More than 250 practices chosen to test the care.data scheme have been revealed by NHS England.
Practices in Leeds North, West and South CCG, Somerset CCG, West Hampshire CCG and Blackburn with Darwen CCG will now take part in the ‘pathfinder stage’ of the programme.
The care.data programme aims to create a “national picture of health patterns” so that commissioners can study diagnosis, waiting times and patterns of illness and disease.
However, the scheme, which would see information pulled from GP practices, faced a major backlash from clinicians and the public over how the data would be used.
NHS England’s national director for patients and information, Tim Kelsey, 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.”
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.
Phil Booth, coordinator of health data confidentiality campaigning group medConfidential, said: “It’s crucial that patients are given the full picture if care.data is to be attempted. Fundamental issues about the consent process and who will be able to use patients’ data, and for what, are still not properly nailed down.
“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.”
“We look forward to reading what NHS England are actually proposing.”
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