back to article NHS England backs down over another data extraction scheme

NHS England has backed down from yet another data extraction scheme, after details emerged of backdoor plans to gather patient appointment information. The episode has echoes of the on-going Care.data debacle, a scheme that has been heavily criticised for its lack of public consultation in sharing patient information with …

  1. Vimes

    I would have thought if this had gone through that it would have forced GP practices to abandon EMIS. There would be no other way to comply with the 7th data protection principle otherwise (that steps are taken to adequately protect data). In addition I wonder if EMIS would have committed a criminal act had they complied?

  2. Doctor Syntax Silver badge

    After all the fuss they've walked into by now you'd have expected them to have learned some lessons. But no.

    Experience is a dear teacher but there are those who will learn by no other. It's time to start making things dear for CEOs & the like. For their own good, of course. It will help them learn.

    1. CaptainHook

      After all the fuss they've walked into by now you'd have expected them to have learned some lessons.

      *****

      Lessons were learnt, unfortunately the lesson wasn't sale of patient data is bad, it was don't let privacy campaigners find out about the scheme ahead of time.

      1. Anonymous Coward
        Anonymous Coward

        Basically they just don't understand (or simply don't agree) that this is our personal data - as far as they're concerned it's the NHS's data, so what's the problem with hoovering it out from whatever of little data silos it's stored in, as and when they want it? Heck, I can't even see my own medical records online, just a one-page summary of medications. The NHS needs a fundamental reset of its relationship to patients.

  3. Anonymous Coward
    Anonymous Coward

    I see what they want the appointment data is for. It's so they can plan effectively provided services because we all get ill at the same day and time.

    I'm sure it has nothing to do with number of appointments for a patient and what use or value that data could be to insurance companies, Oh look Sicknote has visited the doctors 12 times this year lets up the premium.

    Why am I getting so cynical with regards to our government?

    1. Vimes

      ...or maybe it's just so they can remind the patient when they've been identified as a regular user that the visit is 'funded by the UK tax payer'. Much like they seek to do with medication costing more than £20. They want to instill as much guilt in people as possible when they use the NHS that they never go anywhere near it.

      http://www.theguardian.com/society/2015/jul/01/nhs-prescriptions-drugs-health-cost-waste-price

      It's getting to the point where if I went into hospital I wouldn't be surprised if I was fed alphabetti spaghetti and the words 'just die already' end up appearing multiple times in my bowl. Just by chance of course...

      The response to the following FoI request doesn't give me much confidence that they have any sort of clue as to what they're doing - they're going ahead with a scheme without even knowing the benefits, and they probably aren't acting with any more precision or clarity when it comes to appointments either.

      https://www.whatdotheyknow.com/request/cost_of_displaying_the_cost#incoming-681133

    2. Anonymous Coward
      Anonymous Coward

      ... or more likely where practices are underutilized (overserved).

      1. Vimes

        Given how many clinics now refuse to take new patients because of lack of resources, I find it difficult to believe that anything gleaned from this could in any way justify either the cost of asking for & processing the required data or any invasion of privacy that results from it.

  4. Tubz

    In other words, NHS England got caught trying to do mass spying on patients and did a u-turn quicker than Cameron taking his family for a pub lunch. Why they didn't just ask GCHQ or all the data !

  5. AnoniMouse

    There is no such thing as de-identified data

    Join anoymised data with a few other data sets, stir in a big data lake and, hey presto, all (well, strictly, much will be revealed.

    The myth of data anonymisation needs to be debunked forthwith.

  6. Mr Smin

    EMIS doesn't own this data

    Would the government write to Oracle to get data on Tesco's logistics? Each GP is a business with a contract to provide NHS services and they own that appointment data, not EMIS.

    (Tesco / Oracle example for hyperbole only)

  7. Peter Gathercole Silver badge

    "de-identified patient level data"

    The lesson that they've (whoever is suggesting such things) really not learned is that "de-identified patient level data" is not de-identified enough.

    They way they look at it is that once it is de-identified, that it's not usable to track individuals. Until they realise that it's still possible to tie the data to an individual by synthesis with other data sources, we will get this happening over and over again.

    If I put this story together with others that have been in the news, this is someone in government trying to more accurately estimate how much missed appointments cost the NHS, in order to try to work out a policy to minimise the 'loss'. I'm not really fussed about this type of exercise, except to point out that it's a futile operation, because the results would be meaningless.

    There's some naieve politicians who believe that a missed appointment is wasted time, and thus money. In reality, it's not, because of the way that pretty much all NHS appointment systems take missed appointments into account by over-booking the system. If you're unlucky enough to be in the system on a day when people don't miss their appointments, especially if you've got one late in the session, then you'll find that your appointment time is wildly optimistic, and you end up being seen hours later than your due time as the surgery or clinic overruns it's opening hours to see all of the patients that have been booked in. It's no wonder that many GPs and specialists complain about over-work.

    Unfortunately, this exercise is unlikely to increase capacity, but may ultimately be used to generate revenue through 'missed appointment' fees if the bean-counters believe that the value generated from these fees would exceed the cost of administering and collecting them.

    The sooner the politicians and the civil servants that advise them are given some real training in Data Protection and IT in general, the better IMHO.

    1. Alan Brown Silver badge

      Re: "de-identified patient level data"

      "Until they realise that it's still possible to tie the data to an individual by synthesis with other data sources"

      They do realise. They're hoping the Great Unwashed don't.

  8. x 7

    A point to note is that if they had got hold of the EMIS data, they would no longer need the care.data information for those surgeries.

    It would be interesting to know if the other big three companies were also approached - TPP, Microtest, and INPS. Between the four they probably cover 95% of GP surgeries.

    I also suspect none of them would give up the data without a court order: trust is too important to their business.

    Where did the letter leak from? Nice bit of politicking by someone, I've never seen a government department backtrack so quickly.

    1. Alan Brown Silver badge

      "I also suspect none of them would give up the data without a court order: trust is too important to their business."

      TPP have amply demonstrated to me that they're not particularly competent. At one point they blocked about half of TalkTalk's IP ranges from being able to use the system and then tried to blame it on enduser browsers, before going completely schtum.

      1. x 7

        "TPP have amply demonstrated to me that they're not particularly competent. At one point they blocked about half of TalkTalk's IP ranges from being able to use the system "

        I'm guessing here, but there may be a very good reason - one they can't openly talk about. Over the last 12 months the main UK GP data companies have been subject to prolonged spear fishing attack attempts both by e-mail and phone. I can't say more for obvious reasons, but the similarity to the USA hacks should be apparent.

        The last time I heard, TalkTalk/AOL UK still had open e-mail relays. The two facts may be related, certainly TalkTalks e-mail has been hacked more than once in the last couple of years

  9. Anonymous Coward
    Anonymous Coward

    what did they want this for?

    Track patients,

    see missed appointments,

    see who is a hypochondriac,

    see which people on welfare actually visit the GP,

    impose fees.

    see what and how long GP's have surgeries for and how many people they see so they can "impose" contacts for 24/7 surgeries so patients don't turn up at A&E. (you will need a letter from your GP to get seen in A&E even if brought in blue light by ambulance)

    Dont worry we wont hear anything from politicians for a month or so as they get a recess from 21/07/2015 so they can enjoy spending their 10% pay rise on summer holidays.

  10. nematoad Silver badge
    WTF?

    Gah!

    "We are now looking to work with GP surgeries directly to support them in collecting the information needed about appointments."

    What possible interest is there to anyone in that other than me and the doctor's surgery? I mean it's an arrangement between me and them.

    It could be as others have said to gather data on how many appointments have been missed, but surely they could just ask the surgery "How many patients didn't turn up?" No need to ferret around with my data, identifiable or not .

    Oh, and lastly: "De-identfied".

    Using that sort of portmanteau word should be made an offence. Use "anonymise" if you must, though even that is a bloody ugly sin against the English language.

    1. Richard 12 Silver badge

      Re: Gah!

      'Cos "anonymised" isn't possible to do due to the ease of combining it with other data to link it with individuals or small groups.

      Of course, neither is "de-identified", they must have been hoping nobody would notice.

  11. Anonymous Coward
    Anonymous Coward

    If you collect it, they will come (for it)

    Promises of confidentiality are really just so much bollocks, aren't they?

  12. Doctor Syntax Silver badge

    Meanwhile the e-referrals service is going from strength to ???

    Back in June I had a letter from the GP to make an appointment giving one of three possibilities

    Went onto the site & put in the credentials. Not recognised.

    Phoned the 0345 number instead. Amazing! They could get onto the system. Made an appointment & a few days later an appointment letter came followed by a cancellation in the next post saying another appointment would be made.

    Last week, having heard nothing I phoned the hospital.

    They explained the appointment had been made with the wrong clinic but couldn't log on to make another.

    Rung back today & told there were no appointments available as yet.

    As another hospital had been included in the original list I went back online to see if I could rebook with that. Amazing! I could get online!

    System then told me that a completely different clinic had been notified & they should have been in contact by several days ago. Name and address of clinic given but only the choose & book general phone number.

    Went back to the GPs secretary. She finds that the clinic is on answerphone...

    NHS should really concentrate on getting its essential IT services running properly instead of playing with trendy Big Data.

  13. Grumpy_Matt

    If you come

    I live in Gravesend, I was referred to Dartford, I was then referred to East Grinstead for my op, it would have been so much easier to attend a London Hospital, was I given any choice? Nope. Where is the choice; Medway, Maidstone, Dartford all outsource "Plastics" to East Grinstead. I accept that there is specialism, but why have an NHS that lies about choice?

  14. Wutbuerger

    The NHS is nothing compared to the BMG

    You folks haven't seen it all yet. Check out what is happening in Germany. Reichsgesundheitsminister Gröhe, Führer of the BMG, is forcing patients into his wet dream of a new health care system for the Reich. People have absolutely no right of privacy, no control over their data, do not get informed, do not get asked, have no choice other than to die, and those few who resist get turned down so far in every court of law. 750,000 people have signed a petition against this Nazi scheme of a health care system so far. Reichsgesundheitsminister Gröhe is giving a shit and is doing everything to hand over all patient data to the privat company Arvato, one of Germany's worst data laundries. Arvato is part of Bertelsmann, which belongs to the country's oligarchy Mohn.

    See http://ddrm.de/ and stoppt-die-e-card.de/ for details.

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