NHS Digital. Sharing your Data

Arthur - Cool Britannia Series A3 Print – Rogues' Gallery
“Wanna buy the NHS data…only one previous owner”….Arthur Daley (AKA UK Government) used-car-salesman

You Need to Read this Page. The NHS is collecting data from your GP and this could be sold by NHS digital. This collection will occur on July 2021 and you have until 23 June to say whether you agree or not. No action on your part and you agree. To stop your GP doing this, you need to hand in a form stating your opting out to your GP.

General Practice Data for Planning and Research: NHS Digital Transparency Notice (Click here)


How and why NHS Digital collects, analyses, publishes and shares data collected from GP practices for planning and research.

If you do not want your identifiable patient data (personally identifiable data in the diagram above) to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice. This is known as a Type 1 Opt-out.

What patient data we collect

This collection will start from 1 July 2021. Patient data will be collected from GP medical records about:

  • any living patient registered at a GP practice in England when the collection started – this includes children and adults
  • any patient who died after the data collection started, and was previously registered at a GP practice in England when the data collection started

We will not collect your name or where you live. Any other data that could directly identify you, for example NHS number, General Practice Local Patient Number, full postcode and date of birth, is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.

This process is called pseudonymisation and means that no one will be able to directly identify you in the data.

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  • I had a question in mind. Is there anyone on the team that would be interested in testing the other antiretrovirals ( in vitro ) against EBV ?

    It could help Prove or Disprove the efficacy for the other antiretrovirals that have not been tested yet. Even if we only find out that 1 more of them has efficacy I think this could be useful in expanding the possibility of reaching out to Pharma to start a trial in ms. I think it might be possible to get this in vitro study funded by the people who support this blog and this idea.

  • What are your thoughts on it? I have filled out the form opting out – but have yet to hand it into my GP. Will you be opting out – genuine question? Is this a question of the greater good when it comes to medical research/planning or just the government hoping to sell our data to private companies?
    Kinda guessing your choice of Big Brother graphic is a clue.

    • It is a question of the greater good. There is a video on the Government website, but we both know it will be the government hoping to sell our data to private companies that is the issue. This is not the first time this opt-out has been done/requested. It was done about five-ten years ago, when I opted out. Where you aware that this happened? It was publisized very little as has this one, so it makes me concerned. This is why I posted on it. Because to be informed is what you want. I wonder if it is another part of privtization of the NHS by the back door. I would rather that they do not do this….There will be a data breach at some point. We only have to look at history.

      (I dont read the daily mail but if this is true then I is confirms my thoughts).

      However, the new generation don’t care. I have a smart (Spy) phone. Google , Facebook and the likes are probably doing much much worse. You are being monitored 24/7 if you have a smart phone they know what you do. We will all get our NHS app on our phones so we can prove we have been vaccinated. This will bring your health records down to your phone…Do we really think that Apple/Google will not be able to access this. Isn’t it funny that you talk about something in the car and the next minute you are getting an advert on facebook for what you have been talking about. What next Ancestry.com gets access to the health records and links your DNA to your health record….Iceland have done this already by the way.

      However, it is a personal choice. As someone who is been hounded because of government-based computerised information that cannot tell I am not the person that they are looking for. I am not the drug dealer/fake passport holder or what ever it is. However, I am the only person in the country with my old name and birth date…I know I have checked the birth certificates and say old name because because I have done a deed poll to change my name. Yes I fully expect the system to be so SH1 that they still think I am the drug dealer/fake passport holder. They hold the information and they wont tell you what they have…National Security and all that. Anyway who needs a passport I am not travelling anywhere….(Conspiracy Theory….COVID-19 was started by MrsG to keep ProfG at home:-)

      I will change the picture from Big Brother to Arthur Daley https://en.wikipedia.org/wiki/Minder_(TV_series) dodgy used car sales man trying to make a quick buck

      • Arthur Daley, dodgy used car sales man trying to make a quick buck.

        Or as this government would have it, a go-getting, buccaneering entrepreneur that the UK needs many more of after Brexit. I think old Arthur was in charge of PPE procurement from his lock-up last year. A nice little earner 🙂

    • I’m opting out and handing it in to my GP this morning. This sounds initially like it might be a good idea but you can guarantee the spivs in this government will inevitably sell this on and who knows where it will end up? The fact there has been little publicity or consultation around this is telling. Many GPs have serious reservations and will not be complying.

  • Just another bit on pseudonymisation. It doesn’t prevent your data from being connected to you, it’s just another layer of protection. Like putting an extra lock on your front door, it feels a lot better, but your insurance company won’t lower your premium.

  • Hi MD – Thank you for this post and I’m interested to read your thoughts on the matter. My only concern would be if we don’t share our information (records) that we stick in the past and local services will not be put in place, because they (the people who hold the information and funding) won’t allocate anything new and more likely to have overcrowded GP surgeries, who are barely (so aren’t) getting through the back log of patient problems now! In my local surgery, it’s an house (converted into a practice) it is not fit for purpose, no lift and has narrow winding stairs which take you to the GPs! There’s no space in reception and the car park isn’t adequate and these are just the minor problems! So, if we all say we don’t want to share and move with the future – I don’t mind someone knowing I have MS and having come to terms with the diagnosis, I volunteer myself to research, share my news and health problems and talk endlessly about the disease, to anyone who wants to listen. What harm can this do! My employer (knew) was supportive and maintained a professional way forward to help me with appointments etc. My family and friends all know – so that they can support, understand and of course get involved with the condition to help raise funds for the cause. The insurance companies have always been unhelpful when it comes to insuring you with health conditions – that is nothing new and they will continue to do this regardless. With folk knowing my health problems – surely people can learn and make changes to help support the future generation (my children) to become more open and honest about themselves and not worry about any ‘big brother’ so called consequences. If you don’t know your neighbour is ill – you don’t know your neighbour (or you’re just don’t care to listen). If privatisation is what we are all worried about – huh hemmmm…. its already happened, and been happening for years! There’s be an uproar from the British people if we sell off the NHS I know – and hopefully this never happens. We must all be more honest with each other and stop this British stiff upper lip BS. It spreads like wildfire (just look at the anti-vaccine folk) – what have we got to loose that we haven’t already. Our phones, gadgets track us, they know where we shop, eat and target the young in a way that makes my blood boil! But Google, FB and the like aren’t going away and they’re unlikely for years – until a newer more anti-electronic (makes me laugh when you hear folk say about climate change and they have a phone and drive a car and go on holidays abroad, as soon as they can!).

    Take care and all the very best to you all,

    Keep sharing – and do we really need to inundate our GP surgeries with more anti this and that stuff! GPs aren’t always best place to advise about sharing this information as they are still very cautious and nervous about how the government is treating them and in particular the NHS. But the money pit (furlough) will have to be paid back by us all in future years and I know, it’ll have to be done. There’s no money now and there wasn’t much before in the NHS as it was running on empty in A &E for years!

    • This is going to happen by July, but thanks for you counter argument…The endeveour has already happened, they are obviously changing their terms of sale. You are right we don’t need to innndate our GPs. The NHS sell off has been happening over the years. As for bankrupt PLC maybe getting the multinationals including Google/Apple/Amazon to pay UK tax is the a better source of income:-)…A caring is sharing..or is it sharing is caring

      In the new open world just think getting to see what you neurologist/hospital is prescribing will be an eye opener but hey Pharma already have this info

      • I am not active in MS research. I arrived at the MS party after I had retired from a career using mathematical modelling and statistics to study many different problems.

        In this blog and other places people give their version of what is wrong with the world, how certain groups are disadvantaged etc. I look for a way of to test the supposition by looking at the data.

        The MS Register does a good job and I would encourage everyone with MS to sign up and be involved. However, as it is a self selecting sample it is never going to be fully representative.

        Access to data on the whole population data on MS should excite researchers. If significant numbers opt out it will lesson the benefit in a similar way to people opting out of having their vaccinations!

        (I can do conspiracy theories too, but in the interest of balance I wanted to present the other side of the coin)

        • I doubt significant numbers will opt out because they dont know about the option to opt out….that is the point. As a person who has been trying to access pharma data I can see the benefit but also see that you need a frank discussion first, because it is not open access to the trial data.

  • Thanks for the reminder and link to the form. You’re right, this has really not been advertised, and unfortunately we can’t trust the current government.

  • “any living patient registered”

    I thought that you have to be alive and kicking to be a patient

    Or is there death patients?




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