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Publicity campaign launched on care.data

NHS England denies decision is a U-turn

Jo Carlowe

Wednesday, 16 October 2013

NHS England and the Health and Social Care Information Centre (HSCIC) is to launch a £2m publicity campaign to raise awareness about care.data.

Throughout January, all 22 million households in England will receive a leaflet explaining how the system will work. The leaflets will cost about 8p per household - around £1.2 million in total. The leaflet will set-out how patients’ information will be used and their right to object if they have concerns. A further £800,000 will fund a public information/helpline.

After the campaign patients will have four weeks to tell their GPs if they want to opt-out and not allow their personal medical data to be forwarded to HSCIC.

NHS England denies the decision to launch a campaign is a U-turn, despite reports claiming NHS England had ruled out this decision in August allowing responsibility to fall entirely on GPs to inform patients about the change.

NHS England told OnMedica: “There have been a number of activities at national, regional and local level for some time. Over the summer, NHS England tested messages with GPs and patient groups and their feedback was incorporated into revised materials for the GP information pack. This has now been sent out to all GP practices in England to help them begin the process of awareness with patients.

“NHS England has always been committed to raising awareness nationally as set out in GP guidance issued earlier this year.”

The British Medical Association has welcomed today’s announcement of a full campaign. The General Practitioners Committee has long called for more transparency with patients about how the NHS would use their data.

Dr Paul Cundy, chair of the BMA’s GP IT subcommittee 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."

The care-data programme will link information from different NHS providers and can also be used by NHS organisations to plan and design services based on which treatments and services have the greatest impact on improving patients’ health.

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. 

“To do this, we will need to link data. The HSCIC has been handling hospital data securely in this way for decades. The system is designed to be extremely secure, with a suite of safeguards to protect confidentiality. But we know not everyone will feel comfortable and we want to make sure they know they have the right to say ‘no’. Patient confidentiality is non-negotiable.”

The HSCIC, will extract data routinely from all GP practices as well as hospitals. After being linked together, the information will be made available in a form that is stripped of information that could identify patients.

Kingsley Manning, Chair of the Health and Social Care Information Centre, 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.”

Commenting on the campaign, Professor Peter Johnson, Cancer Research UK’s chief clinician, said: “Using patients’ data for cancer research can saves lives. 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. 

“Of course it is vital that everyone understands how their data might be used and we must make sure that there are rigorous safeguards in place to keep patients’ data stored securely and used appropriately. Under these plans, people will know they still have the choice to object if they do not want their medical data being shared for research purposes.”

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