Last reviewed 29 October 2013

NHS England has announced a £2 million publicity campaign to inform patients about the “care.data” programme, which will involve extracting and sharing confidential patient data next year.

The introduction of the care.data programme has been delayed after opposition highlighted the need to make patients better informed of the changes to the way their data will be used. It will now be from January 2014 that the Health and Social Care Information Centre (HSCIC) will commence routinely extracting identifiable patient data from GP practices and hospitals, which can be shared in identifiable or de-identified forms to other parts of the NHS and to third parties such as researchers.

The four-week campaign will involve sending information leaflets to all 22 million households in England. They will clearly explain how care.data will work and how patients can opt out, while also setting out the benefits it expects to bring. After this, patients will be given four weeks to inform their GP if they want to opt out before any extraction of patient data begins.

NHS England director of patients and information Tim Kelsey said he believed that the NHS would make major advances in quality and patient safety through the use of this data. He said: “At the moment, the NHS often doesn’t have the complete picture as information lies in different parts of the health services and isn’t joined up. This programme will give NHS commissioners a more complete picture of the safety and quality of services in their local area, which will lead to improvements to patient outcomes.”

NHS England had previously dismissed carrying out a campaign, saying: “Practices are responsible for ensuring patients are made aware of the changes and to direct patients to further information, which should be made available in the surgery. This is important to meet fair processing responsibilities under the Data Protection Act.

“This means they need to inform patients of which data they are required to share and also to provide details of how patients can raise an objection if they wish to stop their information from being used in this way.”

The British Medical Association (BMA) general practitioners’ committee welcomed the change in approach, following calls from the union for the Government to be more transparent with patients about the “fundamental” shift in how the NHS will be using their data.

Patient Concern co-director Roger Goss argued before the campaign announcement: “Unless every household is notified, Jeremy Hunt’s promise of the right to opt out will be meaningless. Putting the responsibility entirely on GPs, without central funding to notify every practice patient, won’t work. GPs are too pressed both financially and time-wise to cope with this additional work — especially as it is going to undermine and make their relationships with their patients more difficult and stressful.”