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Medical devices and user privacy (lemdro.id)
submitted 10 months ago* (last edited 10 months ago) by breeze@lemdro.id to c/privacy@lemmy.ml
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(edit: removed redundant rants and added updates)

I recently got diagnosed with a condition (sleep apnea) which means I need to use a machine (CPAP) to have a proper sleep, probably for the rest of my life. The doctor wanted me use the device for a few months, and bring the "report" generated by the device to monitor my progress and discuss further treatment.

I thought it would be a simple task, like using a program or accessing a local network service like a printer would and download a file. However, as I consulted to the device distributors in my area... their sales pitch (disregarding the actual medical functions) were:

A) The machine is constantly connected via wi-fi or cellular to manufacturer's server, and user downloads the report via manufacturer's website or an app.

B) The machine has an SD card slot to which data is copied, but user have to bring its contents to the authorized distributor so they can convert them into a report file.

TL;DR: Very unsatisfied with either options. I never asked for this.

Update #1: For the reports, there's a program called OSCAR (www.sleepfiles.com/OSCAR/) that supports conversion of SD card data. Check device compatibility first. For sleep apnea related discussion, there is a forum (www.apneaboard.com) dedicated to it.

Update #2: From all the available brands, I'm inclined to buy a Chinese brand (Yuwell) simply because of costs alone, even if it is not supported by OSCAR. I see a lot of people recommending ResMed (which has OSCAR support) both online and offline, but the cost is prohibitively expensive for someone in my financial situation with local market prices. Still have to think about it.

Update #3: There's an asshole in the comments arguing "what's so special" about sleep related statistics being copied around. I concern was how those statistics get associated with customer identification (metadata) as distributors often do. Anyways, won't waste my time with the "got nothing to hide" type of dumbfucks.

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[-] invertedspear@lemm.ee 18 points 10 months ago

I have and use a resimed that does the phone home option. Once my doctor got what he needed I put it in airplane mode.

Distributor used the stats while I was reporting to call me and tell me I need new filters or other parts. I lol’d and bought them online for way cheaper. They stopped trying even before the doctor got all the data he needed.

Also, AFAICT it’s only data out, so I’m not worried about some exploit being delivered to the machine.

Final thought: I work in med tech. We have better security than credit agencies because we get fined more if we screw up. Personal data leaks are so common no one even cares anymore, but leaking someone’s medical info will shut a company down. You are likely safe, but ultimately never as safe as a “dumb” machine would be except they just don’t exist anymore.

Actual final thought: you will be amazed at how much better you feel every morning after actually sleeping instead of the dirty pseudo sleep you’re currently getting.

[-] breeze@lemdro.id 7 points 10 months ago

Thank you. I asked some acquaintances in health industry and received similar answers.

[-] 211@sopuli.xyz 5 points 10 months ago

I thought it was data out only too, but at my sleep apnea orientation was told (and I double checked that they really meant it) that they could also tweak settings remotely. ResMed. Always possible that they had misunderstood something too, of course.

[-] tomkatt@lemmy.world 15 points 10 months ago

Just use OSCAR to get the data locally from the SD card.

https://www.sleepfiles.com/OSCAR/

Learn more about the machine and do your own management as well. It’s very easy to get into the machine settings to control your air flow, temperature settings, and so on. Take the time to learn what the data from the machine means.

[-] breeze@lemdro.id 6 points 10 months ago

Just like the other commenter, thank you for the link. I should find one of the models available listed in there.

[-] tomkatt@lemmy.world 5 points 10 months ago

I currently use a Resmed Airsense 10 and can’t recommend it enough; best sleep I’ve ever had.

Just avoid anything by Philips Respironics. They’ve been messing around hard, class action suits and recalls and haven’t really made anyone whole from the debacle (myself included, I came out of pocket to replace my old Dreamstation).

[-] breeze@lemdro.id 3 points 10 months ago

Yes, I read about the recalls. In fact the local distributor that used to deal with Phillips had stopped doing it for the same reason. Thanks for the warning.

[-] tomkatt@lemmy.world 2 points 10 months ago* (last edited 10 months ago)

Hey, check out the resmed airsense 10 autoset card-to-cloud version. It’s a lot cheaper and has no cellular connectivity, no wireless module. I just found out about it tonight, thinking of buying one as a backup machine. Looks like it ticks all your boxes.

CPAP.com has a starter bundle for it right now for $400.

[-] 211@sopuli.xyz 6 points 10 months ago

Years ago the predecessor to Oscar didn't support BMC devices, and doesn't look like it's changed. Yuwell isn't listed either. Otherwise would be great. Maybe just don't connect one of the more established ones?

https://www.apneaboard.com/wiki/index.php/OSCAR_supported_machines

[-] Azal@pawb.social 15 points 10 months ago

Here's something tangentially related that makes it difficult to find older options, the support. In the US a piece of medical device has to be supported for 7 years. My hospital has these bladder scanners that are in quite a few departments, regular fixture in hospitals (ultrasounds). Jan 1 2024 was when our came up on the 7 year mark. To do preventative maintenance calibration required logging on their server, guess what's no longer accessible? So to stay in compliance all of us in the biomed department has to figure out how to get new ones to replace the 10 $11k each paperweights we have now.

[-] breeze@lemdro.id 2 points 10 months ago

I found some older models around my area, but are all used and not very clear on what functions are still supported. I wish companies were more open about those things.

[-] TheaoneAndOnly27@kbin.social 11 points 10 months ago

Well fuck I'm suddenly looking at my pacemaker and the little box that sends the messages to the doctor with much more suspicion now.

[-] Oneser@lemm.ee 9 points 10 months ago

As another has commented, medical devices (and especially pacemaker systems) are well regulated, such that misuse or illegal re-selling of patient health data is not worth it for most companies.

Cybersecurity is a big topic in the industry now and life-sustaining systems are scrutinised much more closely these days. I wouldnt be worried, but you can ask the company directly if you are still concerned.

[-] ItsComplicated@sh.itjust.works 8 points 10 months ago

Is there no longer an option to use the machine without the report or connection to internet?

[-] breeze@lemdro.id 9 points 10 months ago

Considering that, but the doctor needs the report so my condition can be treated in a proper way. I need to contact more distributors and see if there are any "customer privacy conscious" kind, but I'm not getting my hopes up.

[-] otter@lemmy.ca 12 points 10 months ago* (last edited 10 months ago)

I'm not familiar with the companies mentioned, but have you tried talking to the doctor or the clinic? They may be able to provide you with better guidance, or tell you about other machines that are compatible with your treatment plan. Even if they don't know about the privacy aspect, that might give you a shorter list to follow up on.

My guess (or hope) is that this is the option that the average person finds convenient, which is why the doctor recommended it. There should be other options that the doctor / clinic knows about, especially because an IOT CPAP machine is a fairly new thing.

Doctors modify treatment plans fairly often, even for things like patient comfort, and bringing this concern to their attention could also change what they recommend to future patients.

Personal thoughts unrelated to your case: This is a growing concern with healthcare technology and I think we need more attention on the harms. "Your insurance company will use it against you" is something that most people will understand.

[-] breeze@lemdro.id 4 points 10 months ago

That's right. I will email the doctor and ask if any other patients have expressed concerns about it.

[-] AtariDump@lemmy.world 7 points 10 months ago

What make/model?

It’s usually connected with a cellular modem.

You can put an SD card in the side and potentially use OSCAR to read the data with the ResMed Airsense 11.

My insurance, if in a poor cell area, would let me ship the data to them on an SD card. I had to if I didn’t want to pay full sticker price for the machine.

[-] breeze@lemdro.id 3 points 10 months ago

I was considering a BMC, but still asking providers. And thank you for the program's name - I knew there were more people like us.

[-] AtariDump@lemmy.world 4 points 10 months ago

PM me if you want more info

[-] rosco385@lemmyhub.com 5 points 10 months ago

I've used a ResMed Airsense 10 for years now, and I too have always been unhappy with its phone home features, and the way it has limited info for users so they have to go to a provider. I shouldn't have to cough up extra for an appointment to get access to all of MY data from a machine that I OWN.

I would love to find an alternative.

[-] breeze@lemdro.id 3 points 10 months ago

How have been your experiences dealing with the provider? From what I've been asking, the provider "offers" the cloud or report-generating function for the duration of device's warranty. That means acquiring used devices are out of question, at least officially speaking.

[-] JackSkellington@lemmy.world 4 points 10 months ago

Hello! I have some experience on that as a user(cpap) and as someone that checked the IT system for an health provider that used resmed.

  • it’s super late here already so I’ll in greater detail what usually happens with resmed equipment as well as what the company may be receiving in their systems
[-] breeze@lemdro.id 2 points 10 months ago

Hey there, it looks like the text got cut in the middle.

[-] neutron@thelemmy.club 3 points 10 months ago

What about rental programs, OP? You can try one for a month and see what models suit your needs.

[-] breeze@lemdro.id 3 points 10 months ago

Considered that, but I got tight budgets to run around. I want to avoid spending more than I should. But thank you.

[-] WarmSoda@lemm.ee -3 points 10 months ago

What would a hacker even do with it? They would... maybe know how often you stop breathing at night?

[-] rar@discuss.online 5 points 10 months ago

The nature of his medical condition isn't relevant here. It could be his blood pressure, heart beats, whatever that makes an insurance company charge a premium on that poor sucker.

[-] AtariDump@lemmy.world 0 points 10 months ago

It doesn’t log that data.

[-] WarmSoda@lemm.ee -5 points 10 months ago

CPAP machines only do one thing.

[-] rar@discuss.online 2 points 10 months ago

I get your message, but I was not referring to the machine. I was referring that the what kind of data logged by the machine didn't matter in the context of privacy.

[-] WarmSoda@lemm.ee -5 points 10 months ago* (last edited 10 months ago)

The kind of data logged by the machine is how often they stop breathing, and how long they sleep. That's literally all it does.

You can't be concerned about the data it transmits and also say the data it transmits doesn't matter in the context.

[-] breeze@lemdro.id 2 points 10 months ago

It's not the collected data itself that's the problem you dipshit. Don't you know that distributors often make customers sign contracts at lease or purchase for warranty and tie that customer data along with statistics? You must be fun at parties.

[-] WarmSoda@lemm.ee -4 points 10 months ago

I am fun at parties. I actually go to them. And I don't worry about things like how much my freaking CPAP machine is spying on me lmao

[-] breeze@lemdro.id 2 points 10 months ago

No sense talking to a chatbot taking things literally at face value.

[-] WarmSoda@lemm.ee -2 points 10 months ago

That's true, I agree. Not sure what that has to do with anything here but ok.

[-] breeze@lemdro.id 5 points 10 months ago

So what? I post concerns about user privacy on a privacy forum and this is what I get? A gatekeeping comment about how my concerns are overblown? Way to promote the platform.

[-] WarmSoda@lemm.ee -3 points 10 months ago

Ok. What privacy exactly are you concerned with?

this post was submitted on 11 Jan 2024
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