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[CPAP] Help me push: DS2 and our right to access our own sleep data
#1
Help me push: DS2 and our right to access our own sleep data
Friends, after a fair amount of research I have come to the conclusion that not the FDA, but HHS, and specifically their office of civil rights (OCR), is the one responsible for handling HIPAA complaints. 

https://www.youtube.com/watch?v=bonloqeO...orHealthIT

I argue that, under HIPAA, we all have the right to access our medical records. By encrypting our data (the data of DreamStation 2 CPAP machine owners), Philips is hampering our rights: with DS1 we could look at our data with Oscar. That is no longer a possibility with DS2.

If you also own a DS2, I urge you to file a complaint with the HHS just like I did: 

https://ocrportal.hhs.gov/ocr/cp/complai...sf?lang=en

As far as Philips goes, here is their US headquarters address (so you won't need to look it up, it's required by the online form):

222 Jacobs St 3RD FL Cambridge,  MA , 02141

tel: 978-659-3000

Thanks

Fillmore
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#2
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RE: Help me push: DS2 and our right to access our own sleep data
I agree with you in this. I don't have any PAP at all now, and have previously decided I'll stick with ResMed. Regardless, I think Philips Respironics is wrong in this action regarding blocking the patient from accessing his own info.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Help me push: DS2 and our right to access our own sleep data
Just got a call from FDA. They said that FDA and HHS are the same office, so there is no problem with me having filed with both entities. More importantly they said that they will pick up this case (these weren't the exact words but it was the spirit).

If you own a DS2 and want to access your data under HIPAA, I encourage you to also file a complaint with HHS
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#4
RE: Help me push: DS2 and our right to access our own sleep data
I would take the DS2 back for a refund/replacement with another model, until this is successfully resolved which BTW can take a while.
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#5
RE: Help me push: DS2 and our right to access our own sleep data
(10-25-2021, 08:38 PM)S. Manz Wrote: I would take the DS2 back for a refund/replacement with another model, until this is successfully resolved which BTW can take a while.

Do you happen to have experience with both DS2 and a similar device from another manufacturer? How do the two machines compare?

would it make sense for me to get a refurbished additional machine? 

apart from the Oscar issue, I'm happy with my DS2...

Thanks
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#6
RE: Help me push: DS2 and our right to access our own sleep data
Fillmore50, across the board we have seen better efficacy and comfort from Resmed machines than Philips, however individual preferences show some support for the Philips machines. Since 2008, I used older generation Philips Respironics Series M and System One 60 series CPAP and BiPAP. I switched to Resmed in 2015 and never looked back. Philips CPAP machines are primitive compared to the Resmed Airsense machines, mostly due to the use of exhale pressure relief (EPR) with the Easybreathe ™ algorithm for pressure trasnitions between inhale and exhale, vs Philips reliance on Cflex, flex in CPAP machines, and BiFlex in BiPAP. There is simply no comparison for comfort and efficacy, ant the Resmed machines are essentially bilevel PAP machines with very refined IPAP/EPAP transitions vs the comparatively crude modified square-wave transitions of Philips. While Philips machines rely on snores and flow to adjust pressure, the Resmed focuses on flow limitation (flattening of inspiratory flow rate) to anticipate obstruction, and is able to prevent events while Philips is just reacting to events that occur.

That said I had reasonable success with Philips CPAP and BiPAP, but the encryption of detailed patient data is a deal-breaker. I was originally prescribed an Auto-CPAP machine and self-titration. To do that I relied on data to know what worked. In those days, we had EncoreBasic to use with SmartCards and USB or serial interfaces. Sleepyhead came along and was useful with the SD cards in the Philips System One and Resmed S9 series machines. Sleepyhead and later Oscar have supported both manufacturers to the current day, but Philips has chosen to block patient access to data with its latest machines, and force them to rely on DMEs and doctors who pay for subscriptions to the proprietary Philips program. This ensures patients must consult their doctor to get information needed to optimize or change therapy, and Philips gets to sell access as a subscription. Combined with Philip's aggressive marketing that pays doctors and DME's to exclusively prescribe and dispense Philips products, the company is simply evil and puts sales ahead of patient choice. The technology is old and inferior, even in the new machines. Need I continue?
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Help me push: DS2 and our right to access our own sleep data
How much do we actually know about the encryption? What do we know about the encryption keys? What do we know about how PR stores the keys? Transmits the keys to the DMEs and doctors who are supposed to be prescribing your settings and monitoring your data? What vulnerabilities are there to hackers? Bugs? Where are the keys stored? What governments have jurisdiction over the physical locations of the computers? What about the data backups?

What about the mechanics of manipulating machine settings? When I pay a doctor or a dme for medical services, I am the patient, they are the provider, and they have very specific legal and ethical obligations to me -- and the exact legal details vary by where we are. PR has made it abundantly clear that the people at the other end of the hose from the machines that PR makes are not PR's customers, not PR's patients. Can a patient sue PR for malpractice if PR sends commands through the modem that sets the machine's settings to values that harm the patient?

Who owns the data that a patient generates from breathing into the machine? I've been reading research papers about the sleep apnea research done in academic settings -- there is always discussion of the formal consent given by the research subjects and clearance by regulators who monitor research on human subjects. I and a whole lot of other people in this group are conducting research on ourselves to try to figure out the best machine settings -- I have the right to conduct research on me, nobody else has the right to conduct research on me without my consent. What prevents PR from downloading the data, changing the settings, observing the effects, all without my knowledge or consent?

My ResMed machine generates between 3-5 MB of data every day. If the DS2 records a lot of data, how much detail gets transmitted to PR? If I am a sleep doctor and PR doesn't give me access to the information I need to correctly treat my patient, am I on the hook for malpractice resulting from their negligence? If PR loses enough foamgate lawsuits that they can no longer afford to pay the cellular data charges to collect the data, no longer afford the data center charges to store my data, lay off the engineers who manage the software and systems to run their cloud storage of the patient data? What if foamgate bankrupts them, and they erase all of the patient data off their computers and auction off the computers to pay PR's debts? (Ever hear the story of "dark fiber" and how all of the pioneers of laying fiber in the US went bankrupt, and now decades later there are significant segments of the Internet backbone which runs over fiber that no one knows exactly where it is?) If PR goes bankrupt, do PR's creditors own the patients' data? Which country's bankruptcy laws control that?
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#8
RE: Help me push: DS2 and our right to access our own sleep data
Wow. Guys (and ladies), I am truly impressed by your knowledge and the depth of your answers, which I am truly grateful for. Without this forum, I would be lost in the dark. I won't claim I have understood everything you guys said, but the general sense is clear and now I got pointers for more research I can do on my own to educate myself.

Cathy, what does PR stand for? Is it Philips? Philips Respironics?

Thank you
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#9
RE: Help me push: DS2 and our right to access our own sleep data
I'm wondering if the data encryption by Philips was not so much intended to block user access, but  prompted by the FDA and DHS due to a potential cybersecurity issues in medical devices and associated software? I couldn't find a direct link between CPAP products and cybersecurity in a Google search, but it may be the reason behind the encryption. Would suspect there will be little help from the FDA if they are the ones recommending elevated security protocols on medical gear and software.
Certainly give you credit for trying to get access to this data.


https://www.fda.gov/news-events/press-an...rabilities

Philips is listed as a vendor in this article regarding URGENT/11..........
https://www.zdnet.com/article/dhs-and-fd...abilities/
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#10
RE: Help me push: DS2 and our right to access our own sleep data
StratCat48, the FDA did not drive this decision. The detailed data is only available with physical possession of the SD card. We could care less how Philips transmits data read remotely, we just want clean access to data on the SD card. Keep in mind, even without encryption, there is nothing to see on the SD card without a program to load and interpret the data in a meaningful way, just hexadecimal code.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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