back to article Care.data is a complete omnishambles, says study into hated scheme

The hated Care.data scheme was dysfunctional and undemocratic from the get-go, according to a new case study from wannabe boffins studying on Cambridge University's Masters of Public Policy programme. The peer-reviewed case study is published in Technology Science, which describes itself as an open-access journal for those …

  1. Yet Another Anonymous coward Silver badge

    Assumptions

    It is only a shambles if you make the unwarranted assumption that the purpose of the scheme was to improve things for patients.

    If you were to dispassionately analyse the scheme you would determine that the purpose was to collect patient data for immediate advertising and for eventual privatization, enrich consultants, and reward minister and civil servants with future directorships. And that it performed admirably.

    1. Richard Taylor 2

      Re: Assumptions

      And that it performed admirably.

      Well in the short term it has enriched consultants (what large government IT project does not), in the medium term maybe ministers and civil servants may get the sinecures the obviously deserve *hemm hmm). Whether the data will be released to the marketeers remains to be seen.

      1. Yet Another Anonymous coward Silver badge

        Re: Assumptions

        Whether the data will be OFFICIALLY released to the marketeers remains to be seen.

        I'm sure it will end up released soon if it hasn't already been

    2. Soap Distant

      Re: Assumptions

      That's quite the problem, massive inconsistency - the NHS has most stringent IG and data protection in place, depending on where you are, suddenly this crock of... flies in the face of all they've worked for.

      I'd be happy to write on this, Ikabai SItal :)

      SD

  2. Richard Taylor 2
    Holmes

    No

    shit

  3. Anonymous Coward
    Anonymous Coward

    As General Turgidson so wisely said...

    "Well I don't think it's quite fair to condemn a whole program because of a single slip-up"

    (when facing criticism that one of his commanders had just "exceeded his authority" and launched a large nuclear strike.)

    1. John G Imrie

      Re: As General Turgidson so wisely said...

      Dr Strangelove should be on every ones must watch list.

  4. Graham Marsden
    Holmes

    See icon...

    ...for details

  5. Anonymous Coward
    Anonymous Coward

    Change in the law

    The Register contacted NHS England regarding the study, and a spokesperson told us "There has been a change in the law so that patient information can only ever be used if it will benefit health and care.

    Could anyone tell me which change in the law they're talking about? I'm quite interested.

    1. Adam 52 Silver badge

      Re: Change in the law

      Health and Social Care Act 2012

      but that allows the data to be collated, it doesn't somehow retrospectively grant permission from patients or override decades of common law. Or at least it shouldn't, but most of the judges who would have defended common law have retired.

      1. JohnMurray

        Re: Change in the law

        It does however override the data protection act with respect to patient data and NHEngland..

    2. Anonymous Coward
      Anonymous Coward

      Re: Change in the law

      Also, you (the English) will need to watch for the law reversing that decision.

    3. Adam 52 Silver badge

      Re: Change in the law

      Sorry the change is in Care Act 2014:

      "Information Centre may do so only if it considers that disseminating the information would be for the purposes of—

      (a)the provision of health care or adult social care, or

      (b)the promotion of health.”

      Not exactly a cast- iron safeguard is it!

      1. Anonymous Coward
        Anonymous Coward

        Re: Change in the law

        So as long as they practice wilful ignorance they're in the clear.

        Figures.

  6. JohnMurray

    It does not say whose, or which, health and care it will benefit.

    Or in which way. It may well benefit my health and care if local councils had full access to my health information. Or capita....which already has anyway..

  7. Anonymous Coward
    Anonymous Coward

    Opted out from the off!

    Got a feeling that once ain't gonna be enough with these bastards.

  8. Trollslayer

    Good medical practice

    My local practice mailed out forms allowing you to opt out of everything.

    I'm not bothered about the blackmail where you won't get screening notifications because we probably won't have having those anyway.

    1. Keef

      Re: Good medical practice

      Nice to hear your practice got in touch, mine didn't.

      From memory I used the faxyourgp service, and I did get a call a few weeks later from my practice.

      They told me they had received my request but were not sure what I wanted.

      I explained over the phone to them what it was about and they said I would have to come in and fill out a form.

      So they have a form but don't know what it's about, hmm...

      1. Anonymous Coward
        Unhappy

        Re: Good medical practice

        Will they know what to do with the form once you've filled it out?

    2. JohnMurray

      Re: Good medical practice

      "My local practice mailed out forms allowing you to opt out of everything"

      As far as you know. Your data is still extracted though. And your opt-out only lasts as long as "they" allow it to.

      1. Adam 52 Silver badge

        Re: Good medical practice

        As far as I can tell from reading the evidence to the commons select committee no data is being extracted. Is that not the case? [I've asked my gp and hospital, both are dodging the question]

        I'm also curious as to what makes people think that DPA no longer applies. There's no mention of relaxing DPA rules anywhere in the legislation so is there some legal principle I don't understand?

    3. launcap Silver badge

      Re: Good medical practice

      > My local practice mailed out forms allowing you to opt out of everything.

      So did mine. With the rider that opting out would mean my electronic prescriptions would no longer be delivered to the pharmacy of my choice (or any other). So in order to get my diabetes meds I'd have to put in my repeat request as usual, go back two days later, pick up the prescription forms, wait for them to be signed (30 minutes to two hours) then take them to the pharmacy (and wait 30 minutes for them to be filled).

      Do-able but a pain in the fundament. Especially given that I work..

      1. F0rdPrefect

        Re: Good medical practice

        So in order to get my diabetes meds I'd have to put in my repeat request as usual, go back two days later, pick up the prescription forms, wait for them to be signed (30 minutes to two hours) then take them to the pharmacy (and wait 30 minutes for them to be filled).

        Change pharmacy to one who will sort the repeat out for you.

        We use the one in the supermarket where we do our weekly shop.

        We drop the repeater in a week before we want to collect and the prescription is ready for collection the following week, together with the next repeater.

        I actually do it for collection a week before I actually need them to allow for cockups eg one time the drugs were held at the surgery pharmacy, rather than being sent to mine, so I had to have a day off work to sort things out.

  9. sad_loser
    Unhappy

    care.data is ....

    the turd that won't flush.

    I work in informatics and do a lot of work in/around the NHS and they spend so much time gold plating the most minor stuff and then mess up all the really big things.

    Information Governance is not handled too badly at a local level but that is irrelevant if at a central level the captain has broken the team's bats.

    The people in HSCIC at a junior and mid level are decent people trying to do a good job, but higher up there are a lot of people who are promoted way above their knowledge or competence.

  10. Anonymous Coward
    Anonymous Coward

    government IT fu*k up... no sh*t sherlock

    Can we introduce a minimum qualification for any IT related decision... too many idiots make laws about technology when they have no clue themselves...

    When can we have personally liable politicians.... you make a stupid decision without much advice and waste time, money, people's lives... etc

    Shoot em all... except the ones who can work a computer beyond playing candy crush when they should be working (ref required... but it was on el reg.)

    1. Pascal Monett Silver badge

      Politicians are personally liable

      But their liability is restricted to reelection times - if their approval rating is bad, they don't get enough votes and are not reelected.

      You will never get a law allowing for the condemnation of a politician over wasted money - not if the money was wasted following official procedures. If that happened, nobody would present themselves for election anymore because there would always be someone to think that a given project was a waste of money, ergo lawsuits all the time.

  11. derfer

    Data protection

    I received the letter telling me about it. In the data protection section it said something like 'we have no plans to share your information...at this time'. I opted out, but to do that I had to go to my local doctors surgery in person.

    1. Martin Gregorie

      Re: Data protection

      I received the letter telling me about it. In the data protection section it said something like 'we have no plans to share your information...at this time'. I opted out, but to do that I had to go to my local doctors surgery in person.

      You need to do more than that: read the small print.

      I did and, as a result, sent separate opt-out requests to my GP surgery and to the hospitals I've been treated in and so who hold (part of) my medical history. The hospital personnel understood exactly why I was contacting them and registered my opt-out without questioning it.

      Everybody who cares about the privacy of their medical data, i.e. not letting it get into the hands of the insurance industry, needs to do the same.

  12. Anonymous Coward
    Anonymous Coward

    Unrealistic expectations

    The curse of any initiative mandated by a politician

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