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

NewBoy2NewBoy2 BristolPosts: 1,763
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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  • Pauline 7Pauline 7 West Yorkshire Posts: 2,010
    I have opted out too.
  • SkandiSkandi Northern DenmarkPosts: 1,173
    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.

  • pansyfacepansyface PEAK DISTRICT DerbyshirePosts: 18,573
    I must admit I’m more than a bit confused by all of this, not least because I am a complete numskull when it comes to anything online.

    My OH and I joined a research Group called UK Biobank some years ago. It’s a project that aims to follow a large group of people over time to see how the state of their health progresses. When we joined, they took a lot of our personal information, in order to have a base point to work from. Over the years, they have called on us to participate in certain extra activities. So they, of you like, already have our data and are using it to ....?  as you say NewBoy2. 

    I am also a participant in a website called Patient Access. It does many things, but part of it gives people with a particular ailment a place to ask other people with the same ailment what their experience is/has been. No doctors involved, just personal experience and advice.  So there is another place where my personal data has no doubt been collected and might be used to....?

    We leak information every day, like a sieve, every time we look at Google, buy clothes, food, drink, or something else online.

    Yes, in theory, I don’t like the idea of Big Brother gathering data about me, but sadly I think he already has quite a lot of it.
    Apophthegm -  a big word for a small thought.
  • Hostafan1Hostafan1 Posts: 28,515
    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 South LondonPosts: 2,120
    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: 272
    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: 28,515
    I'd not trust bojo to run me a cold bath successfully . 
    Devon.
  • steephillsteephill Posts: 1,962
    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.

  • delskidelski Posts: 272
    The scheme appears to have been delayed from 1 July 2021 to September 2021

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