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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

#91

Post by scythe »

LatteLazy wrote: post #40
forkerenok wrote: post #29

The article doesn't mention whether those are anonymised records. A PDF from the references expands on that: > Pseudonymisation and anonymisation are not enough: health data is so specific that re-identification can be trivial. Often a person’s social media or financial history, both widely available on today’s data markets, is sufficient to identify medical events that can easily lead to reidentifying supposedly pse…

You cannot really anonymised records like these. You can identify most people from only their post code, gender and date of birth (using just public data sources). So stripping names out is meaningless...

You're really underestimating the depth of anonymization in medicine. Birth dates are considered PII. Treatment dates are PII. Record numbers are PII. Locations "narrower than a state" are PII. Even ages over 85ish are PII because there tend to be very few people that old at a particular facility.

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

#92

Post by krisoft »

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…

> How does someone weaponize your information?

Like throws you in prison because you were pregnant and now you are not, and the state concludes you must have had an abortion which just recently become illegal where you live?

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

#93

Post by whysafish108 »

I am also opposed to this kind of petition on the grounds that it inhibits standardization of file formats. I work at a startup and we work with medical records from a number of different hospitals. So much code is dedicated to just dealing with the spaghetti.

A major roadblock for our startup is getting medical information integrated into our system. It's difficult to compete with the IBMs and Epics of the world when we don't have a million developer hours to dedicate to writing plugins for every vendor. It's not just us struggling with crappy data management - it confuses hospital staff, too. Our customers are frustrated when we tell them things like "you gave us which doesn't contain the information we need; do you have instead?". MRI scans (DICOMs) are particularly gnarly.

Even the IBMs and Epics of the world struggle to not make crappy software. How do you present a relevant medical record to a doctor at the exact right time they need it? There is so much data to sift through that medical information frequently slips through the cracks when patients transfer hospitals or their hospital merges with another.

If there isn't a standard way to query an electronic health record then companies are incentivized to just throw data at an LLM to parse it (which is exactly what we're moving towards). Trying to build AI-type solutions will just make these companies even more data-hungry and result in a less reliable solution.

I'm not opposed to continuing to hold startups/big tech accountable for keeping personal health information private and secure.

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

#94

Post by Nifty3929 »

The effort we spend protecting medical records is out of all proportion to the damage done by any leaks. I really do not understand the reasoning. And this is effort that would otherwise be used to generate other economic benefits, like food, housing, medical treatments, etc.

Another problem is that these laws (HIPAA, etc) actually CONTRIBUTE TO the leaks, because they provide a huge blackmail incentive to hackers. The penalties are so large that hackers know they can extort giant payments from companies.

Also, it's no small loss that it's so difficult to use this data for legitimate research purposes now, depriving us of all the medical gains we otherwise would have.

Certainly, I would not want my records in the newspaper - but really what's the worst outcome? Everybody finds out just how much ED medication I take?

I suspect a lot of this legislation is (as usual) motivated the the businesses that stand to gain from it. It creates a large moat around existing large businesses that can afford to cooperate. And funnels a lot of money to the consultancies and other companies that work to comply with these policies.

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

#95

Post by dmbche »

judge2020 wrote: post #68
dmbche wrote: post #47

Earlier quoted context omitted.

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…

I'm no expert on these systems, but the data that's in the cloud isn't encrypted? I would've assumed that Google can not have access to the data but are giving access to server space to host it, making HIPAA violations from employees practicaly impossible? (Unless they try to get keys to unencrypt the data, but then again that's outside the scope of this discussion)

If not this is alarming, thanks for the head up

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

#96

Post by cloverich »

freeone3000 wrote: post #33
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…

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…

> 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 chasing diagnoses and treatment, because the system doesn't share information that could be used to piece together and get ahead of it. Every time my kid gets sick at school, I get to play a game of "What is it? Do we see a Doctor? How much money should we spend?". Lets pretend we know nothing about this and go see a Doctor who hasn't seen anyone else in school, who may provide antibiotics they may or may not need or worse.

Effective prevention methods and early detection of bad treatment are discarded because its so difficult to investigate and connect the dots between interventions and outcomes.

Patient privacy is important, but the system we have today is nothing less than a tragedy. Real damage in emotional, physical, and economic is happening on a grand scale every day in this country. We shouldn't pretend HIPPA is a good thing, or the current system is doing a good job. Its not. We need to radically transform how we operate, and much more open and connected medical records is certainly a part of that transformation.

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

#97

Post by yomlica8 »

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]

People will die as a result of their medical privacy being stripped away, when they forgo care in fear of the effect that stigma has or fear of losing their job due to their medical needs being to expensive or being prosecuted from having a miscarriage or drug use, etc.

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

#98

Post by dmbche »

cesarvarela wrote: post #87
genocidicbunny wrote: post #20

Earlier quoted context omitted.

Seriously, this question seems to indicate a critical lack of common sense in the poster. You don't even need to have a desire for privacy, just a modicum of risk aversion. Here's a simple example of what can happen with your medical data: Medical data ends up somewhere like LexisNexis -> Company looks you up before hiring -> Company sees that you have a health condition that will cost them more in health insurance c…

It is a bit of a chicken egg problem, because with more data available the cure for that health condition could be found earlier.

Not necessarily - it could very well not help that much. These are just claims.

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

#99

Post by taskforcegemini »

manicennui wrote: post #42
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…

Right after we make all medical treatments not-for-profit and all medical research completely open.

that would solve a lot of problems, probably a lot more than making health data public. otherwise keeping your data off the record becomes just another bussiness model.

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

#100

Post by nonameiguess »

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…

This reads an awful lot like we could eliminate all crime with a sufficiently strong police and surveillance state, or eliminate all obesity by attaching activity trackers to everyone and having the government ration only as much food as you actually need. Both true, but humans inherently value things other than health and longevity, such as freedom and privacy. Governments that are not dictatorship have to manage these competing demands from citizens. Otherwise, you could probably maximize health outcomes by allowing research facilities to just all operate like Unit 731. Sure, you might kill a few million people, but you're doing it to save trillions in the future.
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