archangle wrote:
As for HIPAA protecting you, right now, I believe that Philips Respironics doesn't officially sell Encore Pro to patients. There is no approved way for a PRS1 patient to see his own airflow waveform data without having a DME and/or doctor print it out for him. All perfectly legal until someone successfully sues them to make them change the process.
And perhaps the relevant question becomes: How does one initiate such a suit? And on what grounds?
I'm not being facetious here.
After all, we are
required to
purchase these machines (usually with some assistance from our insurance) and then use them in our own homes in the privacy of our own bedrooms. I find it appalling enough that right now we are greeted with patronizing attitudes, if not out and out right scorn and lies, about the fact that we are entitled to see our own data----data that that is recorded by a machine
owned by us, not the DME or doctor's office, and data that
legally belongs to us. And add to that the industry's presumption is that we are too dumb to be able to make any sense of that data.
The idea that the data residing on a machine in my own bedroom might soon be encrypted in such a way that I would be completely unable to use it without playing significant phone tag with the DME or doc's office is outright appalling. The equivalent would be to
sell a diabetic a blood glucose monitor with an encrypted data algorithm that requires the patient to take it back to DME or doctor's office for them to download any data beyond: You did test your blood today and you should presume your glucose level was OK since you feel OK.
There are ways to protect our data once it is downloaded to the DME's or doctor's computer. That can and should be done as part of an overall, larger issue of securing
all the data on those machines. After all, the heart and soul of the argument of "What happens if a laptop with your CPAP waveforms, efficacy data, and compliance is stolen?" applies even more so to
all the other data that the DME/doc has collected on us: Rather than somebody getting a hold of my efficacy data (and doing what with it?), I'm much more worried that the thief of that laptop is much more likely to be interested in my credit card number, my insurance card number, my phone number, my address, etc., all of which is more valuable (can you say "identity theft"?) that the fact that I've got a near 100% compliance record on my CPAP/BiPAP since Sept. 2010 with AHI's consistently around 1.0 to 2.5.
But, alas, none of this will change as long as the CPAP manufacturers think of the DMEs as their customers instead of us.
And I still think that the CPAP manufacturers could learn a lot from the Scooter-chair makers, the diabetes supplies makers, blood pressure monitor makers, and many drug companies, all of whom market their equipment/drugs directly to the patient. Imagine : If the PAP manufacturers would figure out a way of running a really clever advertising campaign aimed at the large mass of folks walking around with
undiagnosed OSA and manage at the same time to reduce the substantial negative stigma that is attached to both OSA and the very idea of sleeping with a PAP machine, the number of folks being willing to get tested would go up, the number of people accepting the challenge of making this therapy work would go up, and ultimately, their profits would go up. And just what would that advertising campaign need to make use of? People in control of their OSA instead of OSA destroying their lives. And that would, naturally, include people knowing and understanding the efficacy data among many other things:
Hi, I'm RobySue and I have OSA. WIthout CPAP my AHI was 23.4 and I woke up tired and in pain and listless most days. But with the help of this marvelous S9*, my AHI stays between 1.0 and 2.0. And I've got so much more energy these days---energy to do the things that I simply wasn't able to do before, like climbing this wonderful mountain here in the background or dancing in the disco with my hubby or enthusiastically playing with my puppies in the park ..... With the voice over then saying something to the effect of, "If you wake up feeling unrefreshed most mornings, have morning headaches, excessive daytime sleepiness and fatigue, or snore, you may have OSA, ask your doctor about OSA. And if you are diagnosed with OSA, be sure to ask for a Resmed S9 machine to treat your OSA. Our machines are quiet and easy to use with features that matter most to OSA sufferers as heated humidification; the ClimateLine hose---a heated hose that provides state of the art protection from condensation; our pattened EPR system to make exhaling easy and breathing with the machine natural; full leak data so you can proactively deal with any leak issues; full efficacy data so you know your OSA is under control night after night; and a user friendly software system for fully monitoring your condition. So you can get on with the business of living your life to the fullest.
* I tried to write this for the PR System One that I now use since I really do find the PR System One BiPAP much more comfortable to sleep with night after night than I did the S9 AutoSet. But "Full leak data" just ain't there, even with Encore Viewer: I've been using the S1 for close to 10 months now. And I still have only the foggiest notion of what actually triggers a "Large Leak" and in my particular situation, "Large Leak" is all but impossible to trigger no matter how badly I'm leaking. When the DME was testing my machine to see if there was something wrong with it, they were able to "duplicate" a Large Leak that topped out at just over 80 L/min.
In actual use? In 10 months of use, I have had one large leak flagged in use: Back in June, I did have a total leak that hit 60 L/min for 2 minutes that got flagged as a Large Leak. At my range of pressure settings, my intentional leak is 20--29 L/min; so that 60 L/min figure represents an unintentional leak of somewhere between 30 and 40 L/min. Moreover, this two minute horrendus leak was in the middle of a very bad 50 minute period where the total leak rate steadily and rapidly increased from about 20 L/min (baseline) to about 50 L/min in a ten minute period, then bounced up to 60 L/min for two minutes, and then settled back in at the very elevated (for me) level of 35-45 L/min for 40 more minutes before I woke up, turned the machine off, fixed the leak and turned the machine back on. During that whole 50 minute period, there's at least 10-15 minutes where the total leak rate is at or above 45 L/min, which is 25 L/min above my normal baseline of about 20 L/min. If a similar leak had happened when I was using the S9, it looks to me like about 20--25 minutes of that nasty leak would have been over the infamous RedLine at 24 L/min for unintentional leaks, with a sizable chunk of the rest of it just below the RedLine. Not enough to trigger a visit from Mr. Red Frowny Face; but evidence in ResScan that the leak was long and significant.