Clinical commissioners are to help develop the care.data programme into the ‘pathfinder stage’. The programme will be rolled out in 265 GP surgeries in the CCG areas of Leeds North, West and South, Somerset, West Hampshire and Blackburn with Darwen.

CCG pathfinders will be supported in testing different types of communication with patients, 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.

NHS England confirms that 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 e-mails and texts where the surgery also uses these channels”. Under the care.data programme coded medical details held by the GP will be brought together with hospital data at the Health and Social Care Information Centre (HSCIC).

The pathfinder stage has been developed and agreed with advice from the BMA and the RCGP’s joint GP IT Committee. Dame Fiona Caldicott’s Independent Information Governance Oversight Panel (IIGOP) has agreed to work with NHS England’s pathfinder programme on the quality assurance of the processes which are being developed to identify, work with and monitor the first four areas trialling the care.data programme.

It will be interesting to see what the level of opt-out is and how this affects the integrity of the data.

Tim Kelsey, NHS England National Director for Patients and Information, said: “There are huge benefits to be had from this programme and this is our opportunity to make sure we get it absolutely right.”

“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.”

For more information about the care.data pathfinder programme please go to NHS England’s web page