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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

#201

Post by denton-scratch »

bpodgursky wrote: post #4

I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen. These laws, while well-intentioned, kill people. If you think th…

> These laws, while well-intentioned, kill people.

Rubbish. There's a difference between people dying because some startup can't cheaply get access to medical data, and someone being killed.

> But there is very real blood on your hands

Sounds like you work for a health-data startup? You're rather handy with the guilt-trips you're slinging around.

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

#202

Post by denton-scratch »

TZubiri wrote: post #8
ChrisMarshallNY wrote: post #6

Earlier quoted context omitted.

> These laws, while well-intentioned, kill people. So does medical fraud, and it's not well-intentioned at all. Just sayin'. I have almost no faith at all in the types of folks that found and run tech companies, these days. They have proven, over, and over, and over again, that They. Just. Can't. Be. Trusted. If the tech industry were to create an ethics board, with real enforcement teeth (like the Bar Associations,…

So do guns

Heh. Open health data doesn't kill people, med-tech bros do. /s

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

#203

Post by kerkeslager »

fallingknife wrote: post #157
darrin wrote: post #151

Earlier quoted context omitted.

It would be interesting if all research and advances based on PHI were automatically public domain. Sort of like the GPL - any derivatives, treatment discoveries, etc. must also be open. There would probably be too many loopholes to cover effectively, but it's a thought.

Then there would be no research and advances. Nothing is free.

So are you being paid to comment? It amazes me how many people are motivated without profit to insist that nobody is motivated by anything other than profit.

Obviously funding is needed: funding which already comes from government in many cases. It's just that now that research funding gets handed to execs who then use the data to make more money, and only have to use the data to help people if it happens to coincide with their business strategy. Having the data public just means that the people working on it are motivated more by helping people and less by acquiring data to leverage for profit, which is a feature not a bug.

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

#204

Post by mo_42 »

denton-scratch wrote: post #190
mo_42 wrote: post #12

Earlier quoted context omitted.

> Managed by "gematik GmbH", a company with limited liability. Because why should the entity responsible for all medical records have some liability. I think it doesn't really matter in what form the government appears. It's still the government and so its rules apply.

> I think it doesn't really matter in what form the government appears. It's still the government and so its rules apply. If it's a "limited company", that means it's liability is limited to shareholder capital. It's going to have to have an awful lot of capital if it's going to be able to compensate the entire population for mishandling their data. Also, if it's a limited company, then the shareholders can sell thei…

https://www.bundesverfassungsgericht.de/SharedDocs/Entscheid...

Translation using Deepl:

Leasts on the Judgment of the First Senate of February 22, 2011 - 1 BvR 699/06 - Mixed-economy enterprises controlled by the public sector in private-law form are subject to a direct fundamental-rights obligation in the same way as wholly state-owned public enterprises organized in private-law forms.

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

#205

Post by rangerelf »

cloverich wrote: post #159
EatingWithForks wrote: post #131

Earlier quoted context omitted.

HIPPAA doesn't just cover, say, the spread of tuberculosis. It also bars things like collecting a panel of homosexuals, transgenders, women who are on birth control or have abortions, people seeking treatment for schizophrenia or a personality disorder or addiction, or just fat poor smucks that don't adequately treat their diabetes. Any number of highly stigmatized things or things that Palantir would love to own to…

What I'm saying is, the protections it provides are overstated, and the damage it does is (greatly) understated. I am not saying lets discard privacy protections all together. I am saying lets not let bad implementations of good intentions convince us to be ok with an extremely expensive system that is not very useful and results in a great deal of physical and economic harm. > I would start freaking the fuck out if…

> So maybe we should consider re-working HIPPA so the information can be used by the good guys instead.

Who are these "good guys" you speak so highly of? CA gov? FL gov? Federal gov? FBI? Planned Parenthood? Some church?

I'm curious about these mythical "good guys" that you, the NRA, and other people with an agenda repeatedly handwave about.

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

#206

Post by cloverich »

genocidicbunny wrote: post #176
cloverich wrote: post #169

Earlier quoted context omitted.

> the Tuskegee Syphilis experiments The primary issue with this was the lack of ethical research, not the privacy of medical records. In fact the opposite argument could be made, with a more open and connected system, we could likely glean such information without the trial in the first place.

Using medical records without direct informed consent is unethical, so the there's not nearly the distinction you're trying to make there.

If you view letting infections play out in people because "We view black people as sub-human" is or can be equivalent to sharing medical records for patient care, research, or outbreak surveillance, and that there isn't a meaningful distinction between those categories, it is unlikely we could have a productive conversation on the topic.

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

#207

Post by cloverich »

rangerelf wrote: post #205
cloverich wrote: post #159

Earlier quoted context omitted.

What I'm saying is, the protections it provides are overstated, and the damage it does is (greatly) understated. I am not saying lets discard privacy protections all together. I am saying lets not let bad implementations of good intentions convince us to be ok with an extremely expensive system that is not very useful and results in a great deal of physical and economic harm. > I would start freaking the fuck out if…

> So maybe we should consider re-working HIPPA so the information can be used by the good guys instead. Who are these "good guys" you speak so highly of? CA gov? FL gov? Federal gov? FBI? Planned Parenthood? Some church? I'm curious about these mythical "good guys" that you, the NRA, and other people with an agenda repeatedly handwave about.

> Who are these "good guys" you speak so highly of

Anyone who wants to use the records to improve healthcare. There are plenty of these folks in the medical field, based on my time in medical school and brief stint in a medical research group.

I would also include anyone involved in your direct care, i.e. the front-desk personal at the various doctors offices we visit, who have no way of easily obtaining your medical history if you aren't already in their system.

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

#208

Post by rocket_surgeron »

JohnFen wrote: post #184
rocket_surgeron wrote: post #109

Earlier quoted context omitted.

You are probably like me. To me there is no medical information of any kind that could embarrass or "stigmatize" me or anyone else. But the vast majority of people are paralyzed by fear that someone might find out they have hemorrhoids. Others live in a delusional state of paranoia where "duh gubmint" will use the info against them not realizing that any entity, governmental or otherwise, willing to do so will just i…

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

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

#209

Post by Nullabillity »

scarby2 wrote: post #63
iandanforth wrote: post #37

Earlier quoted context omitted.

[flagged]

the amount of people who think that social stigma cant be changed is beyond me. This is one of those cases where when we open things up we realize that just about everyone has or does things that are stigmatized and we have no choice but to stop stigmatizing them, the secrecy and shame are self-reinforcing.

Eventually perhaps, but is it fair to demand that everyone subjects themselves to that in the years or decades that that process takes?

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

#210

Post by tryptophan »

cm2012 wrote: post #57
w0m wrote: post #53

I honestly think the the taboo-nature of medical records kills people in significant numbers. More-so than anything else, the focus should be on preventing pre-existing conditions from being able to affect individuals negatively than adding hoops for the individual to access their own gated personal records (Moving between hospital systems today can be an absolute nightmare in the states).

100%. HIPPA is the reason doctors offices still use fax machines and refuse to update patients with emails.

The funny thing is that fax is completely unencrypted, allegedly HIPAA requirement. Security through obscurity.
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