CARE DATA

Care.data – extract from Health & Social Care Information Centre & NHS England

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 from England NHS (PDF, 780KB), 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, this 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 pseudonymised 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.