Six clinical commissioning groups in four areas of England have been selected to carry forward the government’s mammoth data sharing programme as it moves into the ‘pathfinder’ stage.
The scheme - which will see patient GP and hospital data linked, stored and shared within the NHS and potentially with third-party organisations - was put on a six-month hold earlier this year on the back of a public awareness fiasco and strong concerns over privacy issues.
Now, up to 265 surgeries housing 1.7 million patients across Hampshire, Blackburn and Darwen in Lancashire, Leeds and Somerset, will run care.data pilot schemes, testing various ways of communicating risks and benefits of the giant database as well as arrangements for opting out.
“Since February we have been listening to the views of the public, GPs and other important stakeholders to hear their concerns about data sharing,” noted Tim Kelsey, NHS England National Director for Patients and Information. “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”.
But there remains confusion and concern over what safeguards are in place to protect privacy, particularly given past instances of lost patient data.
Phil Booth, head of campaign group Med Confidential, told the media: “The basis of the programme is unchanged - identifiable medical information will be extracted from the GP record of every man, woman and child in England. This data will be centralised and made available in various forms to an open-ended array of organisations and companies for ill-defined purposes”.
The group is also concerned that NHS England’s announcement gave no details on which individual GP practices will be involved, no actual date for when the pathfinders will start, nor any information on what GPs and patients in these pathfinder practices will be told.
“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 is actually proposing,” it said in a statement.
Meanwhile, Pulse revealed this week that the Care Quality Commission will access GP records without patient consent under its new practice inspection regime.
CQC inspections teams - including lay members - will be able to review medical records as part of quality assessments without permission, but will allow them to be anonymised beforehand, according to the publication.