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NHS England delays care.data scheme to 'build understanding' of benefits

NHS England has announced it will delay its flagship data-sharing scheme for six months, to allow managers more time to ‘build understanding of the benefits’.

NHS bosses said they would halt the planned extraction of data from GP surgeries in April and delay it until the autumn.

The delay comes after the RCGP and the GPC objected to the scheme, saying ‘large numbers’ of patients have not yet received any information about it and the communications programme around it should be expanded.

NHS England said that it would work with patients and professional groups – including the BMA, RCGP and Healthwatch – to develop ‘additional practical steps to promote awareness with patients’.

It also promised to test the quality of the data from the scheme in a ‘small number’ of GP practices and look into further measures that could be taken to ‘build public confidence’.

Care.data will see data from patient records extracted from all GP practices, linked to secondary care data and made accessible to researchers and private companies.

Supporters of the scheme have argued it will have significant benefits for both commissioning services and medical research, and NHS IT chiefs insist patients’ data will usually only be shared in anonymised or ‘pseudonymised’ form, with any releases of identifiable data subject to strict privacy safeguards and a public interest test.

But a Pulse survey of nearly 400 GPs showed that over 40% intend to opt themselves out of the scheme over a lack of confidence in how data will be shared, and some GPs have gone further by opting all of their patients out of the scheme in defiance of NHS England guidelines.

Tim Kelsey, national director for patients and information at NHS England, said: ‘NHS England exists for patients and we are determined to listen to what they tell us. We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.’

The move was welcomed by the RCGP and the GPC. Before the announcement, the college wrote to NHS England outlining a six point plan for NHS England to reassure patients and ensure the scheme is ‘beyond reproach’ before March.

The letter included a demand that NHS England runs television and radio ads and sends an addressed letter to every individual explaining the scheme.

RCGP honorary secretary Professor Nigel Mathers said: ‘We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause.

‘The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.’

GPC chair Dr Chaand Nagpaul said: ‘We are pleased that NHS England has listened to the concerns of the BMA and that the decision has been taken to delay the roll out of extractions to care.data until the autumn. With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data.

‘While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted.’

Also today, NHS England said it would be looking urgently into claims that two-thirds of the public did not recall receiving the care.data information leaflet.

A spokesperson said: ‘We contracted Royal Mail to deliver a leaflet to every possible household in England during January. We are concerned by reports that some households have not received a leaflet and are following this up with Royal Mail as a matter of urgency.’

But a spokesperson for Royal Mail told Pulse: ‘The delivery went out between January 6 and 27. We commissioned independent quality testing to ensure that this mail was delivered. We can confirm that delivery was carried out across the country.’

How the controversy unfolded…

Feb 2014

GPC calls for urgent talks over public awareness of care.data scheme

RCGP demands new publicity campaign to address ‘crisis in confidence’ over care.data scheme

GP hit with contract notice over plan to opt all patients out of care.data

Jan 2014

GP survey reveals extent of care.data ignorance among patients and staff

Patients may lose trust in NHS if care.data scheme goes ahead, admits NHS England risk analysis

Over 40% of GPs intend to opt themselves out of care.data scheme

Revealed: Independent experts overseeing care.data have approved 31 releases of identifiable patient data since April

GPs held responsible for patient complaints over NHS data-sharing project, says ICO

Nov 2013

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

GP takes ‘unlawful’ decision to opt patients out of care.data programme

Oct 2013

NHS England bows to confidentiality concerns and launches £2m national publicity campaign on care.data

Eight weeks to inform patients their data is going to be harvested, GPs warned

Sept 2013

GPs unable to object to patient data being shared, warns GPC

GP leaders consider boycott of NHS England’s data extraction programme

August 2013

NHS managers rule out publicity campaign for controversial data extract programme

Private companies set for access to patient data for just £1

May 2013

NHS England to start extracting data from GP practice records

April 2013

Patients to be given ‘veto’ over their data being shared from GP records

Risk patients will be identified by anonymised GP record data, NHS England admits

March 2013

NHS to link up data from GP records and secondary care

 

 

 

 

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Readers' comments (36)

  • It's SOOOOOOOO obvious they are going to put a massive HALT to this.

    Thank goodness, maybe a chance at genuine democracy .

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  • Let joy be unconfined ... an outbreak of common sense.

    I want someone to ask the Secretary of State "You don't have a better bad idea than this?"

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  • Smell the burning rubber as the emergency brakes are applied...

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  • Haha!
    I bet Hunt regrets ignoring GP opinion on this one.
    RCGP and BMA need to examine their collective conciences.
    As does Clare Gerada who stated in a national paper that people who opted out were as selfish as people who refused to have their children vaccinated.
    It's called democracy and patient choice. Their opinion is as valid as your Clare!

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  • well, I live in a small village, right across from the sub-post office and I still haven't had my leaflet.
    Just as well I've opted out anyway.

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  • Damn! Does this mean I will have to opt out AGAIN?

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  • Vinci Ho

    (1) Politically , need to buy some time . Avoid the heat of the moment . Let the temperature cool down and try again. THEY ARE NOT GOING TO GIVE UP
    (2) This matter also demonstrates the joint force and union of our representative bodies (RCGP and GPC) can influence these bureaucrats but question is how long is the 'Viagra effect' going to last . As I said the baggage or impedimenta of political correctness will just deter them from saying the truth , say the 'right' thing is not the same as the 'true' thing.
    (3) What is the commercial price and disappointment if this care.data really cannot go through eventually ??

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  • Vinci Ho

    Don't forget this is coming from the 'righteous' Health and Social Care Bill.
    Hence the logic is if one supports this care.data,one is supporting HSCB,ladies and gentlemen

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  • You must be joking V. H. how long did it take for RCGP and BMA to realise people wouldn't take this lying down and only then start to come out with rather smarmy statements meant to appease. It is campaigners who brought this about

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  • Anon 7.30 I agree.
    The BMA and RCGP only had talks when the political heat became too much. CG is still wholeheartedly in favour, and the BMA are largely supportive.
    It has been GPs, and some elements of the press who have turned this around, especially Pulse, and some patient support groups.
    There has also been an interesting statement from some of the defence organisations.
    Editor.....the next issue you need to be looking at is the sharing of medical records between different providers within a CCG including several practices by, for example, vision 360. What safeguards are in place to prevent information such as the address of a victim of domestic violence being accessed by an employee?

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