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Independents' Day

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)

  • It is interesting that NHSE are prepared to threaten legal action against GPs who opt patients out when they are in receipt of absolutely no legal opinion at all!
    Yes, I have submitted exactly the same request to DoH but it will take them exactly 4 weeks to reply and I predict that the reply will be inadequate. Each subsequent inquiry or clarification takes a further 4 weeks.

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  • This strikes me as deeply hypocritical - it took me a year to get my own records from my (previous) GP despite ICO intervention (and threat of regulatory action). GPs understanding of the DPA seems to be highly convenient and selective. The only person who has any right to ownership of medical records is the patient themselves.

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  • Two GP's might not 'rock democracy' but at least someone is willing to question a potentially unreasonable and ill thought out request, if not an illegal one. Social care act V DPA.
    The law already exists to protect personal data-are we 'satisfied' under our 'obligation'?

    From the ICO website-

    Statement on care.data
    October 2013
    Earlier this year, the NHS Commissioning Board (NHS England) announced plans to introduce a new system for collecting and analysing data called care.data.

    We have, this week, received an updated plan from NHS England which confirms that the data extraction for the care.data system will not begin until Spring 2014. We have been assured that further communication will be provided to GPs to enable them to more clearly understand the process and to ensure they are fully aware of their fair processing obligations under the Data Protection Act.

    Prior to the extraction we understand that a national and regional communications campaign aimed at informing patients about the new changes will be launched by NHS England and this is welcome. We will continue to advise NHS England, GPs and the other relevant bodies about the importance of ensuring patients fully understand the options available to them and how they can object if they wish to do so.

    It is a fundamental principle of the Data Protection Act that people are aware of how organisations may use or disclose their personal information. We expect all of the organisations involved to use the time between now and the Spring to make sure patients are aware of these changes, how their information will be used and how they can object to this if they wish to do so.

    As the organisation with primary responsibility for their patients’ data, GP surgeries have an obligation to ensure that information about the use of their data is actively communicated to patients. They should satisfy themselves that the national and regional communications campaigns organised by NHS England, along with their proactive communication at a local level, ensures that, as far as practically possible, all patients are aware of these changes.

    We will continue to work with and support the key organisations as work progresses to make sure patients’ information is being looked after correctly.

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  • I agree it seems unneccessary to snoop on medical records but, in the context of our emails etc. being spied upon, (over which few have protested) it seems exaggerated to protest about medical records.
    We must change the rules of govenment using another party NOT one of the big three, one which supports privacy and prohibits snooping - now a common disaster!

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