"full data" machine - why??

Perhaps my situation is atypical. I get a CPAP, use it until it "dies" and then purchase a new one. Every 5-7 years I get a repeat sleep study and, if needed, adjust the pressure settings.

Over the past 20 years my pressure settings have varied only slightly. Having never had a CPAP that was data compatible I am curious as to why this community recommends getting a "full data" machine. What data are collected and who are they for?

I'm a research scientist and love data. In this case, however, I am uncertain what benefit I would get from purchasing a data-generating machine. Would I be able to get access, myself, to the data?

Can someone please enlighten me?

Sincerely,
David

Kinda' clueless for a research scientist, ain't ya ? Not everyone is blessed with constant results like you are, some are subject to wild variations in their condition and therapy. Data beats guessin' EVERY TIME.

Because life is not static and if things change it allows you to control your therapy. It only takes a few seconds to get mangled by a car, catch pneumonia, have a stroke or heart attack...

Hi David:

Sounds like you were one of the lucky ones who was correctly diagnosed and prescribed settings that work for you. Sadly, many of us didn't either "get lucky" or benefit from the great medical service you apparently got.

So, for those of us that didn't get lucky or have an effective treatment plan prescribed from the get go, data-capable machines and Sleepyhead software are great tools for monitoring our progress with first, the prescribed settings, and second, to monitor any changes we made ourselves to ensure they are in fact improving our treatment/therapy.

Just to give you my example. In October I was diagnosed with severe obstructive sleep apnea. My AHI during the study was 37, and my oxygen levels were observed dipping into the low 60's. At the follow-up titration study, they prescribed me a fixed CPAP setting of 6.0cm. I stayed on that for over a month. It dropped my average AHI into the mid-20's. Clearly, the prescribed settings were way off the mark. Fortunately, I got lucky and was given a machine that was data capable. I was able to post screen shots of my data and ask for help here.

Over the course of a couple of months, and with a great deal of help from a seasoned user here, I found that the settings I really needed were at the upper ranges of the capabilities of the machine. The best AHI I could get, at the highest settings were 4.0 to 6.0. So as it turns out, after much experimentation, it appears as if they prescribed the WRONG machine to effective treat my condition. What I actually need is a BiPap. I will be addressing that with my treating physician, but my next scheduled appt. is March 28th, and I can't get in earlier.

So, if I had gone the "traditional" route and only changed my settings at the instruction of the doctor, I would still be on my first adjustment. And most likely, still be getting a large AHI and still be miserably fatigued.

But thanks to the data-capable machine, the Sleepyhead software, and the kindness and indulgence of the seasoned CPAP/APAP/Bipap/ASV users on here, I have managed to take control of my treatment, learn a lot more about the condition, and tweak my settings to receive far better results than I ever would have on a quarterly follow-up schedule with my doctor. Heck, I have even managed to trick the machine into giving me higher pressures, which have lowered my AHI consistently below 2.0, until I can get back in to the doctor and get the machine I believe I truly need.

Hope this helps.

DPBernard wrote:Would I be able to get access, myself, to the data?

As I understand it, machines communicate data either by writing to an SD card, or by "phoning home" via a cell modem. The latter is of no use to the general public, but with the SD card, you can copy the machine's data to your computer, and then visualize it with an open-source tool called SleepyHead. There is a sticky thread above with all the info.

DPBernard wrote:I'm a research scientist and love data. In this case, however, I am uncertain what benefit I would get from purchasing a data-generating machine. Would I be able to get access, myself, to the data?

Yes. You would be able to access the data for yourself. And with that data you would know exactly how well your therapy is working. You might also get an early heads up for when a mask is beginning to wear out. You might also get a heads up on when things have changed enough to warrant a new sleep study. And if things continue to be exceptionally stable, you might be able to avoid future unneeded in-lab sleep studies.

Do you actually need access to the data? Maybe, maybe not. But around here most folks would argue that it's better to have the data and not need it than it is to need the data and not have it available.

If you feel good on a daily basis and you are sleeping well, you might find that you only look at the data now and then. But if you start feeling bad on a daily basis or your sleep starts to become less than optimal, you've got the data right there at your finger tips and you can use that data to explore whether the new problems are caused by your OSA worsening, or your developing some significant leak problems or something that is likely not related to your CPAP therapy and your OSA.

Most of us around here are leery about not having any access to the data. We liken using a non-data CPAP to a person with diabetes trying to manage their diabetes without ever checking their blood sugar level. Or a person with high blood pressure who never bothers to take their blood pressure at home. Having the data allows us to spot problems with therapy not going as well as it should before it becomes a really huge problem.

My Windows computer has been down for over a year, so I cannot use the software.
I do get pressure, leak rate, AHI, and estimated central apneas off the screen of my full data machine.
This is enough for me to maintain my own best settings.

DPBernard wrote:Over the past 20 years my pressure settings have varied only slightly.

What about your pressure needs?

What about your unintentional mask leak?

'Why' is simple - to give you the control, and ability to manage your conditions your self.
I am hoping to persuade my clinic to let me keep my data capable machine,currently on loan for 4 weeks due to increased fatigue. My brick cpap doesn't even tell me the ahi.
So although your sleep apnoea seems stable and well treated now,who knows what the future holds - i suspect i could have avoided months of fatigue if i had access to the data sooner (plus wasted drs appointments and blood tests). It will be easier for you to notice any data changes, than wait how ever long for an appointment to get someone to try and help you - which they will struggle to do without the data.
Plus, if you are a data geek,the graphs are brilliant just to look at.

Another reason is that your insurance or Medicare pays by codes and they pay the same if you get a "brick" or a Full Data machine so the DME profits from a cheaper model and you lose.

THANK YOU, all, for the excellent information and insights.

FYI, my initial sleep study was done in Canada and involved two full nights in the sleep lab with a sleep latency series between the two nights.

As long as I can access the raw data it is worth the additional expense of getting such a machine.

Lastly, I wholeheartedly agree that having accurate data would be a great asset in managing my sleep apnea!

David

DPBernard wrote:I'm a research scientist and love data. In this case, however, I am uncertain what benefit I would get from purchasing a data-generating machine.

Since you are in research, I'll give you a little slack. But, I would fire an operations manager with that attitude.

The old saying - "If you don't measure a process, you can't improve it." You also can't control a process your don't measure.

Maybe you want to have a look at some of the data that is easily available to the rest of us - https://sleep.tnet.com/resources/sleepyhead/shorganize

DPBernard wrote:Every 5-7 years I get a repeat sleep study and, if needed, adjust the pressure settings.

The additional cost of a data-capable machine compared to a "brick" and spread over the life of the machine is very small. This is true even if you are self-paying.

Now what about the cost of those sleep tests every "5-7 years"? I had one sleep test over ten years ago and expect that I will never have to have another one because I control my CPAP process with data. I'm saving on the time and co-pays of sleep tests - a significant savings.

DPBernard wrote:As long as I can access the raw data

We don't have to mess with raw data. Sleepyhead takes care of that - see the link in my previous post.

Canada makes it harder to get an auto; but data capable should be doable.
but you might have to be a pest for it.

Depends where you are here - I was given a good auto without asking (didn't even know enuf to do that) in 2006 in Halifax, but I know others aren't so lucky elsewhere.