back to article Fresh concerns about 'indefinite' UK government access to doctors' patient data

Concerns are being raised over UK government proposals to extend emergency powers introduced during the pandemic, giving it access to patient data held by general practitioners (GPs). The government has decided to put in place a plan "omitting the expiry date contained within" emergency COVID powers and "to make a …

  1. Anonymous Coward
    Anonymous Coward

    Notice how it's only NHS England

    The structure of the NHS in England in particular lessens the power to push back against government unlike in Scotland where it's on the old Health Board model.

    This is what you get from decades of ******ing around with the NHS for political reasons only.

    1. Anonymous Coward
      Anonymous Coward

      Re: Notice how it's only NHS England

      Agree - I think this is a key point - IMHO it's much easier to make a case for working with (de-identified) patient data at a health board level - say Lothian (Edinburgh & surrounds) or Grampian (Aberdeen and surrounds), where the relationship between the data and the services is much more local and obvious, rather than at a national (particularly England - huge!) level where the relationship is much more nebulous. Additionally Health Boards have (some) democratic accountability and transparency - e.g. externally published minutes, or local authority representation on some internal boards. On a pragmatic level the quality of primary care data will have many local quirks that I doubt can be unpicked or troubleshooted particularly effectively at a national scale...

      (AC as I am at work.)

      1. I_am_Chris

        Re: Notice how it's only NHS England

        Scotland already holds national-level data which can be made available for research. It lacks the level of detail available from regional data, however.

        If you think hospital data is any better than the "quirks" in GP data, then I've got a surprise for you. There are no standards and there's no consistency between regions, boards or trusts.

        1. John Brown (no body) Silver badge

          Re: Notice how it's only NHS England

          On top of that a "trust" is in itself a nebulous thing, especially geographically. I did some work with a specialised trust that has a number of hospitals and a local presence many, many towns across 4 entire counties. covering a very, very large area. Far more than the old Health Authorities ever did, but only in it's own specialist care area, not all care areas the Health Authorities did. Then there's the overlap. Other trusts in the same area also carry some of that area of care too. I'm sure it's same over the whole of England. A mish-mash of competing trusts overlapping the same care in at least adjoining geographic areas.

  2. Doctor Syntax Silver badge

    This "living with Covid" idea seems to be to drop most things - self-isolation, mask rules, free lateral flow kits etc. Odd, therefore that one thing that remains is a data grab. You'd almost think it was nothing to do with Covid.

    1. TRT Silver badge

      Living with SLURP.

      1. Kane Silver badge
        Joke

        "Living with SLURP."

        Mmmm, tasty data!

    2. codejunky Silver badge

      @Doctor Syntax

      "You'd almost think it was nothing to do with Covid."

      One thing covid proved was that governments could scare people into a huge power grab pretty easily. Covidpanic has been a disaster and tried around a large part of the world. Hopefully people will learn from it.

  3. Tubz
    Big Brother

    Simply big brother by stealth using any means available.

  4. VoiceOfTruth

    This data will be sold to USA 'health' businesses

    It's our data, but it will be sold off. Boris Johnson, American by birth, will do whatever is necessary to cosy up to his home country.

    For about 2 years there has been nothing in the news except for Covid. Then the Russia/Ukraine problem started and Covid was not mentioned. Now it's back again. The establishment still treats this country as though the people are subjects and they are the lords and masters. We are here to serve their means and desires.

    Next up is social credit scores. Unvaccinated = -1,000 points. Double vaccinated + booster = +3 points.

    1. VoiceOfTruth

      Re: This data will be sold to USA 'health' businesses

      4 thumbs down so far. I guess those are from USA 'health' business shareholders who don't like a spoonful of truth. How much does an ambulance ride cost in the USA? How much of that goes into the pockets of 'health' providers there?

      1. I_am_Chris

        Re: This data will be sold to USA 'health' businesses

        Nope. downvoter here. It's because the statement is bullshit. Data governance controls here are very strict. Selling patient data would not be acceptable under any guise whatsoever.

        It also would be useless to US Insurance Companies. Why would they want data on a population that is not their customer base and interacts with healthcare in wholely different way?

        You're scaremongering.

        1. EnviableOne Silver badge
          Alert

          Re: This data will be sold to USA 'health' businesses

          selling of anonymised (however badly) data and aggregate data on the population is not controlled in any way and the unique coherence of NHS data covering 55million people in a similar geographic area makes it a commodity.

          it allows statistical testing of outcomes, which is very much of use to the US Insurance companies and the healthcare providers

          It also provides data to those American healthcare companies like the one that just opened a 184-bed hospital in Grosvenor Place, near Buckingham Palace, in central London, looking to gain access to the UK market and pay the Nation MPs handsomely for a specific trust/region

    2. Twanky Silver badge
      Facepalm

      Re: This data will be sold to USA 'health' businesses

      Boris Johnson, American by birth, will do whatever is necessary to cosy up to his home country.

      Is that why BoJo renounced his US citizenship in 2015/16?

      1. Eclectic Man Silver badge

        Re: This data will be sold to USA 'health' businesses

        Twanky: "Is that why BoJo renounced his US citizenship in 2015/16?"

        No, it was because the USA demands that their citizens pay taxes on everything, and BoJo sold a house in the UK and didn't want to pay USA taxes on it. The only way he cold avoid them was to renounce his USA citizenship. As I recall, but The Guardian has it slightly differently:

        "In 2014 he publicly said that the US was trying to hit him for tax on the sale of his home in Islington, north London, something he said he regarded as “absolutely outrageous”, although he later reportedly paid the demand. The US tax authorities have been mounting a campaign to crack down on the earnings of dual nationals."

        https://www.theguardian.com/politics/2017/feb/08/boris-johnson-renounces-us-citizenship-record-2016-uk-foreign-secretary

        1. nobody who matters

          Re: This data will be sold to USA 'health' businesses

          "......but The Guardian has it slightly differently..."

          The Guardian always does ;)

    3. cantankerous swineherd

      Re: This data will be sold to USA 'health' businesses

      wouldn't be at all surprised to find it being given away, in return for a seat on the board at some future date.

      1. John Brown (no body) Silver badge

        Re: This data will be sold to USA 'health' businesses

        Well, ex-Prime Ministers have to have something to help pay the bills when they leave office. Something better than living in a "shepherds hut" writing fiction and being a lorry driver delivering supplies to refugees. (probably for the publicity more than any other reason. Cynical? Moi?)

  5. Anonymous Coward
    Anonymous Coward

    Always expected....look at Income Tax

    This was predicted by information governance professionals (including me) right at the start...

    The latest move can be seen in the Health and Care Bill, where they are looking to change the definition of "personal information" for healthcare (section 95) in a way that allows them to use pseudonymised data freely. The definition in there differs from that in the UK GDPR in that the latter includes other data sets...

    The problem is that no government ever wants to give up useful powers. Consider Income Tax - a "temporary" measure to fund the Napoleonic Wars, but became something that is renewed every year.

  6. I_am_Chris

    New normal

    It's funny how we are all very keen to learn from the positives we've experienced during COVID (e.g. less travelling, WFH), but why shouldn't continue in the health domain.

    We shouldn't go back to where data is held back simply in principle. The benefits for research and ultimately patient care are obvious and have been shown through COVID, so why not continue it in a safe and regulated manner. Which it will be. There's no "data grab" to do whatever you want with the data, it's a process for enabling access when justified on scientific, legal and ethical grounds.

    1. Graham Cobb Silver badge

      Re: New normal

      It should be a process for enabling access when legally restricted to limited pre-approved uses, declared in advance, destroyed when no longer needed, and subject to consent from the patient.

      Basically, it needs to be fully subject to GDPR: I should be able to check that there is no data about me included (even if pseudonymised), I should be able to withdraw consent, I should be able to find out who has processed my data, and there must be meaningful fines and penalties for abuse.

    2. VoiceOfTruth

      Re: New normal

      -> We shouldn't go back to where data is held back simply in principle.

      Then hand over your data. You do not speak for me.

    3. John Brown (no body) Silver badge
      Coffee/keyboard

      Re: New normal

      "so why not continue it in a safe and regulated manner."

      Yes, in an ideal world where people are all honest and up front about their actions and proper controls and anonymisation are in place and properly monitored.

      "Which it will be."

      Sorry can't comment on this, Laughing too hard!!!

  7. Eclectic Man Silver badge

    Notifiable diseases

    In the UK there are diseases that have to be notified to 'the authorities' by law. The list includes Covid-19, along with other seriously nasty diseases like Measles, Malaria, Leprosy and Cholera.

    https://www.gov.uk/guidance/notifiable-diseases-and-causative-organisms-how-to-report#list-of-notifiable-diseases

    Maybe the government can use the same reporting structure for Covid-19 as for the others, when things, hopefully, settle down.

  8. cantankerous swineherd

    just come across this:

    https://theconversation.com/testing-sewage-has-helped-track-covid-soon-it-could-reveal-much-more-about-the-uks-health-178141

    as they say, a comprehensive and non intrusive monitoring scheme.

  9. Anonymous Coward
    Anonymous Coward

    GPDPR might still happen? Here in Northern Ireland NIECR did happen 9 years ago...

    So, despite individuals and GPs concerns and objections, GPDPR would have been lawful to implement (as there was a Ministerial "direction" to make it happen).

    Meanwhile in Northern Ireland we are now in the 9th year of NIECR (NI Electronic Care Record) being in operation (plus the ECS system for 2 years before that) where portions of GP patient records are also *automatically* stored centrally by the HSC NI (aka NHS NI) for an ever increase number of "health related" organisations to be able able to access them, with this whole data sharing apparently operating since July 2013 in an *unlawful* fashion.

    More than one year ago I opened ICO complaints regarding both my GP Practice and the central body who operate the NIECR and I am still waiting for ICO to properly address the matter.

    Recently ICO delivered an "outcome" for the 2nd case - completely ignoring all but 2 of the issues I raised. The remaining 2 issues were not actually properly addressed either. The ICO accepted an answer from the organisation at face value without seeing/requiring any documentary proof - the ICO "outcome" said there were no documents to back up my "version" of events (when tackled about this the case officer then said internal ICO documents that I'd highlighted, such as relevant minutes of meetings ICO had with the org 3 years ago, were "ICO generated evidence" and so could not be considered).

    I pointed out multiple documents (including from 3rd parties, many of the org's own documents & those ICO internal documents) that directly contradicted what the org had told ICO.

    ICO eventually did a complete u-turn in their position and requested that the org provide them with relevant documentary proof from NIECR's launch in 2013 to support their position and also have asked the org to respond regarding the org's own documents which contradict this position.

    That response was apparently due yesterday.... I'm not holding my breath. The org is basically caught in a lie and I guess they will continue to keep lying so that the whole house of cards that is NIECR does not collapse.

    Even if ICO do eventually uphold my complaints they have indicated that they are only investigating the handling of *my* personal data by my GP Practice and the central org in question, and that ICO have no intention at all of looking into the alleged unlawful processing of personal data of the other 1.9 million people in Northern Ireland by NIECR participant organisations. To use one of their own phrases, they don't have the "regulatory appetite" for it.

  10. Jim Whitaker
    Flame

    GPs again

    The data does not belong to GPs; it is just held by them while fulfilling a contract from the DoH. We should move to a single health record for all sorts of reasons, clinical, research, and managerial.

    1. DevOpsTimothyC Bronze badge

      Re: GPs again

      The data which belongs to the individual to which it pertains; is held by their GP while fulfilling a contract from the DoH

      FTFY

  11. codejunky Silver badge

    Ha

    "Concerns are being raised over UK government proposals to extend emergency powers"

    This is a shock? The warning isnt new, Hitler took power through emergency powers and any power land-grab to almost any extent is difficult for politicians to give up. All of this from inflicting serious harm in a panic-

    https://www.theepochtimes.com/if-lockdowns-and-mandates-failed-why-are-they-still-pushed_4352995.html

    May level heads return.

    1. Anonymous Coward
      1. codejunky Silver badge

        Re: Ha

        @AC

        If you read your link it demonstrates its age pretty well (jan 2021) with the following-

        It suggested that the pathogen could have emerged, maybe purposefully, from a lab in Wuhan. (Nobody knows for sure, but most scientists believe that the virus jumped naturally from animals to humans.)

        Didnt age well it seems

      2. Anonymous Coward
        Anonymous Coward

        Re: Ha

        Clearly it can only be credible if it comes from the guardian or it’s sisters

        https://www.theguardian.com/world/2022/jan/02/britain-got-it-wrong-on-covid-long-lockdown-did-more-harm-than-good-says-scientist

        https://www.theguardian.com/commentisfree/2022/mar/24/scientists-wrong-covid-virus-experts

        https://www.theguardian.com/world/2021/dec/29/eastern-european-countries-adopt-authoritarian-measures-covid

  12. Frank Bitterlich

    "Emergency powers"

    Another case of "there is nothing more permanent than a temporary solution."

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