back to article Top Brit docs wade into GP data grab row, demand 'urgent' NHS England talks

Pressure is mounting on NHS England to stall its incoming data grab of GP-stored medical records, after another health body said that the government needed to improve public awareness of the controversial scheme. A stronger campaign was demanded from top doctors at the British Medical Association on Monday. The care.data plan …

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  1. Anonymous Coward
    Anonymous Coward

    My wife (NHS nurse) and I (NHS IT tech) received ours a while ago, looked at each other and ticked Opt out after a second or so's consideration, then returned it.

    Question is, who do you contact to confirm your Opted status?

    1. Z-Eden

      I believe you're supposed to submit the form to your GP. At least, that's what I did.

    2. Gavin Jamie

      Are you sure what you opted out of?

      There was a mailshot about the Summary Care Record which would have taken place over the last two years or so. This came with an opt-out form and was reply paid. From what I remember it was purple. This is the record that could be accessed for your health care e.g. in an A&E department or emergency GP service at the weekends or evenings.

      Care.Data is completely separate. It will not be available to people treating you. Leaflets only came out in the second half of January this year and did not feature an opt out form (there are several good suggestions for forms around here). However opting out of the SCR will not have any effect on this extraction. This needs to be done separately.

      Be sure which one you have opted out of.

    3. This post has been deleted by its author

    4. Anonymous Coward
      Anonymous Coward

      I doubt that you ticked opt out

      If only because the leaflet they so helpfully sent through the junk mail didn't have anywhere you could actually do that. As others have said, you may be thinking about the Summary Care Record, which is another thing entirely, and for which they did provide an opt-out form.

      The best place to go I've found is www.care-data.info which gives quite a bit more info, as well as links to opt-out forms you can send to your GP.

      1. Tom Chiverton 1

        Re: I doubt that you ticked opt out

        Although https://www.faxyourgp.com/ makes it even easier.

    5. Yet Another Anonymous coward Silver badge

      >.Question is, who do you contact to confirm your Opted status?

      The address is clearly stated in the bottom of a locked filing cabinet, in a disused lavatory, in a basement, marked beware of the leopard...

    6. Will 30

      You must be thinking about something else - there was no box to tick nor form to return on the flyer which has been sent recently.

    7. Vimes

      I'm still waiting to be told about this, despite going to see the consultant and doctor on a fairly regular basis.

      Now they claim they're going to wait 6 months so they can communicate the advantages more effectively (note the convenient lack of any mention of the disadvantages nor any attempt at fixing the holes - it's difficult to see how this whole mess could ever be in our best interests).

      More effective communication? Don't make me laugh - so far in my case there has been zero communication (effective or otherwise).

  2. Z-Eden

    I've managed to put in an opt-out form using the advice given from the excellent Light Blue Touchpaper blog. Here's the article with an opt-out form download:

    http://www.lightbluetouchpaper.org/2014/01/08/opting-out-of-the-latest-nhs-data-grab/

  3. James Boag

    Good job well done !

    What do you mean bad job, As far as i can see the Government scum have played a blinder with this one, No one know, no one redacts their info, Tories sell your data to their mates in the insurance biz Sorted.

    Glad i live in Scotland :)

  4. Anonymous Coward
    Anonymous Coward

    Eddys in the Space-Time Continuum

    I have to go to the Doctor's again before March and certainly intend to deliver my opt-out letter; so assuming that I do, I still think if this goes ahead 'on schedule' (won't that make a change!), the Government should be prosecuted over it.

    Guess it's a long time since I read 'The Hitchhiker's Guide' because that comparison is so apropos I'm slightly ashamed it didn't occur to me!

  5. Steve Renouf
    FAIL

    The Biggest Fail is the usual one...

    It should be OPT-IN! by default!

    1. Captain Hogwash Silver badge

      Re: The Biggest Fail is the usual one...

      You say fail but they knew exactly what they were doing - see post from James Boag

      above.

  6. Graham Marsden
    Big Brother

    See this website for details of what's happening and how to opt out...

    http://www.care-data.info/

    I've also written to my MP asking him and his colleagues to get this whole nonsense put on hold until we get a proper say in what happens to our private data!

    http://www.theyworkforyou.com

    1. Kane Silver badge
      Thumb Up

      Re: See this website for details of what's happening and how to opt out...

      My GP's surgery had a stack of leaflets made up from the details supplied on www.care-data.info, which the nice lady at reception had to resupply because everyone in front of me had taken a copy. These had the "fill in details" section on them already there to be filled in, very handy.

      Just thought I would share.

  7. Anonymous Coward
    Anonymous Coward

    What's the SOP for children born after this database has gone live?

    1. Winkypop Silver badge
      Big Brother

      Relax

      Their implanted RFID chips will be scanned as they leave the hospital...

  8. Tom Chiverton 1

    Don't forget to pop in to Manchester next week for a talk on this very topic !

    http://www.meetup.com/ORG-Manchester/events/164318842/

    Phil Booth from http://medconfidential.org will be on hand to answer all your questions, along with someone from the ICO.

  9. David Roberts Silver badge

    Presumably if you are away (gap year) or moved areas or abroad and haven't told your old surgery then your records will be slurped?

    I do hope that records at the old surgery when you have moved to a new surgery will be marked as such and not extracted

  10. The BigYin

    I just opted out

    No way I am letting the government sell my deeply private information for a quick profit.

    More info here: http://optout.care-data.info/

  11. Livinglegend
    FAIL

    Lock, stable, horse, bolted

    ... in any order, if 'ministers have said that they will learn from the mistakes of the care.data pamphlet drop' .is anything to go by.

  12. IDoNotThinkSo

    No leaflet here

    I have definitely not received any leaflet in the post, combined with junk mail or not. Nor has anyone else I know in the local area.

    1. Fihart

      Re: No leaflet here

      ditto

  13. Jason Bloomberg Silver badge

    OPT OUT

    The best option I can see is to opt out and I would advise everyone to do the same.

    Any worry that this may be the wrong option can be set aside by noting that we will be given (or can demand) a right to opt-in later. I cannot see any government saying they will leave those who did not initially sign-up for what they say is good for us languishing in that plight. That would be electoral suicide.

    They can have our opt-ins when they have convinced us it is good for us.

  14. Warm Braw Silver badge

    Article 8, ECHR

    Under article 8 of the ECHR, we're supposed to have a right to privacy. Indeed this seems to be the main reason the Snowden revelations have caused so much blustering amongst politicians - they're not really worried about terrorists knowing they're under surveillance, they're worried that knowledge of "lawful" activities that are in fact likely contrary to Article 8 will result in a direct legal challenge that could probably succeed.

    I'm pretty sure we have an Article 8 right not to have our poorly-anonymised medical records passed to the NSA and sold to Big Pharma and the insurance industry, but because of what we now know, we can be pretty sure that attaching an opt-out label to the data will simply call it out for special attention. It certainly won't have any other effect.

    Nevertheless, I'd encourage everyone to at least go through the motions of opting out - at least it's then explicit that we're not quite so fond of constant surveillance as the spooks building their FacelessBook seem to imagine.

    Unfortunately, I suspect more people would be enraged at the thought of foreigners underwriting our human rights than that of sharing the details of their treatment for erectile dysfunction.

    1. Anonymous Coward
      Anonymous Coward

      Re: Article 8, ECHR

      If you read the privacy impact assessment here:

      http://medconfidential.org/wp-content/uploads/2014/02/2014-01-27-PIA-care-data.pdf

      you'll also see that on page 13 it says you have a right to object to your data being processed under section 10 of the Data Protection Act (DPA). The opt-out being offered by care.data (which is what you'll get if you inform your GP using the forms being discussed - and operates by placing special codes in your GP data) isn't the same thing. It is being offered as an opt-out but will in fact still allow some use to be made of your private data. As such it is a con.

      Everyone should actually be insisting on the full opt-out which is their right under the DPA.

  15. Dr Dre

    NHS blocking the NHS

    Trying to access the link to the care.data website in your article, from a PC on my desk on the NHS network brings up a series of dire warnings...

    Warning: Questionable Internet use policy

    UsrViewBlocked_warn

    Reason: Downloads site

    Site: https://dl.dropboxuserco...156524/caredata/index.htm

    The organisation’s Internet access and usage policy suggests you should not be visiting this website. Transferring data to an external website may infringe the internet usage policy. Please think very carefully before proceeding. If in doubt, please contact a member of the Information Governance Team or refer to the specific policies on the intranet.

    So - I'm not going to be able to opt-out from work - and neither are a million other people.

    1. Tom Wood

      Re: NHS blocking the NHS

      The care-data.info website is an unofficial website and is nothing to do with the NHS. It was written by a GP in Hampshire. The opt-out form he provides is an example only. You can opt opt by writing to your GP.

      1. JetSetJim Silver badge

        Re: NHS blocking the NHS

        Or try https://faxyourgp.com/ - this site, linked to from the one blocked, will fax them your opt-out.

  16. Turtle

    Approved.

    "Amber data are only made available under a legal contract to approved analysts for approved purposes."

    So, provided they're willing to pay, the data is pretty much available to anyone for any purpose.

    1. Juillen 1

      Re: Approved.

      No, it's not. Approved purposes are medical research. And the data is pseudonymised (i.e. if you're not inside the NHS, which has this data anyway in this form, it's not readily identifiable).

      Insurance companies and profit makers get Green data, which is pre-aggregated.

      1. Credas Silver badge
        FAIL

        Re: Approved.

        No, it's not. Approved purposes are medical research. And the data is pseudonymised (i.e. if you're not inside the NHS, which has this data anyway in this form, it's not readily identifiable).

        Insurance companies and profit makers get Green data, which is pre-aggregated.

        You're sure about that, are you? Is that what the law restricts them to, or is that just what their policy is this week? Clue: it's the latter.

        1. Anonymous Coward
          Anonymous Coward

          Re: Approved.

          and much play being made of how it's han criminal hoffence to reidentify the data. can't see that stopping the police or big pharma or the Murdoch rags.

          1. Anonymous Coward
            Anonymous Coward

            The problem with pseudonymised/anonymised medical data

            is that it will still be able to identify you better than your name.

      2. Anonymous Coward
        Anonymous Coward

        Re: Approved.

        "it's not readily identifiable" - +1 for weasel wording.

        as for the data only being visible to those "inside the NHS" - no thanks. what happens at the GP stays at the GP, it doesn't get strewn around 300,000 employees of the NHS. and what, pray, /is/ the NHS these days? virgin? crapita?

        6 month delay is good news, but will be used for propaganda of the anonymised type which the beeb are faithfully regurgitating. NHS number, anyone?

  17. Shonko Kid
    Holmes

    " were tucked in with junkmail "

    It's almost as if they didn't want you to opt out.

    Perhaps they should put the forms in a locked filing cabinet, in the disused basement, with the 'beware of the leopard' sign....?

    1. Anonymous Coward
      Anonymous Coward

      Re: " were tucked in with junkmail "

      Yes, the opt-out (instead of opt-in), the lack of information and the absence of an official opt-out form clearly weren't an oversight, or even the usual gross incompetence. They were calculated and deliberate. This is data rape, pure and simple.

  18. ragnar
    Thumb Up

    Thanks El Reg, I wouldn't have had a clue otherwise. We've certainly never received the flyer!

  19. John Lilburne Silver badge

    Screw them. I don't recall having been sent anything. I certainly won't have read it if it was sent. It's been years since I've been to the quack. I'm certainly not downloading a form to fill in and post elsewhere, certainly not the doctors surgery as whilst I know where it is I don't the address.

    Best solution is to print-screen the form add a tick in whatever they are calling the 'fuck off' box these days, and emailing it as an attachment to whomever is the current political gobshite that is in charge of the NHS. Let that arsehole deal with it.

  20. MR J

    Never Received

    I had been expecting this so kept waiting, It has not come through my post box. I asked and no one on my street has had it. Granted, due to cuts in the postal service last year we only get a postman about twice a week now and it is rarely the same person, so my guess is that these "inserts" are still sitting at the post office.

    Last year I got a letter that was 13 months old, they had found hundreds of bags of stolen mail but were afraid to tell people about it, so the majority of it is STILL sitting in my local postal depot!.

    They should OPT everyone OUT, and then send out the leaflets to let people Opt IN...

  21. SeanEllis
    Black Helicopters

    Submitted an opt-out to my GP yesterday

    Using the form downloadable on the right of this page: http://medconfidential.org/how-to-opt-out/

  22. Zog_but_not_the_first Silver badge
    WTF?

    Milking the sheep

    Maybe the Gov regard NHS patients like Facebook members. "If you're not paying for the product, you are the product". Except we are. And we're not.

  23. Tom 38 Silver badge

    the pamphlets that were sent out to 26.5 million households in England in January were tucked in with junkmail such as pizza menus and gym membership flyers.

    I think it says something about the area I'm living in that I only get fast food menus and no gym membership flyers.

    1. Yet Another Anonymous coward Silver badge

      Perhaps once they access to your medical data they will be better able to tune their advertising?

      Then they will know from your svelt physique and low cholesterol to only send you gym membership and no pizza menus

      1. Tom 38 Silver badge

        No, they'd send me more pizza menus, plus vouchers for an extra large doner pizza with extra cheese and jalapenos :/

  24. phil dude
    Coat

    yes minister....

    was like a training video...

    P.

  25. Oldfogey
    Stop

    (Temporary) Win!

    Just been announced that the programme will be delayed 6 months.

    "Will not be changed in any way, this is a chance to explain it better"

    So still opt out, but more time to get friends and relatives to do so.

  26. JassMan Silver badge

    The worst thing

    is that the politicians are still lying about this data and saying we don't need to worry becuase it is stored in an anonymous database. LIE! It is on partially anonymised when your data is sold on.

  27. Will 28

    There are rumours that you're not fully opting out anyway

    According to the following: http://medconfidential.org/how-to-opt-out/ , opting out just removes some more information from what they send, it doesn't stop them sending it.

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