LEAFLETS will be sent to every household in England as part of a new £2 million publicity campaign for the care.data programme.
All 22 million households in England will be sent an information leaflet throughout January 2014 at a cost of £1.2 million. Patients will then have four weeks to tell their GP if they would like to opt out before extraction begins. A further £800,000 will fund a public information helpline.
Under the care.data programme, patient information will be gathered from various NHS providers and forwarded to the Health and Social Care Information Centre (HSCIC) where it will be used by healthcare commissioners to assess the safety and quality of local services. The information can also be used by NHS organisations to plan and design better services.
The information extracted will be identifiable patient data from GP practices and hospitals. It can be shared in identifiable or anonymised forms to other parts of the NHS and to third parties such as researchers.
NHS England had previously indicated that GPs would be responsible for raising awareness of the scheme to extract and share confidential patient information.
A spokesman told Pulse in August that “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”. At that time GPs were to have around eight weeks to raise patient awareness before extractions would begin.
Extractions will now not take place until next Spring following consultations with GPs, patient groups and other interested parties.
But NHS England denies the awareness campaign represents a u-turn, saying they had “always been committed to raising awareness nationally as set out in GP guidance issued earlier this year.”
Chair of the HSCIC Kingsley Manning said care.data would bring “huge benefits” but that the scheme’s success depended on public support and understanding.
He said: “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.”
Dr Paul Cundy, chair of the BMA’s GP IT subcommittee welcomed the campaign. He 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 patient data is handled. It is vital that we ensure the public is fully aware about these proposals."
Cancer Research UK’s chief clinician Professor Peter Johnson said care.data would help “save lives”. He said: “Analysing NHS records will help us to understand the causes of cancer, including how to prevent the disease, how we can get people diagnosed and treated faster, and what happens to people who take part in our clinical trials.”