4 ms·

I know I'm very much in the minority here, but just like we should have more open borders and more open software, we should encourage more openness around medic

by drcode 7y ago

I know I'm very much in the minority here, but just like we should have more open borders and more open software, we should encourage more openness around medical data. Google and other large companies have made some significant AI advances in the last decade & I think it's in all of our interests to see if these advances can lead to improvements in health care. Yes, it's scary how much data these companies have collected about us, but there are other things in the world which are even more scary, like heart attacks and cancer. I think we need to stop having an automatic knee-jerk reaction every time a company gets access to our data, especially if proper legal protocols with privacy protections are being followed, as it appears to be in this case. Of course, I would love to live in a world with 100% perfect personal privacy AND perfect treatments for all diseases, but we don't live in that world: In our world, as we move forward, there are going to be difficult tradeoffs between health innovation and patient data access: We should try to navigate these tradeoffs in a level-headed way, without just insisting on greater walls around all data in every instance.

legulere 7y ago
I know how hard it is to get enough medical data to do research. But why do you need names? Correlate diseases with first names?
- bilbo0s 7y ago
  Totally agree. Last thing we should do is have radically open medical data. Some busybody parent could go out and search all the kids in in her kids' school who might have HIV or something. Or imagine all the crazies out there searching for a list of women in their town who have had abortions. The only thing you do with open medical data is ratchet up the "crazy" in society. In an ideal world where everyone is rational, it's fine. But that world doesn't exist.
- drcode 7y ago
  They probably get all the data in fragments from different EHR systems, pharmacy records, diagnostic monitors, etc etc and need ways of knowing which records belong to the same patient. Sure, we may want to have properly-designed legislation to come up with standards across databases that make the use of such sensitive data for combining records less necessary, but we better make sure it's well designed or we could end up slowing down medical innovations.
- perl4ever 7y ago
  On the other hand, it's been shown that even without information defined as PII, it's very easy to identify individuals from a combination of other data points. When you're dredging the ocean for correlations, this will just automatically catch everybody anyway, whether intentionally or not.
JohnFen 7y ago
> we should encourage more openness around medical data. Encouraging is fine, but in the end, consent from individuals should be obtained and if it isn't, that data should be omitted.
- drcode 7y ago
  Well, I think most people in this comments section would say "blanket consent when signing hospital forms is unacceptable and patients should get notified and paid every time someone uses an element of their data". If that's the standard society wants to adopt, so be it- But it might come at a dramatic cost in slowing down medical innovations. Personally, that seems like a bad tradeoff to me, but who can say for sure?
  - JohnFen 7y ago
    > patients should get notified and paid every time someone uses an element of their data I don't know about most people here, but I wouldn't say that. Notification or being paid is beside the point. The point is that informed consent should be obtained. You're right that blanket consent forms don't count as "informed consent" for this sort of thing because they don't actually inform you. > Personally, that seems like a bad tradeoff to me Which is fair -- you'd have no problem giving such consent. I, however, would not be willing to give such consent. I put a lot of effort into reducing the amount of data that Google (and Facebook, Amazon, etc.) can get about me. If/when my medical provider just hands my data over to them, that's a very serious betrayal of trust and undermines my ability to protect myself from those companies. I find that completely unacceptable, particularly because medical care is not exactly an optional thing.
    - drcode 7y ago
      > you'd have no problem giving such consent. I, however, would not be willing to give such consent. That logic only works if you don't still benefit from the research findings that are obtained from my data. e.g. "tragedy of the commons"

by drcode 7y ago

legulere 7y ago

I know how hard it is to get enough medical data to do research. But why do you need names? Correlate diseases with first names?

bilbo0s 7y ago
Totally agree. Last thing we should do is have radically open medical data. Some busybody parent could go out and search all the kids in in her kids' school who might have HIV or something. Or imagine all the crazies out there searching for a list of women in their town who have had abortions. The only thing you do with open medical data is ratchet up the "crazy" in society. In an ideal world where everyone is rational, it's fine. But that world doesn't exist.
drcode 7y ago
They probably get all the data in fragments from different EHR systems, pharmacy records, diagnostic monitors, etc etc and need ways of knowing which records belong to the same patient. Sure, we may want to have properly-designed legislation to come up with standards across databases that make the use of such sensitive data for combining records less necessary, but we better make sure it's well designed or we could end up slowing down medical innovations.
perl4ever 7y ago
On the other hand, it's been shown that even without information defined as PII, it's very easy to identify individuals from a combination of other data points. When you're dredging the ocean for correlations, this will just automatically catch everybody anyway, whether intentionally or not.

JohnFen 7y ago

> we should encourage more openness around medical data. Encouraging is fine, but in the end, consent from individuals should be obtained and if it isn't, that data should be omitted.

drcode 7y ago
Well, I think most people in this comments section would say "blanket consent when signing hospital forms is unacceptable and patients should get notified and paid every time someone uses an element of their data". If that's the standard society wants to adopt, so be it- But it might come at a dramatic cost in slowing down medical innovations. Personally, that seems like a bad tradeoff to me, but who can say for sure?
- JohnFen 7y ago
  > patients should get notified and paid every time someone uses an element of their data I don't know about most people here, but I wouldn't say that. Notification or being paid is beside the point. The point is that informed consent should be obtained. You're right that blanket consent forms don't count as "informed consent" for this sort of thing because they don't actually inform you. > Personally, that seems like a bad tradeoff to me Which is fair -- you'd have no problem giving such consent. I, however, would not be willing to give such consent. I put a lot of effort into reducing the amount of data that Google (and Facebook, Amazon, etc.) can get about me. If/when my medical provider just hands my data over to them, that's a very serious betrayal of trust and undermines my ability to protect myself from those companies. I find that completely unacceptable, particularly because medical care is not exactly an optional thing.
  - drcode 7y ago
    > you'd have no problem giving such consent. I, however, would not be willing to give such consent. That logic only works if you don't still benefit from the research findings that are obtained from my data. e.g. "tragedy of the commons"