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Data disclosure by the NHS.....Sincere apologies as Non Gardening.

NewBoy2NewBoy2 Posts: 1,813
in Problem solving
I have held back fr a long time before posting this.

My surgery has been urging me to allow the NHS to " upload " my Doctors notes and my lifetime medical records so it will be available for "other parties " to use to..........then I stopped listening as i didnt believe a word.

I have opted out with the surgery.

This subject is one that should in my humble opinion be openly discussed.

Thats all.....and apologies for misuse of GW .............enjoy the sunshine.


Everyone is just trying to be Happy.....So lets help Them.
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Posts

  • Pauline 7Pauline 7 Posts: 2,246
    I have opted out too.
    West Yorkshire
  • SkandiSkandi Posts: 1,723
    Here it's so far the other way, I had surgery done at a private clinic because the state service had to long a wait time, and I therefore received a offer of private care at no cost to myself. so they had to get me to tell them that they could look at my record. If you go to the emergency dr they have to have permission to look at your record.
    I personally believe that any Dr, nurse, surgeon employed by the state health care and any private Dr, nurse, Surgeon that is directly involved with you should automatically have access to your data.  I don't believe anyone who is not directly involved in your care should have access to non anonymised data.
    However I also think that research companies/universities should be able to use anonymised data about the entire population. It's a lot easier to see correlations and possible causation when you have access to a larger sample size, it would also reduce bias as everyone would be included not just those who have had issues and therefore signed up.

  • Hostafan1Hostafan1 Posts: 34,889
    I heard about it on Channel 4 news last week. 
    Why won't bojo tell us WHICH other parties will have the information?
    Devon.
  • amancalledgeorgeamancalledgeorge Posts: 2,736
    Data sales seems to be a new industry for the UK post Brexshit. And unfortunately with Dido Harding getting nearer to being appointed in an NHS role...and knowing her connections to data breaches in the past and of course her cosy relationship with Hancock have very little expectation they will not find a way for this data grab come September. There was a video circulating the other day with her and a guy from Cambridge Analytica, that well known data miner that helped the current government to power via electoral fraud. Add to that the connection to Peter Thiel and FB and his own private health interests, the whole situation is horrible and paves the way for more abuses of private information sold to the highest bidder. 
    To Plant a Garden is to Believe in Tomorrow
  • delskidelski Posts: 274
    NewBoy2 said:
    Thats all.....and apologies for misuse of GW .............enjoy the sunshine.
    Really not necessary to apologise. In my "limited" experience of this forum, the non-gardening threads unfortunately (and disappointingly) get the most responses. I understand you treading cautiously though. Don't wanna step on certain members' toes.
  • Hostafan1Hostafan1 Posts: 34,889
    I'd not trust bojo to run me a cold bath successfully . 
    Devon.
  • steephillsteephill Posts: 2,841
    If the data was to be properly anonymised and limited to NHS and public sector research labs I would be happy to share my data. However the plan is to only pseudonomise the data and share it with unspecified "other parties" so I have opted out. Pseudonomising means that it is relatively simple to identify any individual from the data.
    It is fundamentally a matter of trust and I do not trust our government or the companies seeking access to this most sensitive of data. My mistrust is only made worse by their attempt to push this change through on the quiet at a time when there are much more pressing issues to deal with. Add in the appalling track record of large organisations inability to maintain data security and trust sinks further.

  • Hostafan1Hostafan1 Posts: 34,889
    https://speakout.38degrees.org.uk/campaigns/foi-petition?bucket=email-blast-15_6_2021_democracy_foi_clearing_house_kick_seg&utm_campaign=15_6_2021_democracy_foi_clearing_house_kick_seg&utm_medium=blast&utm_source=email
    Devon.
  • delskidelski Posts: 274
    The scheme appears to have been delayed from 1 July 2021 to September 2021

  • pippippippip Posts: 31
    edited June 2021
    @pansyface

    If you want to opt out - https://medconfidential.org/how-to-opt-out/ - explains it nice and simply and has links to the forms you need to fill out.

    1. there’s a form to fill out that you hand into your GP surgery

    2. you also need to opt out online

    There’s a different process / form if you want to opt out under 13 yr olds or if you have an adult dependant for whom you have legal responsibility.

    The deadline to get your form to your GP practice is (a week before) 1st September (was 23 June 2021), extended to September - after this date, if you change your mind and want to opt in you can do so.


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