NHS England and the Health and Social Care Information Centre (HSCIC) today set out the next steps to raise public awareness about care.data – a programme that will use information to improve the safety and care of patients.

NHS England, together with the Health and Social Care Information Centre, announced that throughout January, all 22 million households in England will receive a leaflet explaining how the new system will work and the benefits it will bring.  The leaflet drop is the next stage of NHS England’s public awareness plan and follows wide consultation with a range of stakeholders including GPs and patient groups.  The leaflet will cost about eight pence per household, or around £1 million in total, and will clearly set out how peoples’ information will be used and their right to object if they have concerns.

The NHS treats about one million people every 36 hours, collecting a vast amount of information about how patients have been treated and what their outcomes have been. At the moment, this information is held separately across the NHS.

For the first time, the care.data programme will link information from different NHS providers to give healthcare commissioners a more complete picture of how safe local services are, and how well they treat and care for patients across community, GP and hospital settings.

The information can also be used by NHS organisations to plan and design services better, using the best available evidence of 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, as the designated ‘safe haven’, will extract data routinely from all GP practices as well as hospitals. The data will be brought together in using automated systems in the secure environment of the HSCIC.  After being linked together, the information is 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.”

Everyone making healthcare decisions needs access to high quality information: clinicians need it to inform their decision making; patients need it when deciding which treatment option is best for them; and commissioners need it when making decisions about which services are right for their populations.

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.”