NHS bosses have backtracked on their insistence that GP practices are solely responsible for informing patients about the care.data progamme and have announced a major £2m publicity campaign on their plans to extract and share confidential data next year.
The publicity campaign – previously ruled out by NHS England in August and modelled on the information campaign for Summary Care Records – will involve sending information leaflets to all 22m households in England in a four-week leafleting campaign informing patients about the care.data data extractions plans during January 2014.
After the campaign, patients will have four weeks to tell their GP if they want to opt out of their personal medical data being forwarded on to the Health and Social Care Information Centre (HSCIC), before any extraction of patient data begins.
NHS England, which announced the move today together with the HSCIC, said the leaflets would clearly set out how care.data will work and how patients can opt out, while also setting out ‘the benefits it will bring’.
The GPC welcomed the change of heart of NHS managers, which comes after calls from GPC to be more transparent with patients about the ‘fundamental’ shift in how NHS will be using their data.
Care.data will see HSCIC routinely extracting identifiable patient data from GP practices and hospitals, which can then be shared in identifiable or de-identified forms to other sections of the NHS and to third parties, such as researchers.
But NHS England ruled out a national publicity campaign, saying ‘practices are responsible for ensuring patients are made aware of the changes and to direct patients to further information, which should be made available in the surgery’ and giving GPs approximately eight weeks to make patients aware before extractions would begin.
HSCIC chair Dr Kingsley Manning said that NHS managers had decided to roll out care.data ‘more slowly’ to allow GPs to fully inform patients.
He said: ‘The duty on the HSCIC to preserve and protect confidentiality and privacy is clear and we are determined to uphold it. The huge benefits offered by the development of care.data are also clear but can only be delivered in the context of public understanding and trust.’
‘Valuable feedback from doctors and members of the public has led us to decide to take this more slowly, in order to support GPs in discussing this with patients and to ensure the public in general is aware. We cannot achieve this transformation in enhanced knowledge of the effectiveness of health treatments without public support and understanding.’
GPC IT subcommittee chair Dr Paul Cundy – who called for a publicity campaign in Pulse earlier this year – said: ‘The BMA is extremely pleased that NHS England have announced a major national awareness campaign designed to raise awareness about changes to the way that patient data is handled. It is vital that we ensure the public is fully aware about these proposals.’
A spokesperson from the Information Commissioner’s Office welcomed the move: ‘It is a fundamental principle of the Data Protection Act that people are aware of how organisations may use or disclose their personal information. We expect all of the organisations involved to use the time between now and the Spring to make sure patients are aware of these changes, how their information will be used and how they can object to this if they wish to do so.
‘As the organisation with primary responsibility for their patients data, GP surgeries have an obligation to ensure that information about the use of their data is actively communicated to patients. They should satisfy themselves that the national and regional communications campaigns organised by NHS England, along with their proactive communication at a local level, ensures that, as far as practically possible, all patients are aware of these changes.’
Tim Kelsey, NHS England’s director of patients and information, said: ‘I believe the NHS will make major advances in quality and patient safety through the use of this data. At the moment, the NHS often doesn’t have the complete picture as information lies in different parts of the health services and isn’t joined up.
‘This programme will give NHS commissioners a more complete picture of the safety and quality of services in their local area which will lead to improvements to patient outcomes.’