back to article Campaigners cry foul over NHS Digital plans to grant policy wonks and researchers access to patient-level data

"Rich" and "granular" patient data from hospital and GP records could be shared with policymakers and researchers under new plans from NHS Digital. Campaigners have criticised the move, which would see far more detailed information shared higher up Britain's health and social care food chain, warning it has echoes of the …

  1. }{amis}{ Silver badge
    Joke

    consultation that is buried in the basement of a consultation

    Presumably guarded by a leopard?

  2. Doctor Syntax Silver badge

    Matt Hancock strikes again. Is there no limit to his enthusiasm/knowledge ration? https://www.bbc.co.uk/news/health-47652060

  3. Chris G Silver badge

    Sounds to me

    As though ' All your health data are belong to us' and that everyone in the health sector from the bloke who unblocks the toilets in the local A&E to Uncle Tom Cobbly and his health insurance company will have access.

    Glad I won't be in that system.

    1. JimPoak

      Re: Sounds to me

      For those who are not in the know the dwp is all ready trawling medical records using non-clinical staff this now makes it official. Every quack, charlatan and marketing scam will end up targeting the old and vulnerable. So how do I know the dwp has been trawling medical records? They had in their possession and without my person information that only could have come from medical records.

      This Pile has been brought to you by.....

  4. nematoad Silver badge
    Unhappy

    Sod off.

    The prospect that this "rich clinical detail"

    Ah, that's the bit that stood out for me. It's a gold mine of data just waiting to be exploited.

    And who are the beneficiaries of this little scheme?

    Not the owners of said data, i.e. you and me, that's for damned sure.

    Keep these vultures off my most personal and sensitive data. They are welcome to it when I'm dead and gone.

    1. cantankerous swineherd Silver badge

      Re: Sod off.

      a caring sharing labour govt (prop t blair) dictated that our medical records are "owned" by the secretary of state for health. the pass was sold a long time ago.

      1. Anonymous Coward
        Anonymous Coward

        Re: Sod off.

        (My wife works fairly high up in the UK Medicines and Healthcare products Regulatory Agency, hence the reason for A/C.)

        I wouldn't read too much into "previous" data sharing schemes, not if you knew the actual reality, data collection inside the NHS and public medicines bodies is a complete mess - its stuck in the 80s, there is little normalisation of data, by this I mean, data collected by hospitals is subjective "opinions" written by Dr's and other professional, often is text/sentences etc. Likewise there is very little standardisations of measurements, for example, one Dr write "High levels of pain" another writes "Pain 8/10".. Which if you've done anything with databases or data analysis, you'll know is useless (except for human reading)

        But something does need to be done, we're missing a massive opportunity. "WHHATT?" you scream, well, Imagine a drug has been licensed for acne treatment, but they later find it could also have extremely effective impact to slowing/stopping alzheimer's, but its not licensed, the NHS can't generally prescribe it. So, you wait severals years for the manufacturer to run a trial and apply for a license (if they can be bothered) - Or, how about if a group of GPs could quickly be co-opted to run a virtual-trial, with patients from their surgery, the findings are reported back in a "standardised" way, that allow the manufacturer and MHRA to quickly establish its effectiveness and license it within 12 months (compared to 5 years, doing it the traditional way).

        It's a crude example, but hopefully it gives the picture... Imagine the same for a cancer treatments.

        It's easy to say "over my dead body", but honestly, with a properly integrated and digital NHS, we could become the world leader in treatment development. And since with Brexit, we'll no longer be part of the European drugs licensing scheme, pharmaceutical companies either won't bother licensing them here, or we'll get them last (they'll go for the biggest markets first, i.e. Europe, USA, China etc etc), so doing something to attract them, can only be beneficial (both for our own health and economy).

        1. Warm Braw Silver badge

          Re: Sod off.

          we're missing a massive opportunity

          We're really not. By far the bulk of the work of the NHS is mundane and routine, so any potential improvements are merely around the edges. The biggest opporunity for health improvement is to promote the lifestyle changes that would reduce obesity - that's not even a medical issue. Some of the biggest medical scandals (such as mesh implants) are due to the lax rules for the introduction of medical devices, not the failure to notice their impact.

          Facebook promotes the "massive opportunity" that could arise from connecting the world and we've seen where that leads: a trivial reduction in the effort required to communicate with people you don't like at the price of the ultimate destruction of civil society.

          1. Anonymous Coward
            Anonymous Coward

            Re: Sod off.

            Yes, really we are, and I know this is divisive, and I'm the first person to scream when data is abused (I work in Infosec).

            Your focusing too much on the life-style choices. What I'm talking about is addressing the massive gap we have in areas of research and diagnosis - For example, if you've got 500 children (or adults), spread across the UK, suffering a rare illness, having a linked up NHS could allow their data to be used to effectively develop treatments (or discovery what has worked best). 1 particular patient in Cornwall respond incredibly well to a specific treatment, Dr of another patient in Scotland, can immediately see this, and issue the same treatment.

            Have you not noticed in the past 20 years a massive decline in treatment/drugs discovery? Pharma companies are goliaths and risk-averse, they only invest in treatments that are going to offer a return. If the costs and/or risks are too high, they don't bother. Hence why there is so little private investment into rare-diseases, difficult cancers and cutting edge treatments. The development is too expensive and will likely never pay for itself

        2. nematoad Silver badge

          Re: Sod off.

          It's easy to say "over my dead body"

          Of course it is. After I am dead how can I object to whatever use my data is put to?

          What I'm trying to say is that it might be a nice idea if we were given the opportunity to either opt-out or agree to this data grab. After all, the GDPR has already said that you must give your informed consent to the sharing of data much less sensitive than your medical records.

          1. MAF

            Re: Sod off.

            Actually you (or rather your surviving relatives) can.

            NHS data protect differs from 'normal' data protection in that the patient identifiable data is protected for the deceased as well as the living.

        3. Trollslayer Silver badge

          Re: Sod off.

          Valid pints but you have not addresses the idea that policy makers could have access to data on individuals without their permission.

          It is that which rightly makes people angry.

          In addition we shouldn't have to rely on a system being a shambles to protect our privacy.

          Then there is the waste of money on previous schemes.

          1. Anonymous Coward
            Anonymous Coward

            Re: Sod off.

            From the trials and projects my wife has been involved with, any data used is anonymised.. your right though, the reason everybody screams about this, is because the people running the projects are shit at engaging the public imagination and answer their questions/concerns.

  5. Pan_Handle

    Rich?

    Rich data... Well ripe for crude abstractions rather than any real insights (by NHS England anyway, who brought you NHS 'Quality Dashboards').

  6. Doctor Syntax Silver badge

    Yesterday we were in the local outpatients' department for SWMBO to attend a clinic. Today we got an automated patient survey with questions such as "would you recommend it?". What sort of answers do they expect? Yes, I'll tell all my friends to go there irrespective of whether they have that particular condition.

    Unfortunately SWMBO picked up the phone. Had it been me I'd have logged it as a spam call to a TPO-registered phone.

    1. Trollslayer Silver badge

      I was at the doctor's this week and when a let reception know I had arrived they asked if I would be happy to answer a short survey later on.

      However this is a well run surgery.

      1. Chunky Munky
        IT Angle

        Whenever I get asked this question, either by street collectors or over the phone, my response is 'How do you want to pay? I accept cash cheque, paypal or BACS' This always confuses the hell outta them, but if they want my data they can pay for it.

        So far I've not had anyone take me up on it, but a lot of span phone calls have stopped :)

  7. The Nazz Silver badge

    Lead by example.

    If Matt Hancock ( et al ) think this is a good idea, let them lead by example and make all their own, and close families, private health data freely available.

    Several years back, when the then PM Blair, whilst telling all us plebs that we must have the multiple MMR jab,. wouldn't even give a simple yes/no answer as to whether his own little sprog had had the jab.

    But as per usual, when many millions of people use Facebook, numerous health apps, and don't care a toss what happens to their personal data what hope is there?

    wtf does every aspect of life, this C21 life, have to be digitalised?

  8. Conundrum1885

    Re. Dismal fail

    On the flip side at least folks folks doing legitimate scientific research will have data coming out of their ears.

  9. macjules Silver badge
    Paris Hilton

    Oh yeah, sure

    "Rich" and "granular" patient data from hospital and GP records could be shared with policymakers and researchers under new plans from NHS Digital.

    You mean Facebook and Google. Seems like the rest of the planet is prostituting itself to flog as much personal and marketing data as it can to those behemoths without a care or consideration to anyone.

    What a wonderful time to be alive ...

  10. John Smith 19 Gold badge
    Gimp

    "would be shared with researchers or policymakers has put the wind up campaigners."

    Rightly so.

    An NHS data fetishist is just like every other one of them

    Someone with a grossly disproportionate interest in your (and everyone elses) business.

    It's not a policy option. It's a personality disorder.

    proper data interoperability is a good idea, but once the mechanism is in place what it's used for a policy decision, and let's face it the UK government track record is that they don't give a s**t about the people whose data it is. They get lost in all sorts of abstractions which (you will be told) are for "The greater good."

    Whose "greater good" ?

  11. Chris G Silver badge

    Rich and Granular

    Aren't these modern buzzwords and phrases just great?

    Translated, ' rich and granular' means all of your data down to the tiniest detail, warts and all. Think what a marvellous contribution you will be making to healthcare/drug marketing/health insurance/richer better targeted advertising direct to you etc.

    1. John Brown (no body) Silver badge
      Coat

      Re: Rich and Granular

      "Translated, ' rich and granular' means all of your data down to the tiniest detail, warts and all."

      Oh, right. Thanks. I thought it was Nescafe Gold Blend.

  12. Anonymous Coward
    Anonymous Coward

    What is going on at NHS Digital?

    They're cutting staffing levels but don't want to make redundancy payments, so they're looking at demoting people instead to try to force staff to leave.

    They organise staff "briefings" at large corporate venues at the tax payer's expense despite having major network infrastructure to support telecomms.

    And now this.

    Hardly covering themselves in glory at the moment.

  13. Alan Ferris

    Snomed CT

    There's been talk of moving to Snomed CT for at least a year before I retired, but the main computer system (Emis Web) was certainly running on the old Read codes when I looked at it last Tuesday.

    1. J.G.Harston Silver badge

      Re: Snomed CT

      When I was working in GP IT, EMIS and SystemOne could import each other's data, and that's something like 85% of the market covered.

    2. StewartWhite

      Re: Snomed CT

      Ah the good old Reed codes. My favourite is E845, “accident involving spacecraft injuring occupant”.

  14. RedCardinal

    >pseudonymised

    That's made up word isn't it? Either something is anonomised or it isn't

    Intersing how this would comply with GDPR. Have patients given their permission for this "pseudonymised" or not?

    1. Pascal Monett Silver badge

      Yes, it was made up, but there's a specific definition.

      Concerning GDPR, in five days that'll be a moot point and, as for permission, yes they have, by the act living under the good UK Government.

    2. GrapeBunch Bronze badge
      FAIL

      "NHS Digital said in a statement to The Register that it had committed to ensuring that sensitive data collections would be pseudonymised at source before collection."

      To me that means that only new records would be passed on, unless existing clients of the NHS had their records pseudonymised before they were created (collected). But I bet it means something else to the NHS data scrapers.

      I'm sorry, even with the definition, a pseudonym is insufficient protection for a patient's information. For example, it is doubtful that they will garble the postcode enough that "researchers" cannot figure out where the patient lives. Nor is it likely they will make everyone 29 years old.

      A taxi driver picked up a fare. "Do you know where I can buy some scrod, I hear it's delicious". The taxi driver replies: "I've been driving cab for two decades, and I've received many requests in that regard. But I've never before received it in the pluperfect tense."

      Happy destination scrod, British. Though I doubt that the jurisdiction where I live is better.

  15. itzman
    Facepalm

    What???

    "Using patient information for funding decisions by policymakers is just toxic, and they know that."

    So how else are they supposed to make funding decisions?

    In response to minority moaning?

    Virtue signalling for political motives?

    I WANT someone to know that there is for example an excess of deaths from cholera in a given postcode.

    It is fairly vital to know that, for example, those of 'certain ethnic backgrounds' are more susceptible to Thalassemia, and others to heart problems.

    Blue sky research by private institutions is all very well, but the NHS has to be seen to be spending money rationally on a cost benefit analysed basis.

    If it cannot see the results of spending, if it cannot see what money needs to be spent on, how can it do that?

    Medical research is plagued by fads conjectures and outright fashion. It needs hard statistical data to prove its case.

  16. Trollslayer Silver badge
    Mushroom

    We have one hope

    That is will be as successful as NHSpfIT.

  17. A.P. Veening

    Interesting

    I'd recommend the British government finishes Brexit first, is probably a lot easier and definitely a lot less controversial.

  18. steviebuk Silver badge

    Doesn't sound good...

    ...considering at work a few months back we got sent a phishing email. Oh look, its spoofing an NHS.net email account. Check the headers. OK, that's interesting, its not spoofed. The return address is valid. So someone has broken into an NHS.net account and using it to send phishing info. Nice. Why don't they have 2fa on? Unless their device was compromised as well.

    I reported to nhs.net. Never did get a reply. Rude.

    1. Anonymous Coward
      Anonymous Coward

      Re: Doesn't sound good...

      stevieuk,

      "I reported to nhs.net. Never did get a reply. Rude."

      Not rude ..... probably did not know what to do with your 'report' !!!

      If it was picked up by the 'wrong' person it would be ignored as the correct response would be 'someone elses job' and they would get 'pulled up' if they tried to deal with it.

  19. J.G.Harston Silver badge

    I had a pre-op and post-op endoscopy and asked the consultant if I could have a copy of the photos.

    * Oh, I don't think so, data protection you see.

    * But it's *my* innards!

    * Yes, but it's our data.

    So it looks like you have no rights to records about your personal bodily existance. I know that "copyright is vested in the creator, not the subject" and wotnot, but that's taking it a bit too far.

    1. Anonymous Coward
      Anonymous Coward

      "So it looks like you have no rights to records about your personal bodily existance"

      You categorically do have a right of access to your medical data. Under previous data protection legislation, there was allowed to be a £50 charge for it. Under current legislation, you just get it.

  20. Ozzard

    Excellent technical idea to standardise on SNOMED rather than the present patchwork of coding systems. It's sound, can be compositional based on a description logic model, and could in theory convey very rich information indeed.

    Bonkers political idea to mandate centralised access to same. There are perfectly good federated data access systems out there that can provide just-in-time access to only the required data with strong legal guarantees about what it'll be used for (I know, I architected one). Use them and ditch the arbitrary centralisation. Oh, and break up EMIS while you're at it, as they've already got about half of Care.data along with a big chunk of your pharmacy data and have no compunction whatsoever about selling access to that.

  21. Anonymous Coward
    Anonymous Coward

    "pseudonymised"

    My daughter was diagnosed with a condition so uncommon fewer than 90 children per year are diagnosed with it in the entire UK. So I'm sceptical of just how effective the concealment this "pseudonymised" data provides if it is also "rich". Broadly sharing "rich" medical data inevitably opens up what should be private information.

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

Biting the hand that feeds IT © 1998–2019