back to article UK.gov's hated Care.data project binned

The controversial Care.data patient information-sharing scheme has today been binned. The closure of the scheme was announced in a statement by minister for life sciences George Freeman MP. It follows a review by the National Data Guardian Fiona Caldicott which recommended better safeguards for the sharing of patient data. …

  1. Alister Silver badge
    Holmes

    Not enough public confidence, says minister

    No shit, Sherlock

    1. Anonymous Coward
      Anonymous Coward

      Re: Not enough public confidence, says minister

      Dr Watson prescribes laxatives.

  2. Anonymous Coward
    Anonymous Coward

    So how much did latest "super" project actually cost us the taxpayer?

  3. Blank-Reg
    Big Brother

    Excellent news.

    Now, we await for this Chameleon to morph into something similar, be repacked, re-branded and sneaked out. Paranoid? Me? Never. Definitely cynical though...

    1. Anonymous Coward
      Anonymous Coward

      You are correct.

      They can put it into this then sell it off,

      http://www.theregister.co.uk/2016/06/03/home_office_mega_database/

      No one would be the wiser. They can also justify it by saying that police need access to your medical record for policing purposes.

    2. Anonymous Coward
      Anonymous Coward

      Now, we await for this Chameleon to morph into something worse, be repacked, re-branded and sneaked out. Paranoid? Me? Never. Definitely cynical though...

      TFTFY

  4. Anonymous Coward
    Anonymous Coward

    "Therefore this work will now be taken forward by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients."

    Translation: "We're going to carry on with the project and just not tell you about it, so you can't get all arsey"

    1. Roger Greenwood

      Just rebrand it data.care - sorted.

      1. Anonymous Coward
        Anonymous Coward

        After input from Google the data will be reformatted, referenced to biometrics, location and Facebook.

        To keep some of the naming convention it will be renamed "their.data" to avoid confusion about ownership.

      2. Gordon 10 Silver badge

        Fixed that for ya

        Just rebrand it data.care Sellafield - sorted.

      3. Anonymous Coward
        Anonymous Coward

        Just rebrand it data.care - sorted.

        NHS Digital, data portal --- No NOTHING to do with HSCIC or care.data HONEST !!!!!!!!

    2. Anonymous Coward
      Anonymous Coward

      > Translation: "We're going to carry on with the project and just not tell you about it, so you can't get all arsey"

      And so that everyone who has previously opted out will have to opt out again.

  5. Stanislaw
    Holmes

    Buried

    I wonder why they chose today to announce this... oh, hang on...

    1. Ed

      Re: Buried

      There aren't many quiet news days at the moment though, are there?

  6. CAPS LOCK Silver badge

    Another gubmint IT fiasco?

    I'm shocked. Still, I'm sure all the other overreaching, privacy compromising projects will go perfectly. Who was it who said "Insanity: doing the same thing over and over again and expecting different results."? Some German bloke, probably Hitler.

    1. Pascal Monett Silver badge

      "all the other overreaching, privacy compromising projects will go perfectly"

      Well look at it this way : all the ones we don't know about are likely a splendid success.

    2. allthecoolshortnamesweretaken

      Re: Another gubmint IT fiasco?

      Not even close, sorry.

      The quote is usually attributed to Albert Einstein - but there is some reasonable doubt about it.

      And Hitler was an Austrian.

  7. Anonymous Coward
    Anonymous Coward

    Next up

    Google.care.data

    1. staringatclouds

      Re: Next up

      Google.c̶a̶r̶e̶.data

      FTFY

      1. Teiwaz Silver badge

        Re: Next up

        Unable.to.resist.South.Park.Reference...

        Google.underpants.data.???.profit

  8. M7S
    FAIL

    "patients must be allowed to opt out of their personal data being used"

    No. Just No.

    Whilst I really do appreciate the benefits that can be gained both to some individuals (the patients I mean, not just "managers") and the population as a whole by using data properly for a range of purposes, given the issues around protection of data, patients should be required to specifically opt in if they want their data used for anything other than direct delivery of healthcare.

    Even then proper anonymisation needs to be thought through, although I can see the use of being able to contact people found in some unrelated test for freckles to have "gene xyz" if it is suddenly later found that having gene xyz and walking on the cracks in the pavement during a full moon leads to suddenly going blonde (that's not a typo), so it is a toughy. maybe some sort of means of contacting people to say "we think you might want us to be able to check and discuss something, can we have your permission to unlock the account" (and yes, then there are issues for those without the capacity to make that decision) would be useful.

    But on the whole "opt out"? Well, I can foresee that if I get treated in some casualty unit 150 miles from home, that if I don't re-tick the box on a form I might not actually see on the receptionist's terminal then my consent is suddenly assumed to be in place again.

    1. Pookietoo

      Re: my consent is suddenly assumed to be in place again

      Surely your consent would be a part of your record, which this non-local A&E would be able to see, but not change?

  9. Jemma Silver badge

    Toxic legacy leaking across the NHS...

    Which particular one did you mean? The one with the MDR infections.. Or the one with the monumentally poor cancer care? Or the one with the nurses that think once you're over the age of 80 you need to be treated like a patient of Dr Mengele so you can recall happy memories of times gone by..

    As far as I can tell the NHS reflects a mixture of the monkey dust "Porton Down" and "NHS" sketches.. And a fair percentage of patients would make extras for the "breakfast fatties" sketch. Look them up - you won't know whether to laugh or contemplate suicide.

    Toodles...

  10. phuzz Silver badge
    Boffin

    I can kind of see the original idea. Giving scientists access to the medical records of an entire population would surely lead to advances in medical knowledge (that new drug you're taking for $disease, you'll be lucky if it's been tested on more than 100 people). However, there's really obvious privacy implications.

    How can people's data be anonymised enough that they can stay private, but still be useful for research?

    1. Ken Hagan Gold badge

      "How can people's data be anonymised enough that they can stay private, but still be useful for research?"

      Probably they can't. Whilst there may be things you can discover about broad swathes of the population, the majority of discoveries (especially as we get down to genetic medicine) probably are useful precisely because they identify a small subset of the population. There's a whole class of serendipitous findings that are particularly likely to be based on data that clearly identifies individuals, found by going on a fishing expedition in the national dataset.

      On the other hand, any such discoveries are likely to be biased towards the people whose records were used in the research and the youngsters don't seem to give a toss about living their entire lives on social media. Perhaps *they* could be persuaded to opt-in.

      It's a cultural thing, though. Iceland is a centre for this kind of research because they've chosen to allow it and deal with the consequences. Likewise, outside of the health sphere, some countries publish full tax records for the population whereas I'm fairly sure that the older generation in the UK think that's only one step away from publishing nude selfies.

    2. Adrian Midgley 1

      Send the questions out rather than

      the data in.

  11. Anonymous Coward
    Anonymous Coward

    Haven't seen a doctor in years.

    Maybe I'll actually register with a doctor in the general vicinity of my home now they won't sell my details any more.

    1. This post has been deleted by its author

      1. Anonymous Coward
        Anonymous Coward

        Re: Haven't seen a doctor in years.

        Who cares? We're all going to die.

        1. Spanners Silver badge
          Facepalm

          Re: Haven't seen a doctor in years.

          Some will die sooner than others.

          It is considered rational to not want to be in the "sooner" group.

          1. Anonymous Coward
            Anonymous Coward

            Re: Haven't seen a doctor in years.

            But not at any cost.

            I knew the very small increased risk I was putting myself at and weighed it against the level of violation care.data represents and decided it was a risk worth taking.

            1. This post has been deleted by its author

              1. Anonymous Coward
                Anonymous Coward

                Re: Haven't seen a doctor in years.

                I can understand it affecting you in that way.

                There's another way to take it as well, but enough on this morbid subject.

                1. Anonymous Coward
                  Anonymous Coward

                  Re: Haven't seen a doctor in years.

                  I wasn't registered with a doctor for three years. That changed when I needed dental treatment - I had to be registered with a doctor in order to register with a dentist.

                  Try saying "Who cares?" when you need a root canal!

                  1. Anonymous Coward
                    Anonymous Coward

                    Re: Haven't seen a doctor in years.

                    I received dental treatment and no Doctor was invoked or mentioned, they do want your NHS number though

                    1. Anonymous Coward
                      Anonymous Coward

                      Re: Haven't seen a doctor in years.

                      I didn't need a doctor or an NHS number to get a filling.

                      Sounds like a postcode lottery.

  12. Huns n Hoses

    Round up the usual suspects to tender again.

    "However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients."

    Yup, the project will be rebooted. This is the true neverendum.

    1. Paul Webb

      Re: Round up the usual suspects to tender again.

      Aren't we still having an EU neverendum?

  13. John Smith 19 Gold badge
    WTF?

    National Information Board

    WTF are they?

    What is their remit?

    Who's on this?

    NHS. DWP? HMRC? GCHQ?

    I smell a very large rat, and it's growing.

    1. TRT Silver badge

      Re: National Information Board

      Reminds me of the National Coal Board. Perhaps they're going back into mining?

      1. Anonymous Coward
        Anonymous Coward

        Re: National Information Board

        Not the Coal Board.

        Where do you think ex-employees of the British Potato Council ended up?

        1. TRT Silver badge

          Re: National Information Board

          That's the old British Potato Council. The new British Potato Council, however, is just a chip off the old block.

  14. John Crisp

    Bugger

    There goes that £325 million.....

    :-)

  15. Anonymous Coward
    Anonymous Coward

    remain absolutely committed to realising the benefits of sharing information

    plain English: we'll keep burning the money whichever way we please, and you can do fuck all about it. AND you don't know how to burn it, while we have solid, continuous and PROVEN experience!

  16. Anonymous Coward
    Anonymous Coward

    in order to retain public confidence

    retain:

    1. continue to have (something); keep possession of.

    2. absorb and continue to hold (a substance).

    3. keep (something) in place; hold fixed.

    4. keep (someone) engaged in one's service.

    none of it applies here, so I guess... it doesn't matter :/

    1. TRT Silver badge

      Re: in order to retain public confidence

      Government speak. They have their own language. I commented on it many years ago when I sent a two page letter of complaint to the CSA pointing out why they can't refer to me as a "customer" in their correspondence. When I requested a copy of the data they held on me some years later, (yes an ongoing dispute that has still never been resolved), I noticed that they had made comments on my file following the letter describing me as "a belligerent nit-picker whose comments should be disregarded as being irrelevant to the case at hand". Which is odd because they wouldn't stop harassing me and allow the mediated and mutually agreed "informal" arrangement I had made and had ratified through the court stand - I thought a "customer" was someone who had engaged the services of a professional when I had neither engaged them or considered their approach professional.

      TL;DR version... the government have their own language which is desperately at odds with the general understanding of a word's meaning.

      1. Anonymous Coward
        Happy

        Re: in order to retain public confidence

        Most civil servants are nit-pickers it goes with the job, not too many are belligerant though just rule bound (a bit worse than being egg bound)

  17. PaulR79

    "However, the government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients."

    I assume I'm not the only one that read "remain absolutely committed to realising the benefits" as "finding a way to get money out of this" on here.

  18. Mike 137 Bronze badge

    prohibiting medical records sharing

    Here is a sample standard letter for restriction of medical records sharing, created when this scheme was first proposed. It might still be of use.

    "I absolutely prohibit in perpetuity any sharing of my medical records with any person, other legal entity or agency, except in the specific cases of [1] access to my records with my explicit consent or exclusively for therapeutic purposes in support of treatment of a medical condition with which I present or [2] where required without the option by statute or order of the Court.

    For avoidance of doubt, this prohibition applies to any current or proposed scheme of medical records sharing envisaged or planned at the date of this letter and equally to any plan or scheme of medical records sharing to be conceived, invented or proposed at any time in the future."

  19. Catherine White

    Livestock of the state

    I have lost count of the number of times I have written to my GP to make it clear that I do not want my medical records to be 'shared' (which I naturally take to mean either 'sold to the highest bidder' or 'used covertly for some repellent social-engineering purpose', or possibly both).

    Every time the government changes the scheme's name one's objection appears to be reset; presumably they hope eventually to wear people down or catch them out.

    There have been some comments, presumably from collectivists, which suggest (as did the Telegraph article, which is a fine example of ruling class tops-downism) that we the people are no more than the livestock of the state, to be dealt as the farmers see fit, and that the NHS must 'crack down on hysterics' who don't like their data being 'shared'.

    To those people I would say: you belong in East Germany in the 1970s; the world is shaking off your curse, and the harm that you can still do is steadily diminishing, together with your relevance.

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