back to article NHS blows £5 MILLION on delayed Care.data

The NHS has so far wasted spent £5m on the controversial Care.data scheme, which has been hit by a series of delays due to a public outcry over plans to share personal medical info with world+dog, El Reg can reveal. According to a Freedom of Information response, NHS England spent £2.5m each in 2013/14 and 2014/15, with …

  1. Tom7

    Editorial failure

    Thats "£5 MEEEELLION," surely.

  2. DocJames
    Coat

    Thank god the NHS is flush with cash. Imagine wasting all that money if funds were tight.

    (it's the ragged one)

    1. Vimes

      Just imagine it. They might actually be forced to do something about problems like this:

      http://www.telegraph.co.uk/news/health/news/10133557/Pharmaceutical-scandal-The-NHS-the-drug-firms-and-the-price-racket.html

  3. Jimmy2Cows Silver badge

    No issue

    The issue is how do we sensitively attune to issues around patient data confidentiality.

    I must be missing something. What "issue"? This is private, personal medical data. There is no issue. It must be kept private, within the NHS only.

    Not the NHS and carefully chosen affiliates.

    Not sold to any old mucker with a wad of cash that comes asking.

    Not passed to insurance companies.

    Not innumerable other questionable practices that I can't think of right now.

    If an individual's records are pertinent to some private pharma's reseach, private pharma must seek permission to use that data from the individual concerned, via the NHS so the individual can remain anonymous at all times unless they agree. There can be no direct communication between pharma and individuals until consent has been granted.

    And, if said individual consents, that information must be given freely, never sold. In fact, it should be illegal to sell it. And the recipient must be legally bound to keep that information private, not sell it on. This needs to be backed with threat of serious prison time. At least try to take steps to remove any incentive to be a twat.

    I am not against the centralisation of patient medical data. It seems a no brainer, that you can find yourself in any hospital in the UK and that hospital has instant access to your medical history, treatments, investigations, test results, medications, allergies and so on.

    But it is not a cash cow that can be used as some kind of prop for NHS funding.

    1. Richard Jones 1
      Mushroom

      Re: No issue

      While I agree wholeheartedly with your comments, one issue should be covered. Irregular reactions to treatments and their relationship to underlying conditions.

      Most of us are aware that some people have a bad reaction to nuts, some to milk and some to other foods and treatments. There must be a way to flag up when patients have a condition which causes an unwanted reaction to an otherwise useful treatment.

      However, this does NOT require some billion pound 'will not work edifice'. It needs a reporting process that allows such problems, (NOT PATIENT DETAILS) to go through a central register of 'bad combinations' to flag up warnings to those who prescribe treatments.

      A simple 'a case with X reacted badly to Y treatment' is all that is required. With a warning that Y treatment should be avoided for patients with X.

      Absolutely no money should be involved.

      1. Anonymous Coward
        Anonymous Coward

        Re: No issue

        @ Richard Jones 1

        > one issue should be covered. Irregular reactions to treatments and their relationship to underlying conditions.

        It would be cheaper to give these people a medical bracelet* for free rather than use any sort of IT system.

        [*] Stainless steel, not nickel ;-)

        1. Richard Jones 1
          Flame

          Re: No issue

          It does not work that way as my daughter found to her considerable cost. She has an underlying problem its interaction with some treatments was known only to a few in the medical profession (and more outside). GPs were mystified by her situation though a 'specialist' saw the answer instantly. She should never have been given a long term treatment.

      2. David Pollard

        The 'yellow card'

        The 'yellow card scheme has been running for a few decades now to collate details of untoward side-effects of medications. There are options to use paper or the internet to file reports, though the interface for the latter is pretty ghastly.

        https://en.wikipedia.org/wiki/Yellow_Card_Scheme

    2. NeilMc

      Re: No issue no smissue.....

      And in most certainly should not be sold to money grabbing, Ambulance Chasing Solicitors or borderline criminal Wheel Clampers...... Like other Government bodies have done.....

    3. Anonymous Coward
      Anonymous Coward

      Re: No issue

      "But it is not a cash cow that can be used as some kind of prop for NHS funding."

      unfortunately the amount that companies will pay for this data will be less than its actual value.

      and we the NHS customers who supply all this data will be the ones paying for the system not the companies "buying" it

      the Government want the UK to become the centre for Drug research so will be almost giving this information away but the companies (big Pharma) will then just siphon it off to their US labs.

  4. Pascal Monett Silver badge

    "a programme in which we have invested a great deal of time and thought in developing"

    The problem does not appear to be the amount of time they put into thinking about the program, but how much they forgot to include in the design specifications in the first place.

    Apparently, the notion of Privacy did not manage to be even invited to the discussions.

  5. Anonymous Coward
    Anonymous Coward

    "The issue is how do we sensitively attune to issues around patient data confidentiality."

    By opting-in people by default, to share their data with any unspecified company at any unspecified time, without further notification whenever this happens.

    Obviously.

  6. Anonymous Coward
    Anonymous Coward

    Issues

    "The fact is, this needs to not happen. The fact is this needs to not happen now."

  7. colinb

    Pandora's Jar

    What a sad state of affairs, the data here could be massively useful in helping research in understanding causes of illness and finding solutions.

    There is just one small problem with the NHS and Government,

    WE DONT TRUST YOU, you incompetent oafs

    - You have set new world beating standards of failure in IT systems implementation

    - No way back once this data is misused.

    - Flash Pharma will screw you 6 ways to Sunday before you've realised its Monday

    - Insurance desperately want unique user pricing based on real data.

    Oh dear Mr B IT consultant, Surrey, hm daily train commute, strong correlation with early heart attacked by age 55, that's a 10% loading and we'll only cover up to age 50, feel free to reapply then, yes the premium could be quite large but this is based on real (NHS) data so no point arguing, yes another company not paying the NHS for data will cover you of course.

    Unless they know we're refused you ... if we tell them, which we will, fraud protection is so important.

  8. Anonymous Coward
    Anonymous Coward

    What price Transparency?

    The Care Data Program Board, very reluctantly, published papers from 3 meetings - October, November and December 2014 - then claimed that further papers could not be published "because of pre-election purdah".

    They are still not on the website http://www.england.nhs.uk/ourwork/tsd/care-data/prog-board/

    If you look at the Publication Plans, most of the relevant papers are "exempt" - and the remainder heavily redacted.

    It is not clear why the TOR state that the meetings will normally be held in private or why there is, apparently, such fear over the possibility that the public might read the minutes and papers.

    What has happened to the stated desire for Transparency?

  9. Qu Dawei

    Surely they should have worked out this fact?

    This is the latest in a long line of failed IT projects that the NHS and government have wasted millions on. Haven't they realised that they can't do it yet? Or haven't they realised that penalty clauses might have helped in a few cases/ Or haven't they realised that much more tme and care needs to be taken on specification before wasting money on coding?

    I think they should be legally barred from attempting to commission any more IT projects like this until some major changes have been made that have been examined in great detail to see that they have no obvious flaws. And examined by experts, not just some jumped up official who has persuaded people he or she can take on the job.

    1. chris 17 Silver badge

      Re: Surely they should have worked out this fact?

      how would you define a project like this, i'm fairly sure it'd be easy to write some words to infer new project is different to failed project that is banned.

  10. chris 17 Silver badge

    if they really want to do this then they should rap it in law that says for confidential internal NHS use only, no sharing, any change in the law permitting sharing will result in destruction of the data.

    Then they can gather data and get the research they want. If they want to extend teh project they will have a template to work from and experience in handling this data

POST COMMENT House rules

Not a member of The Register? Create a new account here.

  • Enter your comment

  • Add an icon

Anonymous cowards cannot choose their icon

Other stories you might like