back to article Revealed: NHS England bosses meet with tech and pharmaceutical giants to discuss price list of millions of Brits' medical data

Talks to package millions of British medical records into a vast, commercially valuable database that may then be sold on are already underway between NHS England bosses and global giants, documents exclusively obtained by The Register show. Last month, a cache of leaked files emerged into public view, detailing post-Brexit …

  1. The obvious

    Dido Harding...

    ...as in the same Dido Harding who presided over TalkTalk when it was getting hacked?

    I have the utmost confidence our data will be completely safe, secure, and not abused in any way... not!

    1. diodesign (Written by Reg staff) Silver badge

      Re: Dido Harding...

      The very same.

      C.

      1. Anonymous Coward
        Anonymous Coward

        Re: Dido Harding...

        "NHS Improvement chairwoman Baroness Dido Harding"

        Ah, I was wondering why the NHS had improved so much recently...

        <coughs>

        1. Anonymous Coward
          Coat

          Re: Dido Harding...

          <coughs>

          You should get that seen to.

          I wonder how efficient the NHS are? What comes first: your appointment sometime next year, or your hypochondriac cough being added to your medical record on the database?

          1. HelpfulJohn Bronze badge

            Re: Dido Harding...

            "" <coughs>"

            You should get that seen to."

            Yes, but not on the N.H.S.

            Nor, for privacy's sake, anywhere in UKland. Especially post-Brexit.

      2. ecofeco Silver badge

        Re: Dido Harding...

        Oh hell. :(

    2. Anonymous Coward
      Anonymous Coward

      Re: Dido Harding...

      hurrah, we knew she would re-surface! And it wouldn't have been at a local food bank (unless for a media photo-shoot)

      1. macjules Silver badge

        Re: Dido Harding...

        'resurfaced', like bad broccoli making a late, unwanted reappearance.

        1. Anonymous Coward
          Anonymous Coward

          Re: Dido Harding...

          More like a post-Christmas dinner sprout...

      2. Michael H.F. Wilkinson Silver badge

        Re: Dido Harding...

        Scum floats, as we say here

    3. Anonymous Coward
      Anonymous Coward

      Re: Dido Harding...

      Dodo Harding ?

      I thought that bird was extinct.

      1. BebopWeBop Silver badge

        Re: Dido Harding...

        Regrettably no, but as some wag pointed out many years ago, the scum always rises to the top.

    4. N2 Silver badge

      Re: Dido Harding...

      These people are just like turds.

      No matter how utterly shyte they are at their job, they always come rolling back up the beach to another unsuitable posting.

      Six figure pension pot in hand.

    5. Anonymous Coward
      Anonymous Coward

      Re: Dido Harding...

      Christ I'm glad I don't work in the NHS (including a stint at "Improvement") any more. It was fucking soul destroying seeing some of the twerps in charge. Unfortunately that doesn't look like changing any time soon.

    6. TKW
      Flame

      Re: Dido Harding...

      I'm so angry! Why is this absolute idiot being paid by the government to have anything to do with data? F-absolute-FS.

      1. Anonymous Coward
        Anonymous Coward

        Re: Dido Harding...

        Because 'the government' wants to give all that juicy data away and they need someone who can do that and even take the flack for it afterwards when government pretends that what happened was totally not what they wanted to happen and absolutely not their fault in any way.

        It has come to pass that a proven track record in 'strategic incompetence' is a marketable skill on its own. Having a negotiable approach to moral standards rounds the package off well and makes it much more deployable!

        I know this because I have worked with two people where one got nailed and sacked for nepotism by sending millions in consulting contracts around Procurement and awarding them to friends and family, the other one was the controller who signed off on it all.

        According to LinkedIn, both were gainfully employed by rather large businesses after only 4 and 6 months of 'earnest contemplation and reflection'. It is not like the recruiters would have missed the 'issues', they were widely reported in a broad selection of media. The recruiters must have picked them because the clients wanted a controller that will sign anything and a manager who will send off highly paid work to someones dumb-ass children.

    7. Charlie Clark Silver badge

      New Icon Required: The Gravy Train

      NFT

    8. James Anderson Silver badge

      Re: Dido Harding...

      Its something that has been bugging me for a long time. We spend 10% of GDP on the NHS, but nobody has a clue how the people who run it get appointed or why.

      How do I wangle a seat on the board of an NHS trust? I suppose its something do do with who your school chums are?

      1. HelpfulJohn Bronze badge

        Re: Dido Harding...

        "How do I wangle a seat on the board of an NHS trust?"

        1: have money.

        2: Have *LOTS* of money.

        3: Be generous with "political campaign contributions". Contribute to *everyone's* campaigns.

        4: As an alternative to 1 & 2, *marry* lots of money and have hubby do 3.

  2. cantankerous swineherd Silver badge

    the nhs keeps information on at least some of it's patients religions. speaking totally hypothetically for a friend, would it be possible to get a list of adherents of a particular religion? if so, how much would that be?

    1. Anonymous Coward
      Anonymous Coward

      List of adherents, as in names, probably not.

      Numbers of adherents is freely available from census data.

      1. Anonymous Coward
        Anonymous Coward

        List of adherents, as in names, probably not.

        how about a post-code then? Well, ok, roughly then! My friends DO insist, you know...

        1. BebopWeBop Silver badge

          Re: List of adherents, as in names, probably not.

          You may well be able to get a good prediction based on analysis of the "anonymised data" <cough>

      2. Chris King Silver badge

        "Numbers of adherents is freely available from census data".

        That's only useful if you're Darth Vader and you're looking to hunt down the remaining Jedi.

        1. teebie

          And that is when data like 'There is one jedi who goes to the village GP, and he is the one with psoriasis' comes in handy.

          1. HelpfulJohn Bronze badge

            "One Jedi, [shoudn't that be Jedus?], goes to the village G.P., has psoriasis, fills his prescription at LLoyds' Pharmacy in a large Sainsbury's, has a Sainsbury's Clubcard for loyalty points, buys sliced ham weekly, uses a credit card with the number nnnnnnnnnnn, has two children, is divorced, drinks a pint of Fosters in the village pub on Saturday evenings, has been known to use Social Media to criticise Government policies ..."

            Data is *useful* in vast quantities when you can form linkies between sets.

    2. Anonymous Coward
      Holmes

      That's not too far from stats that have value in real life.

      "Ethnic group X is 25% more susceptible than group Y to medical condition Z".

      I expect that's the kind of question they're discussing. Unintended consequences will fall somewhere on a scale between there and your hypothetical.

      1. Anonymous Coward
        Anonymous Coward

        Then clearly we must warn members of ethnic group X about this increased health risk. Please provide their names and addresses so we can be sure we've warned each and every one.

    3. macjules Silver badge
      Black Helicopters

      This week I was advised to take out a 'Keyman' insurance package, since I now employ more than 5 staff, and promptly received a call from Royal London quoting me £200 per month for a £1m policy. What concerned me was the claim that they did not need my medical history from me, saying rather blatantly that they can get it direct from the NHS. They telephoned last night to go through a very detailed medical history that they had presumably got from NHS England, including an operation carried out some years ago via BUPA, which didn't even go via my GP.

      1. Anonymous Coward
        Anonymous Coward

        This week I was advised to take out a 'Keyman' insurance package, since I now employ more than 5 staff,

        Surely they should be the ones taking out the insurance? If you drop dead it won't be your problem any more...

      2. NHSKremlin

        Private records

        The only private healthcare records you can have are if you get treatment abroad. The NHS requires BUPA etc to Give your records to your GP. “I have no UK GP” then no referral to us.

        1. macjules Silver badge

          Re: Private records

          Thanks. Did not know that.

      3. fidodogbreath Silver badge

        Don't worry, though; I'm sure they take the privacy and security of your information very seriously.

      4. fajensen Silver badge
        Childcatcher

        Hm. Usually what they do it make the client re-create their total medical record from memory on the application and then deny coverage on the basis of differences between the actual record and what the client put on the form.

    4. IGotOut

      Why bother with the NHS data? Facebook allows you to get that info quite easily....just need to know how to look for it.

      1. DiViDeD Silver badge

        Get your NHS Data from Facebook?

        Why not just check down the back of your commuter train seat for discarded USD sticks? Government mandated data deletion policy, that is.

  3. Anonymous Coward
    Anonymous Coward

    Good News!

    Some people will get very rich selling (and exploiting) a rich set of data like this.

    Huzzzah!

    Trebles all round!

    I know where I'm putting my mark today!

    1. Warm Braw Silver badge

      Re: Good News!

      Snout, meet trough.

      Meanwhile, the principle problem faced by the NHS is not a lack of data to guide the development of advanced therapies, but kids lying on coats on A&E floors owing to a lack of beds. Unfortunately, noone stands to profit by fixing that.

      1. Doctor Syntax Silver badge

        Re: Good News!

        We need lots of data to work out if there are enough beds.

      2. Warm Braw Silver badge

        Re: Good News!

        Correction: principal problem. Although, maybe both...

      3. andy gibson

        Re: Good News!

        But isn't it true the child didn't actually need a bed and had flu and tonsillitis which could have been treated at home in his own bed?

        Plus, when my child is sick, I tend not to photograph them and send it to the Daily Mirror.

        1. JoshOvki

          Re: Good News!

          Got any evidence for that or just speculation? They don't normally put people on an IV unless it is needed, never mind when there is such a high infection risk of them being on the floor

        2. Gordon 10 Silver badge
          Devil

          Re: Good News!

          Remember the good old days when trolls only had their own ignorance to draw upon rather than a f*ckton of fake news from Twatbook?

          The full (true) story is fully documented and the Mirror didn’t break it.

          Take your f*ckwittery elsewhere - you’re part of the problem.

        3. Anonymous Coward
          Anonymous Coward

          Re: Good News!

          >>>Plus, when my child is sick, I tend not to photograph them and send it to the Daily Mirror.

          So you prefer TikTok, eh?

        4. JohnMurray

          Re: Good News!

          The child was suspected to have pneumonia.....and it was an oxygen mask, not an IV

        5. Anonymous Coward
          Anonymous Coward

          Re: Good News!

          Flu can be fatal - that's why we vaccinate some members of the population

          Swollen tonsils can restrict the airway, also from experience makes young children gag and vomit.

        6. Anonymous Coward
          Anonymous Coward

          Re: Good News!

          "But isn't it true the child didn't actually need a bed and had flu and tonsillitis which could have been treated at home in his own bed?"

          They were admitted with suspected pneumonia. The conditions photographed were confirmed as correct by both the Chief Medical Officer and Chief Executive of the Leeds General Infirmary (the hospital in question)

          "Plus, when my child is sick, I tend not to photograph them and send it to the Daily Mirror."

          Maybe they were in despair at the situation, in a "if we don't record this, no-one will believe us" kind of way? The NHS has serious issues with regard to capacity (3+ month wait to see a consultant or have a scan is normal, as is a ~4hr wait at A&E). In any way, the story was originally published by the Yorkshire Post *not* the Mirror.

          Maybe a bit more fact-checking, like that which journalists do, would be an idea?

    2. fidodogbreath Silver badge

      Re: Good News!

      Now, hush-hush files and presentation slides seen this week by The Register reveal discussions are already in progress over the future use of patients' personal records and related information, said to be valued at roughly £10bn a year.

      "And finally, we'd like to welcome NHS as our newest member of the Surveillance Capitalism Foundation..."

  4. cbars
    Facepalm

    The S

    Stands for service. As in, we - the data subjects - are to be served by it.....

    The only ones set to benefit from this are companies who will get to charge an alarming amount of money, probably twice, for a system that does nothing to improve care (can we please focus on these possible benefits a bit more?) and the individuals who are in charge of taxpayer money, getting a nice bonus and fucking off to the next shipwreck.

    Why not start with a subset of data (CEO's and politicians? Not that they use the NHS) and put in acceptance criteria such that if no tangible benefits magically materialise, we can tell 'big tech' to go sell their bridges elsewhere!

    1. phuzz Silver badge
      Trollface

      Re: The S

      "Why not start with a subset of data[...]CEO's and politicians?"

      Because the data is useless if it doesn't cover actual human beings.

      1. Anonymous Coward
        Anonymous Coward

        Re: The S

        NHaaS

  5. W.S.Gosset Silver badge

    IP

    Strikes me that the IP for each patient's data rests with each patient.

    The internal NHS text here treats it as the NHS's own work.

    Methinks a class-action lawyer could tear them a new arsehole*.

    .

    * (they always make room for more of them on their consultative boards)

    1. sbt Silver badge
      Trollface

      a class-action lawyer could tear them a new arsehole

      That's what the doctors are for; they have scapels and everything.

      1. W.S.Gosset Silver badge

        Re: a class-action lawyer could tear them a new arsehole

        ^scapels^breadknives

        1. Jimmy2Cows Silver badge
          Go

          Re: a class-action lawyer could tear them a new arsehole

          I have a few rusty circular saw blades I'd be happy to donate to this cause.

    2. cantankerous swineherd Silver badge

      Re: IP

      a caring sharing Tony Blair made everybody's medical records the legal property of the secretary of state for health.

      1. W.S.Gosset Silver badge
        WTF?

        Re: IP

        ?!?

        seriously??

        1. HelpfulJohn Bronze badge

          Re: IP

          Apart, I seem to remember, from the records of *his* family.

          There were jokes made about it on front pages at the time.

  6. Marketing Hack Silver badge
    Stop

    What protections are there for individuals?

    It doesn't sound as if this data is going to be sufficiently anonymized. It really sounds like this is going to be a combination marketing/clinical database for research and promotion of medical goods and services to British patients.

    1. Peter Gathercole Silver badge

      Re: What protections are there for individuals?

      Forget the anonymization, If there is as much information in the data set as the article suggests, it will be trivially easy to de-anonymize the data by using other data sources as a cross reference.

      This is what the politicians and NHS execs. don't understand.

      1. Rich 11 Silver badge

        Re: What protections are there for individuals?

        This is the absolute giveaway:

        Capturing the “full journey of care from cradle to grave,” the gigantic central database's “records can be continuously updated with event information, and their scope/coverage can be continuously enhanced with structured and unstructured data from across the systems and outside it (e.g. wearables, social, geo-spatial, etc).”

        Jesus fuck.

        1. Anonymous Coward
          Anonymous Coward

          Re: What protections are there for individuals?

          Did he? Was that in his medical record?

          1. Rich 11 Silver badge

            Re: What protections are there for individuals?

            You'd have to ask Dan Brown.

        2. Ken Hagan Gold badge

          Re: What protections are there for individuals?

          Exactly. Good luck anonymising *that* once the entire database gets spaffed across the internet.

          Oh, and good luck actually selling the database to any commercial partners once the entire database has been spaffed across the internet.

          And good luck avoiding such spaffing several times even before you've finished assembling the database from its multitude of source records.

      2. Warm Braw Silver badge

        Re: What protections are there for individuals?

        This is what the politicians and NHS execs. don't understand

        It's not that they don't understand, they don't care.

        It's blindingly obvious that no-one is going to pay significant amounts of money for access to the data in order to save the NHS money by coming up with new and cheaper forms of treatment. They're only going to pay for it if it helps maximise their revenue. The two things that would most significantly benefit health in the UK don't even involve medical expenditure (and indeed would significantly reduce it) - getting people out of cars and improving their diet. This has nothing to do with the health of the UK population, it's people looking for the same kind of sinecure that Nick Clegg scored.

      3. NHSKremlin

        Re: What protections are there for individuals?

        Oh the NHSD and DHSC understand all right: and while it is an offence under GDPR to stitch 2 or more data sources together to de-anonymise patient data, they don’t think the NHS will be sued because it is holy and sacrosanct. Left to progress unchecked this initiative is another step to rule by the NHS. Chinese social behaviour points will have nothing on the NHS, collecting your Fitbit data - which no doubt it will become compulsory to wear...

        1. Ordinary Donkey

          Re: What protections are there for individuals?

          I doubt they care if the NHS gets sued. They'll get to retire with their golden parachutes intact either way.

        2. uncle sjohie

          Re: What protections are there for individuals?

          It looks like you're leaving the EU, so that pesky GDPR won't be a factor for long. :-)

      4. JohnMurray

        Re: What protections are there for individuals?

        They do understand...pseudo-anonymised health data was handed-out a few years ago, and it was found to be simple to trace the actual patient from that, by referring to other data existing. They know. They don't care. Large amount of revolving doors in healthcare and politics.

      5. Random Handle

        Re: What protections are there for individuals?

        >This is what the politicians and NHS execs. don't understand.

        They don't care - this a lottery win for those politicians and execs a few years down the line. They can even kid themselves it's for the greater good.

  7. alain williams Silver badge

    My GP wants my email address

    This confirms my decision to not give it to them.

    1. Tigra 07 Silver badge
      Big Brother

      Re: My GP wants my email address

      The targeted advertising from this will be horrific!

      Imagine Amazon recommendations changing from "Recommended items based on your interests:" to "Recommended items based on your medical history:"

      1. Anonymous Coward
        Anonymous Coward

        Re: My GP wants my email address

        > Imagine Amazon recommendations changing from "Recommended items based on your interests:" to "Recommended items based on your medical history:"

        Recommended items based on the psychiatric history of your next door neighbour: bullet-proof jacket...

        1. Anonymous Coward
          Anonymous Coward

          Re: My GP wants my email address

          Virtually all patients with psychiatric problems are NOT dangerous to others, to themselves perhaps but generally not to others, thats something the media and society blow vastly out of proportion and adds to the stigma faced by those with mental health issues

          1. Tigra 07 Silver badge
            Coat

            Re: My GP wants my email address

            My sister is mental and she's dangerous to everyone. She voted for Corbyn!

            1. DavCrav Silver badge

              Re: My GP wants my email address

              "She voted for Corbyn!"

              Ah, so that's one of them. Now we just need to find the other Corbyn voter.

              1. Tigra 07 Silver badge
                Trollface

                Re: My GP wants my email address

                My money is on McDonnell. Has anyone told Diane Abbott they didn't win yet?

            2. HelpfulJohn Bronze badge

              Re: My GP wants my email address

              I didn't vote, so, in my home constituency, I *effectively* voted for the Corbie.

              Had I voted, Corbie's candidate would have won anyway and it was cold and rainy so why bother?

              1. Tigra 07 Silver badge
                Trollface

                Re: My GP wants my email address

                I see your point, but that wasn't very HelpfulJohn.

                Plus, by not voting you've now forfeited your right to complain about politics until the next vote.

  8. John Smith 19 Gold badge
    WTF?

    Once again. It is not *their* data to sell.

    So stop f**king doing so.

    What's the plan?

    Brexit means they don't have to comply with the GDPR directive so they can do WTF they like with people's data? Forget any ideas you might have about this being anonymous either.

    No doubt another item on any US trade agreement Bozo would "negotiate" on the UK's behalf.*

    To my British chums this polling day. If you vote for no one you roll over for everyone.

    *The sitting PM who doesn't have the balls to face a 30 tv interview. Weak. Very weak.

    1. SMITCH79

      Re: Once again. It is not *their* data to sell.

      Yep, your namesake would've been appalled.

      The greatest prime minister we never had . . . *

      * I added this because its how John Smith was regarded (in Scotland at any rate) and this post got a downvote within a minute of posting so . . . . edit!

      I've already voted anyway.

    2. Aristotles slow and dimwitted horse Silver badge

      Re: Once again. It is not *their* data to sell.

      Whilst I'm as appalled as everyone else with this sort of thing, I'm not entirely sure that what you have written here is correct...

      "Brexit means they don't have to comply with the GDPR directive so they can do WTF they like with people's data?"

      Happy to be corrected however by those better informed that I.

      1. Sulky

        Re: Once again. It is not *their* data to sell.

        Correct, in order to not to have to comply with GDPR we would have to repeal the 2018 Data Protection Act which contains the GDPR rules. Any future trade deal would almost certainly require us to keep following those rules.

        1. This post has been deleted by its author

        2. Anonymous Coward
          Anonymous Coward

          Re: Once again. It is not *their* data to sell.

          "Any future trade deal would almost certainly require us to keep following those rules."

          Yep but a trade deal with who?

          With the EU certainly but what about the US?

          "Would it not really be dictated by who we make a trade deal with first? Or which trade deal the government prioritises?"

          I don't think the current government would think twice about repealing GDPR protections if it suits their American masters. They've tested the water on repealing the human rights act before so they would consider that ticky tack shit.

          That really will be the forseeable outcome of today. If the tories get a majority we will become more aligned with America on trade. I know its a lot more complicated than that but I think its pretty clear the EU will get the cold sholder in favour of America if the current administration has its way.

          1. JohnMurray

            Re: Once again. It is not *their* data to sell.

            No GDPR compliance = no EU citizen data being transferred to the UK.

            Interesting about EU citizen data being held by the NHS or UK govt though !!

            https://www.itpro.co.uk/policy-legislation/31772/gdpr-and-brexit-how-will-one-affect-the-other

            1. Anonymous Coward
              Anonymous Coward

              Re: Once again. It is not *their* data to sell.

              The regulation does not once mention the word "citizen".

      2. John Smith 19 Gold badge
        Gimp

        "I'm not entirely sure that what you have written here is correct.."

        I hope I'm not and the sort of data fetishist weasels who want that access are as ignorant of the law as they are greedy and lacking in empathy for others.

        But these weasels are determined little carnivores.

        I sometimes think only poison will stop such sharp toothed little preditors.

        1. jospanner

          Re: "I'm not entirely sure that what you have written here is correct.."

          As in, we poison the data sets?

          1. John Smith 19 Gold badge
            Coat

            As in, we poison the data sets?

            That's an idea as well.

      3. bobdylan123

        Re: Once again. It is not *their* data to sell.

        I think as GDPR is an EU law affecting EU citizens - what the NHS does with British (non-EU post brexit) data is up to them.

        You'd think they'd at least try and spin this as a 'greater bringing together of data to get a cure for cancer / childhood illness' etc. as opposed to the fact they're likely to spot trends and forecast drug use / requirements better and therefore up prices. Additionally this can be used to bury other trends such as drug A is less effective. or Drug B works but is less profitable etc.

        1. BebopWeBop Silver badge

          Re: Once again. It is not *their* data to sell.

          When in doubt "think of the children" seems to be a favourite ploy. Patel is using that in her bid to demolish end to end encryption.

          1. Teiwaz Silver badge

            Re: Once again. It is not *their* data to sell.

            When in doubt "think of the children" seems to be a favourite ploy. Patel is using that in her bid to demolish end to end encryption.

            To sell to the public, yes.

            it's "think of the money" to sell to boardrooms.

        2. BoldMan

          Re: Once again. It is not *their* data to sell.

          GDPR is NOT an EU law, its a British law in the British law statute books. It will continue to operate even if we leave the EU until some weasel government repeals it in a few years time on order from their US masters.

          1. Anonymous Coward
            Anonymous Coward

            Re: Once again. It is not *their* data to sell.

            Following the GE, expect the US order to happen sooner rather than later. Fully expecting data (the "free flow") to loom large in forthcoming trade negotiations. At least one US tech trade association describes GDPR (and therefore by default, DPA2018) as data protectionism, or data nationalism. And I quote: "The Trump administration should negotiate trade agreements that prohibit and eliminate digital barriers"

            https://itif.org/publications/2017/05/01/cross-border-data-flows-where-are-barriers-and-what-do-they-cost

        3. Halfmad Silver badge

          Re: Once again. It is not *their* data to sell.

          OK we need to clear this up folks.

          EU directive = instructs member states to implement a law.

          UK regulation (e.g. GDPR) = it is now UK law.

          GDPR is a regulation, hence the name. GDPR is about UK Citizens as well as EU citizens. It applies within the UK and we have to stick with it irrespective of Brexit and until the law itself is changed.

    3. JohnMurray

      Re: Once again. It is not *their* data to sell.

      The GDPR is already part of the data protection laws UK.

      The GDPR does not apply to anonymised information.

      1. Richard Crossley
        Boffin

        Re: Once again. It is not *their* data to sell.

        Specifically GDPR is an EU directive. The EU requires directives to be implemented as laws in the member countries. The UK implemented this directive with Data Protection Act, 2018

        Immediately post Brexit this will still be on the UK Statute. If it is subsequently removed, the UK will not be allowed to and process data pertaining to EU Citizens.

    4. Cederic Silver badge

      Re: Once again. It is not *their* data to sell.

      The sitting PM that's faced over 180 media interviews, including one on one interviews with political correspondents on the BBC? Not to mention a one hour live phone-in with the public, on BBC radio and television, that a certain Mr Corbyn refused to to himself.

      Additionally, to answer your question, Brexit would mean that the NHS would not need to comply with GDPR. It does however have to comply with the Data Protection Act 2018, which is more stringent than GDPR.

      To your British chums on this polling day: Ignore this person, they are adding no value.

  9. Peter Prof Fox

    Worthless stake

    What value is a stake in a company when all you can do with that stake is sell it? And then the NHS doesn't have a stake. Even profits get creamed-off before distribution by offshore tax-fraud, huge pay packets and convenient commercial shenanigans like odd buy-outs. (Except through the heart.)

    (Fingers crossed the conners don't win today.)

    1. John Smith 19 Gold badge
      Coat

      "(Fingers crossed the conners don't win today.)"

      I'm told actually voting can be quite useful as well.

    2. Rich 11 Silver badge

      Re: Worthless stake

      What value is a stake in a company when all you can do with that stake is sell it?

      My thought on first reading about that option was that the NHS would have to be extremely wary not to be outmanoeuvred here. You can easily imagine such a company being bought out by a foreign concern (OK, we know it'll be an American one) and asset-stripped. The NHS would only be able to stop that if it had a controlling stake or a golden share, and if the company was incorporated in the UK and subject only to English or Scottish law. But even then if some short-sighted government (I'm naming no names, not even on election day) were to sign up to a trade deal which included the provision we saw in TTIP that no public body could hamper profit-seeking without paying recompense, regardless of the impact upon people, society or the environment, the NHS would effectively lose any influence it had over that company.

  10. deadlockvictim Silver badge

    Free Markets

    NHS People: you will *love* Free Markets!

    Free Markets will make sure that the entire health system runs as efficiently as possible.

    And you'll have the expertise of your Friends in the U.S. who have perfected the Free Market Health System to help you out.

    As well as your friendly pharmaceutical companies who are working hard to deliver the best medicines to you (wait until you English folk try out the latest craze in the States. They are called Opioids and they are the biggest thing since the British Invasion. You won't be able to put them down.)

    And you'll have the reassuring presence of Google to ensure that you are getting the best in algorithmically generated patient care.

    The Future is Free!

    1. J.G.Harston Silver badge

      Re: Free Markets

      The US has anything *but* a free market health service. It's the very pinnical of a not-free-market.

      1. Anonymous Coward
        Anonymous Coward

        Re: Free Markets

        "The US has anything *but* a free market health service. It's the very pinnical of a not-free-market."

        No it's free,

        if your rich you have the choice of N overpaid doctors and MD's of insurance companies to give money too.

        But if your poor your free to go die in a ditch,

        Reminds me how did the lying PM avoid that fate?

        must be getting dementia, just remembered he's a fucking CONselfservative

  11. Caver_Dave
    Unhappy

    What?

    "This record-organizing programme includes the creation of a “single, standardised, event-based, longitudinal patient record” repository for 65 million Brits. Basically, everything you can imagine collected, cleaned up, curated, and searchable, in one place."

    Isn't that what the last 'x' number of digital reforms were supposed to do?

    If the data is all still in separate data stores then it's no wonder they still (to use an apt colloquialism) "don't know their arse from their ear-hole"!

    1. JohnMurray

      Re: What?

      All-digital records only exist for those treated after around the year 2000....everyone born before then has a large paper folder following them from hospital-to-hospital (I am not joking). And that is just the hospital records, which are separate from primary care records (hospitals still send "letters" about your care back to your primary care provider)(how cute). As yet, there are few links between secondary and primary care records. And even less link between your paper records and your digital records!

      Once your records get into the USA, your data protection rights that you have here, will cease over there!!

  12. Anonymous Coward
    Anonymous Coward

    in one place

    until it gets hacked, or sold on by an amazonian on a minimum wage.

    1. Teiwaz Silver badge

      Re: in one place

      until it gets hacked, or sold on by an amazonian on a minimum wage.

      You think they'll keep the db in the fulfilment centre?

      Some upper management will decide to 'secure' it in an open to the weather AWS bucket, or sell it for some tarty yacht that's been eyeing him from the centrefold of sailors and poseurs monthly.

  13. Noonoot

    NHS bosses are tories

    'nuff said

    1. jospanner
      Thumb Up

      Re: NHS bosses are tories

      how dare you make this political issue political

      1. Teiwaz Silver badge

        Re: NHS bosses are tories

        how dare you make this political issue political

        Health is a religion, the NHS a state run religion (currently run by evil priests)

        It would hence be an ecumenical matter.

        Or better still, a matter for Conan to raid the High Temple, slaughter the priests and escape with the girl.

      2. Noonoot

        Re: NHS bosses are tories

        Make of my comment what you will, but the fact of the matter is that they are capitalising on the sick.

        1. NHSKremlin

          Re: NHS bosses are tories

          You are entitled to see it that way. I see it that they are evil socialists intent on controlling every aspect of life, medicalising issues, snooping into every individual’s privacy. They gain with lucrative jobs in companies which provide services to government and NHS once they leave HM service. They protect their power by invoking religious fervour for a corrupt perversion of Bevan’s humanitarian vision. Like the mediaeval church...

  14. tip pc Bronze badge

    I want access to my data

    It’s inevitable that this data will end up being mined by big pharma at some point, but before they do I want to ensure I have full access to all the data the NHS have on me at all times. They can then package up and send anonymised (won’t truly be anonymous, how many post up transgender cancer patients living in small village/town/area are there?) to big pharma.

    I can then pay to send my data for analysis to whom I want then and get a second opinion.

    Whatever they do it must be relevant to us citizens too.

    1. This post has been deleted by its author

    2. Halfmad Silver badge

      Re: I want access to my data

      So in order for them to give you access 24/7 they'll need it hosted on cloud somewhere. So before it goes to big pharma, you want Amazon, Google or Microsoft to have access to it?

      Bit of an odd request, but ok..

  15. John Smith 19 Gold badge
    Unhappy

    "Whatever they do it must be relevant to us citizens too."

    Hahahahahahahahahahahahahahahahahahaha

    Thank you for giving me the biggest LOL moment I've had in weeks.

    Sentiment. Admirable.

    Execution. Not a f**king chance.

  16. Phil Bennett

    "Anonymised" data again?

    Pseudoanonymised healthcare data has been shown time and time again not to work - medical histories are often easily used to identify (especially vulnerable) individuals.

    In addition, once this data is out there, and the more it's spread around the higher the chance of that, it isn't like you can put the genie back in the bottle. You can change a password, it's a bit harder to change your generic code.

  17. Andy Livingstone

    NHS ...... ENGLAND?????

    I don't give a tuppeny damn what NHS England do, they don't hold my data as I live in different country of the United Kingdom. You sure you are correct to be writing about NHS England ion the first place?

    1. x 7

      Re: NHS ...... ENGLAND?????

      Yes - NHS Scotland / Wales / Northern Ireland are devolved and locally controlled

      1. BebopWeBop Silver badge

        Re: NHS ...... ENGLAND?????

        There is a concern in Scotland that Johnson et al are determined to claw back much of Hollyrood's powers - and I assume the same concern will be shared by the Welsh Assembly.

        1. Anonymous Coward
          Anonymous Coward

          Re: NHS ...... ENGLAND?????

          Yeah, but ever wonder why your hospital car parks and prescriptions are free in Scotland?

          Here's a clue - we fund it all for you, because your politicians got Tony Blair to allow them to screw Westminster whenever they want. Your lot get to vote on stuff that only affects England like whether NHS England should be funding Scottish taxpayers this way when we can't fund our own hospitals, but we can't affect your lot in any way at all.

          Before you blame the Tories alone for the current state of NHS England, just remember Blair happily signed up to this and the Scottish Parliament happily continue to rob us blind while wailing we don't give you enough. If Boris wants to stop this outright theft of resources then why the hell should we NOT vote for him? It's just a shame we can't rip the whole of Scotland off the top of England and attach it directly to the Federated States of Europe, let you see how long they are prepared to subsidise you. Because I can guarantee Scotland won't get away with the same crap they do now.

          1. Anonymous Coward
            Anonymous Coward

            Re: NHS ...... ENGLAND?????

            While I agree with a couple of your less retarded comments, the phrase "your lot" is slightly alarming.

            I'd also point out the immense strategic value Scotland has in terms of securing the northern seas around the UK. Without Scotland's claim over those all of the UK is a lot more more vulnerable and poorer. Oddly enough Boris understands that, weird that you don't.

          2. Intractable Potsherd Silver badge

            Re: NHS ...... ENGLAND?????

            @anti-Scottish AC: I'm currently visiting friends in London. Several of them are seriously considering moving to Scotland now as a result of there being so many "thick racists" in England (and when I say "seriously", it is nitty-gritty about where to move and how the process works etc), and others say that if Scotland got independence they'd move the to stay in the EU (I know, there's no guarantee of that happening, but the belief is that the Scots won't jump before having agreements in place - so, not the "Brexit model"). Whilst some of the talk is still just that, immigration from the EU and rUK could significantly increase Scotland tax base - or we could reach 10 million people, we'd be more than self-sufficient, especially without the huge amount of e.g. military spending (Scotland would almost certainly go for defensive, not offensive, capacity.)

            In short, you want us to go, we want to go - why are the Tories refusing another referendum, especially since it would dramatically increase their proportion of power (hah - you hadn't thought of that, had you? Scottish independence means more Tory rule in England!)

        2. Teiwaz Silver badge

          Re: NHS ...... ENGLAND?????

          and I assume the same concern will be shared by the Welsh Assembly.

          As to the N.I. Assembly, I think even the N.I. population have given up on them - doesn't seem to stop them blithely voting in the same vegetables ever since the Good Friday Agreement.

        3. x 7

          Re: NHS ...... ENGLAND?????

          Interestingly, NHS Wales recently did a deal to migrate all its GP Surgeries to the Microtest clinical software system exactly because it wasn't convinced that Emis and the other suppliers could comply with either GDPR or its own needs for data security.

          The data is held locally, not in the cloud. The fact that the local data servers run an old unsupported version of SCO Unix seems to be ignored

          ==edit==

          It uses SCO Openserver 6

          1. Halfmad Silver badge

            Re: NHS ...... ENGLAND?????

            Hasn't that deal more or less collapsed because Microtest couldn't fulfil it's contractual agreements?

    2. Just Enough
      Facepalm

      Re: NHS ...... ENGLAND?????

      I wish The Register would stop writing articles about NHS England that presume that what it's doing applies to all of the UK.

      NHS England does not have the data of 65 million Brits to sell. I appreciate the very real concerns highlighted, but if you are going to head your story with something that is so factually incorrect, displaying a fundamental misunderstanding of what NHS England is, don't you think it casts a shadow on the accuracy of the rest of the story?

      1. diodesign (Written by Reg staff) Silver badge

        NHS England does not have the data of 65 million Brits

        Sure, but if you read the article, NHS England talks of, for want of a better word, leveraging 55 to 65 million medical records. All of it.

        Whether the devolved NHSes want to fight off these plans or go along with them, or have no choice, we'll see.

        C.

        1. Halfmad Silver badge

          Re: NHS England does not have the data of 65 million Brits

          There's no fighting off required, by law NHS England and the UK nor Scottish, Welsh etc parliaments can compel NHS Scotland, NHS Wales nor NHS NI to sell it.

          Oddly enough much of these protections are in place because of the UK parliament. This is another case of NHS England taking it upon themselves, nobody is forcing them to do it.

  18. Anonymous Coward
    Anonymous Coward

    NHS England couldn't run a bath

    I regularly deal with NHS England.

    It is an organisation full of 6,600 overpaid, thick, pompous numpties who are always 'working from home'.

    Remember Connecting for Health, NPfIT, Lorenzo, etc.

    Those documents look sub GSCE business studies.

    Expect the McK and the other parasitic management consultancies and overseas dataslurpers to make a fortune.

    Expect the NHS to LOSE money on this. Lots of money.

    1. JohnMurray

      Re: NHS England couldn't run a bath

      I still suffer from lorenzo disease. It is spread by your medical provider having to use a system that is useful only for arranging childrens birthday parties. Once upon a time, the hospital I use was the height of efficient organisation, then came lorenzo. Heard nothing from them since.

  19. Pen-y-gors Silver badge

    Thankfully..

    I live in Wales, and health is a devolved matter. OK, so it's develved to a UK Labour govt, so our waiting times are even worse than England, and there are a raft of scandals and problems. Friend was recently rushed into A&E, no blankets or pillows, but plenty if sheets.

    When it works the NHS is wonderful, but it needs resources, which it won't get if the tories sell it off piecemeal.

    1. phuzz Silver badge
      Headmaster

      Re: Thankfully..

      "so it's develved to a UK Labour govt,"[sic]

      I'm not sure if you've noticed, but Labour haven't been in power nationally since 2010. Unless you mean the Welsh assembly, which as the name suggests, only covers Wales and not the whole UK.

      1. jospanner

        Re: Thankfully..

        no everything is Labour's fault, despite not being in power for almost a decade, god forbid we make the tories responsible for their premiership

        1. Anonymous Coward
          Anonymous Coward

          Re: Thankfully..

          jospanner, Labour always blame the Tories for everything so why not?

          It will be interesting to see what the next Labour government does when Gordon Brown sold off practically all our gold reserves and foreign investors start calling in the debts he and Blair built up.

          If they are hoping for a handout from the EU then they are going to be sorely disappointed - not only will we be expected to make reparations for putting the EU to the expense of Brexit but they would offer us the same "favourable" terms they offered Greece and Italy. Plus there's the "divorce bill" which we will end up paying even though we don't leave.

          1. cynic56

            Re: Thankfully..

            Is it wrong to call this AC a tw@t. I'd laugh if it wasn't enough to make you cry. The stupidity of people and their ability to delude themselves into believing everything they hear in their own self imposed Echo Chamber is staggering.

          2. JohnMurray

            Re: Thankfully..

            Unless you had not noticed....the £ has not been backed by gold for many decades....it is a fiat currency.....and Ted Heath sold more gold, for a lower price, than Gordon Brown did. Money does grow on trees. And banks make more money than the govt does. "the majority of money in the modern economy is created by commercial banks making loans" https://www.bankofengland.co.uk/quarterly-bulletin/2014/q1/money-creation-in-the-modern-economy

          3. John H Woods

            Re: Thankfully..

            Anyone who mentions "The Gold" can usually be safely ignored

          4. phuzz Silver badge

            Re: Thankfully..

            "Labour always blame the Tories for everything so why not?"

            Only one of those parties has been in power for the last nine years.

            1. Anonymous Coward
              Anonymous Coward

              Re: Thankfully..

              Unfortunately the rot in the NHS goes back considerably further than the last nine years, across multiple governments of varying hues - and they're all to blame as not a single one of them has made a serious attempt to take ownership of the problem.

  20. Anonymous Coward
    Anonymous Coward

    Election day reporting restrictions?

    I thought the law was clear that on election day any political or campaign issues (or anything that could be reasonably considered to be related to such issues) are not allowed to be reported? The idea is that nothing should be able to influence people's decision on the actual day of voting.

    I'm sure El Reg have a crack team of fellow vultures (aka lawyers) on standby, but even so this seems to be skating a bit close to the wind publishing this article today of all days.

    1. Anonymous Coward
      Megaphone

      Re: Election day reporting restrictions?

      I have a blog. Noone (well, almost) reads it.

      If I were to blog something political today - for example, I could draw comparison between my local MP[1] quietly abusing his power to protect fraudsters against whom the SFO has a case and the Trump impeachment - where would I stand? I don't think I'd be at risk.

      The Reg presumably falls somewhere between my blog and the BBC front page in terms of political/electoral sensitivity.

      But anyway, aren't the restrictions more fine-grained than that. Do the restrictions cover any political story (in which case, how the **** do you draw a line?), or just information specific to the election? Things like real-time exit poll data would indeed be sensitive!

      [1] Whoops, that's information that helps you identify me among Reg Commentards. Not so many of us in this constituency.

      1. Anonymous Coward
        Anonymous Coward

        Re: Election day reporting restrictions?

        Clearly we need a Vulture Party, where all commentards are automatically members. Policies could include free beer for all, and our party leader would have to be the Moderatrix!

        Seriously I don't know if social media such as blogs would be included in the restrictions or whether it's only traditional print/broadcast media. If the latter then it's quite a gap in the regulations.

    2. The Mole

      Re: Election day reporting restrictions?

      I had the same thought and am surprised they didn't hold it until tomorrow.

      Technically NHS England is a "Non-department public body" which according to wikipedia "are not an integral part of any government department and carry out their work at arm's length from ministers" so I guess there is an argument they aren't discussing political decisions - though ultimately ministers are still responsible.

      1. JohnMurray

        Re: Election day reporting restrictions?

        In the real, post HSC act 2012 world, the NHS does not exist. Each hospital is a separate business.

      2. Noonoot

        Re: Election day reporting restrictions?

        Reg Journos should have published this days ago and left at the top of the website as a bloody reminder!

      3. NHSKremlin

        Re: Election day reporting restrictions?

        NHSD, NHSI, NHSE etc (collectively NHS D I E ) are covered by purdah rules same as DHSC.

    3. Anonymous Coward
      Anonymous Coward

      Re: Election day reporting restrictions?

      That applies to "broadcasters".

    4. diodesign (Written by Reg staff) Silver badge

      Re: Election day reporting restrictions?

      The restrictions apply to broadcasters and enforced by Ofcom - print and online is fine. You're not allowed to speculate on voting outcomes, though, which we haven't.

      Go into a supermarket, pick up a newspaper, and flick through it to see what print and online is free to do.

      C.

      1. Anonymous Coward
        Anonymous Coward

        Re: Election day reporting restrictions?

        I always thought this site to be generally apolitical, this article and the general move to leftpondian thoughts...

        As they say on Dragons Den - 'I'm out'

        1. Intractable Potsherd Silver badge

          Re: Election day reporting restrictions?

          Don't let the door hit you on the way...

  21. J.G.Harston Silver badge

    The NHS doesn't need a centralised patient database, the existing distributed database system works perfectly well.

    1. Anonymous Coward
      FAIL

      works perfectly well

      Who are you kidding?

    2. Anonymous Coward
      Anonymous Coward

      No it doesn't

      It really, really doesn't. The current plethora of different systems is a chaotic mess.

      Any one patient may have:

      A GP record.

      A hospital record.

      A different hospital record.

      A specialist clinic record. (i.e. Sexual Health, which is legally required to be separate).

      A community Primary Care clinic record.

      (Some of which may well be duplicated).

      None of these systems interact with each other, some may still be on paper. (Yes, really!)

      A centralised record would vastly improve patient care and safety.

      However, what will actually happen is that a significant chunk of the health budget will be handed over to one the big city consultancies, who will piss it up the wall and deliver nothing. As usual.

      (Posted anonymously because I currently work for the NHS and wish to continue doing so).

      1. Anonymous Coward
        Anonymous Coward

        Re: No it doesn't

        I used to work as a programmer and consultant on Hospital Management systems and couldn't agree more.

        Right now there is very little chance of aggregating this data at all let alone into the format they are discusing.

        There is software out there that could do it but you will never get all surgeries, clincs, hospitals, consultancies, etc.... to change over to the same or compatible platforms as evidenced by all the failed previous attempts, even a local hospital has difficulty sharing records with a surgery down the road. Well I suppose you could but it would require legislation and ALLOT of money.

        1. cantankerous swineherd Silver badge

          Re: No it doesn't

          and this is a good thing.

        2. Anonymous Coward
          Anonymous Coward

          Re: No it doesn't

          It's been done. We currently handle data from TPP SystmOne, Vision, Cerner, AdAstra, and others.

          https://www.discoverydataservice.org/Content/Home.htm

          At the moment all the incoming data from patricipating CCGs is tranformed into FHIR DSTU2 format

          https://www.hl7.org/fhir/DSTU2/resourcelist.html

      2. cantankerous swineherd Silver badge

        Re: No it doesn't

        these are only problems if you're a manager. the rest of us don't give a twopenny damn.

        1. Ken Hagan Gold badge

          Re: No it doesn't

          I think it might also be a problem if you're a patient and the person treating you does not have access to all the relevant information. (They can't rely on you to tell them because even if you are conscious you don't know what's relevant.) So what they do instead is assume that you are average.

  22. old_IT_guy

    straw poll

    Can we trust any government or quango to safeguard our data, prevent its abuse in hands of private companies and not get utterly ripped off?

    For the record my vote is No, we can't.

    1. Anonymous Coward
      Anonymous Coward

      Re: straw poll

      There are some amazing managers the press love to hate, those waste of money "middle managers" who oddly enough are the ones sticking up for patient data rights and confidentiality day in and day out within the NHS. The only reason your data hasn't already been sold is because of them.

      That middle tier includes the mandatory data protection officers for most trusts who take their duty very seriously, their own, their family and friends data is all in there too remember, they have a personal interest in keeping it private, keeping it safe.

      That's in part why NOT having a centralised database is more secure, by policy and ethically it's unlikely all NHS England data would ever be released at any point without that central database as these managers would prevent it.

  23. x 7

    Interesting that there was no representation from the clinical systems companies on whose cloud servers much of the data sits.

    Trying to do this without input from Emis/Vision/SystmOne (for starters) is a bit stupid

    1. J.G.Harston Silver badge

      Exactly. This looks like an arch-Socialist plan to put them all out of business by having The State do everything.

    2. NHSKremlin

      NHSD hates EMIS/TTP SystmOne/vision because they were created by GP doctors and they work well for doctors but thye are based on systems that are difficult to extract and steal our patient data from. NHSD has been runn8ng a project to encourage new providers into the GP market to compete and be chosen over EMIS etc so ending their use by GPs (who are independent contractors not NHS employees). However, NHSE is doing such a good job of driving GPs into retirement or emigration that there won’t so many of them left and those that are will be salaried employees of companies. The GP service was the part of the NHS that could have been described as the envy of the world and successive governments since 1997 have worked hard to destroy it.

      1. Anonymous Coward
        Anonymous Coward

        Dude, getting info out of Emis is a doddle. They are moving to cloud to consolidate it into one place with no local clients/databases. What nonsense are you banging on about? Emis are literally a private company hosting entire trust patient data on cloud..

        1. Anonymous Coward
          Anonymous Coward

          https://learning-health.co.uk/

          Set up by the Endeavour Health Charitable Trust funded by David Stables (one of the 2 Emis founders.)

  24. Cuddles Silver badge

    On the plus side

    Given what a shambles NHS IT projects inevitably are, there's very little chance this database will ever actually work.

    1. Anonymous Coward
      Coat

      Re: On the plus side

      Does it have to work just to be able to leak?

  25. Zippy´s Sausage Factory

    You can opt out. My GP practice has a form on their website exactly for that. I think it's called the "common data register". I've opted out already, maybe a flood of emails and other opt outs to GP practices will put paid to the whole idea? Anyone up for organising a national campaign? (I'd do it myself but my medical record stops when I left the UK and it's a bit difficult to organise a national campaign from over here)

    1. JohnMurray

      You can opt-out of data being used for research purposes, you cannot opt-out of your data being used by health professionals. You cannot opt-out of your anonymised data being used by .. everyone

      https://www.nhs.uk/your-nhs-data-matters/

      https://digital.nhs.uk/services/national-data-opt-out/operational-policy-guidance-document/what-are-national-data-opt-outs

      1. NHSKremlin

        Spot on! And you can only opt out of the limited areas allowed by opting in to registration with a GP practice. It is the perfect Catch 22. The b*****ds have it sown up and the Data Commissioner connived in its establishment.

  26. smudge Silver badge
    Headmaster

    65 million Brits' medical data?

    NHS England bosses meet tech, pharma giants to discuss price list of 65 million Brits' medical data

    Nope. There are four separate NHSs in the UK, and the population of England is about 56 million.

    England /= UK, as the election today will no doubt demonstrate.

    1. x 7

      Re: 65 million Brits' medical data?

      the difference between 56 million and 65 million is the number of patients who have died but haven't been expunged from GP records. In some areas it can be approaching 20% of a GP's list

    2. Ken Hagan Gold badge

      Re: 65 million Brits' medical data?

      You seem to be assuming that no-one in the UK moves from one of the four regions to another at any point in their life. It sounds to me like if you have passed through England at any point in your life then NHSE is hoping to sell your medical records.

  27. SVV Silver badge

    Relax folks, it'll all be fine.......

    until one day you're walking along the street, and the van with dark windows pulls up alongside you, having tracked you by your phone and social media apps, and they tell you that big Mr Z needs a new kidney and you agreed to provide it when you signed up to the Ts and Cs to join Friendface.......

  28. adam payne Silver badge

    NHS Improvement chairwoman Baroness Dido Harding

    It's not like Dido can't be trusted or anything.

    An investment of up to £3bn will be required at the data-curation stage, the OLS document added, though an initial investment of hundreds of millions if pounds would be “powerful and signal that the UK is committed to its vision of becoming the best place in the world for research and life sciences.”

    There will be a more powerful signal when the project is years late and billions in the red.

  29. BGatez Bronze badge

    gird your grids you poor bastards

    US here with healthcare envy. As you know your political leaders will f*** you at will for $. Good luck.

  30. Anonymous Coward
    Anonymous Coward

    Reminder

    You have until 10pm to Vote against this shit.

    1. cantankerous swineherd Silver badge

      Re: Reminder

      still just under 4 hours...

  31. notanonymous
    Meh

    science & health benefits

    This data is likely to drive scientific advances which can lead to improvements in our health. The options are:

    - don't make it available - no such benefits possible (but your data will be a bit safer)

    - only make it available to academia - perhaps limits benefits as fewer people investigating? What if academics find something which can be spun out into a sellable product to help our health thus becoming biotech/pharma?

    - make it available to researchers in academia and industry - arguably maximises likehood of finding those benefits, but should they get that for free/"cost" or provide a kick back of some sorts?

    Worth discussing no? Still given peoples' immediate fears expressed in most comments here perhaps it''s not surprising the meeting was "hush-hush".

    1. Ken Hagan Gold badge

      Re: science & health benefits

      I think most people here reckon there is only one option that is likely in practice:

      - spend boatloads of taxpayers cash assembling the database and then accidentally spaff the whole lot on the internet for free, and then spend even more cash paying for the benefits at the market rate.

      So yes, *your* three options are worth discussing, but probably not with the stratospherically incompetent idiots who are currently running the show and until those twats are out of the picture the only safe thing to do with the nation's medical records is to sit tight.

  32. swampdog
    Unhappy

    What about bogus data?

    My record has an entry with a date and a two word question. Simply..

    dd/mm/yy Some Place?

    No information on who put it there or why. All it is, is an electronic photocopy. It could have come from anywhere and belong to anyone. Can't have it removed though.

    Couple that with the fact there's two large sections (years) missing. Well, just don't be a victim of a traffic collision.

    I'm sure there will be plenty of protection built in to prevent this happening to others.

  33. osakajin
  34. ecofeco Silver badge

    Facsim?

    What fascism?

    You have problem with Corporate Communist Capitalism©®™, comrade?

  35. VinceLortho
    Facepalm

    The Enthusiasm is Troubling

    Just as Boris's so adamantly orated Brexit campaign diatribe on the huge amounts Britain was losing to "Europa scum" was exposed as an evil lie for his own amusement, or worse, it seems likely the British public is being setup. I predict two results: 1. NHS will be paying for access to it's own data and lose all rights and controls of it. 2. The Russian GRU will have a detailed medical record of every decision maker, influencer, and person of any significant amount of political, military, or economic power within hours of the data being released into American hands.

  36. JohnMurray

    NHS Scotland launches GP information sharing system

    NHS National Services Scotland has launched its Spire system, sharing anonymised patient data for research purposes

    https://www.computerweekly.com/news/450414606/NHS-Scotland-launches-GP-information-sharing-system

  37. Anonymous Coward
    Anonymous Coward

    Shared IP?

    It's MY data.

    Letting you use it DOES NOT count as selling it to you.

  38. steviebuk Silver badge

    Where's my money

    If you're selling my data, I want a cut of the profits the private companies will make from it.

    Although all void anyway, now Boris is free to selling the NHS off bit by bit to the great Orange Knob over the pond.

  39. Colin Bain
    FAIL

    Data+ computer systems+ government = Perfect Storm

    Problem 1 - Very very few health professionals have good records

    Problem 2 - most people don't care about data, they just stuff it in what they think is an appropriate place without thought for retrieval. Hence my wife was told by a receptionist that btw her prostate results were ok.

    Problem 3 - not an IT project on earth with government involvement works.

    Problem 4 - Most doctors just care about their patients rather than the fiddly job of records, or indeed any of what we used to call paperwork and delegate it without proper thought to underqualified, untrained personnel. That's in practice and in hospitals

    Problem 5 - There is no-one going to properly negotiate with the jackals of capitalism.

    I could go on.

    The one thought that lets me sleep is that the level of incompetency will overcome the greed. However it is a fitful sleep because the innocents will pay both in finance and fitness

  40. Anonymous Coward
    Anonymous Coward

    A few years back I worked on this system. Could have told you then that we were merging together all the patent information into nice juicy research information in order to be sold on to the highest bidder.

    The NHS took great pride in telling everyone they were bringing in-house an IT system that had been ran by an external service provider. The actual truth was they brought in an Indian company and then realised that the foreign onshore staff would not be able to gain any access to the real data due to the clearances required. The project was "fun" like that, lots of expensive miscommunication and misunderstandings.

    Technical note, its not really a database but rather a large data warehouse. Oddly I often heard the phrase "Pandemic" being using in telephone meetings, maybe they were discussing the IT project, but I suspect not.

    1. Anonymous Coward
      Anonymous Coward

      “records can be continuously updated with event information, and their scope/coverage can be continuously enhanced with structured and unstructured data from across the systems and outside it (e.g. wearables, social, geo-spatial, etc).”

      Really, as from what I saw it took months to do a software release and even then they often failed. Lot of managers "doing" agile but actually just low quality software and talking bollicks (see above paragraph).

  41. Anonymous Coward
    Anonymous Coward

    A few years ago the NHS asked us to opt-in to make our medical records accessible digitally, so they were available instantly anywhere you were treated within the UK. This respected our ownership of our medical data. At what point did the NHS seek our permission to sell our private medical records for profit? Was it sneakily written into the small print? Can we choose to revoke those rights now?

  42. fredj

    I wouldn't trust an NHS data set to prove anything except a chaos theory.

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 © 1998–2020