As data controllers, it is the obligation of all GPs under the Data Protection Act to take action to raise patient awareness about care.data before data extraction begins.
But strategic liaison group manager at the ICO, Dawn Monaghan, said: ‘If GPs choose to opt out all of their patients, then that is an issue for them and NHS England – the Data Protection Act does not prevent it.
‘However, the Data Protection Act would still require patients to be give a full explanation of the options open to them, and why the GP has chosen to opt them out.’
NHS England duties
GPC deputy chairman Dr Richard Vautrey said NHS England must shoulder the bulk of the work in informing patients about the data scheme, which was ‘paused’ by NHS England earlier this year amid complaints that patients had not been properly informed of its aims or their right to opt out.
‘As far as the ICO position is concerned that is technically correct but it puts a huge workload burden on practices, which is not funded, and also places the risk in relation to delivering effective communication to every single patient on to the practice,’ he said.
‘This is an NHS England initiative and they need to ensure that patients are properly and clearly informed.’
It was announced earlier this month that practices in four CCG areas are to pilot the reintroduction of care.data in what is described as a ‘pathfinder stage’.
Practices will be identified in Leeds, Somerset, West Hampshire, and Blackburn with Darwen, to trial a variety of methods of informing patients about care.data and the options for patient to opt out.
Pilot CCGs chosen
The four CCGs were chosen by an NHS England panel that included representatives from the BMA, RCGP, and Healthwatch England.
Dr Vautrey said no practices in Leeds had yet been asked to sign up to the pilot scheme.
‘The intention is that a small group involving GPs and patients will review the process and the information that would be given to patients so they are absolutely clear what is happening and how they can make decisions,’ he said.
‘Only once that has been achieved satisfactorily will practices be invited to take part.’
At its annual representative meeting this summer, the BMA said the care.data scheme should only continue if it became an opt-in, rather than opt-out scheme. The UK LMCs conference in May expressed the same view.
A spokesman for patient group Patient Concern said all practices taking part in the pathfinder pilots should opt out all patients and only remove that opt-out if the patient gave permission.
