GP-led clinical commissioning groups in four areas of the country are to help develop the care.data programme as it moves into a ‘pathfinder stage’.

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

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.

“We already collect and share information in so many walks of life. 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.

“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.”

Care.data will eventually create a national picture of health patterns so commissioners can study issues such as diagnosis, waiting times and patterns of illness or disease.

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).

At no time will anyone’s name or full address or notes of conversations with their GPs be collected.

The 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.

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.

To get the benefit of this data it needs to be shared with approved analysts who will have to travel to access it in a secure Data Facility at the HSCIC.

Additional notes

• The GP practices involved will be announced in due course.
• The four CCG areas, which represent 265 GP practices altogether, have broad support across their regions to take part in the pathfinder stage. In partnership with the CCGs we are now engaging with individual GP surgeries which are all at different stages in the process.
• The CCGs were chosen by a selection panel which included representation from the BMA, RCGP, Healthwatch England and NHS England’s voluntary sector Strategic Partners.
• The sites cover a wide range of demographics in order to test the programme on different social groups.
• The coded information from GP practices will be linked with hospital data to allow commissioners a better understanding of disease and develop treatments, understand patterns and trends in public health and diseases, and improve patient safety.
• The Care Act 2014 introduces new clauses which limit the use of the data to the provision of health and social care /promotion of health. This means the data cannot be used for purely commercial purposes such as setting insurance premiums.
• The approach to 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 the programme on the quality assurance of the processes which are being developed to identify, work with and monitor Pathfinder practices trialling care.data.
• Data from the previous four months will be used initially and analysts will begin to look at the data and assess its benefits. After this it will be extracted on a monthly basis.