back to article UK health secretary Matt Hancock follows delay to GP data grab with campaign called 'Data saves lives'

Following UK government's U-turn on the deadline for grabbing GP patient data, under-fire Health Secretary Matt Hancock is launching a policy paper to convince the public of the benefits of sharing their medical data. Under the headline "Data saves lives", the Department for Health and Social Care is publicising a raft of …

  1. Anonymous Coward
    Anonymous Coward

    "Data makes money for our Chums"

    would be a more realistic title.

    1. Warm Braw Silver badge

      Re: "Data makes money for our Chums"

      Not to mention the fact that we already have the data relating to many of the most common preventable causes of illness and a lot of those can be addressed through changes to behaviour rather than new forms of treatment.

      And we already have a problem that the most urgent areas of health research are being ignored: there's little investment going into vital areas like new antibiotics because you get a greater financial return from expensive niche treatments.

      Sharing health data isn't going to fix either of those more pressing problems - and will likely simply shift the focus further away from them.

      1. RegGuy1 Silver badge

        Re: "Data makes money for our Chums"

        there's little investment going into vital areas like new antibiotics

        This is a known problem and creative ways have been looked at to try to encourage research in this area. People moan about how much money big pharma make, but it has been extraordinary. Many millions of people now regularly live and extra 15-20 years longer -- that's a massive increase. And that is an amazing testament to the success of big pharma. Money encourages R&D and we all benefit.

        But governments need to step up to the plate and offer the cash via various projects. I know this has been mooted, but it is often us, the ignorant public, that think public spending is bad, and only the markets can make things better. And that is often difficult to explain to those that, having now retired, don't want to give any more of their money to their government.

        You have to convince this group we must spend more. And that's very difficult when they read the Daily Mail.

        1. 2+2=5 Silver badge

          Re: "Data makes money for our Chums"

          > And that is an amazing testament to the success of big pharma

          Partly.

          Labour saving machinery - at home and in the factory - has reduced the drudge of daily life and that has had at least as big an impact on life expectancy.

        2. Flywheel Silver badge
          Stop

          Re: "Data makes money for our Chums"

          regularly live an(d) extra 15-20 years longer

          True, but how many of those people are living, albeit with a variety of increasingly severe illnesses, often the result of lifestyle choices decades ago, and propped up by increasingly powerful meds? At this stage I'm not sure if I want to achieve my 4-score years+10 if I'm going to be a pharmacy dumpbin.

      2. Nick Ryan Silver badge

        Re: "Data makes money for our Chums"

        There is considerably more money to be made in alleviating symptoms compared to curing the causes.

        One is a repeat business, the other is a one-off (and is harder and requires more investment)

    2. ICL1900-G3 Bronze badge

      Re: "Data makes money for our Chums"

      I think the downvotes should be named and shamed.

  2. David M

    Opt-In

    If the data sharing is so great, make it opt-in. Problem solved.

    1. Anonymous Coward
      Anonymous Coward

      Re: Opt-In

      don't be silly, they're not STUPID. I mean, those that make opt-in v. opt-out decision. Those on the receiving end, on the other hand...

    2. Anonymous Coward
      Anonymous Coward

      Past tense

      According to Matt Hancock data already did all of these thing. *Past* tense.

      Which makes you wonder if this is like "mastering the internet", post-hoc legalization of something they already did.

      Just a reminder, the PM caught Covid, they couldn't even keep their leader free from a potentially deadly disease, so all of those claims are bullshit. They failed massively. Data didn't do any of that, but the fact they're claiming it did in PAST TENSE indicates, that from their perspective it was already did.

    3. wolfetone Silver badge

      Re: Opt-In

      To be fair, organ donation was opt-in and no one opted in.

      1. TRT Silver badge

        Re: Opt-In

        Well... no-one with half a brain. Which by an odd coincidence...

      2. Pseudononymous Coward
        Happy

        Re: Opt-In

        To be fair, Covid-19 vaccinations are opt-in and almost everyone has opted in.

        Personally, I opted in for organ donation until the Government changed the default, and then I opted out. Why? If I donate my organs it's a gift, if you take them it's theft.

    4. TRT Silver badge

      Re: Opt-In

      Like organ donation

      https://youtu.be/Sp-pU8TFsg0

  3. Mishak

    All they need to do...

    Is only allow the data to be accessed by trusted organisations (a named list) and state that it will not be sold / accessible to anyone else without an informed opt-in*.

    Unfortunately, that's not going to happen...

    * I would be happy to let my data be used for a valid, scoped research program. I will not allow it to be used if I am not given a choice.

    1. Julz Silver badge

      Re: All they need to do...

      "I will not allow it to be used if I am not given a choice"

      If your not given a choice, how do you stop it being used?

      1. Anonymous Coward
        Anonymous Coward

        how do you stop it being used?

        By opting out?

        1. RegGuy1 Silver badge

          Re: how do you stop it being used?

          Yep. I've done that, thanks to the last time el Reg ran this story.

          Fucking NHS. You know it's for old people only. El Reg took me to the opt out page. I had to download a file, print it, sign it and send it off to my GP. FFS, what's wrong with doing it all online?

          I've sent it off (but not knowing my NHS number). I don't hold out too much hope they will know what to do with it, and as I don't have any evidence I have sent it they could just ignore it and I'll be none the wiser.

          My GP at least still seems to live in the 1950s. Forget the phone, use the Internet.

          1. Esme

            Re: how do you stop it being used?

            Uh, this old person found that you can opt-out online, no need for printing anything out. And my GP confirmed that I'm opted out.

          2. Cederic Silver badge

            Re: how do you stop it being used?

            This is the online form:

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

            Although you do still need to know your NHS number.

            1. teebie

              Re: how do you stop it being used?

              Does that do both the GP opt-out and the non-GP opt out, or just one of them? Or is the the old opt-out process, which won't apply to the process being discussed?

              It's almost as if things are deliberately being made confusing .

    2. Graham Cobb Silver badge

      Re: All they need to do...

      Yep. We are all likely to be happy to supply data to reputable researchers. But I am going to repeat what I said in an earlier discussion...

      Because of that ... they won't allow us the option of supporting legitimate, ethical researchers without also allowing their unethical, corrupt mates (the ones who employ ex-Whitehall players as "consultants" or "lobbyists") to rape the data to make money from it and from us ...

      That is why I am opting out.

    3. Charlie Clark Silver badge

      Re: All they need to do...

      It's not the organisations, which may for very good reasons need to change, per se that matter, but the purposes for which the data will be used, the conditions under which it will be provided, the form in which it will be shared and the oversight that will be in place.

      There really isn't much need for anything other than NHS England, as opposed to agency dreamt up by Hancock which has NHS in its name but is not part of the NHS, to have access to complete data sets. The rest can probably be provided by cohorts.

    4. Anonymous Coward
      Anonymous Coward

      Re: All they need to do...

      That wouldn't be sufficient. Having worked in the field for years that trusted third party would find an excuse to do more with it, change it or use reports etc pulled from the original data to then be sold.

    5. Peter Gathercole Silver badge

      Re: All they need to do...

      And the scope can be extended by secondary (i.e. not debated in Parliament) legislation. I don't think so. This is the same thing that scuppered the UK ID card system.

      Let's hope the BBC and other news organizations keep flagging the concerns so the public have a chance to understand, not that I think that most of them would bother to take any note.

  4. Mishak

    "yet to confirm the new opt out date"

    Does that mean the opt-out I've just filled in will not be honoured?

    1. Joe W Silver badge
      Trollface

      Re: "yet to confirm the new opt out date"

      No.

      What kind of idealistic hippie would do that?

    2. Anonymous Coward
      Anonymous Coward

      Re: Does that mean the opt-out I've just filled in will not be honoured?

      no, quite the contrary, your opt-out will be reset to default! Unless you un-opt-out, at which point, it will be reset to default.

      ...

      and do you venture a guess as to what default position it is?

    3. Anonymous Coward
      Anonymous Coward

      Re: "yet to confirm the new opt out date"

      I was just thinking that as this was the second time I have had to opt out so will this now be a third? What are they trying to do? Get us everyone so fed with opting out we don't bother? or is this just a break so they can get their mates in the media to change public opinion? get some doctor on the news to spout bullshit about how we need this, maybe say without the funds we'll get from this the NHS is doomed. They could have some more of those friendly rigged questions we so often see on question time.

      1. Richard 12 Silver badge

        Re: "yet to confirm the new opt out date"

        Yes

  5. big col

    Fix the existing problems before making a profit

    I am currently being treated for complex health issues in greater Manchester. Attending 3 different hospital's.

    Because the computer systems are not joined up I often have to have the same blood and other tests done at each location. Data does save lives and improve overall health outcomes, yet the government makes a data grab and profit from selling our personal data, rather than addressing and fixing the patient records system.

    1. Julz Silver badge

      Re: Fix the existing problems before making a profit

      That was part of the £14 billion NHS Spine project from the early noughties. However, due to the various parts of our (English, but same was true in Wales and Scotland) not-national health care system bickering over data formats and control, nothing came of it. To fix this problem you either need the wisdom of Solomon or a large stick to bash the various disparate parts of the NHS into submission. I guess you could actually reform the NHS so that it really was national, but the same entrenched positions, not to mention public sentiment against reorganisations, would scupper that too.

      1. Yet Another Anonymous coward Silver badge

        Re: Fix the existing problems before making a profit

        if only there was some way to ensure that a Health Service could cooperate across an entire Nation? Perhaps some sort of central authority, a National health service if you like.

        Of course if you wanted to be able to quietly sell it off eventually it would make sense to split it into different competing regions / hospitals / trusts

        1. Doctor Syntax Silver badge

          Re: Fix the existing problems before making a profit

          Yes but which nation. As Wales & Scotland are both to be treated as separate nations we have separate Welsh & Scottish (& N Irish) National Health Services so by default the remaining NHS is the English National Health Service.

          1. Yet Another Anonymous coward Silver badge

            Re: Fix the existing problems before making a profit

            So to allow the Scottish and English and Welsh NHS to help the same patient we need Edward I ?

            It's going to be chaos if we ever need to share railways, or electricity distribution or internet

        2. elsergiovolador Silver badge

          Re: Fix the existing problems before making a profit

          Apparently we need a Supreme Health Service on top of the NHS.

          1. Mike Richards Silver badge

            Re: Fix the existing problems before making a profit

            All overseen by DIdo (don't ask me about personal data) Harding.

        3. Peter2 Silver badge

          Re: Fix the existing problems before making a profit

          Of course if you wanted to be able to quietly sell it off eventually it would make sense to split it into different competing regions / hospitals / trusts

          Which highlights the main problem with the so called debate. Barely anybody realises that actually the entire system was fragmented like this from day one, because the system started off as private entities who billed the customer being allowed to bill "The NHS" for each job that they performed instead, and that beyond being split into counties for administrative convenience the design has barely changed since.

          And thus your GP is a private, for profit business that is an external contractor to the NHS and not part of it. Practically every single hospital out there is it's own NHS trust so they can run their own systems the way that they want without being bothered with having to use the same systems as everybody else in the county etc.

          Any time anybody suggests doing something sane, like allowing any part of the NHS to having access to your medical records rather than having to beg your GP for them who might provide said records within working hours on promise of an appropriate fee people scream "SaVe teH nhS11!1!!!11".

          And the same frigging people then bemoan that we still have a system that on a good day knows who it's patients are because HMRC tells it whom taxpayers eligible for treatment are, but the NHS itself doesn't know basic information it will predictably need if you have an accident and turn up in A&E like say, your blood type or if your going to have an anaphylaxis reaction if they give you various types of medicine, even if your GP knows this.

          It's literally insane, yet apparently unchangeable because of how ignorant people are about "The NHS".

          1. Peter Gathercole Silver badge

            Re: Fix the existing problems before making a profit

            I think that saying the hospitals are separate entities is slightly disingenuous. The hospitals are grouped together under regional trusts, which have between 1 and 9 hospitals depending on their size.

            I live in Somerset, and the Somerset NHS Trust manages two general hospitals, and then a number of community hospitals that are mainly used to allow recovering patents to be moved from the large hospitals to closer to their homes (this is important in one of the larger UK regions with largely distributed populations), as well as offering some outpatient facilities. I sometimes envy people in cities and large towns who have much better access to hospitals without traveling.

            As far as I am aware, this is also a clinical commissioning authority that is the financial controller of procedures.

            Various stats. suggest that there are 223 NHS trusts, managing or commissioning work from about 1270 hospitals.

            But I agree that these are managed separately, within rules set by the Department of Health and Social Care and other bodies such as MHRA. Over the years I remember the NHS, there has been an ebb and flow between more and less centralisation, and I doubt that will change, although the current shape is probably more amenable to privatization.

            Large parts of the support, building and cleaning, as well as equipment procurement for the NHS is already outsourced, so you could say that it is already partly privatized.

            As I remember it, the main problem with the original central NHS patient database has little to do with data formats, and much more to do with the way that access to users of the database were tracked and managed. One stat. that I think I remember was that they had identified over 500 job roles requiring different levels of access, and adding the required controls to the data and grading all of the people working in the different trusts with different job titles, roles and responsibilities in each trust was beyond the scope of the project was capable of.

            Oh, and the fact that they were wanting to put it into just two very large data centres for the whole country was probably going to cause problems.

            1. Peter2 Silver badge

              Re: Fix the existing problems before making a profit

              I think that saying the hospitals are separate entities is slightly disingenuous. The hospitals are grouped together under regional trusts, which have between 1 and 9 hospitals depending on their size.

              Have you worked in NHS IT, and if so do you recollect hospitals using the same systems as everybody else in the county?

    2. TRT Silver badge

      Re: Fix the existing problems before making a profit

      The armed forces have a health and care records system that spans the three services - essential really as they work together so often. There seems to be very few problems with interoperability - so it's not impossible to lift the formats into a National standard. The problems ex service personnel have when they transition to civvy street has to be seen to be believed.

      1. eionmac

        Re: Fix the existing problems before making a profit

        The NON-transferability from military systems to civilian not-joined-up data health services has caused extreme problems to ex -service personnel.

        It would be better to allow the military system to incorporate the civilian.

        The extreme problem of who accesses what is easily solved by making the access via a personal passphrase given by patient to any health service worker needing it.

        If it is "MY LIFE" at stake I can if conscious give authority. That works.

        If unconscious or unable to communicate then access should be automatic.

  6. Anonymous Coward
    Anonymous Coward

    > "Data was essential to our day-to-day response.....

    ...which resulted in our relatively small country having the 6th highest number of deaths in the entire world ???

    1. Yet Another Anonymous coward Silver badge

      That's the sort of data we need to protect.

      In fact it should probably be classified, national security, need to know, and all that

    2. Julz Silver badge

      Wait and see, this is not over yet. Give it a couple of years to shake down and lets look at the figures.

      1. Anonymous Coward
        Anonymous Coward

        You're saying we've still got a chance to make it to the top?

    3. Anonymous Coward
      Anonymous Coward

      which resulted in our relatively small country having the 6th highest number of deaths in the entire world

      It's the 21st largest out of over 200, not "relatively small", and 19th in terms of deaths per capita.

    4. elsergiovolador Silver badge

      Does anyone remember the "dementia tax"? The idea collapsed, but I wonder if there is a hidden agenda behind that huge number of deaths or is it just genuine incompetence?

      1. Richard 12 Silver badge
        Mushroom

        The Tory plan for social care?

        Could it be to decimate those who need it?

    5. Anonymous Coward
      Anonymous Coward

      re: 6th highest number of deaths

      But Simon and Jocasta have to go skiing abroad, the snow over here is so frightfully working class.

    6. Anonymous Coward
      Anonymous Coward

      Worried

      I've been healthy, with one or two injuries that have needed treatment in the last couple of decades, but generally have little to no significant data in my medical record.

      That was up until a month ago, when it looks I am one of the people who have had an adverse reaction to the Covid vaccine I was given, and ended up as an in-patient in hospital for the first time in nearly forty years, and it looks like this is going have ongoing effects for a while until we know the exact fallout of the event.

      Of course I will let people who really need to know this to know, but I really don't want this information being available to others who might deny me services because they've managed to de-anonymize the data, and are not prepared to explain why they don't offer me things.

      This is the big danger.

  7. Mike 137 Silver badge

    Rhetorical?

    '"Does this Government really believe it can use 'secondary legislation' to overturn the millennia-long trusted principle of doctor–patient confidentiality that lies at the very heart of healthcare?"'

    Yes it does.

    There's an interesting oxymoron here. Your most confidential data is up for grabs by default via secondary legislation (regulations not fully subject to Parliamentary scrutiny), but the Cabinet Office is operating an information suppression service to avoid "awkward" disclosures under FoI.

    So limited scrutiny of data sharing regulations and restricted access to what their effects are on the public.

    1. Pseudononymous Coward
      Headmaster

      Re: Rhetorical?

      There is no "millennia-long trusted principle of doctor–patient confidentiality".

      Whilst it has been around whilst doctoring has been a proper profession - say a century or so - it can't even be traced back as far as one millennium, to 1021 and the reign of Cnut the Great.

      Much before the nineteenth century, doctor–patient confidentiality wasn't an issue, partly because widely disseminating confidential information was almost impossible in a world of widespread illiteracy and manual typesetting.

      Instead, you just took your piles along to your barber for treatment, and he stuck leeches on them. And whoever else was waiting to have their hair cut, or their gallstones removed, got to watch. It probably gave them something to talk about whilst they were waiting.

  8. Sparkus Bronze badge

    Data saves lives...

    Prove it. In precise, unambiguous terms.

    Should be easy enough to do.

    Otherwise, it's "data lets us create nonsensical PowerPoint presentations to wow the unaccountable mandarins"

    1. Anonymous Coward
      Anonymous Coward

      Re: Data saves lives...

      I agree and it shouldn't be difficult to do if they asked researchers that found new ways to diagnose conditions in patients before they became a problem. However the problem with that is you would be proving that NHS researchers are already doing the work they claim they want to farm out to the private sector as people would rightly ask why do that if we can do it ourselves. The it just becomes the money grab that it really is.

  9. yetanotheraoc

    Different ending

    "Endorsing his new plan, Hancock said data had identified those who were most vulnerable to coronavirus."

    When I got to the word _identified_, my brain had already supplied a different finish: `Endorsing his new plan, Hancock said data had identified those who were opposed to the plan.` Of course they haven't identified me, because I am not in the UK. But it still gives me pause. Hancock can keep banging on about the benefits of the plan. But data is entirely amoral. It can be used for bad purposes as well as good. Since the whole thrust of the plan is to share more, the simple-minded conclusion is that more good things will happen *and* more bad things will happen. To be taken seriously the policy paper must admit the second fact and thus incorporate a cost-benefit analysis. That it doesn't do this tells me all I need to know about the result.

    1. This post has been deleted by its author

  10. Anonymous Coward
    Anonymous Coward

    my data

    me "please may I have a copy of all data held on me?"

    gp "no you can't have ALL data held on you"

    me "please may I have information about which data I may or may not have please?"

    Still waiting...

    1. Julz Silver badge

      Re: my data

      You can have all but some personal comments that might be attached to the records. These can only be released with the permission of the individuals concerned.

      1. Neil Barnes Silver badge

        Re: my data

        But, but, but... the people who wrote those comments are well educated, skilled, professionals, no? Therefore they would not write anything on a record that they would not be happy to have the patient see?

        That would be most unprofessional.

        1. Anonymous Coward
          Anonymous Coward

          Re: my data

          Therefore they would not write anything on a record that they would not be happy to have the patient see?

          You really believe that? An important item in training everyone from doctors, nurses and other medical professionals to medical secretaries is to explain to them that patients get to see EVERYTHING on their records. They have even been used in court.

          Lawyer: "What does patient TTFO mean?"

          Fast thinking doctor: "Patient To Take Fluids Only"

          If you want to explain innocent meanings of comments, snark away!

  11. Anonymous Coward
    Anonymous Coward

    campaign called 'Data saves lives'

    be afraid. Be very afraid.

    But then, the average citizen will say: yeah, he's got a point, let's be good citizens, DATA SAVES LIVES. People will swallow this (laden or unladen...)

    1. Charlie Clark Silver badge

      Re: campaign called 'Data saves lives'

      Alright then: "Won't someone think of the children?" Please, with your personal medical data we can target paedophisles (sic) and other perverts and get them banged up for life. And we'll cure baby cancer. Only terrorists, neerdowells and the Welsh won't agree.

      1. Mike Richards Silver badge

        Re: campaign called 'Data saves lives'

        Will it help puppies and kittens? (Got to cover all the bases).

  12. TimMaher Silver badge
    Happy

    Note to Editor:

    Hi guys.

    Quick note.

    I didn’t see the opt out links in this article.

    They have been really great in the previous articles as I am now (theoretically) out of Type 1 and am processing Type 2 to my GP.

    1. heyrick Silver badge

      Re: Note to Editor:

      Probably because when they get around to picking a date, everybody's status will be reset, so you'll all need to opt out all over again...

    2. genghis_uk Silver badge

      Re: Note to Editor:

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

      Prior to the launch of the national data opt-out individuals could set two types of general opt-outs, via their GP practice:

      a type 1 opt-out prevents information that identifies individuals being shared outside of their GP practice, for secondary uses.

      a type 2 opt-out prevented confidential patient information from being shared outside of NHS Digital for purposes beyond individual care.

      Type 1 opt-outs continue to be honoured until September 2020 at the earliest when the Department of Health and Social Care (DHSC) will consult with the NDG before confirming their removal.

      Type 2 opt-outs have been replaced by the national data opt-out and are no longer valid. All type 2 opt-outs recorded in GP practices up to and including 11 October 2018 have been migrated to become national data opt-outs. NHS Digital has written to inform people who previously registered a type 2 opt-out of this change. More information on the conversion of type 2 opt-outs can be found on the NHS Digital website: https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/how-we-look-after-your-health-and-care-information/your-information-choices/how-opt-outs-work

      1. TimMaher Silver badge
        Flame

        Re: Note to Editor:

        Me and my BH have now done the online opt out and are taking our letters to the GP this afternoon.

        I don’t really want to have to do this again.

  13. Oh Matron!

    From the man....

    least likely to be able to program a microwave

    The tories' grasp of technology is inversely proportional to the amount of money their chums can make off it.

    1. Anonymous Coward
      Anonymous Coward

      Re: From the man....

      Well of course. The idea is they sell it on the cheap to their mates who then sell it on making a mint which after they leave parliament they can collect, maybe in the form of 500k after dinner speech.

  14. 0laf Silver badge
    Childcatcher

    Political

    Well I guess that title is more acceptable that "Do as you're told pleb".

    Although what a wasted opportunity not to use "All your data are belong to us".

  15. Flocke Kroes Silver badge

    The data is only useful when it is accurate

    Remove the confidentiality and the data becomes inaccurate which damages public health along with sales to the highest bidders.

  16. Sean o' bhaile na gleann

    Not exactly on point, but...

    From the article: "But there was no mention of the fact that those researchers might be outside the NHS or UK public sector, or that their main line of work might be market research for private health companies..."

    In a previous related thread (https://forums.theregister.com/forum/all/2021/06/09/matt_hancock_nhs_data_grab/), I detailed my difficulties in dealing with an e-mail from 'Patient Access', which is the method I used to use to order up my repeat prescription. That e-mail said that Patient Access had updated their T&Cs, and it provided a link to allow the updated documentation to be studied.

    That link was blocked by UBlock, which I'd only recently installed, because of a filter identified as "||exponea.com^". The same block screen identified the filter as coming from 'cdn.uk.exponea.com'.

    Typing 'cdn.uk.exponea.com' into Google resulted in a number of entries for Exponea, but the one that really caught my eye was "Exponea helps you maximize profits and drive customer loyalty by targeting the right customers with the right message at the perfect time".

    It's a case of 'nuff said, as far as I'm concerned. I'm OUT!

    Don't get me wrong - I fully agree with the concept of gathering all this data together for the purpose of analysis that might lead to new understanding of health issues and possible treatments or cures. I see this as A Good Thing.

    But that's the ONLY purpose for collecting the data that I agree with.

  17. Howard Sway

    "Data saves lives"

    Tell that to the Americans who couldn't get insurance for pre-existing health conditions which the insurance companies had data on, you utter utter fool.

    I've worked in insurance, you do NOT want them getting this stuff, as they will inevitably start miraculously becoming "AI" companies too very soon.

  18. Dwarf Silver badge

    Politicians talk bollocks

    Think that is a far more accurate strapline for this programme.

    1. Doctor Syntax Silver badge

      Re: Politicians talk bollocks

      And for most other reports about politicians.

    2. macjules Silver badge
      Black Helicopters

      Re: Politicians talk bollocks

      In this case that would be the "Gottle of Geer" routine where Dido "Can I give you my sort code?" Harding has her hand so far up poor Matt Hancock's inner tube that she can make his eyes water.

  19. elsergiovolador Silver badge

    Mess

    Has anyone ever requested their complete medical record? I found that in mine a lot of stuff was incorrect and I even learned that I had a treatment I don't recall ever having.

    The fact that they want to do it quick, with opt out rather than opt in, without any control who gets to see what, I think means there is something fishy going on.

    I doubt they particularly care about nation's health. It's all about healthy profits of mates.

    1. Roland6 Silver badge

      Re: Mess

      Were your records complete?

      I ask as sometime back, namely, when my daughter was born, I was told that they only retained records for 30 years, which meant that my entire childhood was missing. The impact of this was that they no longer had records that were highly relevant to treating myself and could be relevant to the treatment of my children, given they have inherited (in part) my immune system.

      What is thus interesting about the current data grab proposal is that we can expect the new data repositories to not cull data and thus have over time build up a more complete picture of someones medical history than their GP...

      1. Sean Key

        Re: Mess

        Your GP record is meant to be cradle to grave. If your GP Practice told you that, I would be very dissapointed in them.

        1. Roland6 Silver badge

          Re: Mess

          I would be interested to know what the NHS expectation is.

          I suspect part of the problem I encountered was down to the switch from handwritten records held by a doctors surgery to online records (line drawn to limited data load), combined with switching doctors several times over the years.

          1. MisterHappy

            Re: Mess

            Have a handy link...

            https://www.bma.org.uk/advice-and-support/ethics/confidentiality-and-health-records/retention-of-health-records

  20. Mike Richards Silver badge

    It did what? now?

    'Endorsing his new plan, Hancock said data had identified those who were most vulnerable to coronavirus.'

    All that data and Hancock, Harding and Johnson still managed to give the UK a death rate far greater than comparable countries.

  21. Anonymous Coward
    Anonymous Coward

    And where is the Information Commissioner's Office in this fiasco?

    You know, doing its job and protecting the public's data from misuse?

    Or are they just playing dead in response to the "biggest data grab in NHS history", because they've been told to?

    Another chocolate teapot.

    :(

  22. Potemkine! Silver badge
    Childcatcher

    FUD

    If you don't share your data with, well we prefer not to mention, plenty of children will die! Do it or you are a insensitive monster.

  23. IGotOut Silver badge

    Brought to you...

    by the same crew that said the NHS would be £350million a week better off.

    Still waiting.

  24. Anonymous Coward
    Alien

    Opting out

    Is there a comprehensible guide on the various choices for doing this?

    I looked at this which is inevitably opaque. Does a type 1 optxout imply a national data opt out? What exactly is a national data opt out?

    There needs to be an unbiased guide.

    1. Sean Key

      Re: Opting out

      It's better than it was two weeks ago. Try this: https://www.digitalhealthcoachuk.net/gpdproptoutexplained

    2. Mr Slasher

      Re: Opting out

      https://medconfidential.org/how-to-opt-out/

  25. Sean Key

    Some musings on GPDPR

    - If you go down the Opt-In road you'll miss a big chunk of the population, which will knacker NHS planning, especially for the most disadvantaged / the heaviest service users, which will make inequalities worse. Deciding on OptIn / OptOut is a challenging ethical problem

    - Trying to sneak this through in 6 weeks without telling anyone was a fatal error

    - The DPIA remains unpublished, so key protections around avoiding re-identification of anonymised or pseudonymised data can't be assessed

    - There's continual lying, or confused messages that look like lying, from the powers-that-be, that don't engender trust

    - so I'm opting out until we get both a new cabinet, and a better understanding of the protections, I've also created some web pages with guidance on opting out at: https://www.digitalhealthcoachuk.net/gpdproptoutexplained

    1. Anonymous Coward
      Anonymous Coward

      Re: Some musings on GPDPR

      My other half works in the NHS and assures me that in terms of research and service planning there is already plenty of legitimately obtained, anonymised, clinical data available to the NHS. The feeling is that this is more driven by commercial exploitation potential.

      My partner's advice? Opt out to support the NHS: free at the point of delivery to all who need it.

      1. Roland6 Silver badge

        Re: Some musings on GPDPR

        "Opt out to support the NHS"

        Should be on the sides of buses, billboards etc..

  26. I Am Spartacus
    Mushroom

    GPDPR

    We just peed all over your GDPR.

    Opt out form here: https://digital.nhs.uk/your-data/opting-out-of-data-sharing

  27. Sam Therapy
    Flame

    Week old sushi...

    That's something I trust more than Matt "Fucking Useless" Hancock.

  28. batfink Silver badge

    Data Saves Lives

    Therefore ALL of your data should belong to us. Let's not fuck about with just your (confidential) health data.

  29. Anonymous Coward
    Anonymous Coward

    Hatt Mancock

    Isn't he MP for Suffolk? Should we blame them?

  30. Will Godfrey Silver badge
    Unhappy

    Byline is wrong

    The devil is in the government.

  31. Roger Kynaston Silver badge
    Devil

    Data will be lost anyway

    Isn't Dido typhoid typhoon Harding going to be holding the keys to NHS data imminently? If so, it will be 'mislaid' anyway.

  32. Anonymous Coward
    Anonymous Coward

    don't fall for that shit about giving the companies more money.

    https://www.youtube.com/watch?v=hRWEteXYD_Y

  33. pxd

    I thought there was already a better way to achieve the desired goal (without the big data grab)!

    According to Ben Goldacre, who certainly knows more than I do about these things, there is already a way to realise the benefit of the NHS patient dataset, without parcelling it up and handing it over to any old 3rd party. Here (https://www.medrxiv.org/content/10.1101/2021.05.06.21256755v2) is a paper describing how a study of 58 million patients was carried out with the records in situ. If I follow the whole thing correctly, OpenSAFELY (https://www.opensafely.org/) have figured out how to run queries against our data while it is still in the database - so why the need for a data grab in the first place? pxd

  34. Anonymous Coward
    Anonymous Coward

    This stinks!

    Using anonymized patient data for specific epidemiological studies is fine.

    However, the government were NOT open and honest about what they were doing, they are passing the data to a 3rd party rather than keeping it within the NHS and allowing access, we don't know what will be done with it, we don't know who will end up having access to it, we don't know what measures have been put in place to keep it private, there's a whiff of selling taxpayers private info for profit about this, and that profit goes where exactly? Not the poor bloody taxpayer that's for sure! You can never put this genie back in the bottle once it's out.

    1. Anonymous Coward
      Anonymous Coward

      Re: This stinks!

      Wait until you hear about the privatisation of the NHS that's already happened behind closed doors...

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