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Do no harm petition: Don't give big tech access to our medical records

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Re: Do no harm petition: Don't give big tech access to our medical records

#221

Post by dheera »

JohnFen wrote: post #182
dheera wrote: post #132

Earlier quoted context omitted.

Yet they leak my medical records to debt collectors every single time, for debts that aren't even mine (when insurance refuses to pay for what they should).

I hear you, but those debts are actually yours. When you get treatment, you're assuming responsibility for the bill. The insurance company is technically reimbursing you, not assuming your debt.

Assuming responsibility for tens of thousands of dollars just to continue existing is NOT how it's supposed to work.

Also, I expect insurance companies to honor their contracts.

Re: Do no harm petition: Don't give big tech access to our medical records

#222

Post by sirspacey »

arp242 wrote: post #89
sirspacey wrote: post #85

Medical records are already aggregated by Big Tech companies - they are called “medical billing.” I’d much prefer a different set of companies having access to records at scale for the purposes of improving outcomes, which they will never care about (having seen it first-hand).

Not in Europe. This story is about Europe.

Here are 20 in Europe: https://www.outsourceaccelerator.com/guide/top-medical-billi...

Re: Do no harm petition: Don't give big tech access to our medical records

#223

Post by nradov »

jimbob45 wrote: post #161
iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Couldn't agree more. Until you work in the healthcare field, you don't realize how much time and energy is wasted following HIPAA protocols. The doctor can receive your results, know your results, and still force you to come in because they can't tell you your results over the phone per protocol. Europe gets to use their free and open medical data freely for research. The US gatekeeps that information. It's a huge co…

There is nothing in HIPAA which prevents doctors from telling patients their results over the phone. They might not be able to leave voice mail with those results unless you specifically consented to that. They can also ask the patient for additional information during a phone call to verify it's really them and not someone else who answered the phone. For particularly sensitive test results, like say an HIV diagnosis, doctors might sometimes ask the patient to come for an in person visit so that they can explain everything in context and arrange an appropriate treatment plan.

Sometimes people blame HIPAA for all sorts of random stuff which has no connection to the actual law.

Re: Do no harm petition: Don't give big tech access to our medical records

#224

Post by JohnFen »

rocket_surgeron wrote: post #208
JohnFen wrote: post #184

Earlier quoted context omitted.

> To me there is no medical information of any kind that could embarrass or "stigmatize" me or anyone else. The problem isn't being embarrassed. The problem is suffering real world consequences for certain types of medical treatment, such as problems getting work, renting housing, etc.

> The problem is suffering real world consequences for certain types of medical treatment, such as problems getting work, renting housing, etc. Fix that, then? I keep hearing about all of these nightmare scenarios, dreamed up by paranoiacs. I submit. You are right. Fix THOSE problems instead of killing people. I'm agreeing with you. What you said happens. We must fix that. If things are that bad, the entities inflict…

> I keep hearing about all of these nightmare scenarios, dreamed up by paranoiacs.

Not at all. These are all things that used to be pretty common. That's why medical privacy laws were enacted.

> Fix THOSE problems instead of killing people.

That would be ideal, yes. But nobody has figured out a way to do that.

BTW, I don't think your phrasing is helpful to your cause. It implies it's a black-and-white issue when in reality it's a very complex issue with a ton of nuance.

People die as a result of the lack of medical privacy too, after all.

> the entities inflicting these consequences don't care about medical privacy anyways, right?

No, they don't. But they do care about the huge fines and other legal consequences they risk by not adhering to the law.

Re: Do no harm petition: Don't give big tech access to our medical records

#225

Post by JohnFen »

dheera wrote: post #221
JohnFen wrote: post #182

Earlier quoted context omitted.

I hear you, but those debts are actually yours. When you get treatment, you're assuming responsibility for the bill. The insurance company is technically reimbursing you, not assuming your debt.

Assuming responsibility for tens of thousands of dollars just to continue existing is NOT how it's supposed to work. Also, I expect insurance companies to honor their contracts.

> is NOT how it's supposed to work.

I could not agree more. This problem absolutely ruins lives. I've seen people who've suffered terrible injuries beg not to be taken to the hospital because it would result in devastating financial consequences.

> I expect insurance companies to honor their contracts.

I agree with this as well. But that's a separate issue than who is legally responsible for the debt.

Re: Do no harm petition: Don't give big tech access to our medical records

#226

Post by JohnFen »

mindslight wrote: post #200
JohnFen wrote: post #182

Earlier quoted context omitted.

I hear you, but those debts are actually yours. When you get treatment, you're assuming responsibility for the bill. The insurance company is technically reimbursing you, not assuming your debt.

That's certainly the bullshit narrative the billing department vampires want to push on you (the whole medical system revolves around punting responsibility on to someone else). But very rarely when you receive medical services is an actual contract being formed. Contracts require defined consideration, and some arbitrary numbers pulled out of a hat after the fact doesn't meet that bar.

That's the sort of case that needs to be made to a judge in the course of a lawsuit against the provider, then.

Listen, I'm not saying that this is ethically or morally right. I'm just saying that's the way things actually are (in the US).

Re: Do no harm petition: Don't give big tech access to our medical records

#227

Post by cloverich »

nradov wrote: post #187
cloverich wrote: post #96

Earlier quoted context omitted.

> Very many things doctors need to be aware of to diagnose conditions have significant social stigma... the risk is too great for any individual Very many things doctors need to be aware of, because the patients life depends on it, are left out when patients move between specialists and physicians, which happens all of the time. Outbreaks of viral and bacterial illnesses result in thousands of people independently ch…

That is totally wrong. There is nothing in HIPAA which would prevent healthcare providers from reporting infectious disease outbreaks to public health agencies. In fact, under some circumstances they are actually required to report. https://www.cdc.gov/nndss/about/index.html And it's not "HIPPA". For some reason, people who are deeply ignorant about what the law actually does also seem to get the acronym wrong. https…

> There is nothing in HIPAA which would prevent healthcare providers from reporting infectious disease outbreaks to public health agencies.

I see. So if three patients visit three separate physicians (with three separate healthcare systems) with the same illness (outbreak), these records may be aggregated to detect the outbreak? I was under the impression this kind of thing was not possible, or very difficult / limited, and would require some kind of patient authorization, and that HIPAA played a role in this.

(I expect this exists for known serious things like Ebola, but was thinking more directly about things like strep or typical viruses in a school. It seems like the outbreak information is put together after the fact, or after it gets grossly bad)

> For some reason, people who are deeply ignorant about what the law actually does also seem to get the acronym wrong.

Probably that HIPPA reads more like a word than HIPAA.

Re: Do no harm petition: Don't give big tech access to our medical records

#228

Post by voldacar »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

What if you don't want other people viewing your medical data

Re: Do no harm petition: Don't give big tech access to our medical records

#229

Post by mindslight »

JohnFen wrote: post #226
mindslight wrote: post #200

Earlier quoted context omitted.

That's certainly the bullshit narrative the billing department vampires want to push on you (the whole medical system revolves around punting responsibility on to someone else). But very rarely when you receive medical services is an actual contract being formed. Contracts require defined consideration, and some arbitrary numbers pulled out of a hat after the fact doesn't meet that bar.

That's the sort of case that needs to be made to a judge in the course of a lawsuit against the provider, then. Listen, I'm not saying that this is ethically or morally right . I'm just saying that's the way things actually are (in the US).

Why would you proactively sue a provider over a billing issue? You mean a lawsuit from the provider, trying to substantiate the debt they claim you owe?

I've no doubt that there is some assortment of corrupt laws bought by the medical industry that have enabled these blatantly abusive billing practices. But until shakedown victims actually force the issue and publicize it, then those corrupt laws continue to avoid scrutiny.

Re: Do no harm petition: Don't give big tech access to our medical records

#230

Post by Woodi »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Btw. I read somewhere "they" already have a lot of data.

> With easy and ready access to medical data we could be decades ahead

So make it ! On premises. Pay for helping in that. Do not pay for storage and cpu in clouds ! And don't be naive about what good and progress "they" can bring to medicine. They will promise then stall as much as possible and you will be paying for not deleting your precious data. Or accessing your own data :> And watching like your data are published and sold on black markets...

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