The first care.data pilots are due to begin before May, with the tentative start coming over a year later than the intended launch of the patient record-sharing scheme.
The live trials will begin with NHS England sending an addressed letter to every patient living in the NHS Blackburn and Darwen, NHS Somerset CCG and NHS West Hampshire CCG areas, with the mailings to explain how to opt out and any impact of doing so.
The care.data exercise, which will extract information from GP patient records and make this available both within the NHS and to third parties, was delayed last year after a national communications campaign saw fewer than one third of the public receiving information leaflets, sparking widespread concern that patients were not adequately informed of privacy implications from the extraction. The communication was also criticised for not clearly explaining how to opt out.
Last October NHS England announced that around 250 GP practices would test run the scheme in four areas of England, including the CCG areas mentioned above and the three CCGs covering the city of Leeds but until now there has been no confirmation of when they would start and last month it was revealed only 80 practices had signed up, while Leeds had not signed up any.
Speaking at an event in London today, NHS England care.data programme director Eve Roodhouse said that while Leeds was still examining ‘alternative strategies’ to communicate with patients it recruitment of pilot practices was ‘under way’ and the other three pilots were on track to go ahead before May.
She said: ‘Leeds are going on a slightly different trajectory to the other CCGs, in terms of proceeding after the election, sort of May time.’
Asked by Pulse if the other pilots would begin before then, she added: ‘That is what we’re currently hoping.’
She added that no actual extractions of data will start until the scheme has been given the go-ahead by national data guardian Dame Fiona Caldicott, and NHS England have addressed the 27 key questions she raised before Christmas.
It comes as NHS managers may have to write to ‘millions’ of patients who opted out last year already to explain this may mean they will not get automatic invites to things like bowel cancer screening.