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NHS Data grab/GPDPR

Discussion in 'Diabetes Soapbox - Have Your Say' started by urbanracer, May 31, 2021.

  1. zand

    zand Type 2 · Expert

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  2. Ktmpedro220

    Ktmpedro220 Type 1 · Active Member

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    Not sure if it's already been asked but is this just applicable to NHS England data?
     
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  3. Mr_Pot

    Mr_Pot Type 2 · Well-Known Member

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  4. Ktmpedro220

    Ktmpedro220 Type 1 · Active Member

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  5. jjraak

    jjraak Type 2 · Well-Known Member

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    Just to say i took note all that was said early on and emailed my GP to opt out, then became aware that i had to put it on paper and deliver it.

    With the delay i haven't bothered as yet.

    Today i get a message from GP saying they received my email and now
    "Your records have been updated with the relevant OPT OUT code, to OPT OUT from your date being shared"

    so email seems to work .

    thought to be fair, i felt my Surgery was very pro active on OPTING out.
     
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  6. Oldvatr

    Oldvatr Type 2 · Expert

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    Just rang my surgery, and the receptionist has no idea what I am talking about and thinks it must be the emergency database that is already set up and in use. This is the one A&E access in ER to get limited access to your data in the event of an incident. Apparently, this database cannot be opted out of, and all practices in the UK should be uploading your records on a regular basis. New patients signing onto NHS do have the option of opting out when they first use the practice,

    Apparently, this was started about 5 or 6 years ago and was a dry run for the new database, which will it seems to suck all this data up anyhow when it is merged. Pandora's box is already open.
     
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  7. Oldvatr

    Oldvatr Type 2 · Expert

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    Just had a response to my snottogram email. the GP. They returned with the following link to NHS Digital
    https://digital.nhs.uk/data-and-inf...ing-and-research/gp-privacy-notice#opting-out
     
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  8. jjraak

    jjraak Type 2 · Well-Known Member

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    mmhh hardly much clearer, at first glance.

    so..

    IF i don't allow, the NHS can NOT access my data if i fall ill and need treatment asap...:wideyed:
    hardly sounds right.

    and if i DO allow, then sharing with OTHER parties, is a given.

    AND if they need to see my data due to a NATIONAL emergency..:rolleyes:

    they can see ALL my data, and then KEEP it presumably, as in horse stable door

    all too poor to make real sense,

    so we all could die if we don't share.
    and once the tricksters in office deem a need, pandemic or overlords wanting something
    back for all 'help' they give them..looking at you US/palantir.

    then it's GAME OVER versus Privacy.

    Nope, i'm calling it deliberate BS and meant to confuse..obv only IMHO..
     
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  9. Oldvatr

    Oldvatr Type 2 · Expert

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    From what I gathered from my GP receptionist, the current data is already uploaded to the emergency database, and the Type 1 Optout only stops the data from being given out for nonmedical needs and research. This will move across to the Digital database from Sept 2021, and again the NHS can still access and use it like the current emergency database which they will merge into the new digital one. The National Optout stops that digital data from being given out to researchers etc in the same way a Type 1 Optout acts on emergency data. The difference will be that the new digital database may store more of your data from the last 10 years. So the NHS use is mandated for both and you cannot opt-out of either, but you can restrict its use by private researchers and marketers. That option can be lifted by your request at any time and can be re-instated later, but any data uploaded in between can not be blocked or removed in retrospect.
     
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  10. Oldvatr

    Oldvatr Type 2 · Expert

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    What I found concerning is that the database is pseudolised to prevent identification with you, but the software includes a back door that can allow the encryption to be undone at a later date. This is already embedded, and I saw a TV news item that the key to access this software has been offered for sale on the Dark Web. So already it is not secure from criminals.

    As regards the legal use to gain access rights, presumably the DVLA will have access, and local Councils may also have a right. Not sure about firearm checks, but that could be a given too, as will the local magistrates courts,
     
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  11. TriciaWs

    TriciaWs Type 2 (in remission!) · Well-Known Member

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    The issue with trying to anonymise this amount of data is that even without a backdoor/key it will be easy for some people to be identified.
    The Census team at ONS go to a lot of effort to anonymous our data, If you are in a rare group they will only publish at national level, if a very rare group you'd disappear from the data. They also have checks to try to make the data as accurate as they can. I've not seen any commitment to do either of these with the NHS database.

    EG, if I belonged to a minority religious group and I have a mix of health conditions that means I am the only individual in my region with these conditions and of this faith, even if they remove my name and exact location people could exact a lot of personal data about me.
    If you are an average person with a common disease you'd be fine - unless they have a data breach.
     
  12. bulkbiker

    bulkbiker Type 2 · Oracle

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    Has been recorded at least..

    Screenshot 2021-06-21 at 12.14.45.png
     
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  13. AndBreathe

    AndBreathe I reversed my Type 2 · Expert
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  14. bulkbiker

    bulkbiker Type 2 · Oracle

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    I think we should.. t-bones all round?
     
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  15. Mr_Pot

    Mr_Pot Type 2 · Well-Known Member

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    What exactly is everyone afraid of?
     
  16. Andydragon

    Andydragon Type 2 · Moderator
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    Data that can be deanonymised falling into the hands of companies like Facebook.

    but the data is mine to share, it’s private medical data that is used for me and me alone. I have no interest in it’s usage for commercial mining. That’s my reason.
     
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  17. Mr_Pot

    Mr_Pot Type 2 · Well-Known Member

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    Can you give an example of how it might actually be used though?
     
  18. Andydragon

    Andydragon Type 2 · Moderator
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    I don’t care how it might be used. If you want to share yours, go for it. But we all have a choice, my choice is no. Once it’s shared, that data is shared forever

    It’s mine and I don’t want it shared plus I have no faith that it will remain anonymous. It is clearly stated it can be reversed. Given how much hacking happens daily, it’s not hard to believe that’s not a risk. If it is purely for research, why can it be reversed?

    Again, it’s all about choices and the choice was made deliberately hard to know about. That doesn’t engender trust does it?
     
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  19. Mr_Pot

    Mr_Pot Type 2 · Well-Known Member

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    That doesn't really answer my question. I am not saying sharing data is a good idea but I was hoping to get some suggestions as to how the data might be used to my detriment. Everyone seems to talk about vague concepts of privacy without giving any examples.
     
  20. MrsA2

    MrsA2 Type 2 · Well-Known Member

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    While companies may just want the data for targeted advertising, research, to hone delivery areas etc (there are many legitimate uses) I am more concerned about data being hacked and used for blackmail, extortion or other criminal matters.

    Did you see the pictures today of a bedridden stroke victim being burgled? Bet all the burglars would like addresses of the bedridden, alone or frail
     
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