, it happens on the doctor’s PC, without triggering clients.
Based on OPs edit that sounds exactly like what it’s doing.
I had a visit with a PA who pantomimed the use of an inhaler she didn’t actually have on hand. The note-taking robot decided that was a “demonstration” with a billing code, and that it should be billed as $800.
OP. I’m a bit of an unfortunate expert in U.S. Healthcare.
The fact that you have a psychiatrist who you trust that has you on the right meds and have been with for 3 years is invaluable. You calling yourself stable is a huge thing. You wouldn’t be saying that if you weren’t on solid ground.
It would be completely crazy to give up a psychiatrist who is on your insurance over some AI garbage that is just transcribing notes for your doctor.
At bare minimum get a new psychiatrist who is on your insurance before switching. That should take about 6 months if you’re very lucky.
Play it through: do you want to lose a quality prescriber and talk therapist? Also, maybe you should just tell them you’re extremely concerned and see what they say or do.
The end result can’t be worse than you giving up on your mental health. You already know how hard it is to find quality psych care.
I 100% agree with you. I trust my doctor. I don’t trust the app. Prior to this we were using zoom.
A video-conferencing call is generally one-to-one with the clinician you know and have a relationship with.
An AI app on your phone opens your data to being viewed and scrutinised by a 3rd party within the medical practice or outside. (Which may be a positive, adding other insights that a single person may miss) Unless this is agreed, it would be a breach of patient trust. It seems the agreement you click gives your permission to share your data anywhere that ‘furthers treatment’.
It seems like massive over reach to install it on your phone, instead of on the doctor’s computer(where it could still summarise all interaction).
I would say you are right to want to move away from this kind of imposition. If do you change doctor, make sure to indicate that you will not install any apps as part of your treatment.
At the very least I would install the app under a seperate user than my main account.
As a person who has strong bipolar tendencies but not over the threshold for a diagnosis even I struggle with these sorts of things and often find myself asking “is this thought not just self sabotage at the end of the day?” I’m also physically disabled and go to a lot of doctors appointments, who now use AI for notes and I don’t like it either but to allow that to stand in the way of my care would absolutely be self sabotage. If my doctors started outsourcing other aspects of their jobs to AI I would seriously have a problem and would reconsider my position but note taking is incredibly time consuming for doctors and if using software that transcribes our conversations allows them to be better at their actual job of being a doctor that’s a compromise I can make, especially when I remind myself bipolar symptoms often get in the way of a persons willingness to compromise
That’s the biggest concern.
People who need life saving mental Healthcare are already engaging on a brave journey admitting they need help and it’d be a shame if AI crap got in the way of that.
People just don’t think.
honest question. was it no problem that zoom was being used for the sessions? I am asking because by the post, you seem to care about your privacy
The zoom sessions weren’t being recorded, or being analyzed by AI to create a transcript. I met with my DR via zoom, and the DR took notes.
I understand that. my point is that zoom has access to the video and audio feed in transit. Despite them being very popular, they have lied about their systems without pause when they became big during covid, including that their system is end to end encrypted, which it is not.
there are better alternatives for it but unfortunately only a little fraction of the people know about them.
to be clear I support you if you are looking for preserving your privacy with this AI transcription, just wanted to let you know that information was already leaking, even if laws have baselessly believed that they did not.
Thanks!
what the hell! the question is nothing crazy, mindlessly accepting it is what is crazy! it is a hard situation to be in forsure, but it seems you have zero ideas about the consequences if you think its just “some AI garbage that is just transcribing notes”
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If your options are having a doctor that uses AI or having no doctor at all. Some doctor is better than none.
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I would ask more information about what AI they are using, where the data is processed (locally or online), where and how the AI collected data is stored (locally or in the cloud), who can access your data and whether it could be used for some AI training.
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I feel very strongly about this and I would change doctors. But of course it won’t be long before they all do this and we’ll have no alternative. The two biggest problems I see are
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I saw a news story where a doctor who uses this said it saves her time because before seeing the patient she gets an AI summary of their chart, so she doesn’t have to “go through several tabs” to read the actual information. Oh great, let the statistical probability text generator hallucinate up some shit about what’s in a person’s chart, to save 10 seconds of tab-clicking to read the ACTUAL patient records! If they want a summary there’s no reason a traditional report or summary screen couldn’t be programmed to pull data out of the most important fields and arranging them in the desired format.
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THEN the doctor uses her damn phone to record your visit, everything you say, and that gets run through the AI which generates a visit summary and puts that into your medical records. So, god only knows what 3rd party private corporate vulture has access to your doctor/patient conversations and what they’ll do with them, and again, what hallucinated shit will get put into your medical records!
So your doctor never reads your chart and never writes your chart! [Readacted] me now! Also what happens after a few iterations of an AI summarizing records that an AI wrote?
If you buy into the story that “someday they’ll all be using it” you are doing the AI boosters’ job for them. It is not a foregone conclusion, and there is no reason to accept that future.
I hope you’re right! The magical thinking and child-like trust in this tech by otherwise intelligent people is scary though.
AI is really good at concepts, not logic. But even then the performance is going to be dependant of the data it was modelled with.
You can ask for a specific symptom of pneumonia and it can answer. You can also ask for a summary of pneumonia, as someone has most likely wrote one already and AI understand to use it because of the concept relevance. But if you ask it to summarize a patient information, it will split the patient information into blocks it can summarise based on what summarisation information it has in the model data. I can assure you it cannot ever have all the possibilities pretrained already.
My fear is that the models merge all kind of patient record info together as the statistical model so the ‘summaries’ will write the most likely word to come next in the phrase, so wrong information and incorrect diagnoses will be recorded into a person’s record, or that important information will be omitted.
I predict that people will be harmed or die because of missing or false information patient records. But it will be difficult for the public to find out about it because of privacy issues and the unwillingness of institutions to acknowledge it.
Drugs have to go through multiple stages of testing and trials before they’re allowed to be used on patients. But no one is doing any kind of testing on the effects of this at all, let alone controlled trial rollouts with review, before allowing general use.
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No. Absolutely not. I csnnot trust any current AI model with HIPPA compliance.
Find another doctor. I just had to fire my therapist because when I went in for this week’s appointment they were playing some jesus worship service and song. I told her that it was our last session because I no longer had trust in their offices and added that I had no faith any progress would ever be made after I was triggered waiting to see my therapist. It could have been the receptionists choice in music or someone else from their office but since they do not advertise as a faith based therapy group they should have left that shit at home or should expect more of the same from people like me.
It’s worth researching a therapist’s credentials, some states allow “pastoral counseling degrees” and so on to be a path to “mental health therapist.” You want LISW, a licensed social worker. I’m not saying there aren’t weirdos, or that your experience wouldn’t happen with a social worker… just that many folks don’t realize some therapists went to theology classes instead of psychology classes, which is a prime setup for problems.
probably better to look for a licensed psychologist/psychiatrist, or someone with a PsyD. dont really want to risk when someone isnt in the field.
I didn’t know about the theology to therapist route. My therapist herself never indicated their faith leanings, so credit due to them there. They have a Masters and are a LPC. As I mentioned before, it’s entirely possible she had nothing to do with nor endorses the music choice in the building, but tacit endorsement by not stopping it from happening is enough for me to leave.
Maybe, just maybe, let’s not play music from the loudest hate group in the USA in the lobby of the therapist office.
An AI tool does NOT prioritize privacy. It’s literally the opposite.
AI and the people pushing it are not trustworthy. They do not have your data security nor your wellbeing at heart, even if your doctor does. LLMs are inherently bad at data security and there is no way these companies can, in good faith, promise HIPPA compliance. Likely, the AI use will be on the part of the insurance company to find ways of denying your claims.
LLMs are inherently bad at data security and there is no way these companies can, in good faith, promise HIPPA compliance
This is simply false. AI sucks but it doesn’t help to lie about it.
EDIT:
Go run a local model on your own computer, and delete the context when you are done. Boom you just used an LLM in a way that maintains your data security.
So your example doesn’t prove a damn thing; the data security in that case had nothing to do with the llm…
data security in that case had nothing to do with the llm
That’s kinda my point.
This is about extracting data that was used as training data. Just don’t do that with sensitive data.
You think they won’t use this the same way? That’s adorable.
“I don’t trust companies to hold their promises” is a very different argument from:
LLMs are inherently bad at data security and there is no way these companies can, in good faith, promise HIPPA compliance
It is certainly possible to implement a secure LLM service.
I’m a therapist and I use SimplePractice for my practice. They recently added an AI note taker that is HIPAA compliant, and the consent form they suggest giving to clients sounds okay, but I read the actual privacy policy and the language used is way too vague for me to trust, so I don’t use it.
In your position, I would:
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Ask if you have to sign that, or if you can opt out. Your specific provider may be open to just not enabling the AI note taker for your profile, and they may be able to remove that form from the app for you on their end. This may not be in their control, but if they’re a good person who cares about you, they’ll make an effort to get it done anyway.
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If not, ask for a link to the actual privacy policy and see if it sounds acceptable to you. Not the practice’s Privacy Practices, not the Patient Portal privacy policy, but the actual privacy policy for the AI note taker (whoever you ask might have to do some digging to actually find it)
I can share my experience here.
I initially opted-out. I did not want a LLM in charge of summarizing something as important as a medication consultation. I’ve seen the kinds of errors it makes, the way parts of its training data make their way into your file without you having any knowledge or agency.
My provider then came back to me and said it was an error that the original form said you could opt out. Everyone had to sign it, it was HIPAA, it was nothing to worry about, etc.,
I tried explaining my reasons, but they didn’t care. I said that if they couldn’t budge, I would have to change providers. They gave me 90 days of my prescription. My primary care physician agreed to continue my prescription as long as I needed them to. And not long after, I was able to find another psychiatric provider who did not require an AI release.
Also, my primary care doctor asks if I will allow AI transcription every office visit. I feel bad that by saying no, she has to do more work typing. But I feel that the harms are too great, the risks are too much to say yes. While I have the choice, I want humans to be end-to-end responsible for what words are in my medical file, and not by pressing “yes” to agree with llm output.
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Can you ask how AI is used in the app?
I can, but in truth I don’t care. I don’t want my data being used to train AI, and I don’t want my treatment to be guided by AI.
The “fine print” you added doesn’t say the automated transcript will be used for training a model. I’d highly, highly doubt HIPAA protected clinic notes would be use for training an LLM. If they did, the clinic would go bankrupt from lawsuits.
Also, if they only use AI for automated transcription, would you feel the same instead of “AI” it were a dedicated automated transcription tool?
If you abhor all things AI, your feelings of not continuing with this clinic are valid. However, I don’t think they are using AI in ways you think they are.
I’d highly, highly doubt HIPAA protected clinic notes would be use for training an LLM
If they did, the clinic would go bankrupt from lawsuits.
for that, patients would need to be able to prove that their data was used. how would you be able to prove it?
Being disappeared for being mentally ill, trans, or gay, which conservatives would love to have rebranded as mental illness. Assuming you had a lawyer on retainer before you were disappeared, and family willing to fight for you while you languish in a concentration camp.
So ask about those two specific points.
And in the session you can (probably) go over the generated notes with your doctor to double check.
The term AI is very broad and generic, today it’s used to refer to LLMs and fancy denoisers. But AI has been around for decades in some form or another. My point is, speech transcription has been around longer than the current LLM fad, so it might not be an LLM doing your transcription. Would that allay some of your concerns?
If it were a locally ran transcription software, would a healthcare provider still be required to ask your permission to use it?
I very much hope so, because in neither case can thry guarantee that the data won’t be transferred elsewhere
It doesn’t sound like AI is being used for either. It’s just summarizing the encounter at the end as a note, and not storing any data to train on.
And to piggy back this question: what alternatives do you have and are they actually viable?
The alternative is finding a different provider. I already have a long list of offices to call. Getting a list together was the first thing I did when they notified me about rolling out this app.
It records the sessions then makes a transcript for “note taking.”
Hello, It us absolutely justified to be worried, tell your doctor you concerns, and ask your doctor questions about the use of AI. If you want some help putting together questions for your doctor lmk.
I’m involved with the development / integration of AI. From the specific text of the AI agreement, it looks like these are the AI tools you’re consenting to:
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Transcription tool: This is a speech-to-text tool. It can differentiate between speakers.
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Transcript -> clinical documentation tool. This takes the text of the transcript, interprets it, and generates clinical documentation based on it.
It does not seem like, as part of the agreement, it covers taking the clinical documentation and attempting to suggest diagnosis or care steps.
I am actually concerned by the “recording and transcript are automatically deleted” line. If your doctor reviews the generated clinical documentation vs the transcript, and misses something for whatever reason, if they are unsure about something in the future they can’t go back and reference the original audio / generated transcript to verify accuracy?
There are also concerns about how they are following HIPAA laws:
What model / service are they using?
Did they do their due diligence in deciding what service to use?
Have they looked at other cases where data companies have said they don’t persist/ sell your data and then they sold it / there was a breach of data that shouldn’t have persisted in the first place?
Do they anonymize personal information before they send it to whatever service they are using? -Note that this is not possible for transcription models, as they cannot know what text to anonymize/censor until the model generates the text. That doesn’t mean there are not HIPAA-compliant text transcription models, text transcription models can even be run locally on maybe consumer-grade devices, meaning the audio doesn’t have to be sent to a 3rd party.
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AI is an overloaded marketing term. Definitely ask which kind of AI, how it is used, how and which of your data is going to be used.
My medical provider started doing that when I last had a video conference with them, and I declined to allow the use of AI. They took no issue with that – didn’t even bring it up. It’s very unlikely that your provider will care that you declined either. I recommend saving your energy for other problems and dealing with this later in the unlikely event that they do actually make an issue of it.
out of curiosity, what platform do they use for the video conference?
Last time I talked to them, they used Zoom.
I have all sorts of anxiety surrounding AI. Most of the anxiety comes from the misuse, copyright issues and departure from critical and creative thinking. However, one of the fields I actually think it could be very useful and of great benefit is medicine.
That being said, I’d be a no as well. The way this is worded and he track record we’ve seen with privacy doesn’t fill me with much confidence. Feels like another instance off loading of thinking rather as a tool for better diagnosis.
It sounds like America from the process. The confluence of commercialization of healthcare and tools that can make it look like time and attention has been used leads to some bad places. I’d be very sceptical about any advice medical or otherwise I recieved.
The unfortunate truth is that without these tools the cost of care will be higher for health companies not using the tools. Which means bespoke human led care will be a luxury in America in the near future. I don’t think it’s a reality you are going to be able to avoid.
I would push back at every opportunity, double check all of the information you are getting, ask pointed “why this” questions, make doctors clearly communicate that they are the ones giving the recommendation. At the end of the day a good doctor with AI tools is likely to do a better job.
