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

act.wemove.eu

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

#81
post #56

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 cant give you that guarantee today.

Well that's really the point, ain't it. You can't even meet the bare frakking minimum for this to be workable.

> 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 consequences to this.

Would you mind listing them out? Also, some vital info like date, place of birth, name, family medical history? Who was your mom and dad? Grandparents? Got any siblings/cousins? Also, go ahead and measure your bp, heartrate, blood sugar levels, and post those here as well, might be useful to know those too. Oh, reminds me, gonna need to see your hepatic and renal panels as well, you never know when that sort of information about you might come in handy.

I mean, now that we've interacted, I'm in your life too, and I'd like to know all these medical facts about you.

Edit:

> How does someone weaponize your information?

A lot of other people have posted some of the terrible consequences that can result, but let me give you a more inane one that might actually be a little easier to connect with.

Blood types are not evenly distributed, especially when it comes to blood banks. Some blood types, and especially if your have an uncommon Rh factor might be harder to get. So just imagine if your health insurance was more less expensive just based on your blood type -- something that you will probably need to know (and will thus be available to your insurer) at some point in your life, and probably relatively sooner than later. How'd you like to pay hundreds or thousands more for health insurance based on your blood type alone (because there won't be any discounts for the common ones, just penalties for the rare ones.) Or worse, being denied coverage for a surgery because the blood you'd need transfused during it would be 'too expensive'.

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

#82

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…

As a patient, I feel like HIPAA has been used by care providers to bully me into giving away my rights and data on pain of not getting care. It's a train wreck.

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

#83
For my W2 job, I broker the commercial sale of "real world evidence". It's usually hospital, insurance and pharmaceutical claims data. The buyer is largely big pharma. They want it for things like monitoring a patient's journey and adverse events related to their drugs. There's use-cases in clinical development and pre-market as well.

As archaic as HIPAA is, the tools that we have today to obfuscate PHI (e.g. tokenization) respect the individual's privacy. The major cloud infrastructure providers are all HITRUST certified and ready to sign BAAs to keep everyone accountable.

I think we're in a good place right now for innovation with healthcare data. Multi-modal (think genome + claims + social determinants of health) are starting to become a thing. As a population, we'll benefit from more targeted therapies.

Technology is catching up with the swaths of data that has been amassed since the 2000's. I hope for more innovation vs. shackling it with uninformed regulation.

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

#84
post #49

Earlier quoted context omitted.

> GmbH This is apparently the German equivalent to an LLC. Pretty sure you misunderstood what "limited liability" means. Pretty much all organizations today have the same legal status: https://en.m.wikipedia.org/wiki/Limited_liability

> Pretty much all organizations today have the same legal status Thats exactly the issue

Limited Liability is a GREAT thing. It allows us to build businesses that serve society that we wouldn't otherwise. Would you start a company or invest in one if you could lose all your personal wealth? Few would.

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

#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).

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

#86

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.

That's just bullshit.

Also, given the state of medical research methodology, you could just as well argue that it would yield even more unreliable studies, each adding confusion to our knowledge.

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

#87
post #10

Earlier quoted context omitted.

Anyone with a desire for privacy who possesses critical reasoning.

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.

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

#88
post #18

Earlier quoted context omitted.

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.

I don't mind aggregate data, or anonymized where I'm "Patient b15-2gty", which is what you seem to be talking about, but I do mind "here's all the data about patient Martin Tournoij, for everyone to read".

I wouldn't want any future employers to see my medical data for example, as they may use this to discriminate (theoretically anyway; my medical history thus far is essentially non-existent).

Also: in the late 90s my mother worked for the city to digitize a lot of social security records and such. She had a good friend who had trouble walking (crutches, wheelchair); the story she told was that she was hit by a car, but my mother read her records during her job and found out she had simply fallen and was never hit by a car. Much drama ensued. I have no idea why anyone would lie about that and I'm fuzzy on the details as I was about 12-13 at the time, but fundamentally I think people should have the right to lie about things like this, if they so choose, for whatever reason.

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

#89

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.

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

#90
post #86

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. That's just bullshit. Also, given the state of medical research methodology, you could just as well argue that it would yield even more unreliable studies, each adding confusion to our knowledge.

I don't have time to type an essay but I have been in this field for years and it's simply true.

Please trust the opinions of people who have tried to do this work. There are many people trying to advance medical research in good faith who can attest to the insane inefficiencies of working with medical data.

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