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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

#61

Post by iandanforth »

dmbche wrote: post #18
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 are your thought on privacy then? Shouldn't my records be my own business?

I reject the framing. It's about responsibility vs selfishness and fear. Medical information is a byproduct of something you do anyway that can save lives. It is our responsibility to make it available. If you want to opt out, fine, but basic decency demands that as a society we get over our collective hangups and make this information available.

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

#62

Post by croes »

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…

>With easy and ready access to medical data we could be decades ahead of where we are today.

And the people could be in big trouble because this data was stolen or is used against them.

On top of that it isn't even guaranteed that we were decades ahead.

Many of the big data promises didn't work out. Remember IBM's Watson?

>but the upside is just so much larger than the harms.

How do you know?

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

#63

Post by scarby2 »

iandanforth wrote: post #37
freeone3000 wrote: post #33

Earlier quoted context omitted.

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…

[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.

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

#64

Post by systemtest »

iandanforth wrote: post #43
boring_twenties wrote: post #22

Earlier quoted context omitted.

> upside is just so much larger than the harms Or more importantly, the harms are to me, and the upsides are to you, so who cares?

You're correct in pointing out that people are inherently selfish, however one major purpose of collective government is to do those things which are necessary and not always in-line with selfish motivations. Just as most Americans would be horrified to have their salary posted publicly for fear of stigma, jealousy, reprisals etc, Norway has demonstrated that those fears are unfounded, and salary data doesn't even ha…

What I earn and what my assets are is nobodies business other than the government. That is not selfish, and I am not American.

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

#65

Post by michaelmior »

ClumsyPilot wrote: post #45
freeone3000 wrote: post #33

Earlier quoted context omitted.

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…

> many things doctors need to be aware of to diagnose conditions have significant social stigma some are illegal - think threating drug overdose

In some jurisdictions, this not always the case. One example is the "Good Samaritan" law in California[0] which provides some protection patients seeking medical treatment for an overdose.

https://www.wingerdenlaw.com/blog/2020/02/can-you-be-charged...

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

#66

Post by ShowalkKama »

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).

it's about europe. You don't need to "switch hospitals" (at least in my country).

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

#67

Post by genocidicbunny »

PragmaticPulp wrote: post #50
boring_twenties wrote: post #22

Earlier quoted context omitted.

> upside is just so much larger than the harms Or more importantly, the harms are to me, and the upsides are to you, so who cares?

You don’t think you benefit from medical research?

Oh sure, but you know, I also probably benefited a little bit from the Tuskegee Syphilis experiments, and heck, if nuclear war ever comes, the things learned from keeping Hisashi Ouchi alive after his radiation expose, will probably help too.

Doesn't make them any less fucking wrong.

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

#68

Post by judge2020 »

dmbche wrote: post #47
judge2020 wrote: post #21

Earlier quoted context omitted.

I trust Google's internal user data access controls infinitely more than I do a random hospital's.

It's not a random hospital - it's your hospital. There are many governmental bodies that are there only to watch Hipaa violations, and if your data is used wrongly you can sue for damages. Google is a private company with no oversight.

For things like this[0], the medical companies and google operating on the this data are being held to the same standard of protecting medical data as any other healthcare software. It would be the same is Google really made a "my health" app; although the article is talking about Google et al. getting medical data for research purposes, not a personal health app that would be gated behind Google's DC doors and multi-level access controls.

0: https://www.healthcaredive.com/news/google-epic-cloud-partne...

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

#69

Post by phkahler »

scarby2 wrote: post #56
genocidicbunny wrote: post #24

Earlier quoted context omitted.

Give me a surefire, 100% guarantee that my data won't be misused against me or anyone else, under severe penalty to you personally if your guarantee fails. Then we can talk.

i cant give you that guarantee today. I can't guarantee the government or your healthcare provider isn't misusing your data. In fact a surefire guarantee essentially doesn't exist. But what exactly are you afraid of? How does someone weaponize your information? Everyone in my life already knows about my health conditions, i speak openly about them in my personal life, my business life and online there have been zero…

>> I can't guarantee the government or your healthcare provider isn't misusing your data.

But at least there is a law against it. Loosening the rules would certainly lead to misuse - use against the patient.

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

#70

Post by nradov »

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…

That is hyperbole. There is zero evidence that open access to medical data would accelerate research by 20×. Most clinical research studies are structured with defined data gathering protocols where patients give informed consent, and this works fine.

Some naive software developers and data scientists have this fantasy that if they could just data mine millions of patient charts that they could discover all sorts of medical insights that would save lives. This is almost totally false.

The real issue with using research data from multiple organizations has more to do with quality and consistency than privacy rules. Various provider organizations will record the same clinical data in different and incompatible ways, or often fail to record it at all. Researchers working with such data have to devote huge efforts to building pipelines for validation, cleansing, and normalization.

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