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“Last March, Tony Schmidt discovered something unsettling about the machine that helps him breathe at night. Without his knowledge, it was spying on him.

From his bedside, the device was tracking when he was using it and sending the information not just to his doctor, but to the maker of the machine, to the medical supply company that provided it and to his health insurer.”

propublica.org/article/you-sno

Via @gilles

@aral @gilles

Thankfully Philips ones used by some patients at work do not connect to the network (I check for anything like this!), it also looks like the bizzare fiasco of USA healthcare funding structures is a big driver towards demand for such tech.

Such devices would also be undesirable at my work (or anywhere with multiple patients); there simply isn't the bandwidth for all of that and wifi is only provided for patients entertainment devices, not safety critical stuff!

@vfrmedia @gilles At least not yet but I wouldn’t put my faith in Philips or any other multinational doing the right thing unless forced to by regulation. The head of design at Philips is my friend and together we (unsuccessfully) tried to get the top management (VPs) to commit to ethical design a few years ago. I presented to them myself. Last I know, the only impact we had was that they set up a blockchain lab. Not the result I was after.

@aral @gilles

I definitely think regulation is a factor here; these devices have to be approved by MHRA in the UK (and presumably similar agencies elsewhere), and there has also been a lot of backlash from the NHS working with Google (they were even pulled up by the Information Commissioner for this) and concerns over electronic patients records (to the extent that I need to sign a further consent form if I want to book online appointments with my own GP)

@aral @gilles I would LOVE to have a conversation around delivering such products in healthcare. At ouva.co, we are pushing a product that can detect falls of patients at risk among other things. We are piloting it in Netherlands (GDPR). We will, for sure, want to partner to review data and improve the system's detection capabilities. We have always been proud of taking the ethical approach however, keeping that in check day to day is another beast.

@aral
If that's not an attack on cyborg rights, I don't know what is! Maybe we need to come together and design an open-source CPAP machine. Especially if we can make it far cheaper, while maintaining effectiveness, comfort, and safety.
@gilles

@kd0bpv
@aral @gilles

What a phenomenally brilliant idea. As someone who cannot survive without one, I would love to see this.

It would be great to figure out how to decentralise it too. However, as the discussion points out, insurance corps, et al. would not be so keen on it. Though, for me, that's all the more reason to do so.

@redandgreen14
Exactly. The whole point is to cut the need for insurance out entirely, if possible; and ensure privacy by not even collecting data.
@aral @gilles

@kd0bpv

I could be misunderstanding you; however not all data collection is bad. Rather, it's who has access to it and what it's being used for is what's questionable.

Quite a bit of the data collected by a CPAP machine can be important for the long term health of an apneatic.

Even in the several hours since reading your toot, I've come up with ideas how this could be dramatically improved.

@aral @gilles

@redandgreen14
Good point. Maybe an optional module that can do data collection, and can be completely removed by the user without affecting any of the other functions of the system? Have it store the data it collects to a standard, ubiquitous storage, like microSD cards.
@aral @gilles

@aral @gilles This would be absolutely crazy, except, you know, your health insurer is paying for the machine and would like to know you're using it, the people making the machine want to know that it works, the supplier wants to let you know if you're going to need replacement supplies,etc. if this passes for "spying on you", then i've lost all faith in humanity

@khuxkm @gilles Given limited time and energy, I fail to comprehend how you can spend it defending corporate interests instead of the rights of the people being negatively impacted by them.

@aral @gilles ...I'M ONE OF THE PEOPLE BEING "NEGATIVELY IMPACTED" YOU ABSOLUTE DINGUS! I'm perfectly fine with the company that makes my doctor's visits only cost $20 knowing that I'm using it and that it works.

@khuxkm @gilles @aral and looking for ways to not cover you

"Health insurers use a variety of tactics, including surveillance, to make patients bear the costs."

@mexpat yes. if you try to make your insurer pay for a machine you don't use they charge you for it. shocking.

@khuxkm "Experts who study health care costs say insurers’ CPAP strategies are part of the industry’s playbook of shifting the costs of widely used therapies, devices and tests to unsuspecting patients."

@mexpat go ahead, keep quoting at me as if I didn't read that awful excuse for journalism. :P again, they pay lots of money for it. if you don't use it, you've made them waste money. maybe the reason no insurance company that treats its policyholders "ethically" exists is because it's unviable to live up to the demands of people who don't want anybody but their doctor knowing that the machine is being used. maybe all the companies like that went out of business a long time ago. food for thought.

@aral
@gilles
This isn't hugely shocking. The GP or pulmonologist or respiratory therapist should inform them of that. At least they did for me. I was told I had no choice to opt out; it was accept it or not get the machine.

It wasn't phrased that way, it was more like: "It enables your physician & care team to better monitor your health so you don't have other health problems from improper use - 1/2

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