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At the heart of general practice since 1960

Dr Amir Hannan: 'This goes to the very heart of the doctor-patient relationship'

Dr Amir Hannan describes how he has informed his patients about the care.data programme.

This is a really important issue, which goes to the very heart of the doctor-patient relationship.

If patients felt that their data was leaking out, and I had not warned them about it, then that would destroy my relationship with them.

In medicine, patients should come to us feeling safe and secure, not that there’s a small chance that someone might identify them and what is wrong with them.

The GMC is very clear on this, so I don’t know how we got into this horrible situation. So at the moment, all I can do is use whatever resources I’ve got to share the potential benefits and risks with my patients.

Luckily, we can share information over the internet with patients and this is what I have done.

I have placed detailed information on our website about the care.data scheme and linked to various information sources including our practice’s understanding, not just the official information provided by NHS England.

I have also put together a really simple online opt-out form and publicised it on my website and Twitter, or patients can print it out and hand it into my practice, so they do not need to phone or make an appointment. I have already had 372 patients opt-out using this tool in one week.

One patient on Twitter was one I did not even know was following me. They used this tool and minutes after my tweet was sent, they opted out and confirmed this by checking their records online themselves. It was as simple as that.

Dr Amir Hannan is a GP in Manchester

Readers' comments (6)

  • I applaud Dr Hannan for taking this seriously and for putting the info on the web site.

    My only reservation is - following the link - there is such a LOT of information on his web page! Surely only the most paranoid, curious or bored patients are likely to scroll down the 5-and-a-bit pages from top to bottom? (I stopped well before the end).

    Might there be a more concise way of summarising the situation?

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  • Well done Amir!

    I and most of my extended family have already opted out ourselves, and this is going to be raised at our PPG meeting next week, hot on the heels of a campaign using our surgery newsletter (on the waiting room chairs and downloadable from our website), waiting room poster and opt-out forms at reception.

    We do not believe in being obstructive about partner agencies using our data for legitimate purposes, but as data controllers of our patients records (ICO sees this a legal responsibility under DPA) it must be extracted in an anonymised state, and we must know where it is going, who is using it and what for. Care.data doesn't satisfy those requirements so we won't sanction it's deployment. Simples...

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  • As always, Amir, you demonstrate that your patients are at the centre of your concerns. I have opted out personally as I don't believe that there are sufficient safeguards in place to genuinely deidentify my data.

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  • If all GPs opted their patients out what could the NHS do?

    Amir ir right, I need to know my personal information is safe with my GP, someone I know and trust.

    I have reason to believe that the 111 service can now access patient records which is very worrying.
    Patients should opt in, not that many would, rather than opt out!

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  • One problem which has not so far been mentioned seems to me to be critical.
    Opting out relies on the use of a selection of codes being entered into the individual patient record in the GP system.
    This implies that NHS England already has access to all information on GP systems but has not (we are told) yet uploaded it.

    Given the demonstrated incompetence of nearly all branches of the NHS in implementing IT systems what confidence can we have that HSCIC will have programed correctly to identify the relevant codes and exclude these records from the upload.

    Alternatively will they still be uploaded but "protected" from release?

    Can we be confident that there will not be coding errors at practice level?

    Quite a few reservations!

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  • Well done Amir.

    Who are the plonkers who do not know or care about the special relationship a doctor has with their patient a relationship based on trust and confidentiality.

    The 251 ?? exceptional cases clause has, from reports in Pulse, been shown to be a fig leaf of protection for the public.

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