[dheera]

I have an ICD (implanted cardioverter-defibrillator) to save my life if my heart stops.

I was also given a proprietary box that sits at home, reads data from it and sends it to my cardiologist over a cellular network, on demand. As part of periodic remote checkups I'm supposed to sit next to it, press the button, which causes it to read data and send any abnormal heart rhythms it detected (via cellular network), whether it treated it (via a shock, in which case I would have known anyway) or whether the abnormal rhythm resolved itself with no treatment (in which case it's worth it that they check out what it picked up). I have to do this about 2-4 times a year.

Every time I hit the button I'm charged $200. Even if there are ZERO events. 90%+ of the time there are zero events.

There is NO interface provided to me where I can read the data directly. There is no way for me to read the device on my own, see zero events, and inform my cardiologist that there are no events and that there is nothing new to diagnose.

I hate this medical system. The device is great for saving my life but I want access to read its data without being charged.

[mtlmtlmtlmtl]

That's appalling and should be illegal.

I wish more programmers would refuse to contribute to this kind of exploitation.

[rqtwteye]

I work in medical devices and it's extremely hard as a dev to figure out what's because of some regulation and what's just for profit.

[graphe]

If it was illegal he might be dead. If he refused, he could be dead. Is that a better world?

[mtlmtlmtlmtl]

No, if it was illegal he'd have access to his data. I'm not saying medical equipment should be illegal.

And to be clear, I wasn't saying he should have refused treatment. I was saying I wish more programmers would refuse to help develop exploitative software like this.

[StableAlkyne]

It might not have even been the programmers of the device that chose to do this. It was very likely some manager somewhere who saw the dollar signs when they realized they could collect rent.

[mtlmtlmtlmtl]

Programmers implemented it though. And they knew exactly what they were doing, too.

[graphe]

I don't think he had a choice.

If you had a good doctor that liked da Vinci robotic surgery, versus another one that did raven II would that factor more than the reputation of the doctor? Programmers who make life saving software are good in my opinion, even if the company they work for wants to make money.

I think we should strive for the best features, and also be grateful for "fascist trailblazers". Shockley was known to be an awful boss but our transistors started there and we are better off for it. Body warming methods were created by Nazi scientists experimenting unethically. These are the 2nd step, at least the profiteers show it's doable and the drive for profit made it in the first place.

[alexvoda]

I would argue that the discoveries would have happened anyway sooner or later even without unethical assholes. And for every example of a step of progress accelerated by them there is an example of a step of progress held back by them.

We do not need the monsters to make progress. Don't try to justify their inexcusable actions in some myopic utilitarian way.

[mtlmtlmtlmtl]

Did you seriously just use the holocaust as an example of successful R&D?

[eimrine]

It was successful at least in R part of R&D by any definition of "successful" and "research".

[subw00f]

This is nuts. Who charges you? Is it the company that makes these devices? What if you want a different “provider”?

[dheera]

Stanford Healthcare charges me for "general classification" just for a nurse to open up their computer and see that there are zero events.

Boston Scientific, the device maker, does not have an interface for patients, they only send data to hospitals directly.

I'm not currently willing to switch to a different ICD because Boston Scientific's ICD has successfully saved my life 3/3 times in out-of-hospital situations and 2/2 times during in-hospital testing where they induced ventricular vibrillation in controlled testing and I'd rather not risk trying something different. Insurance wouldn't pay for an extra surgery deemed unnecessary, anyway.

I could switch healthcare providers, but I'm not sure if the others in my area are better at cardiology.

[mixmastamyk]

I see you have your hands full, but perhaps a class action lawsuit should be in order.

[tredre3]

> Stanford Healthcare charges me for "general classification" just for a nurse to open up their computer and see that there are zero events.

Okay so having access to the data wouldn't change a thing, surely you'd be charged even more if you wanted to talk directly to the cardiologist to do a report yourself, as you said?

> inform my cardiologist that there are no events and that there is nothing new to diagnose

[izzydata]

This is giving me feelings similar to that movie repo men where you had to rent life saving organs and they could come repossess them at any time.

[bowsamic]

That is genuinely insane