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[CPAP] Help me push: DS2 and our right to access our own sleep data
#11
RE: Help me push: DS2 and our right to access our own sleep data
Fillmore50, yes that's correct, PR is Philips Respironics.

Just my take:
The act of blocking users from seeing how effective or not their therapy is due to the intentional act that results in encrypted data has a deceptive, fraudulent stink to it. Myself would abandon Respironics like a sinking ship that's on fire.
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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#12
RE: Help me push: DS2 and our right to access our own sleep data
(10-25-2021, 10:44 PM)Sleeprider Wrote: 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.

I can now attest to this as I finally bit the bullet recently and got myself an Airsense 10 Autoset (out of pocket) replacing an 11 years old PR Remstar System One and a Dreamstation 1 I bought in 2019 I couldn't use because it was just too noisy. I still tried to sleep with it for weeks but eventually went back to my aging System One.

Both machines were comfortable as far as breathing is concerned (I do not need crazy pressures, my prescription is a huge range from 6-18 but I rarely go past 11). The DS1 was slightly more comfortable but the heated tube had a lot to do with it as I never had one with the System One.

But the ResMed is something else! It was my first night with it last night and I had a horrible start of night as I struggled with my mask (set humidity too high and the Activa LT's exhaust holes seem to get water/moisture in them (it sometimes did that with the System One and DS1 too) and emit a ridiculously annoying high pitched noise. I had to move to a newer but unfamiliar to me Swift Nano nasal mask (I wanted to test it later as to not change too many variables in the first night but had no choice but to switch at 2AM). Between that and adjusting bedding (a yearly struggle at this time up here in Quebec as seasons change) and going too warm when we expected a much chiller nighttime temperature, I probably slept barely 5 hours last night. I should feel a lot worse than I do today but I feel the Airsense therapy quality compensated.

In terms of breathing comfort, the difference was significant. The Resmed reacts quicker but feels smoother (I kept EPR at 1 and my min pressure is 8). The machine is near completely silent and I felt my breathing was better "supported" (it feels more "solid" a reliable to me somehow). I was hoping for all that but was pleasantly surprised it even surpassed my expectations.

My sleep data looks great too! Less events in general and more stable pressure. Having that data is absolutely key for me. I do not obsess over it anymore (after nearly 12 years on CPAP) but this would make a DS2 a no go for me recall or not. But that recall and the way Philips is handling everything has sealed the deal with them for me and I will never use one of their machines again. I think Sleeprider nails it on the head when he says the Philips seem more primitive. I feel like I got high end treatment last night and I really though the difference was exaggerated before. Now I see it...
CPAP: ResMed Airsense 10 Autoset
Mask: ResMed Airfit N30
Diagnosed with severe apnea in 2009 (43+ events/hour with very long events)
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#13
RE: Help me push: DS2 and our right to access our own sleep data
(10-26-2021, 09:25 AM)SarcasticDave94 Wrote: Fillmore50, yes that's correct, PR is Philips Respironics.

Just my take:
The act of blocking users from seeing how effective or not their therapy is due to the intentional act that results in encrypted data has a deceptive, fraudulent stink to it. Myself would abandon Respironics like a sinking ship that's on fire.

I feel the same way. No access to data is a deal breaker. I really hope other manyfactures do not follow suit and that, for Philips' users' sake that they change their ways...
CPAP: ResMed Airsense 10 Autoset
Mask: ResMed Airfit N30
Diagnosed with severe apnea in 2009 (43+ events/hour with very long events)
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#14
RE: Help me push: DS2 and our right to access our own sleep data
I completely agree. As the actual users of these devices, we have the right to the detailed sleep therapy data produced by the device. It’s unacceptable and illegal to block the user from accessing their own detailed data. Yes, cybersecurity is important, but the way it’s now implemented in the DS2 is not ideal. I’m not a fan of the Philips ‘sleep ecosystem’ as they call it. I know there is a push to connect every device to the internet of things, but there is a limit as to how far I’m willing to go with it. I find the DreamMapper app completely useless; it does not provide any useful detailed data. In addition, I don’t want to pair the device to the mobile phone. I definitely don’t want to use an app on the phone to check my sleep data. I have the Airplane mode on.


For them to say well, you can get the detailed reports from the sleep doctor is pointless, because it’s very difficult to communicate with the one I have. Also, there is no one at the sleep doctor’s that would be monitoring the data with a keen interest to pinpoint areas to optimize. Asking them for data would also probably incur appointments and costs. This option is not practical.

Thanks to the information from this forum, I was able to tweak my therapy settings and resolved the issues I was having previously. However, while the AHI is low (0.2 – 1.~), without access to the detailed data on the SD card I feel like I’m flying somewhat blind. They should provide the encryption key to the users that want it and we could then analyze the data using OSCAR.
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#15
RE: Help me push: DS2 and our right to access our own sleep data
(10-26-2021, 02:09 PM)Kuutar Wrote: Thanks to the information from this forum, I was able to tweak my therapy settings and resolved the issues I was having previously. However, while the AHI is low (0.2 – 1.~), without access to the detailed data on the SD card I feel like I’m flying somewhat blind. They should provide the encryption key to the users that want it and we could then analyze the data using OSCAR.

Well, can I suggest that you also file a cmplaint with with FDA/HHS?

Email address is: orabltccc@fda.hhs.gov

The more we are, the more likely to be heard

Thanks
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#16
RE: Help me push: DS2 and our right to access our own sleep data
(10-26-2021, 10:57 PM)fillmore50 Wrote: Well, can I suggest that you also file a cmplaint with with FDA/HHS?

Email address is: orabltccc@fda.hhs.gov

The more we are, the more likely to be heard

Thanks

Yes, definitely. Forgot to mention in the earlier post that I will join to fight for patient rights to have access to our data.

I didn't envision things to turn out this way, that I would be having a DS2 as the primary device. Had a rather 'hellish' two months with DMEs trying to obtain a ResMed replacement device, and then the DS2 showed up. Being on therapy is what matters to me at this point. Now I think I'll buy a ResMed device out of pocket at some point.
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#17
RE: Help me push: DS2 and our right to access our own sleep data
(10-27-2021, 08:26 AM)Kuutar Wrote: Yes, definitely. Forgot to mention in the earlier post that I will join to fight for patient rights to have access to our data.

I didn't envision things to turn out this way, that I would be having a DS2 as the primary device. Had a rather 'hellish' two months with DMEs trying to obtain a ResMed replacement device, and then the DS2 showed up. Being on therapy is what matters to me at this point. Now I think I'll buy a ResMed device out of pocket at some point.

Great. Thank you. 

As far as buying a ResMed on your dime, what's the cheapest you can find out there?  Any way one can have the insurance pick up the tab also for that device (as far as you know)?

Fillmore
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#18
RE: Help me push: DS2 and our right to access our own sleep data
(10-27-2021, 08:26 AM)Kuutar Wrote: Now I think I'll buy a ResMed device out of pocket at some point.

BTW, I saw companies that offer CPAP machine rentals (don't want to post links because I understand that there are very strict rules here).

I wonder whether that could be an option for me to try ResMed without committing to it. My only worry is that, If I like the device, I may have thrown away the rental price, which represents a good chunk of the total price anyway....
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#19
RE: Help me push: DS2 and our right to access our own sleep data
A CPAP rental isn't like going down to your local tool rental store. I would term it more like a lease-to-own, and in some cases, the monthly fee can easily buy a used machine. Please tread carefully.
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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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#20
RE: Help me push: DS2 and our right to access our own sleep data
@fillmore50

I occasionally buy things I'm not sure will be a fit for me (typically music gear). I buy it with the thought that if it doesn't work out I'll sell it for a bit of a loss. The loss I view as a cost to rent to try it out for a short time. If you buy a CPAP you're not sure about, sell it for a slight loss and it will be kind of like renting one to evaluate. A lightly used one should sell easily.
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