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GPs vote in favour of an opt-in system for care.data

GP leaders have said that NHS England’s flagship patient record sharing scheme, care.data, should be an opt-in system and patients’ records should only be extracted through ‘patients’ explicit and informed consent’.

GPC’s lead on the issue informed the conference that NHS England had committed to abide by the findings of an independent review of the pilot running between 100-150 practices.

Dr Beth McCarron-Nash also told Pulse that she welcomed NHS England’s decision to review the pilots, which will look at patients’ awareness of the scheme, as well as matters on data quality.

LMC members also said that any extracted patient records ‘should be pseudonymised or anonymised’ before leaving the practice.

They conference insisted that any patient information that may be extracted should ‘not be sold for profit’ and should only be used for the purpose of ‘improving health and care delivery’.

Speaking to Pulse after the vote, Dr McCarron-Nash said: ‘ What we’ll do is we’ll obviously inform Tim Kelsey of the overwhelming decision of LMC Conference that GPs feel that patients have a right to say what information is released via care.data. That will be our position, and we’ll have to see what will happen regarding negotiations after that.’

She added: ‘I welcome the announcement that Dame Fiona [Caldicott] has agreed to oversee and evaluate the pilots prior to them being rolled out, because it’s absolutely vital that they get this right.’

‘The public and doctors have lost confidence in care.data, and any perception of good has been lost because of their absolutely diabolical information campaign. Which actually was just a disaster.’

‘The most important thing is that it is evaluated, and especially in regards to the evidence they have communicated with patients.’

Dr Kate Gurney, from Devon LMC supported the motion and urged assembled doctors to ‘put aside your medical hats and think like patients.’

Dr Gurney drew attention to the need for patients to be appropriately informed about the sharing of their data, and reminded the conference – with a sample of her own home’s junk mail - that the initial leaflets informing patients about care.data arrived alongside pizza menus, or not at all.

Dr Gurney said: ‘I feel very strongly we should be asking patients to atively opt in to any data sharing, and also be able to assure them that any data is fully anonymised.’

Speaking in opposition to the motion, GPC Scotland representative for Tameside Dr Andrew Cowie told conference the motion could disrupt record sharing schemes in the other devolved nations.

‘I am anxious that conference is making binding decisions that will prevent GPC from engaging in constructive discussion to improve matters.’

Motion 66 in full - carried

AGENDA COMMITTEE to be proposed by BEDFORDSHIRE That conference believes the introduction of care.data has been nothing short of a disaster and:
(i) approves the decision of NHS England to put its roll out on hold until the autumn
(ii) believes that GPs have been placed in a difficult position in respect of the demands of the Health and Social Care Act and the Data Protection Act
(iii) asserts that data should be pseudonymised or anonymised before it leaves the practice
(iv) asserts that extraction should only take place with the explicit and informed consent of patients opting-in
(v) insists that it should only be used for its stated purpose of improving health care delivery, and not sold for profit.

Readers' comments (11)

  • Common sense at last. If we could also replace Tim Kelsey with say Professor Lord Ara Darzi, Professor Sir Bruce Keogh or Dame Fiona Caldicott as head of the programme we would have restored confidence in the programme. Tim Kelsey just isn't heavyweight enough to carry this off. His performance at NHS Live in Manchester was woeful. Prof Sir Bruce or Prof Lord Darzi or Dame Fiona are respected leaders (Tim had hus chance and should move on with the remnants of a failed, botched initial rollout of Scare.Data).

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  • Vote for Una Coates...she'd do the job without selling the public out

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  • Who can you really trust .,.. no one in the NHS!

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  • Vinci Ho

    To me, simple
    If and only if you trust the government , you can opt in care.data. Your choice.

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  • The government know full well that if they make care.data an opt in very few people would.
    Why should they bother to take the trouble to opt in when doing nothing is easier? Add to that those who are opposed and you would end up with a small amount of unrepresentative records.
    It will never, ever be opt in..

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  • Vinci Ho

    There is only one thing I know-
    People's power cannot be underestimated as long as 'people' are united towards one issue .
    Any politician or party dares to play autocratic , there will be consequences. Care.data is a good example.
    It is so interesting to see the local election result:-
    While I would rather cast a blank vote than for UKIP, clearly people had 'used' UKIP to kick the testicles of all the main parties . Of course , democracy probably only exists in the time leading up to election(s) and quickly evaporates after that........

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  • how will it work if people from Scotland or wales decide to move to England after the policy has been adopted

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  • Neil Bhatia

    @Anonymous 5:13pm
    Once de-registered from your English GP, no further uploads will take place from your GP record
    However, al uploaded info can and will continue to be sold, and cannot be deleted
    Same applies after you die
    care-data.info

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  • Sadly neither anonymisation nor pseudonymisation at source can truly anonymise data in this era of multiple databases and powerful search engines.

    Only aggregated data ( and not always that) can be considered anonymous. This is not welcome news, but Tim Kelsey and the former Information Centre ( now rebadged as the HSCIC) were forwarded Ohm's respected paper on the disappointing failure of anonymisation FOUR years ago. This was not even acknowledged by the IC, but may have had some influence as it was followed by the development of a Code of Anonymisation, widely criticised by the data security community.

    It is time for patients to be treated as partners in research, and asked for their informed consent if their personal health data is to be used.

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  • Of course we could ask patients how much they would sell their data for: http://libertarianhome.co.uk/2014/04/a-market-based-answer-to-the-care-data-medical-records-fiasco/

    Patients could give it away for free under this scheme, if they are convinced by the arguments for this.

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