I have a couple questions for you guys that track data

[Gerald]

Mike...

I look at CPAPTALK.com as a "trading-post in the wilderness".....a bunch of nice people trading ideas and information.... that helps each one of them ..... conquer something that''s trying to kill them.

We all look forward to learning from you......because you can offer info from the DME perspective. Every little bit of info helps!

Stick around...this is one hell of a swap-meet.

Gerald

[carbonman]

[quote="Mike@TibroMedical"]I am reading through this and wanted to stop and clarify something, I was in no way trying to make you guys think you shouldn't be tracking your data in fact I think it's great that you guys take that into your own hands. I was curious from a stand point of a provider that has never had a pt even mention the thought of learning and understanding what it all means and I was simply intrigued.[/quote]

WOW.....WOW.....I find this outrageous.

Most RT's have no interest in learning, because it's not their LIFE.

That machine and that data ARE my life.

....and the last thing I want is an alleged sleep doc or RT,
messing w/my machine. YIKES!

I am my own best therapist.....thanks to the support
and education from this group.

[OldLincoln]

Mike, Many of us here have been damaged by prior experience as reflected in attitudes. Not just DME's but MD's that have "partnered" with them and find it easier to do what they are told than make waves. In my case after getting the wrong machine and no relief from either DME or MD, I found this site and started doing my own research, built a case for the machine I need and presented it to the MD. He then understood and wrote a script for the right machine and all is well.

If I hadn't found this site I wouldn't have done the research, not gotten the right machine and would have abandoned therapy. My MD is a good man but felt his hands were tied because he bought into what the "bad" DME told him. Now he is a better doc and I have switched to what I believe is a really good DME.

The power of this site and a dominant practice is to empower patients who are often abused and frustrated to stand up for their therapy and persist in getting the right equipment and in achieving excellent results. Given your experience with a good DME you have a lot to contribute to the discussions and are very welcome.

[kteague]

Mike,

Thanks for coming back with some answers, and I look forward to reading and learning more. Having treatment data in addition to compliance data makes a world of difference about the whole program in my eyes. (What are the cliches about presentation is everything and the importance of first impressions?) But I'm glad to take a second look (hope you are too). With this additional information, I can see it's usefulness to some end users. I'm guessing the insurances allow billing charges for non office patient care.

Of your clients who have EncoreAnywhere, have you often had occasion to download full data for a doctor's use?

Ok, I'm done asking questions. Just trying to get a clearer picture. Glad you weren't easily run off.

Kathy

[JeffH]

From the Encoreanywhere.com web site...


EncoreAnywhere™ is a complete solution for gathering and sharing patients' compliance data over the web. Managing your patients' compliance data has never been so easy!

To learn more about how your organization can benefit from EncoreAnywhere™, please send an e-mail to encoreanywhere@respironics.com

Proof once again that what the DME's Doc's, and Insurance companies really care about is compliance data. They could care less about how your therapy is going.

FWIW

[JimIllinois]

It is interesting to note the different levels of attention to the data. I see a lot of posts indicating people check nearly every day for minor changes and think hard about how to fix them. I think of that as attending to the last 3% of problems - they are 97% good, but strive for 100%.

I, on the other hand, am just so happy to get a decent nights sleep that I am pretty satisfied with my 90% of perfection. I look at my data once every two to three weeks.

Yes, I see how long it takes to ramp up from my typical 10 or 12 to as high as 15 or 16 when needed. I could fix that by increasing my min setting.

Yes, I see the occasional leaks and I see how the pressure ramps up high as a result (causing even more leaks), and I see how long it takes to get back down to a real treatment level. I could try to stop that by working on mask fixes.

My AHI is not as good as it could be, but it's a ton better than it was. My wife can sleep all night alongside me, I have no drowsiness incidents, and I suppose my heart and circulatory system thank me.

But back to the topic, while I don't obsess over the numbers, I do feel better when I look at them and see nothing drastic is happening despite diverging from the doctor's orders. That's why I am happy to have the reader and software. It wouldn't be possible if I let the doctor and technician do it all.

- Jim

[Snorebert]

Mike,
First of all, welcome. My story is so much like the others on this thread it would be redundant to tell it. Suffice it to say that if the system was working well, you wouldn't see 50% of CPAP patients dropping out, there would be no need for compliance monitoring as patients would be sleeping well with properly set machines and comfortable leak-free masks, and this forum would never exist.

But mamma never told me that life would be fair. So I pay for my data-capable APAP and some masks and other equipment out of pocket. I monitor my progress and I fight to get my life back because the system has taught me not to trust it. And I find that this forum of complete strangers is full of people who care more about my progress that anyone in the whole sleep treatment game.

-Clark

PS - I hope that not only do you stick around but also poke into the years of stories in the pages of this forum. BTW - when did you last spend a full night experiencing a CPAP during a sleep study? You should do it every once in a while.

[dels]

I dont like any of this tracking. I am not a dog on a leash and I resent every thing about me uploaded and looked at to the degree that it is. Patients shoyuld be taught as with many other medical conditions to monitor them selves and report. This whole issue of complience, well, if you dont comply, then you dont benifit, but it feels very big brother to me these smart cards. This is why I put it in to make the setting, and take it out.

[Mike@TibroMedical]

From the Encoreanywhere.com web site...


EncoreAnywhere™ is a complete solution for gathering and sharing patients' compliance data over the web. Managing your patients' compliance data has never been so easy!

To learn more about how your organization can benefit from EncoreAnywhere™, please send an e-mail to encoreanywhere@respironics.com

Proof once again that what the DME's Doc's, and Insurance companies really care about is compliance data. They could care less about how your therapy is going.

FWIW

The compliance Data that medicare is requiring, is generated from how your therapy is going.... I know that the DME's and Doc's are the BIG BAD to you but they are paying for equipment that they want to make sure is benefiting the Pt. CMS guide lines state "Provider must show compliance and that the Pt's is benefiting from the PAP" which means even if you use it every night if your data doesn't show you benefiting in a report they wont cover it. which means it's not just compliance. The term "Compliance Data" used for encoreanywhere just tells you that it does both Data and compliance tracking.

[ozij]

If that were true, machines that only tracked compliance would no longer be handed out by DME's since they don't show that those hours were benficial.

However, they are.

O.

[DreamStalker]

... snip ...

which means even if you use it every night if your data doesn't show you benefiting in a report they wont cover it. which means it's not just compliance.

... snip

Which means that it is just a tool for the insurance companies to boost their profits by finding a reason not to cover the treatment ...

[Wulfman]

... snip ...

which means even if you use it every night if your data doesn't show you benefiting in a report they wont cover it. which means it's not just compliance.

... snip

Which means that it is just a tool for the insurance companies to boost their profits by finding a reason not to cover the treatment ...

What's their criteria for determining whether the patient is "benefiting"?
If they're USING it and they're NOT benefiting, whose fault is THAT? The doctor? DME? Patient?
Sounds pretty ambiguous to me.
If the patient is using the therapy (because they were diagnosed with OSA) and their therapy is substandard, what do they do then.....take them off the machine they need?

DreamStalker has a good point here.

Den

[5aces]

Odd reactions people have to data that 'tracks' you.

Knew a guy that bought a new Audi S8 and it came standard with the satellite tracker.

He paid thousands to have it removed from his new car,Big Brother paranoia perhaps?

Some people just do not want to be watched over...yet there are those who willing sign up for 'live' people tracker technology through the GPS in their cellphone-go figure.

[Velbor]

I have had generally good rapport with my clinicians and DME's. Largely because I am able to use them as "consultants," because I know my data, I tell them my data, I tell them what I believe it means and what I think should be done about it, and then LISTEN to their knowledge-based and experience-based feedback. I insist on good science and good statistics and good facts, as the basis of my medical care. I use consultants, but the care BELONGS to me.

I find that attention to my own data - daily - is a strong motivator for me; it keeps me involved and interested.

I can also understand why clinicians aren't generally interested in looking at nightly data. BORING on the order of looking at photos of someone else's children or vacation. Even looking at my own detail data for any one night is of limited interest to me beyond the next morning; like a newspaper, it gets old very quickly.

Any particular individual night tells me almost NOTHING that is useful. I am a living being, and no two nights are the same. I am fortunate in having the background and the time and the ability to accumulate and organize data over LONG timeframes (typically about 6 weeks or more at a time), allowing me to compare and contrast different masks, different machine modes, different pressure settings. (Knowing how variable my own data can be, the notion that one short night of PSG will provide anything more than a guess as to a starting point for therapy reflects an absurd level of clinical hubris and statistical ignorance.)

I shudder at descriptions of "tweaking" based on only a few nights experience. Some of what is posted on this board frightens me, in that advice is based on limited anecdotal experience often being presented by amateurs as factual knowledge. Still, it's generally harmless, since ANY reasonable xPAP use is safer and better than NO use, and it is generally no worse than what we are told to do by clueless "professionals". And in the long run, the diversity of opinion presented is, if not self-correcting, at least self-cancelling. Assuming that even a novice will soon recognize that not all voices here are equal (some are more equal than others!), there is little real danger, and very much good, available here. One soon comes to recognize the wisdom, and the shortcomings, of individual posters.

The best part is that everyone who posts here, and who reads what is posted, does so voluntarily. The folks here are MOTIVATED. The folks here CARE. Some (of us) may need to "get a life," but this board nonetheless stands as one of the closest things to an "open egalitarian society" of INVOLVED individuals I have seen anywhere. (And this board's sponsor deserves much appreciation for keeping it that way.)

A blessing on your head, Velbor

[DreamStalker]

A very accurate perspective Velbor.