Four care.data pathfinders chosen

Clinical commissioning groups in Leeds, Blackburn, Somerset and West Hampshire have been selected as pathfinders for the care.data programme.

The pathfinders will test different communication strategies with patients, explaining the benefits and risks of data sharing, before moving forward with the data extraction part of the project.

The programme will be rolled out in participating GP practices in the CCG areas of Leeds North, West and South and East, Somerset, West Hampshire and Blackburn with Darwen.

The care.data programme will extract data sets from different organisations, starting with GP practices, and link them to an expanded set of Hospital Episode Statistics within the 'safe haven' of the Health and Social Care Information Centre.

The project was due to start earlier this year, but NHS England was forced to “pause” the programme in February after and privacy groups objected to a public leaflet campaign that failed to include a clear account of the programme, who would receive the data, or an opt-out form for patients.

NHS England’s director for patients and information Tim Kelsey said there are “huge benefits to be had from this programme” and that this is the commissioning board’s opportunity to “make sure we get it absolutely right”.

“The pathfinder stage is another step on the way to creating a more substantial picture of our nation’s health so we can improve care for patients,” he 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.”

Phil Booth, coordinator of privacy campaign medConfidential said it is crucial that “patients are given the full picture”.

“Fundamental issues about the consent process and who will be able to use patients’ data, and for what, are still not properly nailed down,” he said.

“It’s all very well to make promises, but patients must be able to trust those promises are true. NHS England cannot fudge what it says to doctors and patients, or it risks another crisis of confidence.”

In total, the four CCG areas represent 265 GP practices and NHS England is together with the CCGs “engaging with individual GP surgeries which are all at different stages in the process”.

The pathfinders where chosen by a selection panel consisting of representatives from the BMA, RCGP, Healthwatch England and NHS England¹s voluntary sector Strategic Partners.

They will test communication initiatives, including individual letters sent to people’s homes from their GP, a leaflet and other “explanatory materials”, as well as emails and texts.

The data from the pilots will be shared with “approved analysts” in a secure data facility at the HSCIC.