Care.data information leaflets being sent to households in January will tell patients that an opt-out of the Summary Care Record scheme will not carry over to a new montly GP data extract.
Patients can opt out of both schemes if they wish, but must do so separately.
The care.data programme involves taking a large dataset from all GP practices covering patient demographics, events, referrals and prescriptions.
This will be linked with Hospital Episode Statistics and other data-sets to create new Care Episode Statistics, giving a more holistic view of patient journeys in the NHS.
Last week, NHS England announced a £2m public awareness campaign being run with the Health and Social Care Information Centre, which will involve a patient information leaflet being sent to 22m homes.
The leaflets will be sent in January and extractions will begin in spring next year, with new linked datasets flowing to commissioners from the middle of 2014.
Some GPs had expressed concern that the leaflet drop will coincide with patients being sent information about the SCR.
This is a completely different programme, which involves a limited patient dataset being uploaded to the NHS Spine where it can be viewed by emergency physicians involved in that patient’s care.
Additional guidance sent to GPs about their duties with regards to the care.data scheme, says: “it is important to note that if a patient has opted out of having a SCR then this preference will NOT automatically apply to care.data extractions. To make this clearer we have included a sentence in the patient leaflet, which will be sent to households.”
“If a patient wishes both to opt out of the SCR and to prevent confidential data from being used for wider purposes beyond their care, then GPs should apply both the SCR dissent code and the objection code detailed in the care.data guidance.”
The guidance says GPs are legally required under the Health and Social Care Act 2012 to provide the data requested to the HSCIC. However, they also have ‘fair processing’ responsibilities under the Data Protection Act, which mean they are must raise patient awareness about the scheme.
Practices have already been sent leaflets and posters to use in their surgeries to raise awareness, which NHS England says should be in visible locations such as the waiting area and washrooms.
GPs should use their practice website, newsletters and online appointment booking pages to inform patients and include information with repeat prescriptions, the guidance says.
They are also advised to use patient participation groups and consultation time to answer questions about care.data.
Some practices and groups such as the Emis National User Group have come up with alternative information materials about the new extract, which they feel better inform patients about what is happening to their personal information.
However, the new guidance says practices should “use the materials provided to them to ensure consistency of messages, they may supplement those with other materials providing they only convey the same messages”.
Under the rules of the General Practice Extraction Service, which is being used to deliver the patient data to the HSCIC, practices will also be able to review and agree the extract before it is sent to the HSCIC. Any extracts not agreed within a fixed time period will not be sent.
A Freedom of Information request submitted by Hampshire GP Dr Neil Bhatia to the HSCIC reveals that if a patient does not object before their data has been extracted, they cannot have this data removed, only retrospectively anonymised.