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Steven B. Ronsen updated their profile
Sep 15, 2018

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 Daniel on January 20, 2009 at 1:42pm
Sometimes patients forget that it isn't about the numbers - it's all about how you feel when you wake up in the morning, It's about not falling asleep while your driving. The apnea/hypopnea index is an artifical construct that is an attempt to quantify the severity of the disorder. However, some people who have been classified with "mild" sleep apnea (AHI between 5 and 15) present symptoms that are just as devastating (or more so) than people who have "severe" sleep apnea with an AHI of 60 events per hour. The numbers simply don't tell the whole story.

In addition, the data report doesn't include any interpretation. Without being thoroughly trained in what the data means, it can easily be misunderstood. This leads to long customer service calls with Respironics, ResMed, the DME provider, or the doctor. As a DME provider, I am thrilled to talk to my patients about their data, and I rarely charge anything for a data download and interpretation (note that it isn't just for a download - it's for the interpretation). But ResMed and Respironics really don't want to speak to patients directly, nor should they. That is supposed to be the responsibility of the DME provider.
Comment by sleepycarol on January 4, 2009 at 11:22am
If you are a diabetic you are encouraged to take charge of your therapy. Numbers and data are not kept from the patient and the patient is taught how to monitor their blood sugar etc.

I feel that cpap patients have the same rights and should be encouraged to take an active role in their therapy!!
That means giving patients data capable machines, the software, and the knowledge to make therapy successful!!
Comment by Mike on December 8, 2008 at 2:21pm
No doubt there is strong pressure to keep the data from patients, and that the manufacturers have taken some positive steps in the right direction. But the LCD/smart card is difficult for some to use. Here we have the next generation of data availability --- user-friendly, detailed compliance data accessible over the Internet, an interface that would be ideal for many patients. Why not make it available to them?
Comment by Judy on December 8, 2008 at 2:14pm
But Resmed has offered patients access to their nightly data via the LCD screen of their xPAP via the detailed/advanced patient menu for several years. Respironics has come out w/a version of their software for patients. I don't blame the manufacturers, they have tried making the data available to patients. It is the FDA capitulating to the brick & mortar DME suppliers and the unenlightned doctors who have jumed onto the sleep medicine cash cow subspecialty to keep this data from the end-users, the patients.

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