Care.Data Service - Patient Information
We have received calls from patients concerned about what they believe is a new system by which their medical records can be used for "research" or other purposes without their permission. We thought it would be useful to clarify about how data about your care can be extracted and used.
The Care.Data service is a new service created by the Government via the Health And Social Care Information Centre (HSCIC).
The Health and Social Care Act 2012 (HSCA) empowered the HSCIC to require providers of NHS care to send it confidential data in limited circumstances i.e. when directed to do so by the Secretary of State for Health, NHS England or when receiving a mandatory request from the Care Quality Commission (CQC), NICE or Monitor. The HSCIC will process the confidential data in a secure environment and can only release confidential data where there is a legal basis.
Data about some aspects of your care can be extracted directly from GP Practices and sent directly and securely to the HSCIC.
What data will GP practices be required to extract for care.data?
The data to be extracted from GP systems for care.data includes information such as family history, vaccinations, diagnoses, referrals, biological values (such as blood pressure, BMI and cholesterol with QOF exceptions codes) and all NHS prescriptions.
Identifiers (DOB, postcode, NHS number and gender) are required to link the GP data with PCD from other care settings in order to analyse patient care across pathways. Free text will not be included in the extraction.
Can patients object to the disclosure of data from GP practices to the HSCIC?
Yes. As set out in the NHS Constitution, individuals have a right to object to the disclosure of data and a right to have any reasonable objections respected. The Secretary of State for Health has also given a commitment that in relation to data held in GP records, individuals’ objections to disclosure to the HSCIC will be respected other than in exceptional circumstances (e.g. in the event of a civil emergency)
A patient can inform their GP of their wishes to object –there is no need for the patient to demonstrate damage or distress. Section 10 of the Data Protection Act 1998 (DPA) does not apply; the right to object has been implemented as a constitutional rather than a legal right.
What to do if you do NOT want your data to be used by Care.Data
Simply ring or write to the practice and explain that you wish to "opt out" of having your data included in the Care.Data process. We will then place a code in your record that ensures your data is not included.
What to do if you want more information ?
A leaflet about the Care.Data service is available from your practice.