6 ms·

And that's why we don't trust "the good guys" with our data. There are no good guys, keep your damn data to yourself no matter what.

by hyko 6y ago

catalogia 6y ago
That might be good advice in general, but I don't think that works with medical data. If I get hurt and end up in a hospital, how would the surgeons decrypt my hard drive to find my medical history if I'm unconscious? Obviously I need to entrust this data to somebody. Edit: Not being a doctor, it's difficult for me to anticipate what sort of information doctors would consider relevant. Certainly there are some easy cases to anticipate, like allergies to penicillin or similar. And I think for things like that, people do get medical tattoos. But personally I'd feel far more comfortable if my doctors have my complete medical history available to them when they need it.
- pessimizer 6y ago
  I'm willing the accept the 5% extra chance of death entailed by some emergency doctor not knowing my medical history. If I have something crucial, like an allergy to medication, I guess I'd just get that tattooed somewhere obvious. In the vast majority of emergency cases for the vast majority of patients, I don't think one's medical history is going to be a significant factor in getting them out of the woods far enough to give an "encryption key." How about just allowing me to register a checklist of what I think doctors should be informed about me with some federal database? A system that is centered around me, and my concerns, rather than just using my safety as a post hoc justification?
  - thelean12 6y ago
    Why do you think you're informed enough to know what doctors need to know about your medical history to best treat you?
    - ganstyles 6y ago
      It seems pretty common sense that the main things people want to convey in medical emergencies where they're unconscious or their identity is unknown are allergies and reactions, hence why we have medical allergy bracelets and similar things. If it's life and death and I'm unconscious, it's unlikely they would be able to access my medical records regardless, given the state of healthcare data interoperability (I have a lot of experience in this area). If I am conscious, I can tell them where to get my records, whether they're in Random Hospital X's database, or my personal DB. I tend to agree that in the average case there's no real downside to doctors not having my medical history.
      - thelean12 6y ago
        You have some weird and contradictory views here. You admit that medical bracelets are a good thing. But then you go off and say stuff like "it's unlikely they would be able to access my medical records regardless". What? It's not "regardless". We can fix that. That's the point of this thread branch.
        ganstyles 6y ago
        I wish. You haven’t dealt with EHRs I take it. Try it sometime versus greenfield development and you’ll share my “weird” views as you put it.
  - disabled 6y ago
    > I'm willing the accept the 5% extra chance of death entailed by some emergency doctor not knowing my medical history. That seems logical in theory, but in practice, that is not actually how this kind of thing works. I know firsthand: I ultimately survived a series of differing and often unusual medical crises in my 20s, that I really should not have ultimately survived, individually or collectively, statistically speaking. I never actually pictured myself once, after turning age 18, ever being age 30. I never once believed that I would ever be 30, in my adult life. Now, every year after 30 to me is a gift. If you do not think that something like this can happen to you: 7-8% of the general population collectively has some sort of a rare disease. Rare diseases can look exactly like a small collection of different common health problems that people with chronic illnesses may legitimately regularly acquire. It requires a lot of intuition, knowledge, experience, and foresight to actually get something like this right. This requires medical expertise and being an excellent clinician is essential. This is not a problem that software engineers can solve on their own. Also, medical records are almost always littered with a ton of errors, that may seem minor to you, but in reality, they really are not. Considering the third leading cause of death in the US is considered to be preventable medical errors [1], which is appalling, you better being going through your medical records in detail, correcting each and every error (along with sharing the records--by giving physical copies--for security reasons--to the other provider--if they do not have full access to complete health records), if you plan on staying alive long-term, whether you are healthy or not. We have a tremendous way to go on medical records and medical data, and it is really not something that AI can practically solve, in general, due to so many errors, bad datasets, and profound hoarding of data. [1] https://www.npr.org/sections/health-shots/2016/05/03/476636183/death-certificates-undercount-toll-of-medical-errors https://www.npr.org/sections/health-shots/2016/05/03/4766361...
  - specialist 6y ago
    During the mid-aughts, there was at least one serious proposal that every person would have their own private record store, which they carried around (PDFs on a thumb drive). Part of NHIN shootout. Every one had a pretty good laugh. Repeating myself here: one way to protect patient privacy is to issue everyone globally unique identifiers. Then use translucent database techniques to hide the important. Currently, linking records across our heterogeneous systems, with all the data quality challenges, prevents data from being encrypted (in transit or at rest).
- vertex-four 6y ago
  Generally speaking, the surgeon isn't going to have your medical history until well into your treatment... probably by the time you or someone who knows you are able to tell them anything they want to know. There's not a properly linked database of healthcare records for that purpose - the hospital doesn't even know what GP you're with, never mind have instant access to your records, and it mostly works out.
  - ganstyles 6y ago
    To put a finer point on it: it may be easier for doctors to find your hard drive and decrypt it in some cases that than to go through and extract them from another medical provider's EHR system. I say this only partly tongue-in-cheek.
    - kjakm 6y ago
      The article is about the NHS though so hospitals and doctors all access the same system/are all the same “medical provider”.
      - vertex-four 6y ago
        Not really. Hospitals don't talk to each other properly, GPs don't talk to each other. I've been asked to bring blood test results in paper from my GP to a specialist clinic because they couldn't work out how to get them emailed over - and it is essentially various forms of email that much exchange does happen over. An "integrated system" has been something the NHS has been sinking money into for decades and getting nowhere with.
        walshemj 6y ago
        Amen its normal if you cross NHS trust's for more complex cases. I cant go to my local hospital for some of my tests (post transplant related) which is 30 mns away by bus instead I have to go to another hospital which by public transport will take an entire day.
      - 6y ago
creato 6y ago
While I understand the thinking here, it's a bit sad. It seems quite likely that very useful medical advancements could be made by looking for correlations in large databases of a variety of medical data. Or correlations between health histories and genetic data. If we gained understanding that led to improved healthcare for everyone, wouldn't someone doing this kind of work be a "good guy"?
- hyko 6y ago
  It is sad. It’s the nature of the beast; oversight is as weak as water, foresight limited, opportunities for misuse and insecurity boundless. Trusted organisations have become the frontmen for all this bullshit, and people are frankly being conned en masse. The problem with all these “atoms for peace” style big data initiatives is that they must naively ignore the weaponisation of data to justify their benefits. Our civilisation having access to big data is like a Neolithic people trying to handle uranium. Not only are we ill equipped to mitigate the dangers involved, we don’t even fully understand what they are yet. Perhaps one day our species will evolve to the point where we can make use of these wonderful technologies without blowing our society apart in the process. Until then, absence of data is better than presence of mind.
- disabled 6y ago
  There have been reports on this site, of severe healthcare provider (as in HIPAA protected data) privacy violations, that occurred via data broker intermediaries through popular social media platforms. You know, getting a $60 FedEx package consisting of baby formula, during the month that the baby you miscarried should have been born, that almost cost you your life too. The amount of bad medical data, erroneous medical data, and just medical errors in the US is actually unbelievably astonishing. Finding correlations in datasets (even the most perfect dataset!) for use in healthcare is a profoundly unethical social experiment, both among the population and the individual. We all know that the field of software engineering has faced scandal after scandal when it comes to ethics. The list of examples is practically endless now, and this is one of the most dangerous examples by far. I mean, it really should be apparent.
  - 6y ago
justinclift 6y ago
It's not clear who you're meaning by "the good guys". None of the parties mentioned, maybe except openDemocracy (and not sure there) could feasibly have such a label applied. Note that I've nor personally heard of Foxglove before, so no idea at all about their history.

And that's why we don't trust "the good guys" with our data. There are no good guys, keep your damn data to yourself no matter what.

by hyko 6y ago

And that's why we don't trust "the good guys" with our data. There are no good guys, keep your damn data to yourself no matter what.

catalogia 6y ago

That might be good advice in general, but I don't think that works with medical data. If I get hurt and end up in a hospital, how would the surgeons decrypt my hard drive to find my medical history if I'm unconscious? Obviously I need to entrust this data to somebody. Edit: Not being a doctor, it's difficult for me to anticipate what sort of information doctors would consider relevant. Certainly there are some easy cases to anticipate, like allergies to penicillin or similar. And I think for things like that, people do get medical tattoos. But personally I'd feel far more comfortable if my doctors have my complete medical history available to them when they need it.

pessimizer 6y ago
I'm willing the accept the 5% extra chance of death entailed by some emergency doctor not knowing my medical history. If I have something crucial, like an allergy to medication, I guess I'd just get that tattooed somewhere obvious. In the vast majority of emergency cases for the vast majority of patients, I don't think one's medical history is going to be a significant factor in getting them out of the woods far enough to give an "encryption key." How about just allowing me to register a checklist of what I think doctors should be informed about me with some federal database? A system that is centered around me, and my concerns, rather than just using my safety as a post hoc justification?
- thelean12 6y ago
  Why do you think you're informed enough to know what doctors need to know about your medical history to best treat you?
  - ganstyles 6y ago
    It seems pretty common sense that the main things people want to convey in medical emergencies where they're unconscious or their identity is unknown are allergies and reactions, hence why we have medical allergy bracelets and similar things. If it's life and death and I'm unconscious, it's unlikely they would be able to access my medical records regardless, given the state of healthcare data interoperability (I have a lot of experience in this area). If I am conscious, I can tell them where to get my records, whether they're in Random Hospital X's database, or my personal DB. I tend to agree that in the average case there's no real downside to doctors not having my medical history.
    - thelean12 6y ago
      You have some weird and contradictory views here. You admit that medical bracelets are a good thing. But then you go off and say stuff like "it's unlikely they would be able to access my medical records regardless". What? It's not "regardless". We can fix that. That's the point of this thread branch.
      - ganstyles 6y ago
        I wish. You haven’t dealt with EHRs I take it. Try it sometime versus greenfield development and you’ll share my “weird” views as you put it.
- disabled 6y ago
  > I'm willing the accept the 5% extra chance of death entailed by some emergency doctor not knowing my medical history. That seems logical in theory, but in practice, that is not actually how this kind of thing works. I know firsthand: I ultimately survived a series of differing and often unusual medical crises in my 20s, that I really should not have ultimately survived, individually or collectively, statistically speaking. I never actually pictured myself once, after turning age 18, ever being age 30. I never once believed that I would ever be 30, in my adult life. Now, every year after 30 to me is a gift. If you do not think that something like this can happen to you: 7-8% of the general population collectively has some sort of a rare disease. Rare diseases can look exactly like a small collection of different common health problems that people with chronic illnesses may legitimately regularly acquire. It requires a lot of intuition, knowledge, experience, and foresight to actually get something like this right. This requires medical expertise and being an excellent clinician is essential. This is not a problem that software engineers can solve on their own. Also, medical records are almost always littered with a ton of errors, that may seem minor to you, but in reality, they really are not. Considering the third leading cause of death in the US is considered to be preventable medical errors [1], which is appalling, you better being going through your medical records in detail, correcting each and every error (along with sharing the records--by giving physical copies--for security reasons--to the other provider--if they do not have full access to complete health records), if you plan on staying alive long-term, whether you are healthy or not. We have a tremendous way to go on medical records and medical data, and it is really not something that AI can practically solve, in general, due to so many errors, bad datasets, and profound hoarding of data. [1] https://www.npr.org/sections/health-shots/2016/05/03/476636183/death-certificates-undercount-toll-of-medical-errors https://www.npr.org/sections/health-shots/2016/05/03/4766361...
- specialist 6y ago
  During the mid-aughts, there was at least one serious proposal that every person would have their own private record store, which they carried around (PDFs on a thumb drive). Part of NHIN shootout. Every one had a pretty good laugh. Repeating myself here: one way to protect patient privacy is to issue everyone globally unique identifiers. Then use translucent database techniques to hide the important. Currently, linking records across our heterogeneous systems, with all the data quality challenges, prevents data from being encrypted (in transit or at rest).
vertex-four 6y ago
Generally speaking, the surgeon isn't going to have your medical history until well into your treatment... probably by the time you or someone who knows you are able to tell them anything they want to know. There's not a properly linked database of healthcare records for that purpose - the hospital doesn't even know what GP you're with, never mind have instant access to your records, and it mostly works out.
- ganstyles 6y ago
  To put a finer point on it: it may be easier for doctors to find your hard drive and decrypt it in some cases that than to go through and extract them from another medical provider's EHR system. I say this only partly tongue-in-cheek.
  - kjakm 6y ago
    The article is about the NHS though so hospitals and doctors all access the same system/are all the same “medical provider”.
    - vertex-four 6y ago
      Not really. Hospitals don't talk to each other properly, GPs don't talk to each other. I've been asked to bring blood test results in paper from my GP to a specialist clinic because they couldn't work out how to get them emailed over - and it is essentially various forms of email that much exchange does happen over. An "integrated system" has been something the NHS has been sinking money into for decades and getting nowhere with.
      - walshemj 6y ago
        Amen its normal if you cross NHS trust's for more complex cases. I cant go to my local hospital for some of my tests (post transplant related) which is 30 mns away by bus instead I have to go to another hospital which by public transport will take an entire day.
    - 6y ago

creato 6y ago

While I understand the thinking here, it's a bit sad. It seems quite likely that very useful medical advancements could be made by looking for correlations in large databases of a variety of medical data. Or correlations between health histories and genetic data. If we gained understanding that led to improved healthcare for everyone, wouldn't someone doing this kind of work be a "good guy"?

hyko 6y ago
It is sad. It’s the nature of the beast; oversight is as weak as water, foresight limited, opportunities for misuse and insecurity boundless. Trusted organisations have become the frontmen for all this bullshit, and people are frankly being conned en masse. The problem with all these “atoms for peace” style big data initiatives is that they must naively ignore the weaponisation of data to justify their benefits. Our civilisation having access to big data is like a Neolithic people trying to handle uranium. Not only are we ill equipped to mitigate the dangers involved, we don’t even fully understand what they are yet. Perhaps one day our species will evolve to the point where we can make use of these wonderful technologies without blowing our society apart in the process. Until then, absence of data is better than presence of mind.
disabled 6y ago
There have been reports on this site, of severe healthcare provider (as in HIPAA protected data) privacy violations, that occurred via data broker intermediaries through popular social media platforms. You know, getting a $60 FedEx package consisting of baby formula, during the month that the baby you miscarried should have been born, that almost cost you your life too. The amount of bad medical data, erroneous medical data, and just medical errors in the US is actually unbelievably astonishing. Finding correlations in datasets (even the most perfect dataset!) for use in healthcare is a profoundly unethical social experiment, both among the population and the individual. We all know that the field of software engineering has faced scandal after scandal when it comes to ethics. The list of examples is practically endless now, and this is one of the most dangerous examples by far. I mean, it really should be apparent.
- 6y ago

justinclift 6y ago

It's not clear who you're meaning by "the good guys". None of the parties mentioned, maybe except openDemocracy (and not sure there) could feasibly have such a label applied. Note that I've nor personally heard of Foxglove before, so no idea at all about their history.