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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)

  • @ShurleeHarding.

    Come on, GPs have not always been perfect BUT on this occasion, you deserve an oscar.

    Well done!!

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  • Another hugh cockup and total waste of taxpayers money! I received my leaflet .... tucked inside a double glazing mail shot! I usually tear up junkmail and put in recyling bin, but just by chance opened it, up an lo and behold there was the care.dat information leaflet. I suspect that's where most of the missing thousandsof leaflets are now - in recycling! At least councils will be getting a little extra money. If I was of a cynical disposition, I'd say this was a good way of the DH saying they have sent the leaflets out, and the public are apathetic. Good try, but strick one to the GPs and public!

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  • the handling of this by nhse has been incompetent on every possible level..either demonstrating absolute incompetence or deliberate malfeasance..which is it ?....who is going to resign???

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  • I have no confidence in the NHS and will never consent to sharing data no matter what is put in place.

    They should have asked the patients in the first instance, not tried to force GP's to give up this information via the back door!

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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

    'Thanks to original poster of the above.'

    THE KEY HERE IS THIS IS INTENDED TO BE THE NEXT STEP IN PRIVATISATION OF THE NHS - WITH THE DATA TO BE SHARED WITH US PRIVATE HEALTHCARE COMPANIES - TO ALLOW THEM TO ANALYSE DATA TO SEE WHERE THEY CAN ENTER THE MARKET AND MAKE A PROFIT.

    Stop this abuse of confidential private data, and the politicians/DOH lies that there is no privatisation agenda.

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  • The medical records of every NHS hospital patient in the country have been sold for insurance purposes, The Telegraph can reveal.

    http://www.telegraph.co.uk/health/healthnews/10656893/Hospital-records-of-all-NHS-patients-sold-to-insurers.html

    However, a report by a major UK insurance society discloses that it was able to obtain 13 years of hospital data – covering 47 million patients – in order to help companies “refine” their premiums.

    As a result they recommended an increase in the costs of policies for thousands of customers last year. The report by the Staple Inn Actuarial Society – a major organisation for UK insurers – details how it was able to use NHS data covering all hospital in-patient stays between 1997 and 2010 to track the medical histories of patients, identified by date of birth and postcode.

    It boasts that “uniquely” they were able to combine these details with information from credit ratings agencies, such as Experian, which record the lifestyle habits of millions of consumers.

    The calculations were used to advise companies how to refine their premiums, resulting in increased premiums for most customers below the age of 50, according to the report dated last March.

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