Care.Data Programme

The Health and Social Care Act 2012, empowers NHS England to direct the Health and Social Care Information Centre to collect information from all providers of NHS care, including general practices. Under the Care.data Programme, GP information is to be extracted via the General Practice Extraction Service (GPES) and practices have a contractual obligation to participate, so cannot opt out of the programme and should not opt out patients unless specifically requested to do so by the patient.

While the roll-out of the Care.Data Programme, which was due to commence in Spring 2014, has been delayed, GP practices are advised to continue to process and appropriately code opt-out requests received from patients on the basis that these are the result of an informed decision by patients who have taken the opportunity to understand the implications of the programme.

Practices should be wary of the potential for confusion between the Care.data Programme and the SCR, although the two do have entirely different purposes. Dissent to participate in the programmes needs to be coded separately.

Only where a clear instruction to do so has been received from the patient (or responsible adult), should an opt-out be entered in the patient’s notes.

Practices may make it easy for patients to record their dissent, eg by accepting telephone calls or emails as well as paper copies, as long as there is an audit trail.

As GPs are the responsible data controllers for the medical records held at practices, they need to make sure patients are aware that their data may be extracted.

Practices should make information available in reception areas, waiting rooms, on websites, etc. and should ensure they use the publicity material about the Care.data Programme provided by NHS England as this has been agreed by the Information Commissioner’s Office. More information on the materials available can be found via the NHS England Care.data Toolkit.

NHS England Care.data GP Toolkit

The toolkit provides materials to help GP Practices raise patient awareness and to ensure that GP practices know what to do if a patient objects to the use of personal confidential data beyond their direct care.

Further information for GP practices:

Guide for GPs FAQs (NHSE/BMA/RCGP/HSCIC January 2014)

Additional Guidance for GP Practices (HSCIC/NHS October 2013)

Care.data Guide for GP Practices (August 2013)

Care.data Patient Awareness GP Practice Checklist

Information for patients:

Available on NHS Choices.

Care.data leaflet (NHS January 2014)