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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

#161

Post by jimbob45 »

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 competitive advantage for Europe.

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

#163

Post by rootusrootus »

Do the big tech companies self-insure for medical coverage? They'd probably have pretty good access to their employees' medical records already. Not that it's a good idea to expand that more widely, but I suspect many people have no idea how widely distributed their medical information already is.

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

#164

Post by clusterhacks »

justrealist wrote: post #90
tgv wrote: post #86

Earlier quoted context omitted.

> 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.

I have also been in this field for years and the allure of "open medical data" magically accelerating medical research very much does NOT feel true to me.

Skip the essay but at least give me three or four sentences why I should feel differently?

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

#165

Post by EatingWithForks »

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…

If anything your Devil's advocate is that it should apply to way, way more people than just healthcare providers, and I would thoroughly agree with that. Facebook messages have already been used to arrest women for abortions, which should be huge violation of someone's privacy and totally verboten.

You cannot say the protections it provides are overstated if you are not the people who were victimized by a lack of such protections in the first place. I do not want the "good guys" collecting panels on jews. I certainly don't want the "good guys" collecting panels of info on trans kids without involvement from parents. The idea there is a "good guys" in this scenario is ridiculous. The idea that it might save lives is a cold comfort to the status of my minor child's birth control prescription status being accessible to the government.

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

#166

Post by screye »

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…

The alarm around possible exploitation due to public medical data far exceeds the ground reality. At the same time, it has stifled progress in the field leading to more deaths than we should have to tolerate.

Big Tech is not a thing, just like big-sensors was not a thing. Electric sensing became a thing in the 1900s, and the medical community benefitted from the machines built because of them. Tech is similarly a tool that has become available to all fields over the last 30 years. By treating big-tech as a bogeyman, we end up anthropomorphizing an inanimate marker of of progress in our time. It's Scientific cartelized Amish-ness.

My controversial & intentionally provocative opinion for a while has been : "Doctors are evil". The more I read about it, the more I feel like there is an ounce of truth there.

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

#167

Post by cloverich »

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.

We have Government funding available for such purposes; a better connected and more open PHI system would reduce barriers and costs for these kinds of endeavors.

We would still need controlled trials, which would continue to work similarly to today. But those would be perhaps less expensive as a result, reducing research costs and turn around times.

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

#168

Post by WeylandYutani »

yomlica8 wrote: post #97
iandanforth wrote: post #37

Earlier quoted context omitted.

[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.

Just being pregnant is enough not to get hired because employers hate maternity leave.

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

#169

Post by cloverich »

genocidicbunny wrote: post #67
PragmaticPulp wrote: post #50

Earlier quoted context omitted.

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.

> 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.

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

#170

Post by lisasays »

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…

I believe medical records should be open

Other people's medical records, you mean?

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