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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 regre

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 that's an OK tradeoff, I guess you're free to accept that. But there is very real blood on your hands, the fact that none but the most egregiously common diseases are studied. It doesn't have to be this way.

ChrisMarshallNY 3y ago
> 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, or Medical Boards), then that could be a start. The problem is, as soon as anyone even mentions the possibility of restricting tech companies, they are taken out behind the woodshed.
- TZubiri 3y ago
  So do guns
  - polishrandomguy 3y ago
    That's why they are banned throughout the EU much more rigorously than in US
  - denton-scratch 3y ago
    Heh. Open health data doesn't kill people, med-tech bros do. /s
- _piif 3y ago
  I agree. It's hard for me to get excited about anything tech companies output nowadays as more than likely it will be surveillance, ad, upsell and subscription-driven with growth and profits triumphing any regards and respect for the end-user experience and privacy. I have zero reason to trust them not to abuse my health data for their own interests rather than use it for the greater good.
TZubiri 3y ago
It sounds like inane knee jerk reaction from the usual zealots
digging 3y ago
> It doesn't have to be this way. That goes both ways though. People are responding to hostage-taking actions by big tech and trying to protect themselves. There is a theoretical middle ground where data is available for research but not for abuse, but big tech typically won't allow that.
dhimes 3y ago
My wife's vision is to have the patients control their medical data, and opt-in share it with the researchers who recruit them for studies. I don't know what the answer is, but I think it's going to change. You are correct in that it is a huge driver of costs.
yummypaint 3y ago
Medical research doesn't move slowly because medical records are private. Doing actual science takes alot of time, money, and effort. This is a foreign concept in the software world, where tons of engineering happens, but almost no science. Trying to growth hack one's way to medical treatments without proper testing is how people get killed. There is ample evidence for what happens when companies in the health space are allowed to make their own rules, and it isn't better health outcomes. See thalidomide
boring_twenties 3y ago
How much slower does medical research move than it would if experiments on live human beings were permitted?
- bpodgursky 3y ago
  We do a lot of experiments on live human beings, and I agree that medical research would move very slowly if we were only allowed to test on mice.
nradov 3y ago
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.
denton-scratch 3y ago
> 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.

ChrisMarshallNY 3y ago

> 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, or Medical Boards), then that could be a start. The problem is, as soon as anyone even mentions the possibility of restricting tech companies, they are taken out behind the woodshed.

TZubiri 3y ago
So do guns
- polishrandomguy 3y ago
  That's why they are banned throughout the EU much more rigorously than in US
- denton-scratch 3y ago
  Heh. Open health data doesn't kill people, med-tech bros do. /s
_piif 3y ago
I agree. It's hard for me to get excited about anything tech companies output nowadays as more than likely it will be surveillance, ad, upsell and subscription-driven with growth and profits triumphing any regards and respect for the end-user experience and privacy. I have zero reason to trust them not to abuse my health data for their own interests rather than use it for the greater good.

TZubiri 3y ago

It sounds like inane knee jerk reaction from the usual zealots

digging 3y ago

> It doesn't have to be this way. That goes both ways though. People are responding to hostage-taking actions by big tech and trying to protect themselves. There is a theoretical middle ground where data is available for research but not for abuse, but big tech typically won't allow that.

dhimes 3y ago

My wife's vision is to have the patients control their medical data, and opt-in share it with the researchers who recruit them for studies. I don't know what the answer is, but I think it's going to change. You are correct in that it is a huge driver of costs.

yummypaint 3y ago

Medical research doesn't move slowly because medical records are private. Doing actual science takes alot of time, money, and effort. This is a foreign concept in the software world, where tons of engineering happens, but almost no science. Trying to growth hack one's way to medical treatments without proper testing is how people get killed. There is ample evidence for what happens when companies in the health space are allowed to make their own rules, and it isn't better health outcomes. See thalidomide

boring_twenties 3y ago

How much slower does medical research move than it would if experiments on live human beings were permitted?

bpodgursky 3y ago
We do a lot of experiments on live human beings, and I agree that medical research would move very slowly if we were only allowed to test on mice.

nradov 3y ago

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.

denton-scratch 3y ago

> 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.