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To CPAP Manufacturers-- WATCH THIS VIDEO - SuperSleeper - 09-15-2021
GuyScharf originally made us aware of this video in the private AST Forum here (OSCAR development forum), but I think it deserves to be seen by our members and more importantly - by the CPAP manufacturers themselves:
https://www.youtube.com/watch?v=zKV-xGKOs7A
NOTE: If a CPAP manufacturer would like to help provide information to make sure their machines are fully supported by OSCAR, please send your contact info to: oscar@oscar-team.org
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - Sleeprider - 09-15-2021
Supersleeper, how can a manufacturer contact the OSCAR team to help? Do we have a contact persons?
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - pholynyk - 09-15-2021
oscar@oscar-team.org will forward to me
I can add other people as desired.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - SuperSleeper - 09-15-2021
(09-15-2021, 06:44 PM)pholynyk Wrote: oscar@oscar-team.org will forward to me
I added that info to the OP. Thanks.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - srlevine1 - 09-16-2021
Great Video -- but it is like barking at the Moon.
The way the current situation was explained to me by ResMed at their San Diego, California headquarters is that ResMed's customers are the DME vendors, sleep labs, and medical prescribers, not the end-users. Therefore, it would be too expensive to support end-users and they could be potentially charged with practicing medicine without a license. They are more afraid of the FTC, FDA, and the AMA, than they are of end-users. There is also the issue of being sued by individuals who suffered adverse effects from self-directed modifications or settings changes without specific medical advice.
However, recent legislative efforts like California's Senate Bill SB 605 "The Medical Right to Repair Act" would help alleviate access to critical information.
(https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB605)
"SB 605 would require manufacturers of powered medical devices to make the documentation, software, and parts necessary to maintain and repair such devices available to a hospital and an independent service organization engaged by the hospital, on fair and reasonable terms, so that the hospital or its engaged repair service can conduct its own maintenance and repairs. It would subject a manufacturer that violates this requirement to a civil penalty, as specified."
The bill is currently in Senate Appropriations Committee as of 5/20/21 and is being opposed by lobbyists who claim that they would lose a critical business advantage should trade secrets and proprietary information be revealed under non-licensed conditions without contractual restrictions.
.The greater the distribution of information, the greater chance of it being passed along by a sympathetic party.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - Sleeprider - 09-16-2021
Apparently Arie Klerk has been in contact with Philips. His communication is in this new thread [link removed - thread is in the private AST forum, only accessible to the OSCAR team at this time] The reply he got back from Philips is pretty much all Lanky Lefty needs to know:
Quote:Dear Arie,
Hope all is well with you. Hope to see you live again soon!
We are obviously knowledgeable about the OSCAR software and understand that some users would like to obtain more granular data from their therapy. From the evaluations we conducted during the development of DreamMapper, we learned that providing too much information by default is confusing and raises more questions than it answers. The result of this exercise is DreamMapper where the necessary therapy data is offered with the necessary support to achieve adherence (instructional videos, motivation).
Of course, we understand that for some users, and this is rather a very limited group, the information offered is too limited and they would like to obtain additional data. In this case, we recommend contacting your home care provider and/or treating physician who can print and hand over a detailed report or possibly offer it to the users through their systems (just like blood analyses and imaging protocols). However, professionals should not fail here as suggested. Therapy support/counseling is further regulated by law and should be performed by wake professionals who have a healthcare relationship with the patient.
We cannot support, promote or encourage products, accessories, and actions that have not been developed or validated by the manufacturer under any circumstances. This has led in the past to very serious problems (cfr. cleaning with ozone) and caused a lot of damage to the company.
For this reason, we can unfortunately not accept this request.
We would like to provide extensive training regarding DreamMapper. Including motivational interviewing that is incorporated into the app, discuss the study results where the use of DreamMapper with the benefits regarding therapy compliance for a selected patient group. In the attachment, I am already sending some additional info.
If I can be of any further assistance in this, please let me know,
With kind regards,
Mikel
Mikel Becks
Clinical Specialist / Somnologist - Technologist
Sleep & Respiratory Care Netherlands
Philips
Philips, High Tech Campus 52, 5656 AG Eindhoven, The Netherlands
Tel: + 31 6 28491497, Email:mikel.becks@philips.com
http://www.philips.nl/nieuwscentrum
*** Translated with http://www.DeepL.com/Translator (free version) ***
---------------------------
As a sole reaction, I have asked him for a copy of DreamMapper for a first evaluation.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - Ratchick - 09-16-2021
I've only been here a relatively short time and despite that, in that time, there have been SO many people coming through with incorrect diagnoses - who have central or complex/mixed apnea and are just told to use the CPAP, or people who have been struggling for so long and are a hairbreadth away from just giving up... how many MORE people are out there who just quietly follow the instructions and still struggle, or give up?
That response from Philips is downright patronising in the extreme but unsurprising. I somehow doubt there was any real reason to change the data format with the DS2 beyond obfuscation. Comparing transparency of user data to the damage caused by SoClean is just... out there. But I guess they don't make their money if users can manage their own damn health, do they?
I, personally, am eternally grateful to the OSCAR team for the product they've created because I now have the ability to actually advocate for myself and be knowledgeable in the process. Everyone should have the same opportunity, whether they choose to take it or not.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - srlevine1 - 09-16-2021
Of course, the final answer may be to use the older OSCAR-compatible device which may be available NEW at a lower price. I am re-thinking the purchase of the ResMed AirSense 11 because it does not appear to support my $800 ResMed Pulse/Oximeter setup using ResMed's adapter and a Nonin 3012LP XPOD.
Sorry, but I do not need a video–game iPhone interface or touch-screen to be happy. 4G communications and upgradable software were available on the later versions of the A10.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - cathyf - 09-17-2021
By their works shall you know them. Think about how the machine manufacturers and sleep medicine professionals behave. It's obvious that they think that sleep medicine is a giant scam, where they convince us people that we have something wrong with us, and so we spend all this money on their products. But they don't believe that there is anything much wrong with us, so it's no big deal if they lie to us, no big deal if they abandon us and ignore us.
You dreamstation 2 owners -- for all you know it's not an APAP at all. Maybe there aren't any sensors in the machine -- it would sure be cheaper to build them if they didn't actually have any electronics except the display, and no software beyond running the menu system which pretends to accept your settings but doesn't do anything with them. Or maybe as soon as you fall asleep the machine sets itself to some constant pressure and ignores entirely anything that's happening and uses its entire CPU to mine cryptocurrency which it sends back to PR headquarters. "That's absurd!" you say -- really? Without the data how can you prove me wrong? How can you prove anything?
These people are proven liars who have proven over and over that they don't have the slightest bit of concern for their users' well-being. Trust is lost in an instant, and takes decades to regain.
RE: To CPAP Manufacturers-- WATCH THIS VIDEO - LindanHotAir - 09-18-2021
It would be advantageous to the manufacturers to make the data available as proper treatment can result in better results, better compliance, and piles of money from continued mask and filter sales to people who don’t give up on the treatment. In many cases the patient might get the proper $5000 machine instead of continuing on a marginally adequate $500 machine. Much of the extra price on the higher end machine is software profit the manufacturer is raking in from a one time investment. Physically the ASV machine has a larger motor with higher output (30 vs 20) than the auto CPAP and faster response, but there is more similarity than difference. The ASV keeps the tidal volume up where the auto CPAP can’t prevent it from going to zero in spite of pressure pulses in response to reduced breathing. Without the data it is impossible to find out how inadequate the treatment is in spite of AHI numbers that looked OK.