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NHS Data grab/GPDPR

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

  1. urbanracer

    urbanracer Type 1 · Expert
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    Haven't seen this anywhere else so thought it was worth posting here.

    Today's Guardian is carrying an article about a massive NHS data grab and our wonderful government have failed to rule out commercial use of said data.

    "The proposals suggest mass collection of every English patient’s history, including mental health episodes, their smoking and drinking habits, and diagnoses of diseases such as cancer. But it will also include dated instances of domestic violence, abortions, sexual histories and criminal offences. Given the proposed scope of such a database, it is reasonable to ask who will be given this data, and for what purpose."

    https://www.theguardian.com/comment...edical-records-nhs-data-grab-needs-explaining

    We have until June 23rd to opt out.
     
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  2. Andydragon

    Andydragon Type 2 · Moderator
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    I've seen this. It's scary stuff I have to say
    I have the forms ready to take to my doctor and have also done the online opt-out. Thanks for the reminder

    I have no trust this won't get misused by Companies and the fact it could be legally unanonymised and linked back to me... Not a chance!
     
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  3. Goonergal

    Goonergal Type 2 · Moderator
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    Thanks @urbanracer

    Have book marked the link to ensure I meet the deadline for opting out.
     
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  4. zand

    zand Type 2 · Expert

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    Another thing that bothers me is that the data passed on as 'ours' may not even be correct. I have had another persons records erroneously put with mine and told to me as mine. My friend had this recently happen to her too.

    The notes that I read online about my discussions with HCPs are often not how I would describe the appointment. For example, after a failed blood test where the HCP couldn't find a vein, despite me telling her where one was, is on my records as 'Rebooked appointment for this afternoon, advised patient to drink more water' Yes that was true, but not the whole truth. I had told her that I had already drunk 2 litres of water that morning, and showed her where my one ' good' vein was. The truth was that she wasn't competent to take my blood and passed the job onto someone who was. Yet on my patient record it looks like the silly patient was dehydrated.

    I have had this kind of thing where the HCPs try to make themselves look good and to make me look stupid/negligent happen several times, it wasn't just a one off.
     
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  5. Goonergal

    Goonergal Type 2 · Moderator
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    My surgery sent a text giving the process for this opt out. Have been able to submit it all to them online.
     
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  6. urbanracer

    urbanracer Type 1 · Expert
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    I looked online at my GP's website but couldn't see any mention of it. Dropped the forms into reception yesterday evening, receptionist didn't seem surprised but I'd like to know what percentage of the population are opting out.
     
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  7. Andydragon

    Andydragon Type 2 · Moderator
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    There are 2 separate opt outs. I have done an online one, am going to drop off the forms for the other imminently just to make sure.

    lots of news about this now, it’s in all the mainstream press
     
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  8. Goonergal

    Goonergal Type 2 · Moderator
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    Yes. Done both. My surgery facilitated the upload of the form so no need to print and drop it round :). Did the other (National) digital one too.
     
  9. Andydragon

    Andydragon Type 2 · Moderator
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    Nice!
    I think sone surgeries are wholesale refusing to give the data (tower hamlet?) as they don’t agree with this and can see sone very angry people in the future

    this data is not totally anonymous as by their own admittance can be linked back to the person if needed legally. Can you imagine a data breach of everyone’s private life long medical data…

    I know sone say if you have nothing to hide what’s the problem, but personal and private medical data… that’s worth hiding!

    Too many large scale data breaches for me to trust this data with commercial companies.
     
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  10. Hopeful34

    Hopeful34 Type 1 · Well-Known Member

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    I can see the positives in returning the forms, but are there any disadvantages?

    It talks about the 'implications'. Is that to try to persuade you not to do it, or to cover themselves?
     
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  11. Hopeful34

    Hopeful34 Type 1 · Well-Known Member

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    Update on BBC news website today:

    For some reason it won't allow me to copy the link, sorry. Basically saying the deadline for opting out is being delayed for 2 months.
     
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  12. Andydragon

    Andydragon Type 2 · Moderator
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  13. Hopeful34

    Hopeful34 Type 1 · Well-Known Member

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  14. bulkbiker

    bulkbiker Type 2 · Oracle

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    As of 01 September 2021NHS digital will take a copy of all your GP held medical data from the last 10 years and load it into a new database.
    Ostensibly to assist with planning and research.

    However once the data has been "scraped" it would seem you have no rights over what is done with it.

    Unusually if you don't want your data used in this way you have to opt-out rather than the usual opt -in to data sharing (why you have to agree to T&C when you sign up for something new online).

    Some may say its a "conspiracy theory" to imagine that a huge database of everybody's medical records could be very useful (and no doubt fairly profitable).

    There have been various exposures of other data that could be included such as mental health assessments, employment status and any criminal record. Once this is tied into your NHS number and NI number then virtually nothing you do will be untraceable.

    The BMA is cautiously welcoming..

    https://www.bma.org.uk/news-and-opinion/statement-on-gp-data-for-planning-and-research

    Others are more wary. The data is allegedly anonymised but still with "unique identifiers" which can be used to identify you.

    Screenshot 2021-06-12 at 12.36.38.png

    From here

    https://digital.nhs.uk/data-and-inf...neral-practice-data-for-planning-and-research

    So it's up to you.. an opt out is available but only until 23 June 2021.

    It's not just me being paranoid either....

    https://www.change.org/p/the-depart...ccess-without-informed-consent?redirect=false
     
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  15. urbanracer

    urbanracer Type 1 · Expert
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    Had time to read all the small print now. Even if you opt out they can still take your data in the event of an emergency, say something like a pandemic. :banghead::banghead::banghead::banghead:
     
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  16. Hopeful34

    Hopeful34 Type 1 · Well-Known Member

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    That's awful :banghead::banghead::banghead::banghead:
     
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  17. jjraak

    jjraak Type 2 · Well-Known Member

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    Not a conspiracy theorist but do believe MY private data IS my PRIVATE data.

    Now that's out of the way

    i imagined what this could lead to..

    I see it might help research, but wouldn't that data still be available,?

    so it's for profit, for some companies, (cant see this being FREE to those who ask for it.)

    So WHY would they PAY & want it...mmhh.

    Top of my list is insurers.

    While for me that relates to travel, driving, pretty sure there will be others.

    so, for travel i declare two issues.
    T2D and asthma...No issue with that.

    help if i needed it could cost more, so i pay more, seems right.

    however, some may simply aggregate ALL my health data and deem me an ever higher risk.

    Thinking on that now... i don't believe or agree, anyone on here is the A Typical Type 2 diabetic that doctors and stats seem to refer to constantly.:rolleyes:

    yet we all are lumped in with the same who won't or can't action to amend their lifestyle, and follow the progressive line we all hear about.


    Now those paying won't be wanting less cash for there products, will they..?
    so higher prices for some, would seem a good possibility.

    what else might that mean ?

    NOW or at any point, some new links, MAY however tenuously linked to your date, could either see your premiums rise..(likely)
    or might even mean you can no longer get cover, despite the fact without such data you could and most likely pay far less..
    and be just as safe.

    so travel. More expensive., IF you can get such cover
    and driving more expensive, IF you can even get cover.

    bottom line ?.

    once IN you can NOT opt out.

    Opt out you CAN opt in.

    anyone who thinks companies are paying for such data is so they can charge us all less....


    :hilarious::hilarious::hilarious::hilarious:
     
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  18. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    I naively think that by having filled in the form to opt out, my data cannot be sold on. What else can I do? What I don't like is how something so important has been arranged at speed in a totally underhand way.
     
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  19. bulkbiker

    bulkbiker Type 2 · Oracle

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    I've opted out online and have the form waiting to be delivered when I go for my next blood test next week.. I guess the more people who opt out the better?

    Apart from that.. like so many other areas of our "new life" we seem fairly powerless.
     
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  20. MrsA2

    MrsA2 Type 2 · Well-Known Member

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    I think they've extended the opt out time for another 2 months.
    I can't find the form. Is it a National one?
     
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