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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)

  • Vinci Ho

    According to the programme(JP's One) , CG was titled GP representative of NHS England.
    Correct me if I am wrong.

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  • The question is do the proffession or joe public trust NHSE or the governement with their personal data?I for one definately do not.Will this mean the begining of the unravelling of th Health and Social care act .I for one hope so as itis an utter shambles.

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  • "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."
    Not surprising - it was like a Lidl weekend flyer and went straight in the recycling along with all the other rubbish - it only caught my attention because I knew it was coming and wanted to see what they said in it - which was confusing and inadequate anyway.

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  • So, if the program is delayed by 6 months, how are practices going to get paid at the end of March 2014 for their QOF performance 2013-4 which was supposed to be provided by a GPES extract ?

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  • Kirsty,
    care.data is a separate data extraction from QOF (which is also aggregate data) and will have *no* effect on QOF extraction.
    Practices need to decide who in the practice can authorise GPES extractions, get the approptriate roles entered on the smart cards and when the notification of the colection for QOF comes through, authorise the upload.
    As GP practices (Data Controllers) have no contractual relationship with system suppliers (data processors) there should be a document of understanding - I think - between the practice and the system supplier.
    Have you had any information on how GPES will be implemented?

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  • Neil Bhatia

    Of course the delay is essential - at least it gives those who are not 100% happy with this project just a little bit longer to ensure that their objection is recorded.

    But unless NHS England fundamentally change their approach, that is, whilst it remains an opt-out scheme, whilst the data uploaded from GP surgeries remains unanonymised, whilst uploaded data will continue to be given and sold to 3rd parties out with the NHS, including those seeking to extend the privatisation of the NHS, and used for purposes other than for genuine medical research, and as long as patients have no way of deleting their uploaded data should they wish to, then this will simply be just that - a delay, and this unholy mess will simply reignite in 6 months time.

    These "pauses" have happened many times before within the NHS.

    We in the health service know that very often little or nothing changes as a result.

    Neil

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  • Having seen CG last night on Newsnight I am very disappointed that she accepted this offer to go on TV as members of the public would recognize her as the representative of GPs via the RCGP - which of course she is not anymore. 'GP representative of NHS England' was her official title last night on BBC - what job is that and who does she represent?
    It's a bit like interviewing Tony Blair as PM one night and 2 months later as adviser to JP Morgan Stanley without pointing out that their roles have massively changed. Last night she gave her personal opinion in favour of care.data and mislead the public by not clarifying this but appearing as a representative of our profession which she is not anymore.
    Reflection to be done by her in the appraisal 'Probity' section. Not good enough CG.

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  • US, UK sign bilateral health IT accord

    U.S. Health and Human Services Secretary Kathleen Sebelius and U.K. Secretary of State for Health Jeremy Hunt signed an agreement Jan. 23 meant to strengthen the sharing of healthcare data and
    technology between the two countries.


    "While we have very different health care delivery systems and payment models, we both face similar challenges posed by aging populations, increased levels of co-morbid chronic disease, and escalating complexity of care delivery and costs," said Sebelius, who signed the memorandum of understanding with Hunt at the annual meeting of the Office of the National Coordinator for Health IT.

    Source: http://www.healthcareitnews.com/news/us-uk-sign-bilateral-health-it-accord?topic=06,12,29

    I bet the lad who cocked the health.care project got a
    right bollocking from his holiness. Tee hee hee.

    Kath to Jerry: Don’t you guys know health is all about
    the bottom line.

    Jerry replies: Yes of course we do but there are 50+
    million English people and quite a bunch of bolshy GPs who have no f”!*^&g idea that you need to make more cash for the Fed. Oh by the way is that board job you mentioned still in the offing? It's just that Davy boy has been giving me some funny looks recently.

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  • MIS NUG has been campaigning on this and trying to raise up the agenda since last July. Let's hope that at last The BMA, RCGP and NHSE are listening. The objectives (stated) of this programme are desirable, but can be achieved in better ways. Unless there are other (unstated) objectives maybe this is an opportunity to get those better approaches adopted. http://emisnug.org.uk/article/postponement-caredata-extractions

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  • There are no benefits to patients by handing out postcode and NHS numbers to all and sundry.

    NHS tried to introduce this by stealth but now have to realise patients are not stupid and their trust in the NHS has been seriously damaged.

    It is a disgrace the way NHS have hounded GP's to comply when it never crossed their minds to ask the patients first.

    Nobody will agree to sharing data such as NHS numbers, postcodes etc. why are they needed other than to raise cash?

    The system should be an 'opt in' rather than an 'opt out' and I feel ti is time NHS England treated GP's with much more respect! Without GP's there is no NHS

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