The NHS’s care.data programme has been hit by further delays, as health secretary Jeremy Hunt has asked Dame Fiona Caldicott to advise on the wording for a new model of consents and opt-outs.
The programme, which aims to extract data from GP surgeries to a central database, had begun with four “pathfinder” trials at Blackburn with Darwen clinical commissioning group (CCG), Somerset CCG, West Hampshire CCG and CCGs in Leeds.
Each CCG was at different stages of their trials – with Blackburn with Darwen CCG claiming it was ready to start with “fair processing” at the end of June.
In Somerset, 56 of the county’s 75 GP practices have volunteered to participate in the pilot, and NHS England had provisionally proposed that a mail-out of information to patient registered with the participating practices might have been possible towards the end of September 2015. But Somerset has confirmed that this will now not go ahead, and that all four of the pilots in England have been asked to temporarily pause their activities.
The scheme has been blighted with issues since its inception with patients, privacy campaigners and GPs all voicing concerns about the project.
This hasn’t gone unnoticed. Jeremy Hunt admitted last week at the NHS Innovation Expo in Manchester that the NHS had not yet won the public’s trust, especially in terms of just keeping data secure.
“Nothing matters more to us than our health, and people rightly say we must be able to assure the security of confidential medical information,” he said.
He explained that a number of measures would be put in place to assure the security of confidential medical data, and that Dame Fiona Caldicott, the “national data guardian” for health and care will provide advice on the wording for a new model of consents and opt-outs for the care.data programme.
Somerset has said that those within the care.data programme will wish to use this revised information and suggested that the pilot site testing cannot therefore proceed until Caldicott’s work is completed and the new consents agreed.
NHS England’s national director for patients and information Tim Kelsey said the new measures will “strengthen the public’s confidence in the security of their data”.
“We recognise that patients have concerns about data safety and we will do everything we can to protect their information and build their trust. It is imperative we listen to the public and address all their concerns.
“Jeremy has stressed the importance of care.data and we will continue to work with the pathfinder areas over the coming weeks and months,” he said.
A Somerset CCG spokesperson said: “The purpose of the care.data pathfinder pilot has always been to help NHS England with the testing and evaluation of patient literature and the process by which coded patient data might eventually be extracted from their GP medical records.
“Family doctors are as eager as patients to ensure that we get any process right and patients are provided with the necessary reassurance to know and understand that information from their medical records will continue to be kept safe, secure and confidential,” the spokesperson added.