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…