16.10.13
Patient information to be shared with care.data
The Health and Social Care Information Centre (HSCIC) and NHS England are launching a public awareness campaign about care.data – the new programme that will link patients’ data together to boost care.
Throughout January 2014, all 22 million households in England will receive a leaflet explaining how the new system will work and what benefits it will bring. The £2m campaign follows concerns over confidentiality and patient awareness of the scheme.
The programme will begin four weeks after the consultation, when data from different NHS providers will be brought together to give commissioners, CCGs and CSUs a more complete picture of the health challenges in each region, and to plan and design services using the best evidence.
HSCIC will routinely extract data from all GP practices and hospitals, with the information made available in a form that is stripped of information that could identify patients. This will include information about diagnoses, investigation results and prescriptions, but not ‘sensitive’ information including marital status, complaints, abuse and convictions.
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.”
Kingsley Manning, chair of the HSCIC, 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.”
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.”
NHS Confederation chief operating officer Matt Tee said: “It's difficult to overstate the importance of information and data for delivering safe, high quality care to patients, and for helping staff to improve care on a daily basis. The right data at the right time – in the right hands – really can save lives. This is why we have recently undertaken an extensive review of bureaucracy in the NHS, so we can ensure the right people have the right information at the right time.
“For the NHS to work properly, it is essential clinicians and services can share data when and where necessary, and so we are clear that care.data has the potential to add significant value to the NHS and its work.”
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