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Second GP decides to opt all patients out of records extraction as care.data rebellion grows

Exclusive A second GP has taken a stand against the controversial care.data programme and has unilaterally opted all of his patients out of the scheme, despite warnings that practices which do so are breaking the law.

The GP, who has asked to remain anonymous, but whose practice is in the North West, has given his patients the choice of opting in to the scheme but so far has only had one taker, a relative of a CCG chair.

He told Pulse he had taken the decision in order to protect patient data prior to NHS England’s U-turn on whether to hold a nationwide publicity campaign. NHS England will now send information leaflets to all 22 million households in England, in a move which has pushed back the extraction deadline to early 2014.

Last week Pulse revealed that another GP in Oxford had also decided to opt all of their patients out of the care.data scheme, although the GP in the North West is the first known case where a GP has already applied opt out read codes to patient records.

The GP in the North West said it had been ‘very easy’ to apply a batch of opt-out read codes to patient records, and that it would be a ‘simple matter’ to remove the code for those within to opt in. He has notified patients via leaflets displayed around the practice, messages on repeat prescriptions and by consulting his practice’s patient forum, which he said was ‘happy’ with the action taken. He had also planned to send a mailshot to patients, but has held off since the announcement of the national publicty campaign, which will set out the benefits of care.data extraction.

‘I did this before the change of timescale and the commitment to write to all households,’ he said. ‘I felt that the person or organisation that wants to use the data should have the responsibility for asking permission to use it. I also did this before there was any suggestion that the data could be used to look at practice performance. I don’t have a problem with practice performance being scrutinised however again I don’t see why you can’t use anonymised data.’

‘It’s clear that the data set extracted in the first wave could easily be further expanded in subsequent waves and I couldn’t see why you need personal data to make commissioning decisions. You just need to know how many people have strokes and which areas they live in, not their individual names and addresses.’

The GP said ‘there wasn’t much point’ in notifying his local area team, and added: ‘The LMC weren’t very helpful either. The chair just said that you had to comply by law, but he didn’t recognise that he would be held responsible if anybody objected after the event. I have asked the LMC why the BMA logo was on the original announcement when it was clearly in breach of the data protection act and so far they haven’t responded.’

NHS England has said it has provided ‘additional fair processing guidance and information to practices’, and will monitor objection rates from when the national care.data extraction begins.

A spokesperson for NHS England said GP practices had a ‘statutory duty’ to take part in the care.data extraction programme under the Health and Social Care Act, but declined to specify what action it would take against practices which have opted all patients out.

‘The NHS needs data to ensure that we are delivering high quality care for all,’ she said. ‘If a patient wishes to object to their data being used for these secondary purposes, they must do so autonomously, based on balanced information. It is not right for GP practices to make this decision on their patients’ behalf.’

GPC deputy chair,Dr Richard Vautrey also stressed the need for GPs to understand the legal position.

‘GPC guidance and the FAQs we have produced are clear on this matter,’ he said. ‘Practices are breaking the law if they opt all their patients out of care.data. The Health and Social Care Act gives the Health and Social Care Information Centre to require the information and GPs are legally obliged to comply with that requirement.’

‘It is only because of BMA pressure that the Government have agreed to allow practices to opt patients out at their request, and again because of our pressure there is now a delay in extraction of information to now allow for a national mail drop to every house in England, to inform patients about what is happening.’

‘However the law remains unchanged and practices acting in this way are at risk for doing so and should take legal advice and inform their medical defence organisation.’

Readers' comments (14)

  • I have written to my GP today and opted out my whole family. I am sure many patients will do the same when they understand what is being proposed. There is no valid reason why this data is not anonymised and it clearly breaches data protection rules. Someone should test this case in the European Court of Human Rights...

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  • I agree very strongly with the above comment. We are being misled by the information being distributed by NHS England and we are only being told part of the story. A group of LMC and local doctors should take a class action to the European Court.. If not health campaigners will.

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  • Well done that GP.

    The way our private medical data was going to be sold without our consent was appalling & I'm glad there are doctors who are willing to say no, enough is enough.

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  • For info..... NHSE does not hold any legal opinion regarding this....
    Re: Freedom of Information request (Our Ref: SDR - 141310)

    Thank you for your Freedom of Information (FOI) request dated 20 September 2013.

    Your exact request was,

    “Please would you give me copies of all legal opinions you have received regarding the release of patient personal information by GPs to the Health and Social Care Information Centre.
    In particular:
    Any opinion regarding the legality of GPs releasing personal information about patients without their explicit consent.
    Any opinion about what constitutes personal patient consent.
    Any opinion about the circumstances in which patient consent can be assumed.
    Any opinion about whether release of personal patient information without explicit consent would breach the data protection act.”

    NHS England does not hold this information.

    Information provisions in the Health and Social Care Act (2012) were drafted and negotiated by the Department of Health, not NHS England as the Act pre-dates NHS England’s existence as an organisation. However, the Department of Health may hold information relevant to your request; if you wish to re-submit your request to them, please find their contact details below:

    Ministerial Correspondence and Public Enquiries Unit
    Department of Health
    Richmond House
    79 Whitehall
    London
    SW1A 2NS
    Website: http://www.info.doh.gov.uk/contactus.nsf/memo?openform

    Please note further legal information on this matter is covered in the recently published GP FAQs on the NHS England website (FAQ 13):
    http://www.england.nhs.uk/wp-content/uploads/2013/08/cd-faqs.pdf

    I hope this information is helpful. However, if you are dissatisfied, you have the right to ask for an internal review by writing to us, within two months of the date of this letter, to:

    NHS England
    PO Box 16738
    REDDITCH
    B97 9PT

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  • Only 2 GPs with independent thought and integrity... a poor reflection on the state of the profession.

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  • BMA - Please bring a class action against the DH for breaching the DPA on behalf of Doctors everywhere. Show some leadership please.

    Dr Swinyard - Is this something the FDA would consider?

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  • "Only 2 GPs with independent thought and integrity... a poor reflection on the state of the profession."
    ---

    What a stupid post.

    This law has been enacted by the government of the day (which was, unfortunately, elected by the population). It is not a GP's job to break such a law (and endanger their own career or their family by doing so). Whilst some may choose to make a particular stand if they wish, only an idiot would suggest that those who comply with the law lack integrity.

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  • Ivan Benett

    Hardly going to rock democracy as rebellion grows to 2 anonymous GPs.

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  • They will not remain annonymous if prosecuted. You cannot imply that the rest of the profession is weak for not taking this action when you do not know what action other practices are taking.

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  • Re the FOE request 10.12am. That reply is appaling. Did you resubmit the request?

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