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Parts of care.data should be 'opt-in' only, says NHS England director

A senior NHS England official has said part of the Government’s controversial patient-record sharing scheme should be ‘opt-in’ only.

Dr Mike Bewick, deputy medical director at NHS England, said he did not disagree with concerns that confidential patient data could be ‘sold to pharmacy companies’, and that he was personally arguing in favour of making that part of the plans ‘opt-in’ only, as he addressed GPs at the Pulse Live conference in Manchester last week.

However he argued that he thinks that there is a ‘moral imperative’ to ensure care.data goes ahead, to aid healthcare planning and academic research and that therefore GPs - and their representative organisations - should reassure patients about the scheme.

GPC members voted in favour of NHS England abandoning the current opt-out system - which presumes that patients have consented to having their records shared unless they explicitly object - and a Pulse survey earlier this year revealed only 19% were supportive of the system. NHS England recently scrapped the deadline for the relaunch of the scheme saying it will only be rolled out when they are sure ‘the process is right’.

But Dr John Hughes, GP in Manchester and member of the GPC, told Dr Bewick that as long as Prime Minister David Cameron was planning to ‘sell’ patient records to pharmaceutical companies, persuading GPs to back the scheme would be tough.

Dr Hughes said: ‘Care.data is an extraction of the entire GP record, possibly anonymised, possibly pseudo-anonymised, for the purpose of research, but also as David Cameron himself has said, for possible sale to pharmaceutical companies. That is the issue, that is what the BMA is concerned about, that is what patients and human rights groups are concerned about, and it is going to be very, very difficult to persuade anyone in the medical profession to sell that to patients until we have honesty from both the Government and HSCIC about exactly what is going to happen and what safeguards are in place.’

Dr Bewick stressed that he was not in charge of the project but said: ‘I don’t disagree with that. I think we have to be completely transparent and honest about what that data is used for and personally I have always argued that it should not be available for that without an opt-in.’

He added: ‘We have to have good governance over where that data goes and it is shared with universities, with public health, because there is a great advantage to people knowing users of systems when they require interventions that we are able to do and we can’t do it. I’ve heard quotes of, you know, several thousand lives per year that would be saved in terms of reduced mortality. I think there is a moral imperative to do it but we really need the messages to come from people who have got over the fact that it is not going to threaten them individually in terms of their personal data security.’

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Readers' comments (6)

  • The govt has an appalling record on data security, there is absolutely no reason to trust them now. They are disingenuous at best, totally dishonest at worst and certainly not to be believed.

    Remember, Cameron said that there would be no top-down reorganisation of the NHS....

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  • I see my role as the patients' advocate and would only feel able to reassure patients were I confident that such reassurance is justified. The "moral imperative", if there is one, must surely lie with those who propose to use the data; let them make their case and supply the reassurance.

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  • Vinci Ho

    Kissinger is playing hard as the peacemaker and tried to say something a 'normal' human being is expected to say.
    But it is still about trust and credibility of a government at the end of the day , no matter how noble the moral imperative is.
    Trust and credibility of this government on handling NHS is vanishing fast and furious........

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  • and let me guess who will be asked to facilitate the opting in and box ticking...............

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  • Are there any signs of discussion and publication of the IG to be applied to care.data (and all other NHS England/HSCIC data collections)?
    If we - GPs, patients, public, ICO - are being asked to trust the government, it would be useful to know just what controls on both collection/extraction and release would be, how these would be scrutinised, how the individuals/organisations performing the scrutiny would be selected/recruited and resourced, and what significance their advice would have - if any.
    GPES was set up with Principles and an IAG: should this model be applied throughout the HSCIC?

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  • I would never agree to share data, the NHS has lost the trust of the patients it serves!

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