Care.data (How Patient Information May Be Shared)
What is Care.data?
The NHS is changing and services are being restructured. These reforms will impact upon the way that clinical data are collected, shared and analysed. Under the powers of the Health and Social Care Act 2012 (HSCA), the Health and Social Care Information Centre (HSCIC) can, under certain circumstances, require Personal Confidential Data (PCD) from GP practices without seeking patient consent. One of the first initiatives using these new powers is the care.data service. This service has been commissioned by NHS England and will be delivered by the HSCIC. The HSCIC is England’s central authoritative source of health and social care information (see FAQ below for further information).
Care.data will make increased use of information from medical records with the intention of improving healthcare, for example by ensuring that timely and accurate data are made available to NHS commissioners and providers so that they can better design integrated services for patients. In the future, approved researchers may also benefit. The HSCIC will link PCD extracted from GP systems with PCD from other health and social care settings.
The BMA supports the use of patient data for secondary purposes, including commissioning, and recognises the importance of greater transparency and more intelligent use of data to improve the quality of care delivered to patients. Achieving these aims must not undermine existing high standards of confidentiality.
NHS England has made a commitment that personal confidential data will not be shared unless there is a legal basis or an overriding public interest in disclosure.
What data will be extracted?
The dataset to be extracted from GP systems for the care.data service includes personal confidential data such as referrals, all NHS prescriptions and other clinical data. Identifiers (DOB, postcode, NHS number and gender) are required by the HSCIC to link the GP data with PCD from other care settings, e.g. hospitals, in order to analyse patient care across pathways. Free text will not be extracted for care.data. A technical specification has been published which provides full details of the data to be extracted. The extraction will be on a monthly basis, prospective from April 2013, using the General practice Extraction Service (GPES). Once linked, the data will be stored at the HSCIC in a secure environment with the highest standards of information governance and technical expertise to protect the data.
The dataset has been considered by a clinical informatics expert group, which included representatives from the British Medical Association (BMA) and the Royal College of General Practitioners (RCGP). The group was satisfied that the dataset seemed appropriate for commissioning. Any future changes to the dataset or to scope will be subject to review by the group and GP practices will be informed of any alterations. The care.data proposal was also reviewed and approved by the GPES Independent Advisory Group (IAG).
What data flows can a patient object to?
Care.data is one of a number of flows of PCD from GP practices. Some disclosures of PCD are well established (e.g. for health research that is in the public interest and has special approval under section 251 of the NHS Act 2006). Patients have the right to object to any extraction of PCD from the GP practice unless there is (a) a statutory duty to share information, (b) a court order or (c) an overriding public interest in disclosure. The Secretary of State for Health, however, has given a commitment that, for extractions of PCD from GP records that are to be sent to the HSCIC, patient objections will be respected.
In addition to controlling whether PCD flows from the GP practice to the HSCIC, patients have a right to object to PCD from any health and social care setting (e.g. hospital data) leaving the HSCIC. In general, such data will only be made available to accredited third parties in anonymised, pseudonymised or aggregated form. PCD may flow from the HSCIC where there is a legal basis, for example to researchers or commissioners who have section 251 approval, however patients can object to this as indicated below.
Recording a patient objection
GP practices are best placed to manage patients’ objections in relation to how PCD are processed. GPs can control the extraction of such PCD by entering appropriate codes into the GP record.
The default position for all patients is that PCD will leave the practice where there is a legal basis; i.e. under the powers of the HSCA or a section 251 approval. No codes need to be entered in the record, these extracts will happen automatically.
Where a patient objects to the extraction of their data, the practice will use codes to:
- Prevent PCD leaving the GP practice
- Prevent PCD leaving the HSCIC
Patients can change their minds and reverse a previous objection at any time.
If you have any objections to your data being used in this way then please let your surgery know, either at reception or by speaking to your GP. The practice will then enter the necessary codes onto your record to prevent any data transfer.
For further information please click on the links below:
NHS Choices Care Data page
Patient Information Leaflet