Two-thirds of patients do not recall receiving a leaflet informing them about NHS England’s flagship care.data record sharing scheme, according to a BBC poll of 860 English adults.
NHS England ran a nationwide campaign involving a mail drop to every English household last month, but the poll commissioned by the BBC – run after the mail drop – reveals that concerns the leaflet would be seen as junk mail and discarded seem to have been borne out, with 71% saying they did not remember receiving a leaflet.
The survey also found that the overall message does not appear to be getting through to the general public. Some 45% of respondents said they still do not understand the scheme, with the first data extractions due to take place in March.
The lack of knowledge across the patient population could have repercussions for GPs themselves as the Information Commissioner’s Office has said that under the ‘fair processing requirements’ of the Data Protection Act, practitioners have a duty to ‘actively provid(e) information to patients so they are well informed about the process’ while if a patient complains they weren’t informed about the process ‘it’s the GP’s responsibility’.
The ICO’s strategic liaison group manager, Dawn Monaghan, said the ICO was ‘continuing to liaise with both NHS England and the Health and Social Care Information Centre about our concerns in regard to the detailed communication they are providing for GP’s and patients’.
A Pulse survey of nearly 400 GPs has shown 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.
Dr Paul Thornton, a GP in Nuneaton, Warwickshire told Pulse that the lack of patient knowledge showed NHS England campaign had failed and that GPs were going to be forced to provide additional information.
He said: ‘The obligation on GPs to fulfil the fair processing requirements has not been fulfilled by the Government’s leaflet drop.’
‘I see no reason why GPs should not invoice the HSCIC for the time it takes to undertake the legal requirements that they must fulfil.’
A spokesperson for NHS England said: ‘This is an ongoing exercise of engagement. We are listening to people’s concerns and are actively talking with doctor’s groups, patients and charities about how we can better and further explain this programme and people’s rights to object.’
‘Care.Data is a really important programme and the information it provides will ensure the highest standards of care and clinical safety are consistently met throughout the NHS and alert us to where standards drop, enabling us to take prompt action.’