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Data from machine - What the heck?

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ichoj4 +0 points · 13 days ago Original Poster

I'm working my PhD research project on Sleep Apnea. I'm trying to asses how patients are treated and how much information do they get. I wonder if you could help me answer the below questions about data on the machine. From what I've noticed on the forum there is a lot of confusion around how to get the information you need...? Can it be downloaded, from where and how etc.

  1. How do you get the data of your machine?

  2. Why do you need it? Curiosity? Insurance? Do you give it to your doctor? Or use it yourself (it seems bloody complex!)?

  3. And finally is the data you are getting enough?

Thanks heaps for help!

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Sierra +0 points · 13 days ago Sleep Innovater

How do you get the data of your machine?

Most new machines use the cell phone network to send information to the machine provider and to the machine company cloud storage (ResMed for example). The data is very limited and mainly intended to monitor and encourage compliance (with using it). The real detailed data is only stored on the machine SD card. This is an example of what is stored where with a ResMed machine.

Why do you need it? Curiosity? Insurance? Do you give it to your doctor? Or use it yourself (it seems bloody complex!)?

Those who monitor their apnea closely need the data to see how well the machine is working and if there are any opportunities for improvement. Some insurance companies use the compliance data to determine if they will take the machine away if compliance is low. No I don't give the data to my doctor. It takes quite a bit of time to review the detailed data, so I expect most doctors just want to look at the summary data. Yes, I look at my detailed data daily to see how well I am doing, what type of apnea I am having, how well my mask is working for leaks. I can also tell if I am opening my mouth in the night causing leaks. The machine will also tell you if anything out of the ordinary is happening -- like Cheyne-Stokes respiration.

And finally is the data you are getting enough?

Yes, when one uses an applications like SleepyHead you can pretty much see all the data you want. If you just use a lightweight application like MyAir, you are pretty much in the dark. But if the AHI is good, and the machine is comfortable, then perhaps that is good enough. For some PAP treatment works very well, and is easy to maintain. For others it can be difficult, and requires pretty constant monitoring..

The main reason for confusion on the part of users is that many sleep clinics try to keep the data from the user, and are not very forthcoming on how it should be set up for comfort. Some even pull the SD card out of the machine before the patient is sent home with the machine. I suspect most sleep clinic technicians do not suffer from sleep apnea and don't use a PAP machine personally. Just my opinion...

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ichoj4 +0 points · 12 days ago Original Poster

Thanks! That is very helpful and comprehensive. So Sleepyhead is the way to go if you want more info. I'm familiar with it, read some other posts about it too. Sadly not all machines are supported if I got it right and there is the "hassle" of installing it, etc. Why do you think the clinics try to keep the data from the user, shouldn't they be the ones that give it to people?

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Sierra +0 points · 12 days ago Sleep Innovater

The popular ResMed and Repironics machines are essentially all supported by SleepyHead. An informed buyer of a CPAP will make sure it is supported before they buy. There is not much hassle to install it, unless you are trying to get by with using a tablet or phone instead of a real computer.

My thoughts are that clinics make money by doing sleep studies, selling the machine, but not much in supporting the user after that. Some would prefer you come back for another sleep study, rather than just look at your data and make a change to the settings. Other clinics are not in that business, and will tell you about using SleepyHead.

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RogiBlatus +0 points · 13 days ago

I need to study up on what is provided in the data (airsense 10autoset.) I saw the sleep doc today and he reviewed my history with this machine as a summary, very briefly, and only because I asked. He and partner sold out their practices to a large hospital-chain in Atlanta and are now employees. The clinic staff sold this machine through bc/bs for > $2800.00, it’s a scam!

Like I mentioned, I need to study what the data can help me with. They had set the machine at very high pressure, this clinic’s default settings based on guesstimation? I could feel the excess pressure in my chest and as abdominal gas. Certainly was not an improvement on the s9 until I tuned it myself!

Carumba, after 10 years of using cpap machinesfaithfully, nearly every single night, I guess it’s time to what, write a wiki article after decoding the terms and meanings?

From their.iterature, the company refers to “trusted medical professionals” who receive data from the machine by default without ever specifying who or where they are, what data they receive nor how they are qualified or to be trusted. Totally opaque -vs transparent. Based on that, I don’t trust them. Is there an actual doctor with a respiratory specialyty on staff, in the building 24/7/365? Didn’t think so....

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Sierra +0 points · 13 days ago Sleep Innovater

My suggestion is to ensure you have a SD card in your machine and then download SleepyHead to view the data. Here is a link to a basic manual.

If you still have the SD card from your S9 machine it should have some data on it. It wouldn't hurt to transfer that data to SleepyHead first and then transfer the data from the newer A10 machine next. That way you will see how your old machine was set up in comparison to your new machine. The A10 can do anything the S9 could do, and if set up the same should perform the same.

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ichoj4 +0 points · 12 days ago Original Poster

Do I get it right that your data is made available by the clinic to someone who is supposedly monitoring it...? Interesting. Did you ask the clinic to give your data too? if not, how do you get it (because you said you study it, so you probably have it)?

Are the doctors open to explaining stuff in the reports when you ask? If not how did you learn what it all means?

Haha, sorry for so many questions :P your reply intrigued me, but obviously you don't need answer it all.. :D

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Biguglygremlin +0 points · 12 days ago Sleep Commentator

Hi ichoj4

I posted a response regarding data access as a new topic.

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Sierra +0 points · 12 days ago Sleep Innovater

First the easy answer. While I do not subscribe to it, ResMed offers what they call MyAir service. Each morning the basic summary data is uploaded automatically to the ResMed cloud. If you sign up for the service (no cost) you can access your own personal data which I suspect is tracked to the serial number of the machine. It is very high level stuff that is provided to mainly encourage you to keep using the device. For example you could get a poor AHI score but if you used the machine for 8 hours you would be given a very high overall score. This service is very difficult to turn off, and for some it raises privacy issues. Technically they could track from the cell service where you actually are located.

Next the more complicated. Your provider can access the data too. Whether or not they actually monitor it is something I am suspicious of, but I don't really know. I suspect because they have thousands of clients they really do not monitor results. Is there a flagging system that identifies those with bad AHI? Perhaps, but I doubt it. Second hand information but I do understand the DME system and insurance providers in the US may track compliance and take the machine away if they have paid for it, and you are not using it.

The clinic does not get the detailed data unless you as the patient bring the SD card in to them. They have software similar to SleepyHead which they can display the detailed data. Perhaps someone that is going back to their clinic on a regular basis may bring their card and ask them to look at it. However, the problem is that it takes quite a bit of time to review detailed data. I'm skeptical that it is really done much.

You have to understand there are two basic ways in which people get machines, and it varies from area to area. Some have the DME or insurance provider pay for it in a kind of a full meal deal arrangement. The cost can be in the order of $2400-2800 in addition to the cost of the sleep studies. Other people like myself without insurance can just get a prescription and buy the machine from an on line provider for $800-900. Most of these are quite clear that they provide no monitoring. The full meal deal providers should, and should answer any questions you have. Do they though....

There is lots of information and help on line if the patient wants to make the effort that will assist them in understanding the results. The basics are quite simple. The guidelines are to achieve an AHI of <5. The more difficult stuff comes in when one cannot do that. Then what do you do? And the obvious simple answer is go back to your sleep clinic that did the sleep study.

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