4 ms·

But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. The risk of that happening to you is actually

by pimmen 8y ago

But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. The risk of that happening to you is actually significantly higher than dying from a lot of pretty common illnesses.

michaelt 8y ago
But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. Don't you think I'm in a better position to make that decision than a central government bureaucrat, given that I have my medical records and an incentive to protect my own privacy, and he has neither?
- jbob2000 8y ago
  It's not good public policy for millions of people to make individual decisions about this. It's expensive for the healthcare system when there are a million different ways for it to access your data; some people bring in papers, some papers are on the other side of the country, some people have a USB stick, oh granny lost hers in a fire here's a photocopy from 10 years ago. It's just much more effective to manage these things at scale. You have incentive to product your privacy, but you don't have the means. Are you going to bolt a fire-proof safe to your basement floor and keep a backup in a storage unit? Are you going to store them on a disconnected harddrive and create backups every 3-6-12 months? Can we expect every Australian to do this? Can we expect everyone to want to spend hundreds of dollars to make this happen?
  - vertex-four 8y ago
    So in my country, records are kept by the individual clinics, where I have GDPR rights over them and there isn’t a direct mechanism by which anybody but the clinic can access them. If I move clinic, there’s a process by which those records get moved with my consent.
    - jbob2000 8y ago
      Yep, works like this in Canada. The problem is that each clinic implements a different record system, so someone needs to undergo effort to translate them when you switch systems. Also, I worked with OSCAR, one of Canada's biggest EMRs. It is written by a bunch of academics at a local university and is individually deployed on under-the-desk computers at clinics. It is full of security holes, the whole process of managing this system is. I get why you want rights over the medical records. You can still have those on a centralized system. Google and facebook are centralized and you have rights over them (in some jurisdictions anyways).
      - Canada 8y ago
        Your province pretty much gets and retains your records because it's paying the bills.
- pimmen 8y ago
  I'm not saying I like the Australian take on this but I do think a central database for medical records has the potential to prevent medical treatment mistakes by a couple percent. That's thousands of people saved. At that point, I think it's something we really should discuss as a society because it would have a profound effect on the economy and public health. I don't think the idea is fundamentally flawed, I think that just like the justice system incentivzes people with a monopoly on violence to protect you we can legislate in a way that public health servants would be incentivized to look after your interests.
  - vertex-four 8y ago
    Sure, and I’m participating in that discussion right now - for me, it has a high risk of seriously negatively affecting me. There’s other bits of law that I oppose for similar reasons - there’s an opportunity to do a bit better/be a bit more efficient, but at the obvious cost of seriously harming people. I think that many people don’t recognise the downsides to centralised databases vs more efficient records transfer systems etc.
    - pimmen 8y ago
      Sure, if your point is that centralized government databases are inherently bad because the government could use them, I can't argue against that because you simply will not risk whatever they could do however low that risk is (if it's even quantifiable).
vertex-four 8y ago
Unless I’m unconscious, I can give my doctor permission to access my medical history from where it’s kept under my control, and give them a quick run-down in the meantime if necessary. I feel that I should have a right to choose between the risk of death when both myself and my emergency contact are unable to provide medical information to a doctor, and the risk of my medical history becoming publicly available - or even just available to the Government. Forcing the latter risk on me is, imho, unethical.
- pimmen 8y ago
  And it would be much simpler if all you had to do was give them that authorization and they could retrieve your medical records in an instant, in the correct format for them to work quickly. If they have to order your medical journal from a completely separate jurisdiction, in a completely different format, and then import it that would take longer. If you require specialist care which is not available in your area this is an issue that comes up again and again. Not saying a centralized system would fix all the problems, or be perfect, but if it improves 1% of cases that's potentially thousands of people saved every year. That's a huge return for a very minor improvement.
  - vertex-four 8y ago
    All at the low, low risk of creating e.g. a centralised Government database of trans people, or people with HIV, or whatever the next big scare is.
    - pimmen 8y ago
      Yes, not saying it's perfect or couldn't be used for evil, just like the FBI isn't perfect and can be used for evil. We have to weigh the options and legislate in a way that mitigates the ways it can be used for bad things. Again, just a few percent in efficiency could mean thousands upon thousands of lives saved. I'm sure a lot of HIV positive people who were mistreated would've loved that.
      - 8y ago

by pimmen 8y ago

michaelt 8y ago

But you also have a significant risk to your life if your doctor can't get to them and orders the wrong treatment. Don't you think I'm in a better position to make that decision than a central government bureaucrat, given that I have my medical records and an incentive to protect my own privacy, and he has neither?

jbob2000 8y ago
It's not good public policy for millions of people to make individual decisions about this. It's expensive for the healthcare system when there are a million different ways for it to access your data; some people bring in papers, some papers are on the other side of the country, some people have a USB stick, oh granny lost hers in a fire here's a photocopy from 10 years ago. It's just much more effective to manage these things at scale. You have incentive to product your privacy, but you don't have the means. Are you going to bolt a fire-proof safe to your basement floor and keep a backup in a storage unit? Are you going to store them on a disconnected harddrive and create backups every 3-6-12 months? Can we expect every Australian to do this? Can we expect everyone to want to spend hundreds of dollars to make this happen?
- vertex-four 8y ago
  So in my country, records are kept by the individual clinics, where I have GDPR rights over them and there isn’t a direct mechanism by which anybody but the clinic can access them. If I move clinic, there’s a process by which those records get moved with my consent.
  - jbob2000 8y ago
    Yep, works like this in Canada. The problem is that each clinic implements a different record system, so someone needs to undergo effort to translate them when you switch systems. Also, I worked with OSCAR, one of Canada's biggest EMRs. It is written by a bunch of academics at a local university and is individually deployed on under-the-desk computers at clinics. It is full of security holes, the whole process of managing this system is. I get why you want rights over the medical records. You can still have those on a centralized system. Google and facebook are centralized and you have rights over them (in some jurisdictions anyways).
    - Canada 8y ago
      Your province pretty much gets and retains your records because it's paying the bills.
pimmen 8y ago
I'm not saying I like the Australian take on this but I do think a central database for medical records has the potential to prevent medical treatment mistakes by a couple percent. That's thousands of people saved. At that point, I think it's something we really should discuss as a society because it would have a profound effect on the economy and public health. I don't think the idea is fundamentally flawed, I think that just like the justice system incentivzes people with a monopoly on violence to protect you we can legislate in a way that public health servants would be incentivized to look after your interests.
- vertex-four 8y ago
  Sure, and I’m participating in that discussion right now - for me, it has a high risk of seriously negatively affecting me. There’s other bits of law that I oppose for similar reasons - there’s an opportunity to do a bit better/be a bit more efficient, but at the obvious cost of seriously harming people. I think that many people don’t recognise the downsides to centralised databases vs more efficient records transfer systems etc.
  - pimmen 8y ago
    Sure, if your point is that centralized government databases are inherently bad because the government could use them, I can't argue against that because you simply will not risk whatever they could do however low that risk is (if it's even quantifiable).

vertex-four 8y ago

Unless I’m unconscious, I can give my doctor permission to access my medical history from where it’s kept under my control, and give them a quick run-down in the meantime if necessary. I feel that I should have a right to choose between the risk of death when both myself and my emergency contact are unable to provide medical information to a doctor, and the risk of my medical history becoming publicly available - or even just available to the Government. Forcing the latter risk on me is, imho, unethical.

pimmen 8y ago
And it would be much simpler if all you had to do was give them that authorization and they could retrieve your medical records in an instant, in the correct format for them to work quickly. If they have to order your medical journal from a completely separate jurisdiction, in a completely different format, and then import it that would take longer. If you require specialist care which is not available in your area this is an issue that comes up again and again. Not saying a centralized system would fix all the problems, or be perfect, but if it improves 1% of cases that's potentially thousands of people saved every year. That's a huge return for a very minor improvement.
- vertex-four 8y ago
  All at the low, low risk of creating e.g. a centralised Government database of trans people, or people with HIV, or whatever the next big scare is.
  - pimmen 8y ago
    Yes, not saying it's perfect or couldn't be used for evil, just like the FBI isn't perfect and can be used for evil. We have to weigh the options and legislate in a way that mitigates the ways it can be used for bad things. Again, just a few percent in efficiency could mean thousands upon thousands of lives saved. I'm sure a lot of HIV positive people who were mistreated would've loved that.
    - 8y ago