4 ms·

I'm not. The illiquidity is why different healthcare specialists can't share data about me without resorting to a ten finger interface that leads to transcripti

I'm not. The illiquidity is why different healthcare specialists can't share data about me without resorting to a ten finger interface that leads to transcription errors. I want my general practitioner and my spine specialist to be using the same database for records, test, and scans. I'm okay with being embarrassed if it means living longer and better.

michaelt 12y ago
I wish I believed we could make a database shared between my GP and my spine specialist without my records also being shared with all insurers, employers, marketing companies, security services, medical researchers, credit rating agencies, and anyone who slips any hospital employee a hundred bucks.
- rwallace 12y ago
  So do I, but given the world as it is, wouldn't you much prefer some idiot marketing guy spamming you on the basis of your medical records, than a screwup in the chain of communication between your GP and spine specialist leaving you crippled or dead?
  - jerf 12y ago
    Yes, of course. But "idiot marketing guy" isn't the worst case scenario, nor is it even the worst plausible scenario. Job loss and inability to get health insurance aren't hypothetical concerns... laws have been written about this because they happen, at scale. While I'm inclined to think the regulations as they stand today are heavy-handed and more expensive than they need to be to get the job done, that doesn't negate the fact that they exist for a reason, a reason that isn't just hypothetical but happened a lot.
    - fixermark 12y ago
      It seems almost like the real issue is the insurance schema that makes medical care inaccessible without third-party money. This notion suggests that the right place to start the kind of big-data medical disruption that could work would be a nation with a weaker or nonexistent medical insurance framework.
      - rayiner 12y ago
        It's not just insurance. Companies these days are using credit history as a reason to deny people employment. The credit card companies will hand out this information to almost anyone. Imagine what these folks will do with medical data.
        laurenstill 12y ago
        ...and the hospitals are using credit card data in their population management models. Oh, you've stopped by the liquor store 3 times this week and now presenting with pancreatitis? Sorry, you are now in our "at risk" billing class. Just cause I'm feeling particularly paranoid today.
    - rwallace 12y ago
      Job loss and inability to get health insurance are serious issues, granted. I will suggest the root causes of those need to be tackled for other reasons anyway, starting with the utterly insane practice of having employers involved in health insurance.
  - msandford 12y ago
    It's the asymmetry of it. A person might have only one GP and one specialist. That is fairly easily managed. It's not good I agree. But it's MANAGEABLE. Once there is a single large integrated database it's a HUGE target for people to creatively re-interpret the rules such that they can sell access to it. It's also a hacking target too since doctors tend to be a real pain in the ass about collecting all kinds of information that's not medically necessary but perhaps necessary for billing or in case you try not to pay your bill. Right now this information is federated meaning that there's no one single point of failure. Hospital X's systems might go down, but Hospital Y's systems are still up. That means that unless something REALLY BAD happens across all the hospitals you're not going to die because a computer crashes. I am far more on-board with good interchange protocols (Diaspora) than with one large centrally managed database (Facebook).
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  - michaelt 12y ago
    I don't have anything requiring regular medical treatment, but my medical records identify me as someone who has suffered mental health problems, who regularly drinks to excess, who habitually uses cocaine, and who caught an STD in a nazi-themed prostitution orgy while I was a sex tourist in a deprived country. I'd prefer to retain my privacy and take my chances on the medical miscommunication front, thanks.
    - fixermark 12y ago
      I can't help but think that the nazi-themed prostitution orgy part doesn't need to be in the medical records. You should probably talk to your practitioner about logging discretion. ;)
  - unethical_ban 12y ago
    This is a false dichotomy. Can't we have secure, somewhat non-portable EHRs with super strong "Won't release without auth" procedures, or perhaps, as someone else implied, the data should be transfered via sneakernet on USB or similar? And how common, as a ratio, are crippling medical screwups related to multi-practice miscommunication? I'm sure the absolute number is non-zero, but risks must be weighed. If one person having a crippling issue saves 100,000 people from having their personal data released against their will...
    - rwallace 12y ago
      Highly secure systems are possible in theory; we just don't have them today, and we aren't likely to have them tomorrow either. Crippling medical screwups that could have been prevented by having the right information available at the right time are actually shockingly common. I don't remember the specifics, but I've seen claims to the effect of a five digit annual death toll in the US alone.
BrokenEnso 12y ago
I'd like for that database to be something that I control. This is, something that I carry with with me, like a usb stick; and that I have the software/tools to view it. Then I could actually take read though any notes and maybe take a more active role in my health.
- mcculley 12y ago
  I would like that as well, but do you seriously think that would work for most people? Would you want your less technical loved ones to be responsible for the physical security of their data and carry it with them at all times?
  - fixermark 12y ago
    I think that's over-thinking it. Medical alert bracelets already exist; I can't imagine it'd be too much challenge to embed a ruggedized USB stick in one, and people generally don't worry about less technical people failing to remember to wear their bracelet.
    - mcculley 12y ago
      That's a really good point. It wouldn't take much more miniaturization than what we already have to put that in an earring or something else people wouldn't mind having all the time.
  - BrokenEnso 12y ago
    It wouldn't be that much more different then paper medical records. Sure it would enable some interesting attack vectors, but I don't see that to be a compelling reason to not do it. It also wouldn't have to be a mandatory thing. People that are comfortable with it can use it, and those that aren't don't have to. Much like banks, there were (are) lots of people that don't trust back and choose not to use them. The same would be true for something like this.
harryh 12y ago
I don't think rayiner is worried about being embarrassed, he's worried about (for example) not getting a job one day because his private health information has made its way into the hands of a potential employer.
- kenjackson 12y ago
  Can't we just make it illegal for an employer to use this information? While not perfect, ask any Black person, it seems preferable to the mess we have today.
moe 12y ago
If only we had a technology to physically carry around data in our pocket, and selectively share it without uploading it to remote servers...
- yebyen 12y ago
  Great... now your doctor can read the news in your patient file only once/after and while you're in the room. I'm sure that won't affect his or her bill rate. As it is, I only get to see my doctor for three and a half minutes when I need help, after 5 minutes with a PA, and I don't know if the PA has even had a chance to communicate any of what I told her to the physician, so I have to write everything down lest I forget to repeat something important. Now it sounds like you want to remove the chance they might have actually reviewed my history before I get there, by having me carry it around in my pocket with me?
  - moe 12y ago
    How about handing it to their receptionist as you check in? Who can of course store the data on their network, for the duration of your treatment? Not everything has to be put into global data-silos.

michaelt 12y ago

I wish I believed we could make a database shared between my GP and my spine specialist without my records also being shared with all insurers, employers, marketing companies, security services, medical researchers, credit rating agencies, and anyone who slips any hospital employee a hundred bucks.

rwallace 12y ago
So do I, but given the world as it is, wouldn't you much prefer some idiot marketing guy spamming you on the basis of your medical records, than a screwup in the chain of communication between your GP and spine specialist leaving you crippled or dead?
- jerf 12y ago
  Yes, of course. But "idiot marketing guy" isn't the worst case scenario, nor is it even the worst plausible scenario. Job loss and inability to get health insurance aren't hypothetical concerns... laws have been written about this because they happen, at scale. While I'm inclined to think the regulations as they stand today are heavy-handed and more expensive than they need to be to get the job done, that doesn't negate the fact that they exist for a reason, a reason that isn't just hypothetical but happened a lot.
  - fixermark 12y ago
    It seems almost like the real issue is the insurance schema that makes medical care inaccessible without third-party money. This notion suggests that the right place to start the kind of big-data medical disruption that could work would be a nation with a weaker or nonexistent medical insurance framework.
    - rayiner 12y ago
      It's not just insurance. Companies these days are using credit history as a reason to deny people employment. The credit card companies will hand out this information to almost anyone. Imagine what these folks will do with medical data.
      - laurenstill 12y ago
        ...and the hospitals are using credit card data in their population management models. Oh, you've stopped by the liquor store 3 times this week and now presenting with pancreatitis? Sorry, you are now in our "at risk" billing class. Just cause I'm feeling particularly paranoid today.
  - rwallace 12y ago
    Job loss and inability to get health insurance are serious issues, granted. I will suggest the root causes of those need to be tackled for other reasons anyway, starting with the utterly insane practice of having employers involved in health insurance.
- msandford 12y ago
  It's the asymmetry of it. A person might have only one GP and one specialist. That is fairly easily managed. It's not good I agree. But it's MANAGEABLE. Once there is a single large integrated database it's a HUGE target for people to creatively re-interpret the rules such that they can sell access to it. It's also a hacking target too since doctors tend to be a real pain in the ass about collecting all kinds of information that's not medically necessary but perhaps necessary for billing or in case you try not to pay your bill. Right now this information is federated meaning that there's no one single point of failure. Hospital X's systems might go down, but Hospital Y's systems are still up. That means that unless something REALLY BAD happens across all the hospitals you're not going to die because a computer crashes. I am far more on-board with good interchange protocols (Diaspora) than with one large centrally managed database (Facebook).
- deleted 12y ago
  [deleted]
- deleted 12y ago
  [deleted]
- michaelt 12y ago
  I don't have anything requiring regular medical treatment, but my medical records identify me as someone who has suffered mental health problems, who regularly drinks to excess, who habitually uses cocaine, and who caught an STD in a nazi-themed prostitution orgy while I was a sex tourist in a deprived country. I'd prefer to retain my privacy and take my chances on the medical miscommunication front, thanks.
  - fixermark 12y ago
    I can't help but think that the nazi-themed prostitution orgy part doesn't need to be in the medical records. You should probably talk to your practitioner about logging discretion. ;)
- unethical_ban 12y ago
  This is a false dichotomy. Can't we have secure, somewhat non-portable EHRs with super strong "Won't release without auth" procedures, or perhaps, as someone else implied, the data should be transfered via sneakernet on USB or similar? And how common, as a ratio, are crippling medical screwups related to multi-practice miscommunication? I'm sure the absolute number is non-zero, but risks must be weighed. If one person having a crippling issue saves 100,000 people from having their personal data released against their will...
  - rwallace 12y ago
    Highly secure systems are possible in theory; we just don't have them today, and we aren't likely to have them tomorrow either. Crippling medical screwups that could have been prevented by having the right information available at the right time are actually shockingly common. I don't remember the specifics, but I've seen claims to the effect of a five digit annual death toll in the US alone.

BrokenEnso 12y ago

I'd like for that database to be something that I control. This is, something that I carry with with me, like a usb stick; and that I have the software/tools to view it. Then I could actually take read though any notes and maybe take a more active role in my health.

mcculley 12y ago
I would like that as well, but do you seriously think that would work for most people? Would you want your less technical loved ones to be responsible for the physical security of their data and carry it with them at all times?
- fixermark 12y ago
  I think that's over-thinking it. Medical alert bracelets already exist; I can't imagine it'd be too much challenge to embed a ruggedized USB stick in one, and people generally don't worry about less technical people failing to remember to wear their bracelet.
  - mcculley 12y ago
    That's a really good point. It wouldn't take much more miniaturization than what we already have to put that in an earring or something else people wouldn't mind having all the time.
- BrokenEnso 12y ago
  It wouldn't be that much more different then paper medical records. Sure it would enable some interesting attack vectors, but I don't see that to be a compelling reason to not do it. It also wouldn't have to be a mandatory thing. People that are comfortable with it can use it, and those that aren't don't have to. Much like banks, there were (are) lots of people that don't trust back and choose not to use them. The same would be true for something like this.

harryh 12y ago

I don't think rayiner is worried about being embarrassed, he's worried about (for example) not getting a job one day because his private health information has made its way into the hands of a potential employer.

kenjackson 12y ago
Can't we just make it illegal for an employer to use this information? While not perfect, ask any Black person, it seems preferable to the mess we have today.

moe 12y ago

If only we had a technology to physically carry around data in our pocket, and selectively share it without uploading it to remote servers...

yebyen 12y ago
Great... now your doctor can read the news in your patient file only once/after and while you're in the room. I'm sure that won't affect his or her bill rate. As it is, I only get to see my doctor for three and a half minutes when I need help, after 5 minutes with a PA, and I don't know if the PA has even had a chance to communicate any of what I told her to the physician, so I have to write everything down lest I forget to repeat something important. Now it sounds like you want to remove the chance they might have actually reviewed my history before I get there, by having me carry it around in my pocket with me?
- moe 12y ago
  How about handing it to their receptionist as you check in? Who can of course store the data on their network, for the duration of your treatment? Not everything has to be put into global data-silos.