NHS AND SHARING INFORMATION — Scope | Disability forum


charlie79 Member Posts: 207 Pioneering
I have read you have to obtain a form an sign it by the 23rd June 2021. If not from the 1st of july all your information and data can be shared with 3rd parties. Is there a link for this form


  • mikehughescq
    mikehughescq Member Posts: 8,233 Disability Gamechanger
    There are two separate opt outs you need to complete.

    “ To fully opt-out from having your NHS data used for purposes beyond your direct care is a two-step process:

    1) If you have concerns and want to stop your and your family’s GP data being taken from your GP practice for purposes other than your direct care, you can do so by filling in and giving this ‘Type 1’ form to your GP practice. (This form allows you to include details for your children and dependants as well). This is the most urgent step; the deadline to get your form to your GP is 23 June 2021, according to NHS Digital.

    2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (for example, for “research and planning”) you should also do the following:

    ·         If you are opting-out just for yourself, use NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over.

    ·         If you have children under 13, you need to fill in this form and email or post it to NHS Digital – this form works for both you and your children.”

  • woodbine
    woodbine Community Co-Production Group Posts: 6,053 Disability Gamechanger
    I'm not sure why I would want to stop this ?
    Be kind to newer members
  • mikehughescq
    mikehughescq Member Posts: 8,233 Disability Gamechanger
    Because your GP is a private company that, unless you stop it, will literally have the right to sell any aspect of your entire health history and demographic information to other private companies. Whilst some of that can be research it needs to be borne in mind that as of now they can literally sell it to anyone regardless of whether they are in medical research or not. 

    So, a company outside of the UK whose business is illegally harvesting organs? Yes, no problem.

    A company like Google who can take your allegedly anonymised data and cross match it to what they already have on you to do all sorts of intrusive stuff. Yes, no problem.

    A data harvesting company who then sells to the highest bidder. Yes, no problem. 

    Why would you not want to stop that before it even gets off the ground.
  • calcotti
    calcotti Member Posts: 3,765 Disability Gamechanger
    Because your GP is a private company 
    ..and moreover some are now owned by larger groups where ultimate ownership is outside the UK.

    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • fluffycat
    fluffycat Member Posts: 215 Pioneering
    If it were totally anonymised (with no back-door cross reference) more would be happy.

    It should be opt-in like with data sharing (though some still have opt-out or mix of two) 

    Even the local surgery is confused (1) mentioned form 1 (by 23/6)  then added later (2) National opt-out 
  • mikehughescq
    mikehughescq Member Posts: 8,233 Disability Gamechanger
    Glad to see that implementation has once again been delayed two months. Important to note however that, at present, the date for refusing both consents remains unchanged and is still the 23rd of June. 

    Sadly @fluffycat it’s near impossible to have anonymised data which can’t be cross-referenced. However, it’s as big a problem that they simply won’t be transparent agd talk about what data and to whom. 
  • MarkM88
    MarkM88 Member Posts: 2,288 Pioneering
    I was in my GP surgery yesterday and heard a man come in asking for a form to opt out. 

    I laughed because the receptionist said she had no idea what he was talking about but my surgery have it plastered all over their homepage of their website. 
  • mikehughescq
    mikehughescq Member Posts: 8,233 Disability Gamechanger
    Sounds about right. Just walking down to mine to deliver our forms.
  • MarkM88
    MarkM88 Member Posts: 2,288 Pioneering
    Yeah I’ve got mine to hand in too. 
  • LadyL
    LadyL Member Posts: 46 Connected

    I was a bit worried when I saw this thread as I had no idea about being given the choice of opting out and why some may wish to. :neutral: Anyway, the following information may or not help put peoples' minds at rest:

    "The NHS collects confidential patient information from:

    • all NHS organisations, trusts and local authorities (including GP surgeries)
    • private organisations, such as private hospitals providing NHS funded care

    Research bodies and organisations can request access to this information. This includes:

    • university researchers
    • hospital researchers
    • medical royal colleges
    • pharmaceutical companies researching new treatments

    Who cannot use confidential patient information

    Access to confidential patient information will not be given for:

    • marketing purposes
    • insurance purposes

    (unless you request this)

    How confidential patient information is protected

    Your confidential patient information is looked after in accordance with good practice and the law.

    Every organisation that provides health and care services will take every step to:

    • keep data secure
    • use data that cannot identify you whenever possible
    • use data to benefit health and care
    • not use data for marketing or insurance purposes (unless you request this)
    • make it clear why and how data is being used

    All NHS organisations must provide information on the type of data they collect and how it’s used. Data release registers are published by NHS Digital and Public Health England, showing records of the data they have shared with other organisations."

    Source: https://www.nhs.uk/your-nhs-data-matters/where-confidential-patient-information-is-used/

  • muuranker
    muuranker Member Posts: 16 Connected
    The date for sending in the forms has been put back.  The RNIB is trying to get accessible ways to complete the forms (for those of us who can't see / can't use pens).

    The concerns are set out here https://www.theguardian.com/society/2021/jun/06/the-nhs-data-grab-why-we-should-be-concerned-about-plans-for-gps-records and concerns of David Davis (a Conservative MP) https://yorkshirebylines.co.uk/yorkshire-mp-david-davis-opposes-government-plans-for-nhs-data-grab/