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Thread: Is the electronic data recorded on a CPAP or BPAP

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    Is the electronic data recorded on a CPAP or BPAP

    machine that a person OWNS and uses nightly for their sleep apnea, considered a "medical record" of the machine's owner/user? TIA,

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    My CPAP records every night on a memory card but no one reads it. It is no connected to any network.

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    Sleep Data Privacy Concerns: How to Keep Your Information Safe

    IMO, yes to your specific question. It is a medical record. Now ... who has access, or improper access, to that record?

    Was your insurance involved in paying for your purchase? Have you signed or implied consent in any terms and conditions of use?

    Too few facts to be specific to your case. Reading the link may lead you to your own conclusion. I imagine it also varies from state to state. Have you asked someone in your States AG office?
    Last edited by dinosaur; 12-03-2021 at 02:13 PM.

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    Quote Originally Posted by dinosaur View Post
    Sleep Data Privacy Concerns: How to Keep Your Information Safe

    IMO, yes to your specific question. It is a medical record. Now ... who has access, or improper access, to that record?

    Was your insurance involved in paying for your purchase? Have you signed or implied consent in any terms and conditions of use?

    Too few facts to be specific to your case. Reading the link may lead you to your own conclusion. I imagine it also varies from state to state. Have you asked someone in your States AG office?

    Thanks for the info you have posted for me. My question in my OP I know was vague, but I made the mistake of posting it while doing my laundry. So, I could not take the time to post my reasoning for my OP.

    I will return when all my whitie tighties are done and post the rather lengthy reason, for my OP.

    Thanks Dino,

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    Quote Originally Posted by gregonejeep View Post
    machine that a person OWNS and uses nightly for their sleep apnea, considered a "medical record" of the machine's owner/user? TIA,
    Good question.

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    yes.My doctor knew when I used it or didn't use it.You have to remove the chip.
    ​​​...and the people bowed and prayed to the neon god they made.

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    Just for a FYI, I am not asking the question in my OP for any "nefarious" reasons. I just know that whenever I call to get an appointment with my ENT doctor about my sleep apnea, the office person tells me to be sure to bring the SIM card out of my BIPAP machine with me.

    And when I get to the doc's office, the person at the reception window asks for my BIPAP's SIM card. And that he/she will give it back to me, whenever my visit with the doc is done and I am leaving.

    I guess they are scanning my BIPAP machine's SIM card into their computer database, just to see the data that is being recorded by the machine that is pushing the air in to our snouts at night.

    So apparently our CPAP/BIPAP machines SIM cards do become a documented medical record, for those of us that use these "assisted breathing" machines.

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    I am glad you brought up the subject I was thinking the same thing. When I got the machine, they did monitor my use, through wi-fi so I am not sure now how I would know if they actually quit. The reason I wonder if there is a recall for CPAP, BiPAP and respirators from Respironics.

    The recall was announced 6/14/2021, I was informed about the recall 11/8. The recall at first said to stop using the machine, yesterday I got a letter saying to consult your doctor before stopping.

    I contacted my doctor and she said to stop cold turkey and quit using it. All I had to do was prop myself up in bed, which hurt my back, but I suppose I could get used to it. I at first contacted the supplier which was nice enough to send a biological filter and hose to trap particles they say is coming from the insulation inside the machine. My doctor told me not to use the filter because it effects the pressure in the machine. So, the only alternative given is cold turkey. So, I called the company and they said they were working on the problem, and it may be 21 months before it is resolved. Which tells me I don't need the machine, except not using it does make a difference in sleep quality.

    So, I ask if can I just report my machine broken and get another? Nope, Medicare only allows replacement every 5 years. My doctor did say I can go online and buy one outright.
    On that note, my sleep doctor doesn't seem to care enough to monitor my use. I have not gone to seen her in over 2 years.
    I called Medicare, no help. The supplier was a little help although I don't know what they could do.

    After two nights of not using, it I decided to go ahead and use the one I have. After all I used it for almost 5 months before I found out about the recall.

    After registering the machine with the company, I do get contacted about a class action lawsuit. Which, thankfully, I am not eligible to join because I have not had a diagnosed problem and the problems, they list I don't want.

    Obviously the only one that can possibly fix this is Medicare. They could wave the 5 years and make the company pay for the replacement cost. Or they could offer some sort of alternative, like renting a machine. Something. I would contact my congressman, but I think I have burned that bridge long ago.

    Getting back to the OP, the reason I now wonder about them monitoring is because I was told by my doctor I shouldn't use it, but I am.

    Sorry for the length of this post, I type pretty fast and obviously if I don't care about punctuation or spelling, I go much faster.

    If you have a Respironics machine you can go to Philips.com/src-update
    Last edited by Freewill; 12-04-2021 at 08:11 AM.
    Let's Go Brandon!!

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    FW, I got the recall notice about two months ago now from Philips, on my now just three-year-old Dream Station BIPAP machine. And five days ago, I received a new BIPAP unit just like my old machine, minus the recall defect of course.

    The company that sent me the new machine left return address labels/free shipping in the box, just so that I can ship my old unit back to them at no cost to me. Therefore IMO, Philips has done a great job for me at least, on their recall.

    I took my new machine to the store 3 days ago where I got my old unit, just to have the RT to do the "settings" on it, to match my old machine that I gave her for comparison. But when I used the new machine that night, I woke up to find that she did not unlock a VERY important feature for me the machine has on it. It is titled " My Info" on the machine's menu selection.

    Because ever since I got my new BIPAP unit 3 years ago when I awake in the morning, I open the "My Info" menu on the machine. I then record into my logbook the 4 data points below that IMO, are VERY important for the machine user to know. They are,

    1. Therapy Hours = the record of hours the machine was ran for that particular sleep cycle

    2. AHI indices = the values of how many Apnea/Hypopnea events occurred per that sleep cycle

    3. Mask Fit = measures in %, the loss of the pumped air into the user's lungs. A 100% reading is best to have of course. A 80% reading means that 20% of the pump's air was lost, a 70 % reading means 30% of the pump air was lost. The user now knowing this, should find out if they have a poor face mask/pillow fitting seal, a leaking air hose/fitting, etc.

    4. Period Breathing = the most important of all the data points recorded IMO. As this shows in % how often the user stopped breathing during any given one-hour period of machine usage. A reading of "0" is best, with 1-2 % of PB's a night being acceptable for heathy people. BUT a constant reading of 2 % PB's is NOT good for anyone, especially for those that have any heart problems.

    5. Number five is not one of the machines data points, but my own. = I weigh myself every morning and put my weight in my BIPAP data logbook. Just in order to monitor any weight gain, which lets me know to back off the munchies I love. As with me just losing 15 pounds this year, doing so took my nightly PB readings from a steady 1-2 % down to a steady "0" % reading of PB episodes per night.

    With my knowing the 4 data points above are recorded for my night's sleep in my logbook, I can read for myself just how well or not, that both I and the machine are doing our jobs. As I fix any issues that I read in the 4 data points myself that I can. And I use the ones that I cannot fix, to be the catalyst for making a visit to my ENT Doc.

    As IMO, these very same four "data point's" are what the ENT docs are reading on our air pumps SIM cards to analyze how well or not, that we are doing with our assisted breathing machines. In retrospect now, I probably should not even post this post. Because the 4 data points above that I get from my machines "My Info" menu daily, has IMO resulted in me not needing to visit my ENT doc now for 3 years.

    P.S. I just hope FW, that no one from a CPAP/BIPAP manufacturing company, sales company or ENT doc reads my post here. As they may get a message out to the CPAP/BIPAP sales vendors and RT staff, to NOT unlock the "My Info" machines feature whenever they are setting up a patient's machine for them. As no one wants to lose potential revenue. All JMO

    Disclaimer: All of my above post is just MY personal experience and opinion. I do not have any medical training on this topic in the OP. Therefore, my post above should and must NOT be taken as medical advice, to anyone that reads it!
    Last edited by gregonejeep; 12-04-2021 at 11:33 AM.

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    Quote Originally Posted by gregonejeep View Post
    FW, I got the recall notice about two months ago now from Philips, on my now just three-year-old Dream Station BIPAP machine. And five days ago, I received a new BIPAP unit just like my old machine, minus the recall defect of course.

    The company that sent me the new machine left return address labels/free shipping in the box, just so that I can ship my old unit back to them at no cost to me. Therefore IMO, Philips has done a great job for me at least, on their recall.

    I took my new machine to the store 3 days ago where I got my old unit, just to have the RT to do the "settings" on it, to match my old machine that I gave her for comparison. But when I used the new machine that night, I woke up to find that she did not unlock a VERY important feature for me the machine has on it. It is titled " My Info" on the machine's menu selection.

    Because ever since I got my new BIPAP unit 3 years ago when I awake in the morning, I open the "My Info" menu on the machine. I then record into my logbook the 4 data points below that IMO, are VERY important for the machine user to know. They are,

    1. Therapy Hours = the record of hours the machine was ran for that particular sleep cycle

    2. AHI indices = the values of how many Apnea/Hypopnea events occurred per that sleep cycle

    3. Mask Fit = measures in %, the loss of the pumped air into the user's lungs. A 100% reading is best to have of course. A 80% reading means that 20% of the pump's air was lost, a 70 % reading means 30% of the pump air was lost. The user now knowing this, should find out if they have a poor face mask/pillow fitting seal, a leaking air hose/fitting, etc.

    4. Period Breathing = the most important of all the data points recorded IMO. As this shows in % how often the user stopped breathing during any given one-hour period of machine usage. A reading of "0" is best, with 1-2 % of PB's a night being acceptable for heathy people. BUT a constant reading of 2 % PB's is NOT good for anyone, especially for those that have any heart problems.

    5. Number five is not one of the machines data points, but my own. = I weigh myself every morning and put my weight in my BIPAP data logbook. Just in order to monitor any weight gain, which lets me know to back off the munchies I love. As with me just losing 15 pounds this year, doing so took my nightly PB readings from a steady 1-2 % down to a steady "0" % reading of PB episodes per night.

    With my knowing the 4 data points above are recorded for my night's sleep in my logbook, I can read for myself just how well or not, that both I and the machine are doing our jobs. As I fix any issues that I read in the 4 data points myself that I can. And I use the ones that I cannot fix, to be the catalyst for making a visit to my ENT Doc.

    As IMO, these very same four "data point's" are what the ENT docs are reading on our air pumps SIM cards to analyze how well or not, that we are doing with our assisted breathing machines. In retrospect now, I probably should not even post this post. Because the 4 data points above that I get from my machines "My Info" menu daily, has IMO resulted in me not needing to visit my ENT doc now for 3 years.

    P.S. I just hope FW, that no one from a CPAP/BIPAP manufacturing company, sales company or ENT doc reads my post here. As they may get a message out to the CPAP/BIPAP sales vendors and RT staff, to NOT unlock the "My Info" machines feature whenever they are setting up a patient's machine for them. As no one wants to lose potential revenue. All JMO

    Disclaimer: All of my above post is just MY personal experience and opinion. I do not have any medical training on this topic in the OP. Therefore, my post above should and must NOT be taken as medical advice, to anyone that reads it!
    I don't think I need to worry about my pulmonologist checking stats, I get almost no support from her. She has never once suggested I come in to see her. Which is OK with me but does seem strange.

    As for the stats, I'll have to look and see what I can get out of my machine. I am not sure if anyone would care if we had access, or at least if I had access.

    BTW, I get all my medical advice from social media.
    Last edited by Freewill; 12-04-2021 at 02:05 PM.
    Let's Go Brandon!!

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