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ACTION ALERT Your CPAP data is being held hostage - ACT NOW!
#31
RE: Your CPAP data is being held hostage - ACT NOW!
I just got back from a few days away, during which I had to tweak the settings of my machine to compensate for higher altitude, very different humidity and lower bedroom temperature.

How, in a world where such adjustments can only be made 'at the shop', are we supposed to optimise therapy in situations like that?

This all reminds me of the ongoing action by farmers who are pushing back against tractor manufacturers, who have by similar tactics made it impossible for farmers to maintain their own machinery, or even get the local mechanic to do it. Now, only the dealer has the equipment and codes necessary. At the same time as they blocked DIY maintenance, the dealers increased their service charges significantly - surprise!

IMO, this all started with smartphones. Manufacturers have observed how phone makers exercise control over their hardware even after the customer has bought and paid for it. They also saw how the operating system manufacturers essentially ride roughshod over users' rights, retaining ownership of the product that's loaded onto YOUR phone and even harvesting your information and movements without your knowledge. Inevitable, seeing all of this, manufacturers of other products see opportunities for themselves by adopting similar high-handed tactics. It's like the customers' wishes no longer matter - and they're getting away with it.
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#32
RE: Your CPAP data is being held hostage - ACT NOW!
Hi everyone,
I have never been able to do anything with my own cpap machines because of a simple thing like a speech read-out that will tell me what I'm doing as I am doing it. But, that would interfere with THEIR bottom line.  What is SO upsetting about this is, that I'm just a lowly blind user of this equipment.  Now, if you think I'm whining about this, it's not just  like I'm looking for pity, or anything like that, I'm certainly not.   but after all, you cpap   manufactures need to come up into the 21st century.
Well, that's all for now, I hope this makes some kind of senses writing this is a challenge..
trish6hundred
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#33
RE: Your CPAP data is being held hostage - ACT NOW!
Welcome back, stranger!!! We've missed you.
- Red
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
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Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
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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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#34
RE: Your CPAP data is being held hostage - ACT NOW!
Trish, making CPAP therapy and settings information accessible to the blind is an amazing idea. I wonder if we can make Oscar useful to you by making the Welcome Screen summary available to your reader. For example, this is what Oscar says on a typical day:
"The last time you used your ResMed AirCurve 10 VAuto...was 71 days ago (on Monday, February 14, 2022)
Your machine was on for 8 hours, 45 minutes and 0 seconds.
You had an AHI of 1.03, which is over your 7 day average of 0.69.
Your machine was under 11.42-15.42 cmH2O for 95% of the time.
Your average leaks were 0.40 L/min, which is under your 7 day average of 1.30."
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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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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#35
RE: Your CPAP data is being held hostage - ACT NOW!
100% agree with and support @trish6hundred's call for support for the blind. These machines should be accessible for all those who need help.
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#36
RE: Your CPAP data is being held hostage - ACT NOW!
Trish,
I would like you to join our team of testers, your task would be to advise us on accessibility for the blind. What do we need to do on OSCAR to do it better.

If interested, please PM me (Gideon)
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#37
RE: Your CPAP data is being held hostage - ACT NOW!
Hi Red,sleeprider, Sheepish and Gidian.
Thank you for the welcome back and the various comments.
My computer read back anything, as long as it sees text to be converted to speech.
As far as Oscar gose, I've read plenty about it, but don't know much about how to work it.  So I really couldn't be  a tester.
I do appreciate you all giving me suggestions.
that's all for now.
trish6hundred
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#38
RE: Your CPAP data is being held hostage - ACT NOW!
I could be wrong but I suspect it's a HIPAA privacy/security situation since it's patient data.
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#39
RE: Your CPAP data is being held hostage - ACT NOW!
Fozzy, it becomes a HIPAA privacy and security situation when anyone else other than you takes custody of the data. The transfer and security of data to and from servers to authorized users of the data is indeed required to be secure; however, your SD card on your machine, and in your custody is not subject to being encrypted so that you cannot see or utilize the data. You own your data. That action is to make you dependent on the "care manager" network under rules set by a device manufacturer, so that they can remain a relevant and compensated part of the care chain. Let's look at it another way. Your tax and income information is supposed to be under similar protection, but your W2 or 1099 forms are not encrypted to keep you from knowing what you earned. Same idea. The information is for you, the regulators (care-takers) and anyone you share it with voluntarily. Oscar lets you use the data from your machine as you choose, but if it is encrypted, it ceases to be your property, and you must ask for data products at a price. What if the IRS would only disclose your income data as they have it, to tax preparers? Philips has interpreted the law to be you do not have the right to direct access to your data, and it must be reviewed analyzed and interpreted by their customers. If they change the encryption specifically to keep you from seeing your own data in Oscar, you should plan now to sue them, because Oscar can decrypt the Philips Dreamstation 2. If that changes, they are withholding patient data from the direct user.
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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#40
RE: Your CPAP data is being held hostage - ACT NOW!
Has anyone ever requested their CPAP data/records from their sleep doc, DME, or CPAP manufacturer? ( I have not tried)

When ever I've requested records or notes my own PCP keeps on my health and tests I've had he has always provided me with what I asked for either as an message attachment through his system or through USPS snail mail. Even back a bunch of years ago when my hospital kept physical records I was able to go the records department (sign in with proof of who I was), they would pull my file folder, and I was able use their copier to get copies of whatever was in the files (I think it was 10 cents per page to copy). Not sure if the hospitall still does that, but I would believe they likely don't any longer with most records being in an electronic format..

Regarding HIPAA and right to access........
https://www.hhs.gov/hipaa/for-individual...index.html
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