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Why Sleep Apnea Patients Rely On a Lone, DRM-Breaking CPAP Machine Hacker (vice.com)
Jason Koebler writes: "SleepyHead" is a free, open-source, and definitely not FDA-approved piece of software for sleep apnea patients that is the product of thousands of hours of hacking and development by a lone Australian developer named Mark Watkins, who has helped thousands of sleep apnea patients take back control of their treatment from overburdened and underinvested doctors. The software gives patients access to the sleep data that is already being generated by their CPAP machines but generally remains inaccessible, hidden by DRM and proprietary data formats that can only be read by authorized users (doctors) on proprietary pieces of software that patients often can't buy or download. SleepyHead and community-run forums like CPAPtalk.com and ApneaBoard.com have allowed patients to circumvent medical device manufacturers, who would prefer that the software not exist at all. Medical device manufacturers fought in 2015 to prevent an exemption to the Digital Millennium Copyright Act to legalize hacking by patients who wanted to access their own data, but an exemption was granted, legalizing SleepyHead and software like it.
I had a deviated septum. Spent most of my nights trying to transfer breathing between left and right nostrils. My wife finally convinced me to do the surgery. It wasn't pleasant, but it was life changing! I had never breathed through both nostrils at the same time before. For the last 20 years years now I still am so thankful for that surgery. DMJC, I encourage you to get it done.
I prescribe CPAPs for a living as a licensed medical provider, and I also use a DreamStation as a CPAP user. Well, used. Once. And promptly decided it was so limited and user-focused as to be useless.
The consumer view of the CPAP data is limited, trivial, and summary only. It doesn't show 1/10th of the things that I get from the proprietary software, that actually shows me *when* and *where* things are happening. For example, I can look, per night, at when the pressures on an AutoCPAP (yes, "AutoCPAP" sounds like an oxymoron. It's actually not) go up or down, and how the respiratory events changed on that basis. If a patient usually takes off his or her mask when the AutoCPAP pressure goes above 10 cm H2O, that tells me something very different than if they keep the mask on at that pressure, but that the pressure changes don't seem to be reducing apnea events,
I get the rationale: patients, given unlimited access to medical data, might be inclined to fiddle with settings based on it, which then complicates the actual treatment. But the fact is it's trivial to find out how to change the pressure settings on any ?PAP machine (CPAP, BiPAP, etc.) by either fiddling or Googling, so there's really no prevention of patient meddling, just *informed* patient meddling.
Oh, and I can't even give my patients their own data. I can give them summary printouts, and do on a regular basis, but that's not the raw data, suitable for further manipulation, it's a PDF that's pretty to print and look at, that has all the appropriate, reasonable, and customary summaries and common methods of displaying the data... but has no interface for someone else to go in and slice and dice it differently.
Of all the problems in the sleep medicine world, I think the biggest is patient ignorance ("it's just snoring") and underscreening. Data obscurity isn't in the top 5, in my book, but I still understand the right to obtain one's own data.