GP practices who have been asked to pilot NHS England’s flagship patient record sharing scheme, care.data, will not be signed up until 2015 despite NHS England stating the pilots would begin in 2014.
NHS England has said, in response to a new report on care.data, that although practices have been invited to participate, the signing-up process would not be concluded until after the New Year.
The same report also includes evidence from NHS England’s director for patients and information and lead on care.data, Tim Kelsey, who said postponing the scheme in February last year had been done to avoid it becoming a ‘crisis in public trust’.
The scheme came to national attention after Pulse reported that one Oxford GP, Dr Gordon Gancz – now working with Ebola sufferers in Sierra Leone – had had his contract threatened by NHS England over his plans to opt his patients out of the scheme.
The all-party parliamentary group for Patient and Public involvement in Health and Social Care’s care.data inquiry report, released on Friday, criticised NHS England for ‘inadequate’ public consultation on the scheme’s early implementation, which led to its delay.
The inquiry, which collated evidence from research bodies, charities and royal colleges, sought evidence on ‘the lack of publicity, clarity and patient involvement’ in the care.data programme, as well as on whether the scheme should be opt in or opt out.
The report found broad general support for record sharing and the use of health data for research in the public interest, but it also brought calls for a wider consultation on exactly which data would be extracted from GP records.
In a summary of oral evidence from Mr Kelsey, the report states: ‘The care.data programme was stopped in the spring due to safeguarding issues. It was stopped before it had become a crisis to public trust. A policy of adopting caution and complete transparency is in place.’
But the report concludes: ‘There has been a lack of clarity and publicity around the care.data programme, how the data will be used, who the data will be used by and what implications it has for end oft life care.
‘It was felt by many that the benefit outlined above would only be met if strict confidentiality protocols are maintained and that such programme is sufficiently explained.’
Commenting on the report, an NHS England spokesperson said: ‘GP practices in some areas have been formally invited to participate but we cannot yet confirm the number of GP practices signed up as this process will not be complete until the New Year.’
Eve Roodhouse, care.data programme director, said: ‘We’re very pleased patient groups and charities support the care.data programme, which will help us join up health information between GPs and hospitals.
‘We know we have more to do to communicate with the public about the programme and are fully committed to addressing the concerns raised, which is why we have established the pathfinder stage.’