Controversial patient data collection programme care.data has been put on hold again while a review of the opt-out model is completed.
Four care.data pathfinders were due to start testing various materials related to the programme, starting with Somerset Clinical Commissioning Group, this month.
However, NHS England has written to the pathfinders to let them know the pilot testing cannot go ahead until Dame Fiona Caldicott has provided advice on the wording of the opt-out.
This follows a speech by health secretary Jeremy Hunt at NHS Expo in Manchester last week in which he announced a number of measures to assure the security of confidential medical information, saying: “The NHS has not yet won the public’s trust in an area that is vital for the future of patient care”.
He said Dame Fiona, who is the National Data Guardian for health and care, will provide advice on the wording for a new model of consents and opt-outs for care.data. This work is due to be completed by next January.
Somerset CCG said in a statement that NHS England wrote to all the pathfinders following the speech, asking them to temporarily pause their programmes.
Care.data is intended to extract data sets from different NHS organisations, starting with GP practices, and link this information to an expanded set of Hospital Episode Statistics within a data centre at the Health and Social Care Information Centre.
The programme got off to a false start in February 2014, when outcry from privacy groups about the lack of clarity on how patients could ‘opt out’ of the programme forced NHS England and the HSCIC to put care.data on hold while an effective communications plan was developed.
Four pathfinders, Somerset, Leeds, Blackburn and Derwent and West Hampshire were chosen to test newly created patient information materials before care.data is rolled out nationwide.
In Somerset, 56 of the county’s practices have volunteered to participate in the pilot and mail outs to patients were due to start at the end of this month.
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 news of Dame Fiona's review was welcomed by MedConfidential coordinator Phil Booth who said he has, "every confidence that Dame Fiona is more than capable of delivering a solution that respects everyone’s right to opt out, without confusing or misleading them.”