ACTION ALERT: Your CPAP data is being held hostage - ACT NOW!

[JJJ]

I'm still on the original DreamStation, recall notwithstanding, with the cellular module pulled. I don't use an ozone-type cleaner or use it in an especially humid environment, so I've chosen to continue using it because "upgrades" can too often turn out to be downgrades. 

Am I alone? Should I start a poll? 

I'm in the same boat. My DS1 bipap has never been cleaned, and in my genetic history no one has ever had cancer. I'm still using it, and without the modem. I've registered it with Respironics, but if they send me a DS2 I'll sell it online and put the cash in my pocket. I also have a Resmed bipap, but its an S9. I bought it out of pocket from Supplier #2 to use when I'm in the recliner, and for travel, and to have as a backup. 

I got the DS1 a couple of years ago from my insurance for a $300 co-pay (Kaiser Permanente). Their local shop is run by a physician's assistant, who knows I use Apnea Board and that I do my own settings. He is fine with that and trusts me, no hassles. They know about OSCAR, although they aren't allowed to have it on their computers; even though they told me they had tried it and thought it was great. All I use them for is to get a new mask now and then.

When I got the DS1 from them they sold only Respironics, but when the recall hit they switched to a different supplier. I saw one of their machines once when they brought one for a couple of nights when I was in the hospital, even though I had brought my Resmed - new hospital policy not to let patients use their own machines. When their technician came in to set it up for me. It took five minutes to convince her to let me use my machine and override the hospital rule. It was not a Resmed or Respironics so I don't know what they sell now. They leave me alone and I leave them alone.

[Abletree]

I predicted this yesterday in a Twitter /tweet/post I made yesterday morning. This issue is bigger than sleep devices. As an increasing number of personal biometric devices are providing individuals with means to improve their health, preventing and reversing diseases, corporations are not about to allow a loss of associated profits

Think about the wearable devices - heart rate/BP/EKG monitors, continuous glucose monitors, fitness trackers, oxygen sensors and more. Imagine other possibilities to come in the pipeline -
(EEG continuous BMI, etc). I have been fearing an outright prohibition on personal health data

This is only the beginning if we don't act now

Here is my tweet from yesterday:

[FaceInTheCrowd]

Feel free to delete if you don’t want discussion like this on your thread but does anyone know how these companies have the right to gather our medical data without our permission?

And then to block us from having it while they then profit from it?


How can they possibly have the right to do this?

[StratCat48]

FaceITheCrowd......

There's a pretty good chance somewhere back when you received your CPAP device, you may have signed off on the DME's terms of agreement and medical consent either with a physical signature or an electronic signature which gives the DME permission to gather/collect your medical data. This agreement extends to other health care organizations which would likely also include the CPAP manufacturer. I suspect the wording and content of the agreement may be somewhat standardized throughout various DME's.  

Excerpt from the backside of  my DME CPAP 'Delivery Ticket'.................

"1. Terms of Agreement and Medical Consent. Customer acknowledges receipt of all equipment and/or supplies listed on this delivery ticket, that he or she is under the care of his or her attending physician, and that 'xxxxDMExxxx' shall not be liable for any act or omission undertaken at the direction or under the instruction of said physician.

2. Medical Information Authorization. Customer authorizes any holder of medical information relating to said Customer to release to 'xxxxDMExxxx' any record pertaining to his or her medical history, services rendered, or treatment. Customer authorizes 'xxxxDMExxxx' to release Customer’s medical information to appropriate accreditation and insurance company personnel and other health care related organizations.

3. Assignment of Insurance Benefits. Customer authorizes any and all Medicare or other insurance benefits to be paid directly to 'xxxxDMExxxx' for any services or equipment furnished to Customer by 'xxxxDMExxxx'."

[Abletree]

In boosting this message, I think it will be effective to emphasize the money that can be made by companies who continue to build free access systems and devices. They can capitalize on his opportunity as evil competitors put themselves out of business

We have to get that message out

[DaveCar]

"Airplane" mode would work for now to prevent any updates, but that wouldn't work for those who depend on DME/Doctor fed data stats for licensing etc.

[srlevine1]

"1. Terms of Agreement and Medical Consent. Customer acknowledges receipt of all equipment and/or supplies listed on this delivery ticket, that he or she is under the care of his or her attending physician, and that 'xxxxDMExxxx' shall not be liable for any act or omission undertaken at the direction or under the instruction of said physician.

2. Medical Information Authorization. Customer authorizes any holder of medical information relating to said Customer to release to 'xxxxDMExxxx' any record pertaining to his or her medical history, services rendered, or treatment. Customer authorizes 'xxxxDMExxxx' to release Customer’s medical information to appropriate accreditation and insurance company personnel and other health care related organizations.

3. Assignment of Insurance Benefits. Customer authorizes any and all Medicare or other insurance benefits to be paid directly to 'xxxxDMExxxx' for any services or equipment furnished to Customer by 'xxxxDMExxxx'."

One might make the case:

(1)  The agreement was coerced and executed under duress as you were "forced" to sign a unilateral, non-negotiable, contract to preserve your health while impaired (sleep deprivation) or in a state of anxiety;

(2)  The DME agreement is self-limiting in that the transfer of information was to ONLY facilitate billing, regulatory compliance, and medical supervision; 

(3)  The sales contract was between you, as an individual, and the DME, and a separate agreement would be required between you, as an individual, and the device manufacturer -- part of the software licensing and use terms. This could be complicated by a mandatory rental machine and the ownership being held by a third party until the ownership is ceded or formally transferred to you. My DME never formally conveyed ownership to me and the only document that exists is the sales agreement.

(4)  The data being provided by the device manufacturer to researchers has been anonymized and does not contain any personal, non-public, or identifying information and is used for medical research and device improvement rather than being sold as targeted marketing leads. Therefore, no cause of action exists. 

As I see it, the real question is not who owns the data, but your right to access the data in a format suitable for your needs.

[AlanE]

I’ll vote with my dollars. if i have to jailbreak my A10 to continue using it, then so be it.

[David Clark]

Wow....

Care Orchestrator supports the following sleep therapy devices:

REMstar Plus (Philips Respironics)
REMstar Pro (Philips Respironics)
REMstar Auto (Philips Respironics)
REMstar Phonix (System One 60 Series)
REMstar Somnia (Philips Respironics)
BiPAP Pro (Philips Respironics)
BiPAP Auto (Philips Respironics)
REMstar Pro with AutoIQ
REMstar Plus (System One 60 Series)
REMstar Pro (System One 60 Series)
REMstar Pro Check (System One 60 Series)
REMstar Auto (System One 60 Series)
REMstar Auto with P-Flex (System One 60 Series)
REMstar Somnia (System One 60 Series)
BiPAP Pro (System One 60 Series)
BiPAP Auto (System One 60 Series)
DreamStation CPAP
DreamStation CPAP Pro
DreamStation CPAP Pro with Auto-Trial
DreamStation CPAP Pro with CPAP-Check
DreamStation CPAP Pro with C-Flex+
DreamStation Auto CPAP
DreamStation Auto CPAP with P-Flex
DreamStation Auto CPAP with Auto-Trial
DreamStation Auto CPAP with A-Flex
DreamStation BiPAP Pro
DreamStation Auto BiPAP
DreamStation Go (Travel PAP)
DreamStation Go Auto (Travel PAP)
DreamStation Expert
DreamStation 2 CPAP
DreamStation 2 Auto CPAP
DreamStation 2 CPAP Advanced
DreamStation 2 Auto CPAP Advanced
REMstar (System One)
REMstar SE (System One)
REMstar SE Auto
Dorma 100
Dorma 200
Dorma 400
Dorma 500 Auto

Care Orchestrator supports the following respiratory therapy devices:

BiPAP A30 (Legacy)
BiPAP A30
BiPAP A30S (Legacy)
BiPAP A30S
BiPAP SOH
BiPAP A40 (Legacy)
BiPAP A40
BiPAP A40 Pro
BeLife A40 Pro (Italy private label only)
BiPAP A40 EFL
BiPAP S/T
BiPAP Harmony S/T
BiPAP S/T 20
BiPAP ST20 (System One 60 series)
BiPAP S/T 25 (System One 60 series)  
BiPAP S/T 30 (System One 60 series)  
BiPAP AVAPS
BiPAP AVAPS 25 (System One 60 series)  
BiPAP AVAPS 30 (System One 60 Series)
BiPAP autoSV Advanced System One [aka ASV 50 series]
BiPAP autoSV Advanced (System One 60 Series) [aka ASV 60 series]
DreamStation autoSV
DreamStation BiPAP S/T 25
DreamStation BiPAP S/T 30
DreamStation BiPAP S/T 30 with AAM
DreamStation Harmony S/T
DreamStation BiPAP AVAPS 25
DreamStation BiPAP AVAPS 30
DreamStation BiPAP AVAPS 30 with AAM
DreamStation BiPAP AVAPS 30 AE
DreamStation AVAPS Eolus
DreamStation AVAPS VitalVent
DreamStation AVAPS RespiComfort
DreamStation Synchrony AVAPS
BiPAP Hybrid A30
BiPAP V30 Auto
Trilogy 100
Trilogy 200
Trilogy O2/202
Trilogy Evo
Trilogy Garbin Evo (Italy private label only)
Trilogy Aeris Evo (Italy private label only)
Trilogy LifeVent Evo2 (Italy private label only)
Trilogy Evo O2
Trilogy EV300

Care Orchestrator supports the following oxygen concentrator devices:

EverFlo
Daikin Oxygen Station 5L

[SuperSleeper]

Thanks David - that's more evidence that Philips intends to use Care Orchestrator for their entire lineup of respiratory products.

Just so folks know, Care Orchestrator is the cloud-based software package that can only be used by health care professionals.  No access for individual patients at all.

So yet again, actual users of their products are left high and dry.  Not good.  

They actually believe that we can't be trusted with direct access to our own medical data.  We're too stupid for that, apparently.