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You Must Opt Out Now If You Dont Want Your NHS Medical Records Sharing

Discussion in 'Other Health News and Research' started by golden, Feb 14, 2014.

  1. golden

    golden Senior Member

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    http://www.telegraph.co.uk/health/nhs/10584402/Dont-mislead-us-about-our-NHS-medical-records.html

    You must write to opt out of this scheme if you do not wish to be part of this.

    Data is NOT anonymous . The 'information ' leaflet was highly manipulative and distorted facts.

    " These details will include NHS number, date of birth, postcode, gender and ethnicity, and a variety of medical information such as referrals to specialists, family history, screening tests and alcohol habits. Some data considered sensitive, such as sexually transmitted diseases or abortions, will be exempt – though why these should be considered any more private than other conditions is not clear – and the exceptions will be reviewed at some future date. Furthermore, this data will be kept indefinitely and periodically topped up.

    At first, the Government had intended the programme to be compulsory: I had not appreciated that NHS medical records are the property of the Health Secretary, who, theoretically, can do what he likes with them. (Incidentally, why can’t we just keep our own records on a smart card and carry them around to be updated when we have treatment?) However, given the sensitivity of the reform, people will be allowed to opt out – ministers, though, are anxious to limit the numbers of those who do.

    While the leaflet does advise that we can tell our GP if we do not wish to have our records extracted, this is not prominently advertised, in the clear hope that many people won’t bother and will be enrolled by default. Wouldn’t it have been better to include an opt-out form with the leaflet to send on to our doctor if we chose to? In any case, as reported today, this whole exercise may be in breach of EU data protection regulations, and won’t be allowed to proceed. "

    Best
    Golden
    Last edited: Feb 14, 2014
    Esther12 and Sasha like this.
  2. golden

    golden Senior Member

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    I am searching for a template to opt out. Will create one if necessary.

    This states that opting out isn't opting out either!

    Medical Data will still be sent - but without nhs number, date of birth etc.

    http://medconfidential.org/how-to-opt-out/

    " GP magazine Pulse reported on 7/2/14, “Patients who have opted out of the scheme will still have their records sent to the HSCIC stripped of identifiers” (see 4th paragraph from bottom of this article

    ). This confirms something buried on page 9 of NHS England’s recently-published care.data Privacy Impact Assessment
    [PDF](UPDATE 12/2/14: there appeares to be a problem with the official link to the PIA, so here is a copy
    ), which states:

    Where patients have objected to the flow of their personal confidential data from the general practice record, the HSCIC will receive clinical data without any identifiers attached (i.e. anonymised data).

    i.e. the intention is to still to extract information from the medical records of people who had opted out, just not with their NHS number, postcode, date of birth and gender attached."
    Esther12 likes this.
  3. golden

    golden Senior Member

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  4. maryb

    maryb iherb code TAK122

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    @golden
    thanks for the template - my lovely son gave me some template forms last year which hubby and myself filled in and gave to the surgery. He never got round to doing one himself (typical) so I'll download one of these for him. Very important to do this.
    golden likes this.
  5. Sasha

    Sasha Fine, thank you

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    I phoned my surgery to opt out and they're sending me their own opt-out form to fill in.

    Disgraceful, this. I like in a flat and we received only one leaflet, hidden among all the pizza ads, through our streetdoor for all four flats here. If a friend hadn't told me to watch out for it, I'd have slung it straight in the bin with all the other junk mail. As it was, I had to photocopy it for all my neighbours. A lot of people won't even have received the leaflet.
  6. Esther12

    Esther12 Senior Member

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    Ta. Already opted out.
    golden likes this.
  7. Tito

    Tito Senior Member

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    Anonymous, he?
    With a postcode, date of birth and gender, it does not take a genius to check the electoral register to get someone's name... There must be say 150 persons per postcode, that is, 75 men and 75 women. It would be really unlikely to have two persons with the same birthday date...
    They really take us for a bunch of idiots.

    Folks, remember, "if you're not the client, then you are the product"

    Edit: Worse than I thought. I had a look at the data of the 2011 census, most postcodes had less than 100 residents, some less than 20.
    Last edited: Feb 14, 2014
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  8. golden

    golden Senior Member

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    yes. Mine came amongst pizza leaflets and junk. I nearly threw it out. I was appalled by the misinformation .

    It might be worth closely checking the form the NHS sends you as there maybe a catch to it.

    I am going to photocopy the opt out form to give to my neighbours - so at least they have a choice.

    I see in this article that four G.P.s feel so strongly against this, they have automatically opted out their thousands of patients and the handful of patients who want in, they have included manually in the scheme. They may be sacked for this:

    http://www.dailymail.co.uk/news/art...hes-logged-start-2011.html?ico=home^headlines

    With all the lost records, poor record keeping and false records being kept with no accurate reference to side effects that i have had - taking data from my medical records would only serve to further confuse science.
    Golden
    Sasha likes this.
  9. Sasha

    Sasha Fine, thank you

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    Good for them - that's what I call class! I wish all doctors had their backbone. The govt can't sack all of them.
    golden likes this.
  10. golden

    golden Senior Member

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    Lol exactly.

    I expect it maybe even simpler than that and they will make it possible to match the NHS number with a name.
  11. golden

    golden Senior Member

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    My first thought was who are they and are they near me - i would consider registering with a Doctor like this :)
    Sasha likes this.
  12. Unim

    Unim

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    Thanks; I hadn't heard about this. I've reposted those links on to another group too.
    golden, maryb and Sasha like this.
  13. maryb

    maryb iherb code TAK122

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    me too - a GP with standards...wow
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  14. golden

    golden Senior Member

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    I have now opted out :) I am relieved. I accidentally found myself in a jobclub lol don't ask me how!

    But whilst on the computer everyone became interested and they printed out a load of opt out forms for everyone :)


    I added this to my surgery too... And felt a sense of relief at conveying my dissapointment to my surgery. I think its nearly two years now since my vitamin d incident where the practice manager was rude to me.

    " Please find enclosed my completed Opt out form for this new NHS care.data scheme.

    I am appalled by the lack of clear information and deception on the NHS leaflet I received amongst junk pizza leaflets which in many peoples view, including a growing number of G.Ps, violates the NHS constitution.

    Customer care and respect should be top priority alongside allowing patients to make an informed decision. It is quite frankly, insulting.

    As you know, due to lazy and neglectful NHS Doctoring in the past which in my case has lacked proper medical testing and scans, oganisational error resulting in some of my notes having been lost, this has meant my medical notes are innaccurate and contain misdiagnoses and unscientific comments based on Doctors bias and pie in the sky guesses. This has left me unable to claim benefits and in the most dire financial poverty. I conclude, therefore, that this scheme would serve only to further confuse science trying to harvest data from inaccurate medical records.

    I would respectfully ask your surgery to make sincere in its attempts to alert your patients of this scheme and possibly provide them with Opt out forms which should have been provided on the leaflet being sent out. There are at least four other G.Ps
    who have automatically opted out all of their patients. They are manually including only those handful of patients who wish to be part of this scheme. Because they are protecting their patients best interests they have the threat of being sacked.

    Please write to acknowledge and confirm I have been opted out.
    "
    As Always, Kind Regards,"
  15. maryb

    maryb iherb code TAK122

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    @golden
    just heard on the news the NHS has put on hold for 6months these plans - they've been told they haven't done enough research - ha ha ha ha ha ha
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  16. golden

    golden Senior Member

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