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back to article Care.data refuseniks will be DENIED CANCER SCREENING invites

Hundreds of thousands of NHS patients who opted out of having their details shared with private companies under the controversial Care.data scheme would not be invited to a number of cancer-related screenings – a terrible effect of the gaffe-ridden scheme. Care.data intends to extract GP information and share it with third …

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  1. Ketlan

    Nothing wrong here

    '...patients who have registered a Type 2 objection "may not have understood that this will mean that as a result, they will not be approached for direct care services like e-prescribing, bowel screening, e-referrals or e-pathology reporting."'

    Hmm... I registered a Type 2 objection via my surgery and I've just been prescribed bowel screening as part of a national programme to bowel screen all over-60s. Is there really a problem?

    5 4 Reply
    1. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: Nothing wrong here

      I presume that some areas are done by 3rd parties, so therefore cannot be handed over.

      For example my Physio was done by a private company, due to a shortage in the NHS

      4 0 Reply
    2. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: Nothing wrong here

      Or else they just put your objection letter in the bin. How would you know?

      18 0 Reply
    3. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: Nothing wrong here

      "Is there really a problem?"

      Yes, it APPEARS sir, that you registered your Type 2 objection, which APPEARS TO have been (unfortunately) lost / misplaced / misallocated. We apologize. Next!

      ...

      What, still here?! You WHAT?! Have your records amended?! You're having a laugh, mate, you can't amend a SYSTEM, what goes in the system, stays in the system! FOREVER!

      17 0 Reply
    4. SundogUK Silver badge
      Reply Icon

      Re: Nothing wrong here

      The system isn't operational yet, you berk. Whatever process was in position to contact people prior to care.data is still in operation.

      9 12 Reply

      1. This post has been deleted by its author

        1. Natalie Gritpants
          Reply Icon

          Re: Nothing wrong here

          Downvoted you because berk is not used enough. I would like to see more uses of the word wazzock too.

          14 2 Reply
          1. Mystic Megabyte
            Reply Icon
            Stop

            Re: Nothing wrong here

            I was told last week that the word Berk is not allowed in the Houses of Parliament. It's supposed to be rhyming slang for "Berkshire Hunt".

            3 0 Reply
          2. Anonymous Coward
            Reply Icon
            Happy

            Re: Nothing wrong here

            Upvote for wazzock, but I do feel we need to bring in more, numpty's, pillocks and twonks.

            7 0 Reply
            1. Anonymous Coward
              Reply Icon
              Anonymous Coward

              Re: Nothing wrong here

              "I do feel we need to bring in more, numpty's, pillocks and twonks."

              And scrotes. Plenty of scrotes in anything to do with the public sector and IT.

              4 1 Reply
              1. Rich 11
                Reply Icon

                Re: Nothing wrong here

                I'd like to register my vote for daft apoths. Prior to my next opportunity on 9th May, of course.

                2 0 Reply
              2. Anonymous Coward
                Reply Icon
                Facepalm

                Re: Nothing wrong here

                OMFG, now I have to learn your slang as well? (grumble)

                0 0 Reply
    5. Skoorb
      Reply Icon

      Re: Nothing wrong here

      If you have already been referred to a screening programme that moved to using the new automated extract your data will stay there, but just as it was before migration, so you will still be invited, but if you move or die you will continue to be invited at your old address, and any new people will not appear on the automated extract so may be missed unless a manual audit is completed by the local team.

      At the moment this only affects bowel screening, but the Diabetic Eye Screening programme is next on the list to move to a GPES extract through a system called GP2DRS.

      This has been known about for ages by some people(I in fact posted this warning on this very forum way back) but unfortunately it has taken until now for the HSCIC to finally realise.

      :-/

      0 0 Reply
  2. Zog_but_not_the_first
    Big Brother

    Easily fixed

    "According to Booth the problem could be fixed by adding a line of code to GPs' systems that distinguishes between patients who do noT wish to have their data shared with private companies under Care.data but still want their details passed on for nationally run cancer screening programmes."

    This looks like the complete solution.

    Unless there are other considerations

    16 0 Reply
    1. Gotno iShit Wantno iShit
      Reply Icon

      Re: Easily fixed

      Just coming here to say much the same. Are they going to add another line for the next national campaign, and another for the next after that? What a dumbass suggestion.

      2 1 Reply
    2. Graham Marsden
      Reply Icon
      Alert

      Re: Easily fixed

      The other considerations are the £100k it's going to cost to get that change made...

      2 0 Reply
      1. Anonymous Coward
        Reply Icon
        Anonymous Coward

        Re: Easily fixed

        You missed a few zeros off that

        2 1 Reply
        1. Anonymous Coward
          Reply Icon
          Anonymous Coward

          Re: Easily fixed

          I thought that's what the 'k' was for, but both of you neglected to mention that when they reboot it, it'll trigger the resending of opt-out forms to the entire population.

          3 0 Reply
  3. Neil Barnes Silver badge

    John 11:35

    Is it so difficult to understand? Those of us with complex or unusual medical problems are identifiable simply from the combination of those issues and the general area in which we live - we[1] do not want to be identified at some time in the future by, for example, insurance companies who don't understand 'spread the risk'.

    While we are quite happy, or sometimes positively enthusiastic, about helping medical research, we are somewhat less than amused at the thought of our information going anywhere *but* for medical research. That means *no* commercial use by insurers, advertisers and the like.

    That's where the issue is - not with 'you've opted out of this as well, accidentally' but with the initial concept of making available 'anonymised' data which clearly isn't to outside agencies.

    [1] I speak for me, and assume 'we'.

    43 0 Reply
  4. Anonymous Coward
    Anonymous Coward

    Privacy

    Death is inevitable, having your children's data sold to Putin isn't.

    17 0 Reply
    1. Mark 85
      Reply Icon

      Re: Privacy

      Death is inevitable, having your children's data sold to the highest bidder isn't, yet.

      FTFY.

      2 0 Reply
  5. Ian 56

    "but does not impact on their direct care"

    Nice use of the qualifier "direct" there, neatly rendering the rest of the statement meaningless.

    Anyone care to define the word "direct" in this context?

    Supplementary question: Did the Reg ask for a clarification of this?

    12 0 Reply
    1. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: "but does not impact on their direct care"

      "Anyone care to define the word "direct" in this context?"

      yes, as in "e-direct", which is "indirect"

      0 0 Reply
    2. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: "Anyone care to define the word "direct" in this context?

      Presumably, direct care is as a consequence of going to see a GP or attending A&E or other clinic.

      "Indirect" presumably means care offered as a result of your record being selected out of a database for screening or other checkups on the basis of risk factors in the records or inferred from them.

      There must be some kind of *direct coinage we could make up to describe being marketed to or having your premiums adjusted on the basis of your nhs records. Not sure what it would be, though. Addirect? Outdirect? Imdirect? ImDirect-Um?

      1 0 Reply
      1. Rich 11
        Reply Icon

        Re: "Anyone care to define the word "direct" in this context?

        ThieveDirect.

        0 0 Reply
      2. Mark 85
        Reply Icon

        Re: "Anyone care to define the word "direct" in this context?

        : Screwgoogled.? That should cover a bunch of these things.

        0 0 Reply
      3. Fluffy Bunny
        Reply Icon
        Headmaster

        Re: "Anyone care to define the word "direct" in this context?

        ""Indirect" presumably means care offered as a result of your record being selected out of a database for screening or other checkups on the basis of risk factors in the records or inferred from them."

        I think I understand. If you opt-out of sharing, you get the medical care you ask your GP to provide. But you don't get a bunch of anonymous pseudo-doctors going through them, deciding to sell their services to you. And by "sell their services", I include intrusive demands to participate in their "voluntary" screening programs. They may choose to call them invitations, but you know they will continus to "invite" you, until you give in and join. They are as bad as insurance salesment.

        If I lived in the UK, I would opt-out too. Too many upsides, nil down.

        And this is also relevant in Australia because we are slowing moving in the same govern them for my purposes, not for theirs, direction.

        1 0 Reply
      4. JohnMurray
        Reply Icon

        Re: "Anyone care to define the word "direct" in this context?

        Bowel cancer screening is done by non-NHS organisations.

        Most NHS pathology is now done by private contractors.

        Neither can receive confidential information about you if you opted out of the care-data scheme....but they can at the moment receive it from your doctors surgery.....

        As for private physio...I think you will find that you can self-refer to the local hospital physio dept, the surgery sends you for private physio because they receive a referral fee from the private physio.

        I got the ¨free NHS healthcheck¨ letter from my GP this morning...so I phoned to see why..

        I asked them if the practice got paid for the healthcheck, or whether it was part of the service. they said: ¨it is an extra, paid by NHS England to each practice, and it is one of our best earners¨

        Signed-up for that then,,,,

        0 0 Reply
  6. Anonymous Coward
    Anonymous Coward

    e-funeral

    click here to register

    4 0 Reply
  7. nematoad

    Thanks

    "... have committed to providing patients with an option that recognises their objection but does not impact on their direct care."

    How kind.

    7 0 Reply
  8. Anonymous Coward
    Anonymous Coward

    Needs to be Scrapped.

    so these 3rd party suppliers of screening programs etc are private companies that will be given our data if we opt for them to have it. and when its in their hands how do we have confidence in how they will handle this data. or if a health supplier in their own right will they use this info to add to their own data on their customers.

    Adding a line of code to GPs systems.. great these are not standard across the country as there are many suppliers of GP IT systems. so not as easy as HSCIC make it sound!!!

    The whole project needs to be SCRAPPED and though about again, Real consultation done and make it an opt in scheme if they still want it.

    Digitised medical records for the NHS would be a great benefit for clinical care. IF it was SECURE and only used in the NHS for patient care. BUT this would require a whole new system integrated across all levels from GPs to Mental Health, to screening to Hospitals and District Nurses, and Occupational Health etc. but as the existing systems are so fragmented and getting more so with trusts, commissioning bodies etc etc this will never happen and we all know what happens to GOVT IT projects, just look at care.data :-(

    I will still keep opted out. Time to send a DPA request to HSCIC i think

    12 0 Reply
    1. Anonymous Coward
      Reply Icon
      Unhappy

      Re: Needs to be Scrapped.

      "so these 3rd party suppliers of screening programs etc are private companies that will be given our data ...and when its in their hands how do we have confidence in how they will handle this data."

      Well let's face it, the public sector has a pretty piss poor record when it comes to keep data safe.

      0 0 Reply
    2. NotWorkAdmin
      Reply Icon

      Re: require a whole new system

      While I agree the NHS needs a computer system that works (which they don't) the last people I would trust to buy such a system is the NHS itself. In fact I'm not sure who I would trust to make that buying decision.

      0 0 Reply
      1. Charles 9
        Reply Icon

        Re: require a whole new system

        So you absolutely need a new system but trust no one to get it right, not even yourself...

        0 0 Reply
        1. Psmo
          Reply Icon
          Paris Hilton

          Re: require a whole new system

          "So you absolutely need a new system but trust no one to get it right, not even yourself..."

          Yup, that's my opinion too. Take a huge number of (what are effectively) small businesses with their own way of doing things, add in some local and national government-level operations with their organisational priorities and some representatives of big pharma with their 'needs' and try to design a system that makes them all happy ?

          What's more, in order to make the usual consultancy suspects even consider building and running it the contract would have to be so balanced in their favour as to make any penalty clauses pretty useless.

          Still, I think that if the project can keep a few key brains they might have learnt enough to do it properly next time, although Paris disagrees.

          0 0 Reply
    3. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: Needs to be Scrapped.

      "so these 3rd party suppliers of screening programs etc are private companies..."

      A bit like most GP practices, then.

      It's always a joy to hear the hypocrites of the Labour party spouting off about the virtues of the "public sector" NHS, when first line contact is about 95% through private contractors, who in addition to enjoying the wildly generous "loadsamoney for not much work" GP contract that Blair's administration signed, also normally charge their own premises back to the NHS, and earn fat bonuses for letting actual NHS staff use the surgery for other health service delivery.

      Just as well for the Labour party that the vast majority of the UK population have as their religion "NHS", but actually know jack shit about how the system is organised, delivered or funded.

      1 1 Reply
  9. Anonymous Coward
    Anonymous Coward

    NHS Special Offer!!

    Pimp your data - get care!! Don't sign anything now, and get the same free care you've always had, plus an exciting opportunity to inflate private sector profits and your insurance premiums!

    Coming soon to a GP near you! And don't forget - Think Of The Children, not your privacy!

    10 0 Reply
  10. David Pollard
    Pint

    Dr Neil Bhatia

    Dunno what Dr Bhatia's tipple might be, but he surely deserves a pint for his consistent efforts to bring the atrocious aspects of care.data and its precursors to the attention of the general public.

    14 0 Reply
  11. Graham Marsden
    Thumb Down

    In other words...

    "How can we flog off the NHS to Private Companies if all these inconsiderate plebs refuse to let us sell off their data so our mates can make big profits?"

    "I know, we'll tell them that they won't get proper health cover unless they let us!"

    "Excellent!!"

    15 0 Reply
  12. Anonymous Coward
    Anonymous Coward

    How about ...

    Sacking the twat that signed off on the concept of making patients' care dependent on them signing away their privacy?

    12 0 Reply
    1. Rich 11
      Reply Icon

      Re: How about ...

      I don't know if that was a twat but it might have been a Hunt.

      4 0 Reply
      1. Wommit
        Reply Icon

        Re: How about ...

        I really think it was a twunt (a bit of both.)

        0 0 Reply
    2. SImon Hobson Bronze badge
      Reply Icon

      Re: How about ...

      > Sacking the twat that signed off on the concept of making patients' care dependent on them signing away their privacy?

      Upvoted for that.

      Now, how about we all go and complain to the UK and EU data protection bods. Having a system where withholding consent means being denied something unrelated then consent is not "freely given" - it's extorted.

      3 0 Reply
    3. Anonymous Coward
      Reply Icon
      Anonymous Coward

      Re: How about ...

      Regardless of which politician was hook line and sinkered into adopting the policy, the order of the boot must surely be awarded to one of those who will make most out of this. Yes, step forward the former Independent journalist, founder of Dr Foster Ltd, and presently the Director of Patients for the NHS; I give you the <<..redacted..>> Mr Timothy Kelsey ! !

      As the Director of HR tells the HR people what to do, and the Production Director tells the Production Department what to do, so I imagine that the role of the Director of Patients is to tell Patients what to do. Yes, that's about right. The chap who did the Downfall parody was closer than he ever imagined!

      Seriously I think that imprisonment for Data Protection offences should be the least that Kelsey gets.

      0 0 Reply
  13. Anonymous Coward
    Anonymous Coward

    Second line and curious unanswered questions.

    Why would you need a second line?

    Why not segregate the companies that provide services in healthcare from the one's that don't?

    Another point is that not all hospital NHS and GP NHS systems are not all linked, I know this because on a recent hospital visit where they had an address from when I was a child.

    And finally what if you changed your GP, do your old records get uploaded or do you have to contact them all?

    This is just a complete joke.

    0 0 Reply
    1. phil dude
      Reply Icon
      WTF?

      Re: Second line and curious unanswered questions.

      No, it is not a joke. The government has looked at the data they hold and realised they cannot possibly maintain control unless they have:

      a) all communication information to protect subjects from themselves.

      b) a means of getting rid of subjects that can no longer profit "the masters" by "reclassification".

      c) ration healthcare in order to break up communities and subdue dissent by increasing time to service.

      Supply and demand. Control one, control the other.

      Too Paranoid?

      P.

      0 0 Reply
    2. Fluffy Bunny
      Reply Icon
      Facepalm

      Re: Second line and curious unanswered questions.

      "Why not segregate the companies that provide services in healthcare from the one's that don't?"

      Better idea... just don't allow companies onto the system that don't provide healthcare?

      0 0 Reply
  14. Gordon 10
    WTF?

    2 Simple solutions

    Use GP surgeries to co-ordinate any screening or similar program. Since they will have a full set of records there wont be a problem.

    They will also be able to screen out those people who would normally come into scope but shouldn't. ie avoid sending screening letters to those already in the terminal stages of the disease.

    Alternatively give up trying to flog my medical data to the private sector. Ring fence it for the NHS and public (university) research only with a punishment equal to 10 years in prison AND 10% of worldwide turnover for the person AND the company who misuses it.

    Since the 10% of worldwide turnover fine is already used in simple anti-trust cases I see no reason to have anything less stringent for my personal data.

    6 0 Reply
  15. Turtle

    Funny People.

    You people are funny. First you pay hospitals to kill elderly patients by giving them bounties for putting those patients on the Liverpool Care Pathway. Now you have decided that patients who desire any degree of privacy deserve to get cancer.

    http://en.wikipedia.org/wiki/Liverpool_Care_Pathway_for_the_Dying_Patient

    2 4 Reply
    1. Wommit
      Reply Icon

      Re: Funny People.

      Turtle, while I agree with you about the absurdity of this situation, I have to point out that decisions like these aren't taken by rational beings. No, they are taken by lawyers and managers. The senior staff at the hospitals and health trusts, those who don't get their hands dirty helping the patients. The people to whom patients are numbers and trends, inconveniences.

      If there was any way to show that their 'bottom line' could be improved by as little as 1p per year by keeping patients alive, or patients details private, then they would fight to do so. However there is too much money to be made by killing^W allowing patients to die with dignity. Besides, it saves on the food bills too.

      4 0 Reply
      1. Turtle
        Reply Icon

        @Wommit Re: Funny People. (With Greetings to Max Weber)

        I disagree with your post for a reason but it's for a semi-technical reason: I do not subscribe to the same definition of "rationality" as you think you do - but actually don't.

        To me, "rationality" is a consonance of means and ends. Means that can achieve the desired ends are rational; means that can't are irrational. In fact you recognize this in your post as you are fully aware that your health bureaucrats are able to formulate ends and devise means to achieve them (in this case, the end is saving money and the means are financial inducements to kill elderly patients).

        That you or I do not approve of the ends being achieved does not mean that they are acting irrationally - as long as the means that they have chosen to achieve their ends can be reasonably be expected to achieve those ends then their behavior is "rational".

        And that does seem to be the case.

        My idea is that people are almost always rational and if someone's behavior seems "irrational" (in the technical sense in which I have explained) then the most likely explanation is that you don't understand or approve of the ends that they are trying to achieve. (Obviously human stupidity needs to be accounted for but again, "stupidity" is "stupidity" and different from "irrationality". People do make mistakes, after all. Sometimes it seems that "making mistakes" is mostly what they. But that's not news, now is it?)

        0 1 Reply
    2. PJI
      Reply Icon

      Re: Funny People.

      If you are from the country that seems to think giving 45% of its population no proper health cover and bankrupting many of the rest who do pay insurance, or refusing them insurance for illnesses that may require private insurers to pay up, or has a lower longevity and higher infant mortality than almost any European country, including GB, then I think you are not in a position to comment.

      Another thing to remember: the press, Wiki and similar need to be treated with scepticism as reliable sources of information.

      One can always find bad examples. Odd how seldom the same seekers look for good ones. Interesting that the bad examples are sufficiently egregious that they get reported. The good ones are so normal that nobody remarks upon them.

      3 0 Reply
      1. Turtle
        Reply Icon

        @PJI Re: Funny People.

        What we do here is no excuse for you. And that's even making the obviously incorrect assumption that you have any idea about anything in the US, because you don't. But you just keep getting your understanding of the US from people who have political reasons to distort the facts, so that when things like this happen, you can be easily distracted.

        0 0 Reply

  16. This post has been deleted by its author

  17. N2

    Bastards

    or is this the start of two tier treatment?

    smacks of 'your vital treatment is only available if we can flog your medical history...'

    Absolutely disgrace & thankful I no longer reside in dis united kingdom.

    2 0 Reply
  18. teebie

    Here's a hint

    If youto build trust in your information-sharing system, trying not to sound like a fucking supervillian when you are trying to persuade people to use it.

    0 0 Reply

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