back to article UK's National Data Guardian warned about GP data grab being perceived as going 'under the radar'

Before the UK government launched its programme to extract patient data from GP systems in England and Wales – now twice-delayed – the National Data Guardian (NDG) warned the government could be "perceived as trying to introduce changes 'under the radar'." The warning came from Dame Fiona Caldicott, architect of the current …

  1. JohnMurray

    .....all that will last as long as it takes to install the Queen of Carnage to head NHS digital....and I still don't believe them anyway...

  2. oiseau Silver badge
    WTF?

    Listen?

    National Data Guardian (NDG) warned the government could be "perceived as trying to introduce changes 'under the radar'".

    Of course those in charge of the NHS did not listen.

    Whatever for?

    Dame Caldicott was only puting sticks in what could be perceived to be will end up being a very profitable wheel run by the usual chummy suspects and their overseas partners.

    To the expense of the usual victims: the NHS and the taxpayers.

    And we cannot have any of that, can we old boy?

    O.

    1. nematoad Silver badge
      FAIL

      Re: Listen?

      "...a very profitable wheel run by the usual chummy suspects and their overseas partners."

      I couldn't agree more.

      When the NHS Digital people told the minister and friends about data mining of the users of the NHS, it was the "mining" bit that caught their eye. All these characters could see was a gigantic profit opportunity and sod the privacy and ethical considerations.

      All this private and very sensitive data is to them is a resource to be squeezed for as much money as they can get out of it.

      I'll bet you that the term "gold mine" cropped up in some of the discussions about this scheme.

      1. eldel

        Re: Listen?

        There will of course be an 'opt-out' for citizens to use. Which will, in the normal run of things, be either impossible to access or will revert after an unknown and variable period of time. Or even both - just to make sure that you don't interrupt the money flow.

        Unless you are an MP or otherwise 'excluded' person - after all they are far too important to be grouped with the masses.

        1. Anonymous Coward
          Anonymous Coward

          Re: Listen?

          “But the plans were on display …”

          “On display? I eventually had to go down to the cellar to find them.”

          “That’s the display department.”

          “With a flashlight.”

          “Ah, well the lights had probably gone.”

          “So had the stairs.”

          “But look, you found the notice didn’t you?”

          “Yes,” said Arthur, “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard’.”

  3. Kraggy

    "and that it had issued a press notice, social media content and comms to GPs at the time of the launch."

    Clearly the person who came up with that idea hasn't needed to actually get a GP appointment face-to-face in the last 18+ months!

    1. JassMan Silver badge

      Clearly the person who came up with that idea hasn't needed to actually get a GP appointment face-to-face thought it was a brilliant way to hide information in plain sight

      FTFY

      Also a brilliant bit of arse covering as obvs not their fault if no-one is actually allowed into GP waiting rooms to read it.

  4. Mike 137 Silver badge

    "effective communications and engagement about GPDPR"

    Even under the GDPR (the real one) governments have a freedom to process sensitive personal data (including medical data) where "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices" [Article 9.2(i)] provided that national law (in this case UK law) "provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". Of course the definition of suitability is very much a matter of interpretation by the very body that wants to process the data.

    In this case, therefore, "effective communication" will probably be construed as reassurance PR fluff, and "engagement" as distributing it.

    As I've said many times in many public arenas, transparency is worthless unless there are effective routes for redress against abuses, and it's hard to see how a member of the public can bring any force to bear to curb abuse of their medical data, as the would-be processor both makes the rules and defines its own criteria for their adequacy, and can also change them at will. Yet again, I repeat that data protection legislation was originally envisaged to protect persons from governments, but it has inevitably failed to achieve that because governments make the rules.

    1. Vometia has insomnia. Again.

      Re: "effective communications and engagement about GPDPR"

      Well yeah. My experience of attempting to correct wrong information was incredibly painful: it was time-consuming and expensive, and I was argued with, stonewalled, side-tracked, stalled, lied to and ignored for what turned out to be years. Even when they finally conceded it was incorrect, there are still remnants that they won't correct (same approach as before) and even the ICO said that ultimately medical records are a "matter of opinion". So my experience has not been at all positive. I doubt my experience is uncommon and I also doubt that there aren't people with much more serious and egregious problems that need fixing.

      As for GPDPR, which I wouldn't've found out about if not for El Reg, the deliberately obstructive paper opt-out was delivered on time (I posted it through their letterbox myself) but I never received an acknowledgement even after emailing to ask for one, so I doubt it's been processed. And given that my practice has been put into special measures, I doubt it will be either. Pretty much the same story with the care.data opt out which IMHO should've carried over anyway. The only confidence I have that my medical info won't be splurged everywhere is that it probably already has.

      1. Mike 137 Silver badge

        Re: "effective communications and engagement about GPDPR"

        "ICO said that ultimately medical records are a "matter of opinion"."

        the ICO is very good at declaring things to be "a matter of opinion".

        I brought a case on the basis that a data controller was generalising details of processing on the basis of legitimate interest. My argument was that legitimate interest grants the data subject the right to object to specific processing, but if they're not told about it they can't object (a somewhat obvious point). Ergo they are denied a right under the legislation. The ICO responded that it considered it "sufficient" to provide generalised details. When I challenged the decision, the ICO responded that the decision was "an opinion" that I was free to challenge further in court (necessarily at my own expense).

        A regulator that seems to think it's a consultancy.

  5. Trollslayer
    Flame

    There is light at the end of the tunnel

    They will cock it up.

    1. Anonymous Coward
      Anonymous Coward

      Re: There is light at the end of the tunnel

      Why? Are Capita involved?

      1. JimPoak

        Re: There is light at the end of the tunnel

        Having peaked my interest I sniffed around Capita web sight and it looks a lot like "Omni Consumer Products" in objectives and motivations. It seem the government his given significant control to Capita. These are the people who reject your application for any benefit you may be entitled to.

        http://www.capitaemployeesolutions.co.uk

  6. Chris G Silver badge

    Transparency

    In my experience, when a government or one of it's departments is required to be transparent, the language and methods it uses are, to a lesser or greater extent, opaque.

    When a goverment or its ministers are effectively stealing from the citizenry they as individuals should be answerable in a court of law.

    1. Warm Braw Silver badge

      Re: Transparency

      individuals should be answerable in a court of law

      Thanks to that same government, it's now taking about 3 years for a serious assault case to come to court. Even if you could get the turkeys to vote for Christmas, Christmas would be postponed indefinitely.

      1. gandalfcn Silver badge

        Re: Transparency

        "individuals should be answerable in a court of law". But politicians are not individuals in the eyes of the law. Ask Tony Blair.

        1. Chris G Silver badge

          Re: Transparency

          Bliar is a barrister so one could expect nothing more than weasel words from him.

  7. Pete 2 Silver badge

    ignorance or indifference?

    > leading to an outcry from campaigners. They claimed patients were unaware of the changes

    I wonder if those campaigners ever entertained the possibility that most people simply do not care who has access to their health data?

    1. Adrian 4 Silver badge

      Re: ignorance or indifference?

      Unfortunately true.

      So the government also needs to explain why they should and the consequences of that, or they will still fail the people who employ them to manage the country.

      1. Pete 2 Silver badge

        Re: ignorance or indifference?

        > Unfortunately true.

        Quite possibly.

        Although everyone knows thanks to Yes Minister that the public attitude depends completely on the questions asked.

        Do you want the NHS to release selected anonymised health data to research institutes so they can develop better drugs and treatments?

        Do you want the NHS to sell your private health information to commercial companies to make a profit from?

        Disagreeing with or disliking the idea that people simply don't care does not invalidate it as a possible reason. Reality is not a popularity contest or a democratic choice. Nor does nature recognise what is good or fair.

    2. gandalfcn Silver badge

      Re: ignorance or indifference?

      "most people simply do not care" that ls because they are / were unaware.

  8. Kall

    TTIP or bust

    This attempt was inevitable after the failure of the remain campaign. This was going to be automatic under European legislation or TTIP - The Transatlantic Trade and Investment Partnership (TTIP) ...

    TTIP has the potential to facilitate the development of new medicines and ... property protection, and enhances patient access to innovative medicines!! It failed as the UK left and the timing of 'no longer relevant' is in line with the seceding of the UK from the European Disunion.

    I am on record saying that there would be an attempt to sell the information to the US via a backdoor hence there was no surprise that the Government was going to try to cash in after the TTIP became irrelevant, the back handers will now get worse and there will be more attempts as this data is incredibly lucrative - vigilance is required, mostly for the US. Expect some link up with Covid Data at some point as well. Am I being cynical, nope. The situation will arise that end of life care will be tied into a US model, privatisation will only benefit the rich.

    You have been warned ;)

    1. gandalfcn Silver badge

      Re: TTIP or bust

      Quite. There were a lot of similar reasons people like Boris and the ERG backed Leave. and they thay had nothing whatsoever to do with sovereignty etc., just the opposite.

  9. Doctor Syntax Silver badge

    As I posted here just recently, for the title "Guardian" to be meaningful the role must have a statutory veto and must be informed of any relevant projects whilst they're still at the planning stage. For an official to ignore this should be a sackable offence.

    1. oiseau Silver badge
      Facepalm

      For an official to ignore this should be a sackable offence.

      Of course.

      But to what effect?

      You do know how revolving doors work, don't you?

      Sacking is not nearly enough.

      O.

  10. Howard Sway Silver badge

    campaign of engagement and communication explaining how data is used and patient choices

    Can't wait for the big billboard ads then : "The data's all going to Palantir and Google and you have no choice"

  11. Anonymous Coward
    Anonymous Coward

    Palantir -- Then and Now!!

    From 2018:

    - Link: https://www.bloomberg.com/features/2018-palantir-peter-thiel/

    And now (2021) Palantir knows EVEN MORE about you.

    Welcome to Tory governments and surreptitious slurping!!!

    Of course large brown envelopes and large chunks of folding money have NOTHING at all to do with this!

  12. Anonymous Coward
    Anonymous Coward

    poster for GPs' surgeries

    The GO surgery I can't just visit at all? Have to make a telephone appointment, and even then the GP does a telephone consultancy.

    They should have to mail shot every home with this, and a simple link to a website to opt out.

    However, the current Government, their COVID emergency stuff allows lots of other things to go under the radar, so it's a good observation. The current opt out is about as bad as that planning objection in Hitchhikers Guide to the Galaxy.

    1. Lil Endian

      Re: poster for GPs' surgeries

      They should have to mail shot every home with this, and a simple link to a website to opt out in.

  13. adam 40 Silver badge
    Trollface

    GPDPR

    I wonder which "Sir Humphrey" came up with this acronym?

    It's so much like "GDPR" - which confers protection rather than abdicating it - that it seems unlikely that it was not done apart from to confuse Joe Public. (is that enough double-negatives for any civil servants watching???)

    I get the distinct feeling that each of my (acknowledged) attempts to opt out will be silently discarded.

    I note that the NHS is already not supporting older links to the opt-out forms e.g.

    https://assets.nhs.uk/nhsuk-cms/documents/Make_and_manage_your_choice_PDF_108kb.pdf

    comes back with

    <Error>

    BlobNotFound

    <Message>The specified blob does not exist. RequestId:06faacb8-101e-0002-5cd9-955951000000 Time:2021-08-20T15:39:56.7613983Z</Message>

    </Error>

    so links handed around in social media and emails to friends and family will no longer work. Shame on you!

  14. adam 40 Silver badge

    Official NHS Link to opt out of GPDPR

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

    Please el Reg on every article you post about this, help to spread the word by publishing the up-to-date link to opt-out.

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