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Comment by JoshTriplett | Hacker News Reader

Many of the vendors of medical devices in this area have extensive automated telemetry that isn't under the control of the patient, often even preventing the patient from accessing that data, or gatekeeping that access through healthcare providers. As you move forward into more advanced treatment options, do you plan to address this and keep the patient in control?

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Absolutely - there is no good reason a patient should be blocked from their data. It is rather surprising that it is common for resellers to block patient facing views of their data that manufacturers have engineered into their products.

> It is rather surprising that it is common for resellers to block patient facing view

Is it though?

To be clear I'm all for letting patients get access to their own data and think it should be required, but I totally understand why companies would limit their liability by locking consumers out of their own data.

Patients are notoriously bad at interpreting their own data and test results. That last thing you want are patients changing their own treatment because the misinterpret their own data and then blame the device.

Last thing I want is this completely insane liability system we have that somehow puts the responsibility for a person misinterpreting data on the data provider.

If I want, I can get access to all sorts of things from my medical provider that I’m not qualified to interpret.

Just by connecting Apple Health to my health care system, I can see every lab result, most of which I’m not qualified to interpret.

My brother had a CT scan, and upon request, got a DVD with the scan data and a viewer for that data.

If my healthcare provider prevented me from seeing this info, I’d find another provider.

Getting back to the core question: is it surprising?

I don’t think it’d be surprising in the consumer or enterprise spaces where lock-in is a feature. But I don’t think that automatically extends to healthcare, where such restrictions are extremely problematic, and threaten my ability to get care from my provider of choice.

(And to clarify, I don’t think this is good or acceptable for consumer/enterprise products either, but the implications there are different, where I might just choose another vendor - a choice I might not have for medical devices).

This seems like an American-centric view. I've heard in some other countries, patients have full control over their medical records, they take the records with them from doctor to doctor.

I primarily get medical care through Mercy, a large health system in the Midwestern U.S. I can see test results immediately through their online portal. At the top is this statement:

"We believe you have the right to see your results as soon as they’re available. However, this means you may see results before your provider does. In some cases, results can be serious or hard to understand. If this concerns you, you may want to wait a few days to hear from your provider or, after waiting, message your provider."

I have no problem with that and thing it is a great thing.

Came here to say this. And not just preventing patient access to the data, but locking the ability to change settings in a reasonable manner, without having to con$ult with a "doctor" (really an admin at the doctor's office) for each tiny increase in air pressure. It's one of the reasons I gave up on the whole CPAP thing.

Same, until I realized it's just a key sequence to get in to the machines.

For me it's hold two buttons down to reveal the settings. Navigate to the setting, change the setting. Done. Fisher-Paykel.

I think they lock this behind this setting because they don't want amateurs blowing out their lungs.

~liability~

I’m in favor of people being able to get the data from their machines, but letting users manipulate the prescribed CPAP settings related to pressure and flow? Someone is going to get killed.

Do you use a CPAP machine? It’s a simple device that blows air through your nose hard enough to keep the airway open. It doesn’t take an intelligent person to operate or adjust one. One would have to be one of them dumbest people in human history to cause injury with one, let alone kill yourself.

CPAP machines do have some danger: https://health.clevelandclinic.org/can-cpap-machines-increas...

Patients are in a far better position to manipulate their machines than doctors are. Doctors barely look at the data, maybe twice a year for literally 30 seconds. They meet with the patient for five minutes. A lot of patients are prescribed CPAPs from pulmonologists who don't specialize in sleep disorders and aren't even qualified in any meaningful sense.

I move around a lot so I've been to a bunch of doctors for apnea, and I assure you that I am better qualified than most of them to review my data and adjust my machine.

It's obscene. ResMed includes a SIM in their devices that uploads usage data to them. This isn't disclosed in any meaningful way to patients.

I have sleep apnea. Getting my CPAP was a life-altering event. It was also damn bloody expensive, even on insurance.

What I want now is a better CPAP at lower cost, and access to the data it gathers, and the ability to share that with my health care professionals of choice.

Untrue. With most machines, you can download a single application to pull data. You only need to stick an SD card in the SD card slot.

https://www.sleepfiles.com/OSCAR/

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