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I was told about the cellular connection by my respiratory therapist. Mine even has an app that has achievements for proper and continuous usage. It also goes i

I was told about the cellular connection by my respiratory therapist. Mine even has an app that has achievements for proper and continuous usage. It also goes into pretty good detail about what you're screwing up if you aren't getting good mask seal. Even got a call from my therapist after two weeks following up with me about the data he received. AFAIK this is what home medical equipment seems to be moving too. My dad's external pacemaker had a base station that phoned home over cellular as well. If I wasn't wholly depended on the device I'd be very interested in poking around inside of it. I'd be very interested in learning what it's collecting, and maybe someone living in a area with laws allowing users to request their data should follow up with them.

caymanjim 5y ago
I like data. I would like to review all the metrics my medical device collects. I'd welcome an app to make it even easier to view. That's all pro-consumer. That can be done by storing data on SD cards; via a USB connection; via built-in Bluetooth or WiFi. It's an easily-solved problem, and with modern wireless networking, something that the average consumer can navigate without much trouble. Even for the most tech-unsavvy patient, a removable SD card that you can bring to your doctor is a fine solution. The problem starts when third parties are involved. Now I've got a CPAP with a cellular modem in it. Where is that data going? Who's processing it? Who are they sharing it with? What are the security precautions? Can they change settings without me knowing? At least the thing doesn't have a microphone on it too... Even beyond medical privacy, I've now got a device that reports where I am and when I'm asleep, to who-knows-who. That's a wealth of data and I have no idea who it's being shared with. I realize that my cellphone is an even better surveillance device, but I trust my cellphone provider a lot more than I trust all the companies involved in CPAP manufacture and monitoring. Google and Apple are a whole lot better at security than some medical company that outsources data management.
- Aerroon 5y ago
  >At least the thing doesn't have a microphone on it too... How do you know? If they're doing tracking where tracking isn't necessary and don't disclose the full extent of tracking under some penalty for lying, then maybe the machine does have a microphone in it? How would you know without taking it apart? It's not like the doctor or device manufacturer are trustworthy on the privacy front.
  - caymanjim 5y ago
    In my case I actually did take it apart. The LCD screen smashed to the point of unusability and I attempted to repair it (alternative was to send it away for weeks for expensive repairs). While inside, I tried to disconnect the cellular modem, but it wouldn't function like that. I didn't actually look for a microphone (I'm not that paranoid), but I'm reasonably confident there isn't one.
  - matheusmoreira 5y ago
    > It's not like the doctor [...] are trustworthy on the privacy front. That perception worries me. Medical information is confidential, it's the only reason doctors are trusted with such data. If this fundamental principle is corrupted, then nobody in healthcare can be trusted.
    - HeyLaughingBoy 5y ago
      This entire subthread is predicated on not trusting the physician/clinician/device manufacturer. If those people really can't be trusted, then I'd suggest that the posters simply never go to the doctor. I've been involved in medical device development for close to two decades. It's like pulling teeth to get data collected and sent off remotely because it raises the device manufacturing cost, increases device development cost to add those features (and yeah, security is being taken a lot more seriously these days), raises operational cost because you either need your own server farm or to pay for a HIPAA-compliant online database, there's more work to be done in developing a frontend for the clinicians to view and use the data, etc. In short, no one is adding cell data upload to a device on a whim. I remember a device I worked on a year ago that decided to avoid this although it was expected that many of the users would be in remote areasor had mobility problems. Instead the customer decided to store data on an SD card (need to record results from the patient so their therapy could be adjusted as needed) and have the clinician download it from the device (they made weekly visits) using a tablet that would then email it directly to the physican who prescribed the device. I understand that we're all losing trust, but this is getting ridiculous.
mook 5y ago
> I'd be very interested in learning what it's collecting, and maybe someone living in a area with laws allowing users to request their data should follow up with them. Depending on the model, OSCAR might support your machine: https://www.sleepfiles.com/OSCAR/ https://www.sleepfiles.com/OSCAR/ — it's been on HN before I believe.
- bmn__ 5y ago
  > it's been on HN before https://news.ycombinator.com/item?id=22685537 https://news.ycombinator.com/item?id=22685537
interestica 5y ago
You should be worried, PrivateButts, about the inevitability of smart toilets.

caymanjim 5y ago

I like data. I would like to review all the metrics my medical device collects. I'd welcome an app to make it even easier to view. That's all pro-consumer. That can be done by storing data on SD cards; via a USB connection; via built-in Bluetooth or WiFi. It's an easily-solved problem, and with modern wireless networking, something that the average consumer can navigate without much trouble. Even for the most tech-unsavvy patient, a removable SD card that you can bring to your doctor is a fine solution. The problem starts when third parties are involved. Now I've got a CPAP with a cellular modem in it. Where is that data going? Who's processing it? Who are they sharing it with? What are the security precautions? Can they change settings without me knowing? At least the thing doesn't have a microphone on it too... Even beyond medical privacy, I've now got a device that reports where I am and when I'm asleep, to who-knows-who. That's a wealth of data and I have no idea who it's being shared with. I realize that my cellphone is an even better surveillance device, but I trust my cellphone provider a lot more than I trust all the companies involved in CPAP manufacture and monitoring. Google and Apple are a whole lot better at security than some medical company that outsources data management.

Aerroon 5y ago
>At least the thing doesn't have a microphone on it too... How do you know? If they're doing tracking where tracking isn't necessary and don't disclose the full extent of tracking under some penalty for lying, then maybe the machine does have a microphone in it? How would you know without taking it apart? It's not like the doctor or device manufacturer are trustworthy on the privacy front.
- caymanjim 5y ago
  In my case I actually did take it apart. The LCD screen smashed to the point of unusability and I attempted to repair it (alternative was to send it away for weeks for expensive repairs). While inside, I tried to disconnect the cellular modem, but it wouldn't function like that. I didn't actually look for a microphone (I'm not that paranoid), but I'm reasonably confident there isn't one.
- matheusmoreira 5y ago
  > It's not like the doctor [...] are trustworthy on the privacy front. That perception worries me. Medical information is confidential, it's the only reason doctors are trusted with such data. If this fundamental principle is corrupted, then nobody in healthcare can be trusted.
  - HeyLaughingBoy 5y ago
    This entire subthread is predicated on not trusting the physician/clinician/device manufacturer. If those people really can't be trusted, then I'd suggest that the posters simply never go to the doctor. I've been involved in medical device development for close to two decades. It's like pulling teeth to get data collected and sent off remotely because it raises the device manufacturing cost, increases device development cost to add those features (and yeah, security is being taken a lot more seriously these days), raises operational cost because you either need your own server farm or to pay for a HIPAA-compliant online database, there's more work to be done in developing a frontend for the clinicians to view and use the data, etc. In short, no one is adding cell data upload to a device on a whim. I remember a device I worked on a year ago that decided to avoid this although it was expected that many of the users would be in remote areasor had mobility problems. Instead the customer decided to store data on an SD card (need to record results from the patient so their therapy could be adjusted as needed) and have the clinician download it from the device (they made weekly visits) using a tablet that would then email it directly to the physican who prescribed the device. I understand that we're all losing trust, but this is getting ridiculous.

mook 5y ago

> I'd be very interested in learning what it's collecting, and maybe someone living in a area with laws allowing users to request their data should follow up with them. Depending on the model, OSCAR might support your machine: https://www.sleepfiles.com/OSCAR/ https://www.sleepfiles.com/OSCAR/ — it's been on HN before I believe.

bmn__ 5y ago
> it's been on HN before https://news.ycombinator.com/item?id=22685537 https://news.ycombinator.com/item?id=22685537

interestica 5y ago

You should be worried, PrivateButts, about the inevitability of smart toilets.