GPs have called for patients to be able to opt in to their data being extracted from GP practices as part of care.data.
At the British Medical Association’s Local Medical Committee conference last week, two thirds of GPs voted in favour of an opt in system for the controversial programme.
Care.data will see patient information extracted from GP systems in monthly datasets and linked with other datasets within the ‘safe haven’ of the Health and Social Care Information Centre.
It will then be made available to researchers and others, with patients given the chance to opt-out, following an information campaign. At the moment, extracts are on hold because of concerns about the scheme.
Dr Christine Harris from Bedfordshire LMC, who proposed the motion, said that the data should not leave the GP practice without the “explicit consent of patients opting in.”
She said that without clear information on how the data will be used, the public would lose confidence in the NHS.
“Confusion around how data will be collected and stored, and how it may be used, has alarmed the public as much as the profession,” she said.
She added that GPs have been left in an impossible situation, because they have a duty to make sure that patients’ personal data is handled transparently, while patients expect them to keep their confidential information private.
“GPs are placed in a Catch 22 situation. Without an explicit waiver saying that GPs are not data controllers when mandated by the centre to release the data, they will break one act while complying with another,” she said.
The care.data programme launched a leaflet drop in January last year to inform patients on the planned extractions.
However, the campaign was criticised for its lack of information and opt-out form, and NHS England announced a six month delay, so that no extracts will start until this autumn. NHS England also launched a re-engagement programme to get the public on board.
The programme will now begin with a pilot of between 100 and 500 GP practices to trial, test, evaluate and refine the collection process ahead of a national roll-out.
Tim Kelsey, NHS England's director of patients and information, said last month that care.data will not “subscribe to artificial deadlines” for the extractions.
Another issue has been around the data leaving the GP practice in identifiable form and calls for pseudonymisation of the data at source.
Dr Hasib Ur-Rub, chair of the Emis national user group, and a Bromley GP, said that extraction without patient consent without patient consent “for non-direct patient care is simply wrong”, but that if the centre would implement pseudonymisation at source, it would alleviate many worries.
Kelsey said earlier this year that the technology to do so is not ready. However, EHI reported last month that the HSCIC has instituted a review of the pseudonymisation techniques available to see if any of them are suitable for the programme.
The LMC conference will inform Kelsey of the vote taken by GPs.