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!

  • Luc@lemmy.world
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    3 days ago

    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 :)

  • GreenBeanMachine@lemmy.world
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    6 days ago
    1. If your options are having a doctor that uses AI or having no doctor at all. Some doctor is better than none.

    2. 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.

  • Royy@lemmy.world
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    7 days ago

    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:

    • Transcription tool: This is a speech-to-text tool. It can differentiate between speakers.

    • 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.

  • VampirePenguin@lemmy.world
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    7 days ago

    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.

    • WolfLink@sh.itjust.works
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      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.

  • michaelmrose@lemmy.world
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    6 days ago

    AI summaries often make up details, omit what is important, and get stuff wrong. Every error may follow you forever complicating diagnosis and treatment and ultimately can harm or kill you.

  • Vex_Detrause@lemmy.ca
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    One of our doctors started using AI transcription and summary. I find it lacking substance after AI is done summarizing. You can see her thought process when she type her notes, it’s thorough but concise. The AI summary is definitely short, but it’s not about shortening, it’s about handing your note to another doctor and that doctor is able to follow through with the plan.

  • Crankley@lemmy.world
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    6 days ago

    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.

  • NotMyOldRedditName@lemmy.world
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    6 days ago

    For note taking only, id be fine IF it was all run locally with no ability to be trained on.

    Id want assurances from the Dr that they also carefully review the notes immediately after or that I get to see the notes before leaving due to the risk of hallucinations that could cause future care problems.

    They could have it visible on a screen while youre in the room with you to help you be sure its accurate.

    Edit: id care less about it being local if it wasn’t medical/legal in nature.

  • cley_faye@lemmy.world
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    7 days ago

    It depends on many things. The hard line for me would be is this running locally, on a server with the same IT management as my actual data, or on a third party servers. If the doctor either don’t know this, or can’t give adequate proof that it isn’t running on some third party servers, then all the “prioritize your privacy” aren’t worth shit.

    But that’s only the point where I give a hard no. The way it is used would also matter a lot. Is it used as a clutch for reference searching, or a full self driving decision making process that will write me a prescription in the end? This part is the same whether it’s for medical advice or for anything else: if the user is skilled enough to be able to evaluate/validate the output of the process faster than it would have taken them to do it manually, then there might be some value. Some usages fits into this. Some don’t. Summarizing large documents you did not read does not work as a safe thing, because, you’d have to read the document to check the summary. Getting the summary of a drug/sickness/whatever that you know about but need a reminder of, could be ok.

    tl;dr: it have to run in a privacy-enabled context (no third parties), it have to be used as a clutch (no skipping work), and the user have to keep is brain en mental activity alive enough to steer the system instead of being dragged by it. As things stands right now, I doubt there’s a lot of doctors that would fit all three points, but in the future, maybe.

    • brygphilomena@lemmy.dbzer0.com
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      7 days ago

      We have a BAA and our vendor attests that they are HIPAA compliant. I don’t know what or where it runs. But BAA and they promise that it’s good for PHI.

      • cley_faye@lemmy.world
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        Yeah, I stopped trusting service provider with promises the moment they came into existence. “We’re compliant with XYZ” have as much value as “We promise to not snoop, see?”. And that’s not even considering security vulnerabilities. Certifications are merely the promise that at some point, someone maybe did something right (or maybe not), and paid to be able to say so (sometimes they don’t). Not very reassuring.

        Data remains on controlled systems, and if it has to get out, it’s encrypted properly, either for cold storage, or for specific recipients. Anything below that is believing random people saying random shit, and ignoring that every time there’s a data leak somewhere people go “oops, our mistake, it won’t happen again, pinky swear”.

        And I know there’s already an incredible amount of sensitive, personal data on the loose. That’s no excuse to let this trend keep going.

  • GrayBackgroundMusic@lemmy.zip
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    7 days ago

    Your provider then reviews the content of that note to ensure its accuracy and completeness.

    You know they’re not gonna do that, in practice.

  • 𝕸𝖔𝖘𝖘@infosec.pub
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    7 days ago

    Show him the EULA for copilot (where it’s for entertaining purposes only), and tell him you’ll be going elsewhere and leaving an appropriate review.

  • Tollana1234567@lemmy.today
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    6 days ago

    i wonder if they hallucinate notes post-appointment, i notice that there have been complaints against certain providers that the “doctors” did other examinations that they dint do in-person and it appeared on their records.

  • ipkpjersi@lemmy.ml
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    Yes, because there aren’t really going to be any more doctors that aren’t using AI. AI is widespread and unavoidable. It’s definitely unfortunate but it’s true.

    I have literally seen walk-in doctors have ChatGPT on their screen, they are literally using it to look up symptoms too.