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

[sonicboom]

Someone in San Diego or who knows of or has access to Dr. Eric Topol should alert him to this issue.

Per Wikipedia, "Dr. Topol is an American cardiologist, scientist, and author. He is the founder and director of the Scripps Research Translational Institute, a professor of Molecular Medicine at The Scripps Research Institute, and a senior consultant at the Division of Cardiovascular Diseases at Scripps Clinic in La Jolla, California. He is editor-in-chief of Medscape and theheart.org. He has published three bestseller books on the future of medicine: The Creative Destruction of Medicine (2010), The Patient Will See You Now (2015), and Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again (2019). He was also commissioned by the UK 2018–2019 to lead planning for the National Health Service's future workforce, integrating genomics, digital medicine, and artificial intelligence.

In 2016, Topol was awarded a US$207 million grant from the National Institutes of Health to lead a significant part of the Precision Medicine Initiative (All of Us Research Program), a one million American prospective research program. This is in addition to his role as principal investigator for a US$35 million grant from the National Institutes of Health to promote innovation in medicine and the education and career training of future medical researchers."  [citations omitted]

Dr. Topol, is one of the nation’s top physician leaders. He posits that the patient has historically been the single most unused person in healthcare. The good news is that we are now seeing a seismic shift as smartphones (and SD cards with great software to unlock critical CPAP data) are empowering patients with their own data, giving them unprecedented control over their own healthcare. As a result, the doctor-patient relationship is being radically altered. That’s why it makes absolutely no sense that Philips-Respironics has introduced data encryption that turns the clock back years if not decades by effectively preventing patients from accessing, viewing and analyzing their own CPAP data. In fact, it’s stunning that Philips would be increasing antiquated, paternalistic restrictions on patient involvement and at a time when the rest of the world is focused on bringing data and control to consumers.

Because Dr. Topol is part of the patient empowerment movement and has tremendous credibility, he may be an asset to our community.

[mesenteria]

Thanks, sonicboom, great info you have posted there. 

[midwestguy]

(Been chewing on this for a while. Here are some thoughts.)

For convenience, let’s call the the group of manufacturers,

physicians, DMEs, clinicians, and others who support encryption

”the monetizers.”

Any actions, however sincere and well-intentioned, ignore one fact:
we are not the monetizers’ customers. My skepticism says that any
such efforts are naive and wasted effort.

Let’s start by looking at ways we can influence this situation.
There are two.

First, economic ways: We’ll boycott every manufacturer whose
devices encrypt its data.

But a device requires a doctor’s order. They can specify in detail the make,
model, and options. And there’s the phrase “Dispense As Written.”
That means no substitutions are permitted. If the physician is part of 
the monetizers, whose devices will he prescribe?

Second, legislative ways: We’ll introduce and support legislation enforcing
a patient’s rights to their own data. This is at the heart of the issue.

Legislation requires time, money, and focus. It’s vital to find allies who
will promote this agenda. The number of xPAP users who want unencrypted
data is minuscule compared to the people who want to repair their own
tractors, need original parts at reasonable prices without restrictions, and so on.
We need to join the many who are in this fight. How do we reach and join them?

We've seen some examples here of people who can organize and lead this effort.

An esteemed representative from this group should contact them and begin

to get other interested organizations involved. We need numbers and clout.

The monetizers have no interest in us now. They will become very interested
once our efforts become known.

midwestguy (aka Harv)

[cathyf]

Harv, I'm glad you are here, because I find your experience something right on target.

You were given a cpap machine which was defective. Perhaps because of a malfunctioning sensor, your machine did not detect leak. The proper functioning of a ResMed machine requires that the machine measures leak continuously and adjusts airflow to deliver the required pressure. (Note that the first and last letters of "cpap" stand for "Continuous" and "Pressure". This is THE core function of a cpap machine!)

Your machine was behaving erratically and shutting itself off.

Your machine did NOT flag any errors at all. These machines have extensive reporting capabilities, front screens that report, and they communicate with ResMed servers every day. In order to go from raw data to reported data, software runs on the machine, software which is engineered and developed by human beings. That software was NOT programmed to recognize the malfunctions your machine was exhibiting.

The ONLY way to figure out that your machine was malfunctioning was that you read your data card, and the data recorded there gave a faithful recording of the specific malfunctions.

CPAP machines treat SLEEP apnea, and so they are used by patients who are ASLEEP. Any time a medical device is used on an unconscious patient, this requires a high degree of trust that the device is going to perform properly. As the adage goes: "Trust, but verify." In this context "verify" means that the patient must have access to the data.

Your experience is real, not hypothetical.

[midwestguy]

cathyf,

Thanks for your response. My hope is that one of our esteemed representatives will
help us organize and lead a legislative effort. In the context of the current Roe v. Wade
earthquake, “My Body, My Data” seems appropriate.

Best,

Harv

[JJJ]

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;

The legal term here is 'adhesion contract,' and if the court rules it to be an adhesion contract the party who had no choice has the option of refusing to comply with its terms, i.e., the contract is 'voidable.' If the forced party does nothing the contract continues.
The problem is that, as a gross generalization, courts refuse to rule that a contract is an adhesion contract. You had to have been really, really forced, like no choice whatsoever, almost a gun to your head. Here I don't see that - you had many other products to chose from where the data was not encrypted.

[DaveL]

Someone in San Diego or who knows of or has access to Dr. Eric Topol should alert him to this issue.

Per Wikipedia, "Dr. Topol is an American cardiologist, scientist, and author. He is the founder and director of the Scripps Research Translational Institute, a professor of Molecular Medicine at The Scripps Research Institute, and a senior consultant at the Division of Cardiovascular Diseases at Scripps Clinic in La Jolla, California. He is editor-in-chief of Medscape and theheart.org. He has published three bestseller books on the future of medicine: The Creative Destruction of Medicine (2010), The Patient Will See You Now (2015), and Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again (2019). He was also commissioned by the UK 2018–2019 to lead planning for the National Health Service's future workforce, integrating genomics, digital medicine, and artificial intelligence.

In 2016, Topol was awarded a US$207 million grant from the National Institutes of Health to lead a significant part of the Precision Medicine Initiative (All of Us Research Program), a one million American prospective research program. This is in addition to his role as principal investigator for a US$35 million grant from the National Institutes of Health to promote innovation in medicine and the education and career training of future medical researchers."  [citations omitted]

Dr. Topol, is one of the nation’s top physician leaders. He posits that the patient has historically been the single most unused person in healthcare. The good news is that we are now seeing a seismic shift as smartphones (and SD cards with great software to unlock critical CPAP data) are empowering patients with their own data, giving them unprecedented control over their own healthcare. As a result, the doctor-patient relationship is being radically altered. That’s why it makes absolutely no sense that Philips-Respironics has introduced data encryption that turns the clock back years if not decades by effectively preventing patients from accessing, viewing and analyzing their own CPAP data. In fact, it’s stunning that Philips would be increasing antiquated, paternalistic restrictions on patient involvement and at a time when the rest of the world is focused on bringing data and control to consumers.

Because Dr. Topol is part of the patient empowerment movement and has tremendous credibility, he may be an asset to our community.

@sonicboom

I am so impressed with this post! I look forward to seeing future posts.

In Ontario Canada sleep docs have tried to maintain complete control.  Medical treatment of OSA has been extremely stressful and ineffective for me.

A salute to you and others who contribute so much to this wonderful forum.

DaveL
West of Toronto.  A little bit.

[SuperSleeper]

Just a reminder to folks - this Action Alert is a bottom-up effort.  In other words, the idea is for each individual to contact as many influencers as they can in order to get the word out and make a difference.

Please do not assume that any Apnea Board staff member will be assuming some sort of leadership role in this effort.  If someone wants to take the lead in a particular portion of this effort, that's awesome.  I encourage you to do so certainly!  But the main thrust of this is to have as many individual patients contact the various parties in order to get the attention of decision-makers and the press/media.

If you believe someone would be an asset to this effort, please contact them yourself and invite them to participate here and help develop new ideas or strategies to counter this encryption trend.   Apnea Board is simply being used as the venue for discussing the options.

[SuperSleeper]

Just wondering, has anyone contacted some of these companies or media outlets?  Wondering how it went with your effort?  I got a few replies, but mostly a "thanks for contacting us" type form letter.

[srlevine1]

Just wondering, has anyone contacted some of these companies or media outlets?  Wondering how it went with your effort?  I got a few replies, but mostly a "thanks for contacting us" type form letter.

Same here. L.A. Times wanted specifics, how many people are hurt, and how much this costs  CPAP users. Without a compelling pitch, it was thanks but it doesn't meet our editorial requirements at this time.