back to article One million patients have opted out of Care.data

More than one million patient opt-outs have been implemented for the controversial Care.data scheme, the Health & Social Care Information Centre (HSCIC) has said today. Those patients have opted out of having information that identifies them "being shared outside of the HSCIC for purposes beyond direct care". The major …

  1. Dr Paul Taylor

    Do we have to opt out again?

    Is this name change an excuse for disregarding the opt-outs? "Oh no, sir, you opted out of Care.Data, but that no longer exists - you haven't opted out of NHS.Digital, so we have your consent to sell your records."

  2. Dan 55 Silver badge
    Devil

    "The opt-outs have been applied retroactively from April 2014"

    So the data is not anonymised at all.

    May I be the first to say "bastards".

    1. Sebastian A

      Re: "The opt-outs have been applied retroactively from April 2014"

      The way I interpret it, is even after opting out your data is still shared, just not in a way that leaves you identifiable.

      Supposedly.

  3. Anonymous Coward
    Anonymous Coward

    NHS Digital

    pass me the sick bucket.

    I cant wait until I am seen by my Digital GP,

    my dentist shoves his Digitals in my mouth

    and I need an Orthopaedic surgeon to fix my own Digitals after too much angry keyboard pounding.

    In other news the Government denies the new NHS Digital CEO has any experience in monetising data being a former banking consultant.

    "What? OMG look at that Big Red Bus!" replied Jeremy Hunt when asked to comment.

    1. Velv Silver badge
      Gimp

      Re: NHS Digital

      Just wait until the digital proctologist comes along...

    2. Anonymous Coward
      Anonymous Coward

      Re: NHS Digital

      Sadly, he's my local MP and just as bad down here.

      1. Synonymous Howard

        Re: NHS Digital

        What? Your MP is a digital proctologist? At least we would know he has his finger on the problem.

      2. Adrian Midgley 1

        Re: NHS Digital

        Would you work to change that, please.

  4. Anonymous Coward
    Anonymous Coward

    " £4.2bn to "bring the NHS into the digital age"

    It cost the NHS £10bn last time they tried (and failed) to do this, so I guess they do learn from their mistakes.

    1. JayBizzle

      Re: " £4.2bn to "bring the NHS into the digital age"

      Don't forget you need to triple the number to work out the real amount of money going to be wasted.

      £12.6Bn it is!

  5. Anonymous Coward
    Anonymous Coward

    I'm sorry but this should be opt-in, no if's or buts. This is only for the government to make money selling our data and will make no difference to our care.

    Claims about finding drug usefulness are rubbish, if you want to find that out then look at the prescription rates, high prescription rate = effective treatment. A doctor isn't going to keep prescribing a drug that doesn't work as well as an alternative.

    Claims about targeting care are also rubbish, just keep track of referrals, they would actually be better than making assumptions about future care based on a medical record. Maybe go one better and invest in mobile hospitals for certain procedures so the care can be moved as and when needed.

    I also get the feeling that this "opt-out" is a one time only event as I really can't see them setting up a system to scan for opt-outs when it isn't in their interest, there is also the fact that you wouldn't know or potentially have any way of finding out if your data was in this system. Furthermore thinking about the fragmented systems your GP data may not get in but how would you stop any records held by a hospital should you need to attend? Does anyone actually believe they would link your opt-out to your NHS number?

    1. Velv Silver badge
      Boffin

      I'm in no way defending HOW this has been done (government is shit), or some of the WHYs, but the statistical analysis and big data elements are actually groundbreaking. You find correlations in seeming unrelated data through proper analysis, and things like prescription rates and referrals are related data so they don't count as big data analysis.

      1. AMBxx Silver badge
        Boffin

        correlations in seeming unrelated data

        Hmm, random noise. Let's have a proper hypothesis first rather than just poking around to see if we find something.

        1. BebopWeBop Silver badge

          Re: correlations in seeming unrelated data

          Not necessarily. While I agree - get an hypothesis and start migrating it into a theory whenever possible, observations (say something as obvious as smoking related diseases) can form the basis for thinking about the hypothesis.

          But then who am I to worry - I *always* carry a cucumber, chewing gum and a small piece of pasta (dried) when I fly.

          1. BebopWeBop Silver badge

            Re: correlations in seeming unrelated data

            But that does not excuse the way that this has been introduced and the no doubt pitiful anonymity (and security)

        2. 2+2=5 Silver badge
          Joke

          Re: correlations in seeming unrelated data

          Correlations in seeming unrelated data

      2. Anonymous Coward
        Anonymous Coward

        If they truly wanted to use big data for the benefit of the patients then they would just pull conditions, treatment, effectiveness, date, gender, age and nothing else.

      3. Kane Silver badge
        Boffin

        "You find correlations in seeming unrelated data through proper analysis"

        I have a website that'll be right up your back alley.

    2. Rich 11 Silver badge

      there is also the fact that you wouldn't know or potentially have any way of finding out if your data was in this system

      You might, once the sales offerings from health insurers starts dropping through your door but not the doors of your healthier neighbours.

      1. Anonymous Coward
        Angel

        I'll fix that for you, the Sales Brochures go through your healthier neigbours doors and you can't get any insurance- cause that's the way profit crumbles

    3. Paul Shirley

      GPs regularly prescribe inappropriate and useless treatments to pushy patients demanding treatment rather than wasting time convincing them that, for example, antibiotics won't help their cold. They frequently don't know if treatments prescribed in good faith actually work. Prescription rates are a terrible way to assess efficacy.

      Such a pity we can't trust them to use this data to solve that problem.

    4. Adrian Midgley 1

      Wrong about the stats

      and inferring effects from usage (or prescription, or dispensing - once I've written a prescription who knows what happens to it, although pharmacy companies like electronic transfer since it increases the proportion of prescribed items which are dispensed ...) is not very good, alas.

      As for the opts-out - I'm surprised it is only a million, or more precisely, I would be surprised were it so few as a million.

    5. annodomini2

      RE: OP

      "This is only for the government to make money selling our data and will make no difference to our care."

      The Gov has no real need to make money, however current party funders are generally in the business of making money somewhere.

  6. Adam 52 Silver badge

    'Those patients have opted out of having information that identifies them "being shared outside of the HSCIC for purposes beyond direct care'

    I haven't. I opted out of *all* sharing. In writing. By registered post. In 2004.

    If I'm in HSCIC at all I'll be very upset and there will be a complaint to the GMC for breach of confidentiality.

    1. Skoorb

      The HSCIC does know about you.

      Well, you will certainly have some data in an HSCIC system as they run the GP registration database, so if you have ever been registered with a GP or issued an NHS Number, you will be on the NHAIS and PDS if nothing else.

      The NHS Central Register was originally the old national ID system from the second world war - everyone already had a national ID card so they simply reused the old ID numbers as NHS numbers (only renumbering everyone in 1995). It's even run out of the General Register Office.

      For staff who have access to this old system to trace people as part of their job (patients have an annoying tendency to move house and not tell you) - for people around when the NHS was founded in 1948 they can see their entire address history and every GP they have been registered with, along with their old second world war ID card number.

      Another Big Fun Database is the Secondary Uses Service (SUS). If you have ever set foot in a hospital since 1987 details of that care "episode" (with your NHS number) will have been transferred to the SUS. Even if it's as simple as "patient booked into A&E, but refused to wait and went home". Currently, around 125 million records a year are added to this system, with returns being sent on a monthly basis. Don't worry though; most psychosexual stuff (fetishistic transvestism etc) HIV and IVF records are pseudonymised or anonymised at submission.

      The best way to find out what information the HSCIC does hold about you (and the HSCIC does hold information about you, whatever opt-out method you have tried to use) is to complete a Subject Access Request form and ask them to send you a copy of all information (don't bother with the paper record request part of the form, you are only interested in the digital bits). If you GP has screwed up and transferred information without your consent you can then involve the ICO to have the data removed.

      You can see a list of many of the national NHS Digital systems at http://systems.hscic.gov.uk/.

      Another thing that most people don't realise is that GPs have a contractual requirement to have their entire medical record and administration system hosted by a private company. Around 50% of GPs have their records hosted with EMIS Group plc, around 2,500 practices and 40,000,000 patients are on TPP's SystmOne (the underlying database there is a MS SQL instance of about 700 terabytes) and most of the rest are on INPS Vision.

  7. x 7

    so another useless prat parachuted into the NHS from outside, with no experience of working from within. Total absolute waste of time and money.

    as for " 16 years at Accenture", we all know what that means: even more expensive outsourcing with projects that never come to fruition.

    The NHS is pretty well digitised already - what it needs is more money and more support for the systems it has, not top-imposed new solutions to problems that are not there.

    1. Anonymous Coward
      Anonymous Coward

      Ugh

      16 years at Accenture

      Working for Accenture is not a positive. That alone should have disqualified him from being put in any position of authority or trust.

  8. MrKrotos
    WTF?

    What pisses me off right now is I asked my doc about this on my last visit and he stated that we dont have to worry about "opt-out" as the scheme is now dead.

    When I asked where he got that info from he said the surgery was informed via the normal channels.

    Whats really scary is that most of the people I mention this to have no idea about all of this at all "No idea what you are talking about"

    So yeah, sounds like its working as planned!

  9. Wolfclaw Silver badge

    OH FK ! They put a banker in charge of the NHS, can see me having to take out a mortgage to get treated and pay off an arm and a leg for the overdraft !

    1. davidp231

      An arm and a leg

      Payment taken in advance, of course...

      1. Anonymous Coward
        Anonymous Coward

        Re: An arm and a leg

        "Payment taken in advance, of course..."

        no its more profitable for him to take a golden parachute after a few months / years.

      2. Alan Brown Silver badge

        Re: An arm and a leg

        "Payment taken in advance, of course..."

        Yup. It's called Tax and NI

        NHS care is not free. You already paid for it. Jeremy Hunt and friends want you to pay for it twice.

  10. Mark 85 Silver badge

    So the news is that they aren't "fixing it" or changing anything but the name. By that logic, then things will be all better. </sarc>

    1. Anonymous Coward
      Anonymous Coward

      they are changing the name as HSCIC has bad press.

      Digital NHS sounds new fresh and free of the burdens of HSCIC (same Faeces different name)

      anyone got the turd polish?

  11. Oldfogey
    Holmes

    Noel Gordon?

    Sounds like the NHS is at the Crossroads.

    1. x 7

      Re: Noel Gordon?

      "Sounds like the NHS is at the Crossroads."

      showing your age there Old Fogey

      I bet you miss watching her don't you?

  12. Anonymous Coward
    Anonymous Coward

    Too much BS

    "....it does not capture the full ambition.

    From today it is NHS Digital. We want to make sure people are aware this is an extraordinary and noble project."

    When did a name have to capture ambition? Especially when it is a name of a public service. Why can't a functional name be just as good? Also i think (in my case anyway) they failed to make me aware through the new name of just how extraordinary (doing sneaky stuff with data, not that extraordinary) and noble this project is.

    This all sounds like an explanation for a new £150,000 logo that is the same as the old one.

    1. Mark 85 Silver badge

      Re: Too much BS

      Whlst I quite agree, it's this: When did a name have to capture ambition? I'll respond to.

      Governments are over-stuffed with corporate types who live in their own worlds. Ever read the PR BS behind a new logo? A product name? They're filled with this kind of fluff and buzzwords. And so it goes.....

  13. Uberseehandel

    Vulture Censorship

    I wrote a post yesterday setting out the real problems with the NHS,and its approach to Information Systems. This was based upon my experience in another country with a national health service, so it was what might be termed an informed opinion.

    It wasn't polite about anybody involved in the general NHS mess and the IS mess in particular, but it was factual.

    Mysteriously, it has disappeared. Who might do such a thing?

  14. Anonymous Coward
    Anonymous Coward

    Wrong people making decisions..

    The telling thing is that there's a distinct lack of high level data protection or information security personnel within the NHS in general, they may have senior information risk owners, they may have caldicott guardians but those aren't typically experts in the field, they'll usually be taking advice from others within the organisation who are - and then get over-ruled later.

    It's not always the case that those at the top know best especially when it comes to ethics and legislation.

  15. John Munyard

    Hmm

    That result is really a shame, because it shows overwhelmingly that a strategy based around public apathy has succeeded in putting around 98% of clients into pot who will have their data shared,

    And I fully expect that shortly it will be announced that since 98% of the people do not object, that there is no longer any reason to exclude records from commercial data sharing since most people "agree" and thus the inconvenient gap will be arbitrarily closed anyway.

    As the man said : "all your base are belong to us..."

  16. Medical Cynic

    New systems

    There are new systems coming on line so probably best to opt out again. At least 2 Reed codes are needed now, compared with only one previously..

    More info here: http://www.nhsdatasharing.info/

    William

  17. Anonymous Coward
    Anonymous Coward

    oh?

    I don't remember having seen anything through the post about opting out? Or is it one of those opt outs when you need to find an opt-out form locked in a carboard box, weighted, and dropped to the bottom of an ocean at an undisclosed location (because: privacy, you know, matters).

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