Greater transparency and better use of data to improve the quality of patient care are ambitions we can all support. Anyone making healthcare decisions needs access to high quality information: doctors need it to inform their clinical decision making; patients need it when deciding which treatment is best for them; and commissioners need it when making decisions about which services are right for their populations.
Care Data is a new service being developed by NHS England which aims to achieve this ambition by providing timely, accurate information to citizens, clinicians and commissioners about the treatments and care provided by the health service. As a first step, data from GP systems will be linked to Hospital Episode Statistics (HES). The technical specification document, www.england.nhs.uk/wp-content/uploads/2013/05/ces-tech-spec-gp-extract.pdf, provides details of the data to be extracted from GP systems. These data items have been reviewed by a clinical expert group, which included representatives from both the British Medical Association (BMA) and Royal College of General Practitioners (RCGP). In addition, the proposal has been reviewed and approved by the General Practice Extraction Service Independent Advisory Group.
These changes must not threaten the confidential nature of the health service. While personal confidential data from GP systems will be extracted, these data will be linked in the secure environment of the Health and Social Care Information Centre (HSCIC), which operates to the highest technical and security standards. Only aggregated or pseudonymised1 data will be shared from the HSCIC in the first release. If there are any changes to the dataset, or to the nature of releases, these changes will be subject to the same robust review process and GP practices will be informed. Disclosures from the HSCIC will only ever occur where there is a legal basis.
While many patients will be content for data to be used for purposes other than direct care, we recognise that some patients may have concerns. The Secretary of State for Health has given a commitment that for extractions of personal confidential data from GP records to the HSCIC, patient objections will be respected in all but the most exceptional of circumstances. NHS England, the BMA, HSCIC and the RCGP have worked collaboratively to produce guidance and FAQs on care.data. These materials are intended to support GP practices in raising 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.
GP practices will receive a separate communication containing links to resources and guidance and an information pack containing patient information materials. It is important that when practices receive this information they display the poster and make leaflets available in the practice without delay as extractions will begin approximately 8 weeks after they receive the materials. Additional supporting activity to help raise awareness is being planned at a regional and national level.
GP practices will be informed in advance of any care.data extract taking place. GP practices do not need to take any action until they are contacted. At this time, if you have any remaining questions you can contact the HSCIC Contact Centre, who are acting as a helpline for GPs, by calling 0845 300 6016 or emailing email@example.com quoting ‘Care Data – GP’ in the subject line.
We value the support of practices in raising patient awareness of these important changes.
Patient FAQ's (.pdf)
Care Data Poster (.pdf)
Care Data Patient Information Leaflet (.pdf)