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General Chat Thread, Have you heard about care.data? in General; ...
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    Have you heard about care.data?

    An article in PC Pro magazine brought this to my attention. Details are in the link below, created by a GP. As I read it, all of our medical data is just about to be harvested up by an organisation (HSCIC) purely so this data can be sold to other organisations. This data will be transferred from GP practices and hospitals and will be updated monthly.

    They say that the data is anonymised, but not that much by the looks of it Ė much can be tracked back to individuals without too much bother. This data could quite easily be obtained by insurance companies, mortgage providers, etc with quite worrying consequences and thatís probably just the tip of the iceberg.

    Please do make your own minds up. For lots more info, visit: care.data - the brief version

    You can opt out, but it needs to be done quite quickly. The process is due to start in Autumn and once data has been sent to HSCIC, you cannot ask them to remove it, just can just opt out of the monthly update process. I know Iím going to opt-opt out ASAP and write to my MP too.

    Meldrew

  2. 6 Thanks to Meldrew:

    AMLightfoot (19th August 2014), CAM (19th August 2014), HarryMonkey (20th August 2014), LosOjos (20th August 2014), plexer (19th August 2014), visioN (19th August 2014)

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    If they hadn't opened it up to third party organisations this could have been fantastic for medical researchers....le sigh

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    CAM
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    Cheers, printed mine and dropping it off later today.

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    I would recommend you think twice about this, it could affect your care if you was admitted to hospital in an emergency situation and you were unable to provide any history of illness or medication you were on.

    Information is anonomised and the your name and address doesn't go with it, its all on your NHS number, also worth checking out the SCR website.

    If you want to still opt out I suggest you speak to your practice manager at your local practice or if you are still unhappy speak to your local CCG.

    Those of you who don't see a GP very often will have a very empty record and will benefit those with complex and ongoing issues.

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    If you read the care.data - the brief version website it mentions this -

    Medical staff treating you in GP surgeries, hospitals, A&E, pharmacies, NHS 111 call centres and GP out-of-hours centres will not use, or be able to use, this database.
    Now if that is correct then opting out will not affect your normal treatment

    I'm going to opt-out mainly because I just don't like the way they do these things - make it opt-in would be fine.
    Last edited by siuko; 19th August 2014 at 12:41 PM.

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    Yep, this is nothing to do with general day to day data sharing between hospitals, GPs, etc. The opt-out form for example states that this will not affect your medical care in any way.

    Quote from the form:
    "This programme is called care.data, and the information uploaded will be used for purposes other than your direct medical care (so-called “secondary uses”).
    Medical staff treating you in GP surgeries, hospitals, A&E and out-of-hours centres will not use, or be able to use, this database. However, the uploaded data is likely to be made available to organisations outside of the NHS, such as universities and commercial organisations."

    Also:

    ""This is not the Summary Care Record. The two databases are very different. Opting out of one database does not mean that you have automatically opted out of the other."
    Last edited by Meldrew; 19th August 2014 at 01:19 PM.

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    The cynic in me thinks it doesn't really matter if you opt-out. It'll still happen, you'll just find out about it from another wikileaks reveal or something.

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    Quote Originally Posted by Meldrew View Post
    An article in PC Pro magazine brought this to my attention. Details are in the link below, created by a GP. As I read it, all of our medical data is just about to be harvested up by an organisation (HSCIC) purely so this data can be sold to other organisations. This data will be transferred from GP practices and hospitals and will be updated monthly.

    They say that the data is anonymised, but not that much by the looks of it – much can be tracked back to individuals without too much bother. This data could quite easily be obtained by insurance companies, mortgage providers, etc with quite worrying consequences and that’s probably just the tip of the iceberg.

    Please do make your own minds up. For lots more info, visit: care.data - the brief version

    You can opt out, but it needs to be done quite quickly. The process is due to start in Autumn and once data has been sent to HSCIC, you cannot ask them to remove it, just can just opt out of the monthly update process. I know I’m going to opt-opt out ASAP and write to my MP too.

    Meldrew
    I knew about the Summary Care record but not this! I'm appalled. Thanks for the heads up.

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    CAM
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    Phoned my GP yesterday and got the whole family opted out. They didn't know it by the care.data name but did recognised HSCIC.

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    Anyone got a reliable link to how it is regards Wales, I know it mentions England alone? I cannot see anything mentioned on there and google seems to be keeping in the dark about it.

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    Why can you never have it removed? Doesn't that breach DPA, or have they written a specific exception for these clowns?

    Will opt the family out now though, cheers for the heads up.

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    Quote Originally Posted by sonofsanta View Post
    Why can you never have it removed? Doesn't that breach DPA, or have they written a specific exception for these clowns?

    Will opt the family out now though, cheers for the heads up.
    Reading the info, it seems the data has been classified as not applicable to DPA as its has been anonymsed, except its not been done very well so can be linked back to individuals. Sounds thoroughly dodgy to me.

    Meldrew

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    Quote Originally Posted by CAM View Post
    Phoned my GP yesterday and got the whole family opted out. They didn't know it by the care.data name but did recognised HSCIC.
    I think this is something you have to do in person as they need to verify that it is you asking to be opted out.

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    Quote Originally Posted by Meldrew View Post
    You can opt out, but it needs to be done quite quickly.
    If you opted-out earlier this year, do you need to do it again?

    I opted out after reading this thread...

    www.edugeek.net/forums/general-chat/130959-your-medical-secrets.html
    Last edited by Arthur; 20th August 2014 at 01:02 PM.

  16. #15

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    Whole family opted-out over the phone! Done.

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