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The CPAP Customer --- It's Not Who You Think

Quick: who is the CPAP customer? The one who spends each night hooked up to a hose and a machine to manage a serious health condition, right? Wrong. Or at least that is what the CEO of Philips Respironics would have us believe. In an email sent to clinicians and other industry insiders, the CEO, Donald Spence, comforted DMEs and clinicians worried that a new web-based data monitoring tool, Encore Anywhere, would work an end-run around their control of patient data, and be available, to, heaven forbid.... patients, the very people whose health and well being actually depend on it! Not to fear, Mr./Ms. DME -- Mr. Spence writes that "while it's true that Philips offers consumer products, our core products in sleep and home respiratory are prescribed medical devices that require specialized care to help ensure effective therapy and compliance."

We at SleepGuide are staunch advocates of patients' right to access their CPAP data. We believe that the product titans like Respironics and ResMed do patients a disservice when they suppress our access to data about our therapy. Furthermore, and just as important from a business perspective, we believe they ultimately harm themselves, DMEs, sleep labs, clinicians and sleep physicians when they suppress patient access to this data. The reason is that the data shows patients in a very direct, meaningful way the upside to wearing a cumbersome device to bed every night. Also, if something is wrong, a patient can work with clinicians to switch things up, and make the therapy more effective and comfortable. For an industry that sees roughly half of its potential revenue evaporate due to non-compliance, giving access to data isn't only the right thing to do. It's the lucrative thing to do.

If Respironics or others would like to defend the current Respironics position, we would like to hear from them about why it's defensible.

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Comment by Mary Z on February 23, 2012 at 9:40am

This would make more sense if doctors were willing to step up to the plate to meet their patient needs.  One of our greatest needs is knowledge and education. Another need is for physicians or their designees to adequately address our concerns and problems with therapy.  There are small adjustments that can be made to make therapy more comfortable.  It's discouraging to read that sometimes the very people we count on to optimize our therapy frequently know less than we know.  Education, knowledge, and experience are indispensable if the sleep industry expects us to depend on them to make our therapy as comfortable as possible and encourage compliance.

I am lucky to have a great sleep doctor and a DME whose interest is keeping me happy and comfortable with my machine.  I work with the Respiratory Devision of a home care network- they not only provide my machine and supplies, but techs with the expertise to keep things running smoothly.  This is good business- keeps me coming back- and good for me to be able to rely on them.

My sleep doc was very surprised when I told him there was nothing I did not know how to adjust on my machine, but not unhappy.

Comment by Judy on March 21, 2009 at 4:51pm
Unfortunately, the FDA (in the US) dictates who Respironics and the other manufacturers' "customers" are - and you are right, it isn't the end users, the patients. You are placing the blame on the wrong shoulders. Blame the medical profession, blame our idiots in Washington, blame the FDA but don't waste your time and energy blaming the manufacturers.

Resmed developed and provided the advanced patient menu for their xPAPs, Respironics produces the patient version of their software, EncoreViewer. Puritan Bennett (now Covidien) has made their software, Silverlining (and recently, Sandman) available at a reasonable cost to their users for quite some time. The laws in the USA are VERY DIFFERENT from other countries regarding our xPAPs. So take your beef up w/the FDA and your government legislators, the true guilty culprits.
Comment by sleepycarol on February 8, 2009 at 10:02am
I think the key is getting ALL cpap users DATA-CAPABLE machines. Claire, if I read your profile correctly you have a Resmed 7 Lightweight. It is an entry level machine and doesn't provide any detailed data but compliance, meaning the number of days and hours you have used your machine. So even if the data was available via the web for download, your machine's information wouldn't provide any useful information on your treatment.

I feel all users should be given data capable machines that provide more than just compliance numbers. As far as being able to access the information from the web, I am unsure how that will drive the economics of the cost of the machines since those machines will cost more to produce, although Resmed does have the technology to do this on some of their machines, but I am unfamiliar with their machines. At the present time, data capable machines are available that provide detail data, via the data that is downloaded into the computer by a card reader and software -- I would think that the blind and visually impaired would have access to this same information as long as they purchased the card reader and software just like the rest of us. In my opinion, the blind and visually impaired have the same options that us sighted users have at the present time.
Comment by Claire A. Murray on February 8, 2009 at 8:55am
My comment is directed at the statement that some machines permit the user to view data directly on the machine, thus web downloadable data isn't necessary. THIS IS Oh So Wrong! The visually impaired or blind user of a device CANNOT view the data on the machine but CAN download and view the data from the web.

Thus, it is imperative that all users be given equal access to the data and that means providing it in a manner that is viewable by ALL users.

enough said?
Comment by Daniel on January 21, 2009 at 3:24pm
I have several points to make:
- Numeric reports for diabetics have real meaning and patients can easily be taught how to interpret those numbers. AHI and Leak statistics are attempts to quantify fuzzier concepts and in my opinion require greater expertise and experience than most providers are willing to share with patients.

- I became a DME provider specifically for sleep apnea because I too am a hosehead. When I got my first CPAP, I had a totally different career - one that placed a very high value on good customer service. The provider (it has five letters in the name...) basically handed me a machine and a mask and said good luck. I struggled for more than three months before I found out that alternative masks even existed. With the dot com implosion of 2001, I had to change careers, and I settled on sleep disorders because I knew there had to be a better way to do things.

- I am proud to say that if you live in the San Francisco area and call ResMed's 800 number asking for a knowledgeable provider of their equipment, you will be directed to my company, SomniHealth. I personally believe their ResScan software is a little tougher to interpret and use than Respironics, but it has just as much, if not more good information in there. I work with one sleep lab that insists that I dispense Respironics equipment because their doctors like seeing only one type of report. I don't argue with them because at least the doctors are reading the reports, and asking for regular updates from me, which I applaud.

- Three cheers to Angela D's comments. Right on target!
Comment by Angela D. on January 21, 2009 at 11:17am
I have been in the sleep profession for over a decade and it's all too clear that the lack of "upfront" patient education and care is one of the biggest obstacles in providing long term quality care. Too many patients do not know enough about their diagnosis or their equipment. The downloads are very helpful indeed, as well as patient feedback, but all equipment is not created equally. The different manufacturers use different technology to count, register, flag, track and treat apnea events.
The sleep professionals sending the prescriptions into these DME providers, should track and verify that the patients are educated and that the service from the DME was of high standards. Someone has to hold the DME responsible for having properly trained RTs and great up front education and patient care. If the service or training is poor, the MD needs to stop sending that company prescriptions until the problem is resolved and they have proved worthy of performing PAP set ups. Get them where it hurts($$$), so to speak...
Patients need to complain to the Dr. that prescribed the CPAP. The staff will take role of liason between DME & pt. It is also easier for the MDs to make sure that the regional sales reps. from the manufacturers, have properly trained the DMEs on the types of equipment that they want to prescribe. Eventually the good DMEs will rise above the bad DMEs and hopefully we can save future CPAP users from the frustration and lack of knowledge so many others have faced in the past. (if the Dr. don't want to listen, staff won't help???, you need to change doctors!!)
Comment by Dave D. on January 21, 2009 at 10:07am
As with anything, for patients that can make use of this data and want it, it should be available to them. One must keep in mind that the simple act of being involved in this discussion on this website sets us apart from the masses that use (or are supposed to use) PAP and do not have a clue. Not that we are any smarter or capable, but that we are interested and concerned about or health. The vast majority do not have that insight.
Comment by Judy on January 20, 2009 at 11:49pm
Daniel Levy,

I realize I've come down pretty heavy on your profession and I certainly didn't mean to sound like I was aiming my comments at you personally. I've had the misfortune to first encounter a less than desirable or helpful and less than truthful DME RT and then a heck of a nice DME RT who doesn't know the Resmeds or even want to know or try to explain the data from the ResScan software.

I would DEARLY love to have a DME RT such as yourself who IS willing to interpret the data downloads rather than have to struggle thru trying to interpret the data for myself!! I certainly wish you were in my neck of the woods and took my insurance! I'd be knocking at your door, except I get the impression that you most likely don't have the ResScan software and the experience w/the Resmed devices either??? *sigh*
Comment by Judy on January 20, 2009 at 10:13pm
Oh *sigh*

"the data report doesn't include any interpretation. Without being thoroughly trained in what the data means, it can easily be misunderstood."

And apnea patients are not as intelligent and capable as diabetics. We are a dumb and ignorant lot. HORSEPUCKIES! Yoo hoo! "Apneans" are every bit as capable of being educated as the diabetics!!!

"That is supposed to be the responsibility of the DME provider." Yep, it sure is and it is unfortunate that too many fail miserably in that respect. Not to say that there aren't good local DME providers out there - but there sure aren't enough of them. The CPAP failure rate is PROOF of that!

CPAP therapy is left to the WRONG HANDS. DME providers aren't expected to educate and train the diabetics on monitoring and adjusting their therapy are they? Who DOES educate and train the diabetics in monitoring and adjusting their therapy? Where is that equivalent for the CPAP therapy patient?
Comment by sleepycarol on January 20, 2009 at 3:07pm
In my opinion it IS about the patient taking responsibility for their treatment!! Patients should be educated about their treatment -- after all who has the most at stake in their therapy -- certainly not the DME.

My DME (and those in my rural area) do NOT know squat about cpap equipment nor do they care.

When I picked up my first machine the RT (a trained registered respiratory therapist) gave me an M series PLUS machine and had the nerve to argue with me that it provides useful data including events that happen during the night. I was also told it was NOT in my best interest to get involved with MY therapy!!! Guess what I changed DME's.

For those wanting to know -- THE PLUS M series only provides compliance data -- nothing useful about that except for the insurance companies and the DME's.

I CAN interpret MY OWN numbers as I am not stupid and have learned through much studying what the numbers mean and why they are important to my health. Yes, I have done the "horrible deed" and changed my own pressure. It was only by tracking my numbers did I realize that my therapy wasn't working for me -- my doctor is fully aware of this change and is okay with it -- she knows I don't do it blind and I have the knowledge and information to do it. She has stated I probably know more about sleep apnea than she does as I have read and read and studied about sleep apnea, the various machines, masks, what the data means, what to do with the data, etc. After it is MY health on the line.

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