Your CPAP data is being held hostage - ACT NOW!
ACTION ALERT: Your CPAP data is being held hostage - ACT NOW!
What if all CPAP manufacturers were to simply "turn off" your ability to see your own data?
What if they made it impossible for you to change most settings on your own CPAP machine?
Would that concern you?
If it does, then read on...
What happened?
Beginning with their DreamStation 2 CPAP models, Philips-Respironics, one of the world's leading manufacturers of CPAP machines, introduced data encryption that effectively prevents patients from directly accessing, viewing or analyzing their own CPAP data. This new development forces patients to go through their local medical professional to obtain or view detailed data.
Will it affect OSCAR software?
Although OSCAR software developers have deciphered the current encryption issue (April 2022), all it would take to wipe out that progress is for Philips to force an over-the-air firmware update with new encryption preventing users from accessing their personal data. Personal Data should be the property of the CPAP user, not the machine's manufacturer. OSCAR software would be rendered obsolete and the developers would be back at "square one" in trying to overcome this restriction. [for more on how this affects OSCAR, see post #3]
What does this mean to us as patients?
Apnea Board is a leader in the "patient empowerment" movement and we believe patients should have the right and the ability to view and analyze their own CPAP data. Patients should be free to change their own CPAP settings to obtain optimum therapy results immediately, and not forced to wait for appointments to obtain their own CPAP data from medical professionals who are busy and often unavailable 24/7 to meet or address the needs of individual patients. We view this decision by Philips to restrict patients' direct access to their personal data as very dangerous to patient empowerment.
Why are they doing this?
Philips Corp has a long-term strategy that works to monetize the data they collect from your medical devices. Their plan is to work with their health systems "customers" (DMEs, clinics, physicians and insurance companies) to increase revenue by becoming a "healthcare clearinghouse". Philips collects usage and efficacy data from its CPAP devices, and provides reports to its subscribing customers. These reports may include the data, interpretation, recommendations for compliance, optimization or a need for further clinical evaluation of the patient's needs. The problem is that Philips is already encrypting this data and preventing any unauthorized use of that data by the patient or anyone not in an affiliate relationship with Philips. [for more info on the monetization issue, see post #4]
CPAP machines already exist that encrypt therapy data and in some cases prevent changes to settings. Philips has clearly stated this corporate vision (see Philips Strategic Focus). Our concern is that patients and forum members will lose access to the data that enables therapy optimization and better results at no cost. This would be replaced by a system where data must be requested, and where manufacturers use our data to sell potential solutions to care-takers.
What if this spreads to other manufacturers?
Data-encryption and monetization of that data may become an industry-wide trend, spreading quickly to other CPAP manufacturers. If this trend proves financially profitable for Philips, we believe it is not a matter of "if" this monetization spreads - it will simply be a matter of "when" it will spread. We simply must voice our concerns in a very public way now.
What can I do to stop this?
* Contact the media & press (not only legacy media, but also new-media influencers on YouTube, Facebook, Twitter, health-related forums and other social media). [see Contact List] Provide a link back to this thread so that others can be informed. We made a shortened URL that links back to this thread-- simply tell folks to go to www.ApneaBoard.com/alert
* Contact your local DME (Durable Medical Equipment supplier) to make them aware of the issue and of your refusal to accept Philips products unless and until the encryption is removed.
* Contact your local clinicians (Sleep Lab Techs, Doctors, Respiratory Therapists, etc) to make them aware of the issues and tell them of your refusal to use Philips products unless you have immediate access to your personal medical data.
* Contact CPAP manufacturers and inform them as well (starting with Philips). Inform them that you will not use, rent, or purchase CPAP machine which does not allow you to access your personal data immediately and cost free. [see Contact List]
* Contact governmental authorities (this might include FDA, state & federal regulatory agencies and federal legislators). [see Contact List]
* Suggest new ideas on how to both "get the word out" and successfully influence all stakeholders to consider a patient's right to have direct access to their own CPAP data without involving an intermediary.
Is there a list of contact information?
Please see post #2 - it will be continuously updated with contact information.
What then?
After you've contacted several people to voice your concern, please post a reply in this thread to let everyone know you've done your part to stop non-medical professionals from denying you access to your personal medical data. Your reply will also "bump" this thread to the top of the Main Forum so that it remains highly visible. You can also express your thoughts and opinions in your post and perhaps help us explore other methods to voice our opposition to this type of encryption.
Please act now
We must do all we can to convince manufacturers to allow patients full, complete, and direct access to their own CPAP data.
Quote:To help spread the word, please spread the link to this thread - we've created a shortened URL for you to use on other websites - it links back automatically to this Action Alert thread-- simply tell folks to go to:
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com
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.
RE: Your CPAP data is being held hostage - ACT NOW!
CONTACT LIST
Get involved now!
(This is a list of U.S. contacts -- Lists for other countries may be added via additional posts to this thread)
Major CPAP manufacturer Contacts:
Philips-Respironics
1740 Golden Mile Highway, Monroeville, PA 15146
Sleep/Respiratory: (724) 387-5200
ResMed
9001 Spectrum Center Boulevard San Diego, CA 92123
Main: (858) 836-5000 or (858) 746-2400
Fisher & Paykel
695 Town Center Drive Suite 180, Costa Mesa, CA 92626
Main: (888) 936-7872
DeVilbiss Healthcare
100 DeVilbiss Drive, Somerset, Pennsylvania 15501
Main: (814) 443-4881
Puritan Bennett / Medtronic
710 Medtronic Parkway, Minneapolis, Minnesota 55432
Phone: (763) 514-4000
Human Design Medical (HDM)
16 Esquire Rd, N. Billerica, MA 01862
Main: (855) 436-8724
3B Medical
203 Avenue A NW, Winter Haven, FL 33881
Main: (863) 226-6285
AEIOMed
1313 5TH ST SE MINNEAPOLIS MN 55414
Main: (612) 455-0550
Apex Medical
927 Mariner Street, Brea, CA 92821
Main: (714) 671 3818
Somnetics / Transcend
103 Osborne Road NE Fridley, MN 55432
Main: (877) 621-9626
Viasys Healthcare / Cardinal Health
7000 Cardinal Place, Dublin, OH 43017
Main: (614) 757-5000
PMI Probasics
15 South Main St, 2nd Floor, Marlboro, New Jersey 07746
Main: (732)-683-1900
Email: ?
Curative Medical
3327 Kifer Road Santa Clara, CA 95051
Main: (408) 414-2188
CareFusion / BD
1 Becton Drive Franklin Lakes, NJ 07417
Main: (858) 617-2000
Your Local Media & Press Contacts:
(Too many to list here - please contact your own local media & press and also remember to contact influencers on YouTube, Facebook, Twitter, health-related forums and other social media)
National Media & Press Contacts:
Associated Press
450 West 33rd St., New York, NY 10001
Phone: 212-621-1500
General Questions and Comments: info@ap.org
Contact
Reuters
Reuters Building, 3 Times Square, New York, NY 10036
Telephone: 646-223-4000
Media Contacts
United Press International
1133 19th Street, NW, Suite 800, Washington, DC 20036
Telephone: 202-898-8000
How to contact UPI
List of editorial contacts by department
Executive contacts
ABC News
47 West 66th Street, New York, NY 10023
Phone: 1-212-456-7777 / 1-212-456-7700
Email forms for ABC news programs
CBS News
524 W. 57th St., New York, NY 10019
Phone: 212-975-4321
Email forms for all CBS news programs
CNBC
900 Sylvan Avenue, Englewood Cliffs, NJ 07632
Phone: 201-735-2622
Email forms for CNBC programs
CNN
One CNN Center, Atlanta, GA 30303
Phone: 404-827-1500
Email forms for all CNN news programs
Fox News
1211 Avenue of the Americas, New York, NY 10036
Phone: 212-301-3000
comments@foxnews.com
MSNBC
30 Rockefeller Plaza, New York, NY 10112
Phone: 212-664-2333
Feedback page
NBC
30 Rockefeller Plaza, New York, NY 10112
Phone: 212-664-2333
NBC News contact page
PBS
2100 Crystal Drive, Arlington, VA 22202
Phone: 703-739-5000
Phone: 703-739-5290
Email PBS Public
National Public Radio
1111 North Capitol Street, NE, Washington, DC 20002
Phone: 202-513-2000 / 202-513-3232
Contact form
The Los Angeles Times
202 West First Street, Los Angeles, CA 90012
Phone: 213-237-5000
General Contact
New York Times
620 8th Ave., New York, NY 10018
Phone: 212-556-1234
D.C. Bureau phone: 202-862-0300
General Contact Directory
Letters to the editor (for publication) letters@nytimes.com
Write to the news editors: news-tips@nytimes.com
USA Today
7950 Jones Branch Dr., McLean, VA 22108
Phone: 703-854-3400
Contact USA Today
The Wall Street Journal
1211 Avenue of the Americas, New York, NY 10036
Phone: 212-416-2000
Feedback form and contact information.
Letters to the Editor: wsj.ltrs@wsj.com
The Washington Post
1150 15th St., NW, Washington, DC 20071
Phone: 202-334-6000
Letters to the Editor: letters@washpost.com
Governmental Contacts:
Contact Your U.S. Senator:
https://www.senate.gov/senators/senators-contact.htm
Contact Your U.S. Representative:
https://www.house.gov/representatives/fi...esentative
Contact the White House:
https://www.whitehouse.gov/contact/
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com
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.
04-19-2022, 07:41 PM
(This post was last modified: 04-21-2022, 04:49 PM by Gideon.)
RE: Your CPAP data is being held hostage - ACT NOW!
First, let me state that OSCAR can currently (April 2022) read and present the encrypted DreamStation 2 data using the Alpha release and soon in the production release. OSCAR has no issues with data being encrypted, but the key should be readily and freely available to the CPAP user.
OSCAR is an acronym that stands for, Open Source CPAP Analysis Reporter. OSCAR provides for the viewing of the high-resolution sleep data that is generated by the CPAP and stored on the SD card. OSCAR converts this data to graph form allowing the user to view this data down to a breath by breath level. OSCAR is free to use and is compiled in formats that will operate on Mac, Linux, and Windows. OSCAR can be downloaded from https://www.sleepfiles.com/OSCAR/ . It is this information that enables you to provide data for discussion with your doctor and/or to view and optimize your personal therapy.
OSCAR is also used by many physicians and therapists who consult with patients, and by medical researchers comparing patient/machine responses across multiple platforms. OSCAR provides visual and statistical data details and enables comparisons across machine types and manufacturers, that are not available from proprietary manufacturer software and data products. Professionals who rely on OSCAR to provide research and to serve patient needs will lose this valuable resource if data becomes inaccessible, or only available through the manufacturer's data products.
The changes made by Philips in the DreamStation 2 are harmful to patient empowerment, making it more difficult for you to manage your own sleep apnea therapy.
So far the OSCAR Team has found three major changes made by Philips in the DreamStation 2 devices:
- The data on the SD card IS Encrypted purportedly to limit access to the data to clinical personnel ONLY and NOT the end-users, the people who have Sleep Apnea. As of April 2022, OSCAR can read this data.
- There are two levels of the DreamStation 2. First are the "Advanced" models. These are much more "user friendly" than the "NON-ADVANCED" models. The NON-ADVANCED models can easily be identified via their two-toned cases with blue bottoms. These "NON-ADVANCED" models truly limit what you can adjust.
- The tube temperature of some DreamStation 2 "NON-ADVANCED" models CANNOT be changed by the end-user. Why? When asked, a Phillips representative stated, "We are taking away more settings from the user in order to have the 'clinicians' take care of that". To our current knowledge the DreamStation 2 CPAP and DreamStation 2 Auto CPAP (NON-ADVANCED models) do not have a Providers Menu. Changes to most CPAP settings can only be set via Care Orchestrator Essence, which is not available to the CPAP user.
The above changes are at best disturbing. The "official" read access to CPAP data is via DreamMapper (Summary data and Compliance info only) for end-users or Care Orchestrator Essence (Detailed data similar to what OSCAR provides) ONLY for clinical personnel.
Item #1 speaks for itself. All detailed data is encrypted and as such is not available to the end-user from Phillips Respironics. (As noted above, OSCAR can currently access this information).
Item #3 outright says that Philips is taking away access to even basic humidification from the end-users.
Risks:
- This is a big one. This trend within Philips Respironics to make all new devices so that ONLY clinical personnel will have access to your medical data is growing.
- Philips Respironics has chosen to make some new devices so that ONLY clinical personnel will be able to change settings on the CPAP with access solely through Care Orchestrator, eliminating the Provider Menu. That appears to have been done on the DreamStation 2 (NOT ADVANCED) devices.
- Philips Respironics could conceivably change the encryption at any time on all DreamStation 2 devices.
- Other xPAP vendors could do the same. This would make all CPAP forums much less effective for forum users to understand their apnea wherever they may be.
If this attempt to keep data from actual patients spreads to other manufacturers, the patient-empowerment movement will come to a screeching halt, or at best be severely limited as to how we can help patients. OSCAR will be severely limited.
RE: Your CPAP data is being held hostage - ACT NOW!
To expand on the Philips Corp long-term strategy that works to monetize the data they collect from your medical devices, here is a longer version with a glossary to help interpret the motive and effect of their vision. Their plan is to work with their health systems "customers" (DMEs, equipment suppliers, clinics, physicians and insurance) to increase revenue by making consumers or patients more dependent on care managers to access solutions to their therapy issues. Philips will use therapy data to flag patient issues and refer them to care managers that subscribe (pay) for these referrals and recommended solutions. To achieve this, it is a clear objective of Philips Respironics to ensure patients will not have access to either data or settings, eliminating the self-help avenue that is the basis of the Apnea Board forum.
CPAP machines already exist that encrypt therapy data and in some cases require users to request any setting changes through their clinician. Users of Philips machines that use OSCAR to access their data for patient health information and optimization purposes, could have that capability removed at any time by Philips sending an over-the-air firmware update.
How do we know this outrageous denial of patient empowerment is true? Philips describes this in their corporate Philips Strategic Focus. These words of corporate vision thinly disguise an agenda that is already in motion to monetize your data by selling access to it, to your doctors and equipment providers.
I am not aware of any other company that is this aggressive in removing basic access to settings from its users. But if successful, this vision will become the model for all medical equipment that collects patient data that can be used to improve therapy efficacy and comfort. The problem is, the patient is blinded from using the information for their own benefit and must rely on care managers and the device manufacturer to learn of problems, issues and solutions...at a cost to be paid for by insurance or the patient for increased patient encounters.
Our concern is that patients and forum members will lose access to the data that enables therapy optimization with quicker and better results at no cost. This would be replaced by a system where data must be requested and delivered at some unknown time in the future. The manufacturers would use our data to sell potential solutions to care-givers. Data would be monetized by subscriptions from their customers and paid for by increased patient encounters.
We have little confidence that the actual patient experience will be improved. CPAP machines are frequently prescribed with ineffective default settings; even to patients that suffer from complex and central apnea, or more challenging pulmonary diseases that require more sophisticated therapy. This new strategic vision by Phillips Respironics means that problems from optimization to inappropriate therapy can only be identified IF your doctor subscribes to the manufacturers' services that will alert him to a problem and offer suggested solutions.
To understand this Strategic Focus, you must understand several terms:
Customer: Medical equipment providers, distributors, retailers, clinics, physicians
Stakeholder: Stock holders, corporate ownership
Medical Technology: Devices that produce, use and present efficacy data and the means of collecting it in the Cloud where it can be analyzed and monetized for subscribers to use to increase patient encounters and profits
Integrated Care Pathways: A strategy to cultivate income by monetizing patient data to develop more revenue by increasing patient dependence
Retail Trade Partnerships: Exclusive sales and marketing agreements to reduce choices to only distribute, sell, or promote Philips products from clinics, physicians, and retailers
Consultative Partnership Contracts: Agreements to provide data, analyses and business leads to subscribers
Monitoring: Data collected by devices and designed to enable visibility into a patient’s condition, virtually anywhere and any time, using subscription-based patient monitoring products and clinical decision support tools deliver increased patient encounters and solutions
Quintuple Aim: Better health outcomes, improved patient experience, improved staff experience, lower cost of care and helping people to take better care of their health at every stage of life; Or put another way-- improve stakeholder and customer financial results by using data available only through subscription to provide consultative solutions for patient issues.
To be completely fair, other manufacturers like ResMed also collect data and distribute it to subscribing care managers in order to achieve all of the service objectives that are described above in Philips' strategy. The difference is that so-far, other manufacturers do not intentionally encrypt data nor have they publicly expressed a plan to monetize the data (other than as a service that benefits both professionals and end-users). This contrasts with the Philips strategy of open hostility towards patients who want to retain control over their own medical data-- patients who desire to manipulate settings without professional supervision.
RE: Your CPAP data is being held hostage - ACT NOW!
I hope this thread will generate a response that will get the attention of all CPAP manufacturers!
To help spread the word, please spread the link to this thread - we've created a shortened URL for you to use on other websites - it links back automatically to this Action Alert thread-- simply tell folks to go to:
www.ApneaBoard.com/alert
Let's get involved, folks! Fight back by contacting as many people as you can!
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com
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.
04-23-2022, 05:17 PM
(This post was last modified: 04-23-2022, 05:34 PM by WakeUpTime.)
RE: Your CPAP data is being held hostage - ACT NOW!
It's easy to see why manufacturers would want to go that route eventually. Monetizing, securing, licensing, restricting and marketing that data could be valuable - and strategic. Others could be watching to see how Philips makes out. A strong response to Philips, from a large end-user base, could be very influencial in halting that outcome.
Philips doesn't likely care what I think, but I'd like to put this issue in the hands of other strategic and influencial persons and agencies that may likely make contact with Philips on the issue. Accessing my own data was simply lifesaving for me in those initial months and years. It would be better and easier to push back now rather than later.
Count me in for a few targeted contact e-mail letters!
NOTE: This should be so easy for current DS2 owners. You've got immediate motivation right now to slam Philips with "How come you've prevented me from accessing my own data with this new machine?!!!". Just like foam particle complaints, they'd have no choice but to store, group, count and monitor those complaints going forward. Many eyes will be on Philips going forward now. Justified complaints against Philips' aggressive, rude, insensitive, and intolerant actions have a lot more strength now.
RE: Your CPAP data is being held hostage - ACT NOW!
This is the Photobucket business model all over again, whereby companies you've entrusted with your personal data turn around and hold it hostage from you, its rightful owner. This is nothing less than ransomeware. 
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? 
04-23-2022, 09:49 PM
(This post was last modified: 04-23-2022, 09:54 PM by srlevine1.
Edit Reason: add physician pushback argument
)
RE: Your CPAP data is being held hostage - ACT NOW!
As long as the FDA demands certifications and registration of xPAPs as medical devices and device manufacturers treat vendors as customers servicing* us, the end-users, we will legally be held hostage to their proprietary hardware and software designs and competitive business practices.
What is really needed is a movement, spearheaded by non-profit organizations with lobbying clout (like AARP), to create and promote "right to know" legislation that provides data access to end-users similar to "right to repair" legislation which could force manufacturers to reveal proprietary information, repair manuals, and make parts, and special tools available. Legislation demanding a standardized XML-based data format for recording, analysis, and transmission.
Of course, the real clout lies with Medicare and other payors who could demand adherence to an open standard as a condition of payment. Again, this is a political matter requiring lobbying clout and legislation.
The only alternatives I see are to use and refurbish older machines or to develop an open-use machine like some of the solutions proposed as solutions to the shortage of respirators during the pandemic.
I suggest we start using the "right to know" verbiage in our communications.
Look for pushback from physicians declaring that providing access to settings could damage untrained and unwashed individuals.
* I use the term "servicing" in the same manner as a bull "services" a cow.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
RE: Your CPAP data is being held hostage - ACT NOW!
It is so messed up.
I travel to various places with my CPAP. Some have excess humidity; some are very arid. Some are hot; some are cold. It is imperative for me - as a sleep apnea patient, a legitimate human being - to be able to change my settings in order to accommodate that. This can vary by the day.
RE: Your CPAP data is being held hostage - ACT NOW!
With all that is going on in this world with politics, legacy media, covid, social media and technology, I feel like a lab rat. All I am is someone who the previous groups want to manipulate to fit their power agenda. America and the world are in trouble. In so many ways communist China seems to be the future of the direction that the world is going towards.
I am glad that I am older and my time on this earth is shorter. What is happening sickens me. What really concerns me is the future generation. MAY GOD PROTECT THEM!
GOERGE ORWELL and 1984 are here now.
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