8 ms·

NHS response to this and similar allegations Collecting GP data - advice for the public: https://digital.nhs.uk/data-and-information/data-collections-and-data-

by Camas 5y ago

NHS response to this and similar allegations Collecting GP data - advice for the public: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/advice-for-the-public https://digital.nhs.uk/data-and-information/data-collections...

wiz21c 5y ago
From the page : "You can opt out of sharing your data" No no no triple no. Don't opt me in. Full stop. I'll opt in if I want to. 99% of people just don't get it enough to opt out. So please, take a default that protects people first.
- chrisseaton 5y ago
  > So please, take a default that protects people first. Their argument is that having high-quality data to plan healthcare is protecting people. If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute.
  - throwaway3699 5y ago
    > If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute. This is literally going against the underlying principles of the NHS. There is no 'transaction' going on here. I already contribute to the NHS through my taxes.
    - chrisseaton 5y ago
      > This is literally going against the underlying principles of the NHS. Bizarre claim. The underlying principle of the NHS is socialised healthcare. Opting out of contributing to allow the NHS to plan for everyone's healthcare is the opposite of being social. > There is no 'transaction' going on here. I already contribute to the NHS through my taxes. Seems self-contradictory?
      - throwaway3699 5y ago
        Not really. The NHS is a function of life, as much as a publicly owned road or school. I don't owe it anything.
        chrisseaton 5y ago
        > This is literally going against the underlying principles of the NHS yet > I don't owe it anything
        throwaway3699 5y ago
        Two things can be true: 1) The NHS is free at-the-point of delivery, funded through taxes, much like schools and roads 2) That does not mean I owe them the right to unilaterally give away my data
  - Silhouette 5y ago
    The state has been planning national healthcare in the UK since shortly after WW2 without needing this before. So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. Evidently the doctors objecting in the linked piece don't buy that argument, and although it's not explicitly stated, it's quite likely that some of those GPs are also involved with their area's CCG. Similarly, it is already possible for research groups to contact patients with certain conditions indirectly (via the clinical professionals treating them) and invite them to participate in research programmes that they might be able to help. Again, there is no need to create the most risky personal data lake in the history of the UK to achieve this.
    - chrisseaton 5y ago
      > So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. The health service itself is arguing for it. > it is already possible for research groups to contact patients with certain conditions indirectly As the health service describes, an issue with this is that asking people to opt-in creates health planning assumptions that are biased, harming some groups.
      - Silhouette 5y ago
        The health service itself is arguing for it. Branding aside, there is no single health service in England. The NHS is made up of many organisations and they cooperate to provide each individual's healthcare. To be clear, it is NHS England and the DHSC who are apparently pushing for this, and neither of those organisations has a direct clinical role.
    - nanis 5y ago
      It seems like every movie I found entertaining but a stretch in the 90s is becoming reality: * Demolition Man https://en.wikipedia.org/wiki/Demolition_Man_(film) https://en.wikipedia.org/wiki/Demolition_Man_(film) * Enemy of the State https://en.wikipedia.org/wiki/Enemy_of_the_State_(film) https://en.wikipedia.org/wiki/Enemy_of_the_State_(film) * Gattaca https://en.wikipedia.org/wiki/Gattaca https://en.wikipedia.org/wiki/Gattaca * The Net https://en.wikipedia.org/wiki/The_Net_(1995_film) https://en.wikipedia.org/wiki/The_Net_(1995_film)
- Broken_Hippo 5y ago
  ...take a default that protects people first. I'm not convinced opting out is the thing that protects people. More information going to the folks that can use it to help people is the option with the most protection for folks. Having health care that is responsive in the right ways helps people. Better medicine is better for everyone. Folks like you - the ones with strong opinions - can opt out. It is like this because more people participate, much like organ donor programs get more folks by a "yes by default" policy. And like organ donation, more is better in this case. If you have trust issues with the government or don't trust the safety of the rollout, perhaps elect a better government.
  - alex77456 5y ago
    https://news.ycombinator.com/item?id=27436310 https://news.ycombinator.com/item?id=27436310

by Camas 5y ago

wiz21c 5y ago

From the page : "You can opt out of sharing your data" No no no triple no. Don't opt me in. Full stop. I'll opt in if I want to. 99% of people just don't get it enough to opt out. So please, take a default that protects people first.

chrisseaton 5y ago
> So please, take a default that protects people first. Their argument is that having high-quality data to plan healthcare is protecting people. If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute.
- throwaway3699 5y ago
  > If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute. This is literally going against the underlying principles of the NHS. There is no 'transaction' going on here. I already contribute to the NHS through my taxes.
  - chrisseaton 5y ago
    > This is literally going against the underlying principles of the NHS. Bizarre claim. The underlying principle of the NHS is socialised healthcare. Opting out of contributing to allow the NHS to plan for everyone's healthcare is the opposite of being social. > There is no 'transaction' going on here. I already contribute to the NHS through my taxes. Seems self-contradictory?
    - throwaway3699 5y ago
      Not really. The NHS is a function of life, as much as a publicly owned road or school. I don't owe it anything.
      - chrisseaton 5y ago
        > This is literally going against the underlying principles of the NHS yet > I don't owe it anything
        throwaway3699 5y ago
        Two things can be true: 1) The NHS is free at-the-point of delivery, funded through taxes, much like schools and roads 2) That does not mean I owe them the right to unilaterally give away my data
- Silhouette 5y ago
  The state has been planning national healthcare in the UK since shortly after WW2 without needing this before. So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. Evidently the doctors objecting in the linked piece don't buy that argument, and although it's not explicitly stated, it's quite likely that some of those GPs are also involved with their area's CCG. Similarly, it is already possible for research groups to contact patients with certain conditions indirectly (via the clinical professionals treating them) and invite them to participate in research programmes that they might be able to help. Again, there is no need to create the most risky personal data lake in the history of the UK to achieve this.
  - chrisseaton 5y ago
    > So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. The health service itself is arguing for it. > it is already possible for research groups to contact patients with certain conditions indirectly As the health service describes, an issue with this is that asking people to opt-in creates health planning assumptions that are biased, harming some groups.
    - Silhouette 5y ago
      The health service itself is arguing for it. Branding aside, there is no single health service in England. The NHS is made up of many organisations and they cooperate to provide each individual's healthcare. To be clear, it is NHS England and the DHSC who are apparently pushing for this, and neither of those organisations has a direct clinical role.
  - nanis 5y ago
    It seems like every movie I found entertaining but a stretch in the 90s is becoming reality: * Demolition Man https://en.wikipedia.org/wiki/Demolition_Man_(film) https://en.wikipedia.org/wiki/Demolition_Man_(film) * Enemy of the State https://en.wikipedia.org/wiki/Enemy_of_the_State_(film) https://en.wikipedia.org/wiki/Enemy_of_the_State_(film) * Gattaca https://en.wikipedia.org/wiki/Gattaca https://en.wikipedia.org/wiki/Gattaca * The Net https://en.wikipedia.org/wiki/The_Net_(1995_film) https://en.wikipedia.org/wiki/The_Net_(1995_film)
Broken_Hippo 5y ago
...take a default that protects people first. I'm not convinced opting out is the thing that protects people. More information going to the folks that can use it to help people is the option with the most protection for folks. Having health care that is responsive in the right ways helps people. Better medicine is better for everyone. Folks like you - the ones with strong opinions - can opt out. It is like this because more people participate, much like organ donor programs get more folks by a "yes by default" policy. And like organ donation, more is better in this case. If you have trust issues with the government or don't trust the safety of the rollout, perhaps elect a better government.
- alex77456 5y ago
  https://news.ycombinator.com/item?id=27436310 https://news.ycombinator.com/item?id=27436310