Hundreds of ‘pathfinder’ practices will test different methods of informing patients about the care.data scheme and how they can opt out of it, under pilots announced by NHS England today.
NHS England said today that that patients will still have to opt out of care.data pilots, as part of an agreement reached with the BMA and the RCGP following a delay to the original launch date of February.
This agreement comes despite the BMA’s policy-making body voting that the care.data scheme should be opt-in only earlier this year.
NHS England has also said that 100 to 500 practices will be involved in the pilot – from the areas covered by the three Leeds CCGs, NHS Somerset CCG, NHS West Hampshire CCG and NHS Blackburn with Darwen CCG.
Those who sign up to the pilots will have to send individual letters, emails or texts to all their patients explaining the scheme, as revealed by Pulse in June.
As part of the pilots, NHS England will review whether to introduce an enhanced service as a means of funding GPs to carry out the work,
NHS England initially delayed the scheme in February, weeks before it was due to be rolled out nationwide, to ‘build understanding’ of its benefits.
This was after the BMA and the RCGP withdrew their support for the scheme – which will extract patient records from GP IT systems and match them with secondary care data for the first time – after warning that ‘large numbers’ of patients had not received information, and that NHS England should write individually addressed letters to patients.
Since the delay, the LMCs Conference voted against care.data remaining opt out, and called for confidential patient data to be anonymised before it leaves the practice.
However, following the review, NHS England has decided that patients will still have to opt out rather than opt in and gave no indication that data would be anonymised at source.
NHS England has said those who do sign up to be pathfinders ‘will be supported in testing different types of communication with patients in those areas, explaining the benefits and risks of data sharing, and making clear their right to opt out from having their confidential information shared for indirect care.’
It added: ‘As part of the pathfinder stage, a variety of communications will be tested with patients which will include an individually addressed letter sent directly to every individual or household from their pathfinder GP surgery, a leaflet and other explanatory materials, as well as emails and texts where the surgery also uses these channels.’
Tim Kelsey, NHS England national director for patients and information, said: ‘Since February we have been listening to the views of the public, GPs and other important stakeholders to hear their concerns about data sharing.’
‘We have heard, loud and clear, that we need to be clearer about the care.data programme and that we need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out.’
NHS England has yet to give details of when the pilots will begin, after saying it would not be held to ‘artificial’ timescales in the wake of the first delay.
But it has hinted that it will look into creating an enhanced service to fund GP practices to take on the work.
It said the pathfinder pilots will specifically look at: ‘Any additional burden on GPs and practice staff; any additional burden on CCGs; options as to how potential burden could be negated or eased e.g. through Local Enhanced Service contracts or Directed Enhanced Services; and other factors such as through use of the data to reduce resource needs in other areas.’
Pulse revealed that GPs were opting their patients out of the scheme by default because of the lack of information, which led to one GP Dr Gordon Gancz from Oxford, having his contract threatened by NHS England.