Sharing data with doks? Why?

[OMyMyOHellYes]

I saw another thread with reference to automajically sharing data with doktor.

Who shares data with their doktor?  Why?  Does it do you any good?

Do they even care?  I got the feeling, on the couple of occasions that I bothered to print out data, that they kinda rolled thier eyes and thought "Ain't that cute?" and politely dropped it in the bun when I wasn't looking.  All they really wanted to know, or seemed to want to know was "Do you ever use it?  How much?"  Quick note in the file and moved on...

[WSHenry]

Hi,

When I recently went if for my yearly Medicare-mandated check, and all the Doc seemed to be interested in was usage. When I asked about minimizing unintended leaks and other related topics, she had no suggestions.

I've got more useful information here than from either the Doc or ARNP.

[Fats Drywaller]

Do they even care?

I'm sure that most don't. But what you referred to is actually one of those rare cases in which a sleepydoc is competent and conscientious and stuff:

The sleep disorders clinic at Hopkins and I want to eliminate the middle man (DME) from this arrangement. They're happy with me controlling the system if need be. (I had to do that last Spring anyway.) Do you think Philips will help me with this, or am I going to have to just carry the SD card to Hopkins periodically? It would be easier if my docs there could actually see the data and communicate with me by phone concerning the data. I live several hours away.

I'm in favor of that, eliminating the DME from the loop, especially since that was after at least one boondoggle by a DME company that is yet another money-grubbing ripoff artist:

Last Spring I had an at-home sleep study done locally which showed extremely severe OSA, then had a bad experience with a DME supplier. I was astonished at how little they knew. They got pressures wrong, set me up with wrong type and size of mask, and then were unbelievably slow in correcting these issues. On top of that, the "rent" they charged under the insurance agreement was almost $300 per month with a minimum of 10 months before patient could exercise option to purchase! I could see a premium price being charged for equipment of this type if (and only if) the DME rep was capable and responsive. But 4-5 times the price? For getting the settings wrong and slow response?

Same old story, same old song & dance.

By now I'm seriously of the opinion that the local DMEs in the U.S., at least, know a good thing when they see one: the vast majority of the patients who walk through their doors are old or sick or both, and they are seen as easy pickings, so they'll be taken advantage of by the DME whenever that turns out to be feasible. If insurance pays, great; if not, then swindle the patient if possible and demand cash. (And maybe even a bank account number for auto-debiting!) The insurers do nothing to improve the situation. In a lot of cases where insurance is involved, the patients are not seriously hurt financially by the ripoffs, so they continue on and put up with the boondoggle, probably just glad to have the breathing machine and to be getting better sleep at any price. The DME varmints get away with their disgusting scams and laugh all the way to the bank.

In my case, my out-of-pocket expense was zero, but the DME experience was so unbelievably annoying and infuriating (major incompetence and repeated screw-ups by the RT) that I fired both the DME and the (somewhat affiliated) sleepydoc, bought my own machine, and said good riddance to all of that crap forever. It was worth the expense. That wouldn't work if I really needed the sleepyclinic, but for one thing I didn't (I'm glad to be average) and for another thing all the people at the clinic I went to are mentally retarded so I would have had to find another clinic anyway.

Sorry to switch topics on you, from doctors to DMEs, but in the case that you referred to, I think one goal is to disentangle those two participants, which is a Good Thing to say the least.

And some docs, even some sleepydocs, are not quacks, which may be an item for Ripley's Believe It or Not:

Interestingly, my docs down there said that they use Sleepyhead for analysis when dealing with a couple of patients who want to confer with them about results from use of that software at home. So, the Hopkins folks are not like the docs near my home who apparently have drunk too much of the local water.

[OMyMyOHellYes]

Sorry to switch topics on you, from doctors to DMEs, but in the case that you referred to, I think one goal is to disentangle those two participants, which is a Good Thing to say the least.

This thread has nothing to do with the DME.  It was intentional when I chose to start a NEW thread on a NEW topic.  One that is only related in a teeny, tiny, tangential way to the other thread.  

This thread is about doktors and their condescension towards pts.  That there other thread was a perfectly good place to talk about "disentangling" greedy DMEs from the equation.

[michael9346]

Last visit to my sleep doctor, I brought in a few Sleepyhead charts and he looked at them for all of 5 seconds, zoomed in on the AHI and stated: You're cured!! Then he said he doesn't need to see me for a year. I looked at him and told him if I am "CURED" I don't need to see him at all, and I turned around and walked out for the last time.

Mike

[Fats Drywaller]

This thread has nothing to do with the DME.  It was intentional when I chose to start a NEW thread on a NEW topic.  One that is only related in a teeny, tiny, tangential way to the other thread.  

Oh! ... Oh, that's different! ... <emily-litella>Never mind!!! </emily-litella>

So you've got my contributed little data point on your NEW topic, for your database: I don't share, because there's no reason to. The sleepydoc that I saw briefly (and then never again) would have been about as interested in a CT scan of my gallbladder.

[Walla Walla]

I don't blame a GP Doc. I don't think they get much detailed training on sleep apnea. Seems their job is just to refer to a specialist who's suppose to know what the charts mean. The real problem is most specialists aren't so special.

[SarcasticDave94]

My first pulmonary Dok was at the end of his career when I came to be under his care. He didn't get a lot right the first time, but he sure thought he had everything under control. With help from AB I gained knowledge of my apnea situation, and attempted to convey the info to the Dok. He was not interested as it went against the grain. I had to go around him to get my ASV BTW, as Dok thought BPAP would be great for me.

As for the new Dok, he's more focused on my COPD treatment. I'm OK with the situation as is, because this lets me maintain control of the ASV.

FWIW my PCP Doc would likely be one that I perceive would take interest in chart reading. He is a great Doctor, but falls into the category of deferring to the pulmonary specialist.



PS Dok Donald was given a fictional name so as not to harm the innocent.

[DaveL]

My sleep-doc-from-h-ll was only interested in proof I was compliant. Hours used divided by 4 showed I was. I got even reading his reviews on rate-my-doc.

My Father had sleep apnea. Lived to 76 undiagnosed. I remember to this day what he sounded like breathing/not breathing in his sleep. They hadn't invented cpap then.
I'm grateful for this forum and all who participate here. I finally feel I'm managing my condition (diagnosed with severe sleep apnea over 25 years ago; missed one night's treatment in all that time. I stayed up because I couldn't plug in my cpap on a ferry from Newfoundland during a north Atlantic storm.)

[foxfire]

My sleep doc is the one who told me to use Sleepyhead to look at my data instead of ResScan because it displays the flow rate, which ResScan doesn't. Whenever I see him I bring in my data card and he loads it into SH and we review the data together. He's a really great doc who feels it is his job to educate and empower his patients to change the machine settings to get optimum treatment.