this post was submitted on 11 Jan 2024
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submitted 10 months ago* (last edited 10 months ago) by breeze@lemdro.id to c/privacy@lemmy.ml
 

(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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[–] ItsComplicated@sh.itjust.works 8 points 10 months ago (1 children)

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 (1 children)

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) (1 children)

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.