A new £4m NHS National Cancer Intelligence Network (NCIN), which will bring together around 22m NHS cancer records to create the largest patient-based cancer research resource in the world is to be created by the Department of Health and several cancer charities.
The project, which will be overseen by the National Cancer Research Institute (NCRI), was launched last week at a conference in London, attended by over 400 delegates.
Around 22m cancer records will be brought together by the NCIN, including records of multiple treatments for each cancer patient. The data will be held centrally, and researchers will be able to access anonymised data for research and scrutiny purposes.
Speaking at the launch, Professor Mike Richards, the government’s national cancer director for England, told E-Health Insider: “The NCIN will have access to the world’s most complete source of cancer data from a whole population. The project will harness the power of the NHS and the cancer registries to enable researchers to study more comprehensively than ever before the impact of cancer.
“The NCIN will scrutinise aspects of cancer that are poorly understood, helping to improve understanding of the disease and patient outcomes.”
Currently, cancer-related data collection focuses on recording diagnoses and deaths from cancer. NCIN aims to help GPs, clinicians and patients, better understand the cancer journey of each individual patient.
Head of the NCIN, Chris Carrigan, said: “The anonymised data will be used to raise the standards of cancer care by pinpointing areas of cancer services that need improvement.
Within a year, the NCIN will produce new and original figures on cancer – for example on cancer in different ethnic groups, teenagers with cancer and one-year cancer survival rates.
“This initiative will bring us an invaluable amount of information on the journey of each cancer patient. Monitoring treatments and patterns of care given to an individual patient is vital in helping us understand how best to deliver cancer services in the future.”
NCIN will merge anonymised individual patient data from cancer registries, hospitals and NHS data sets, initially focusing on England but with a view to integrating data sets from across the UK.
In addition, information that is already generated by teams of cancer specialists as part of ongoing patient management, but not routinely reported or collated into a more powerful resource by the NHS, will now be gathered and analysed by the network.
As the project develops, NCIN plans to make information available to the public, cancer patients and their families, in collaboration with other initiatives, such as NHS Choices.
Professor Sir Alex Markham, chair of the NCIN and the NHS Research Capability Programme, based at the Leeds Institute of Molecular Medicine, said: “Crucially, we will also gain a more accurate understanding of mortality rates, as we will now more usefully capture data on how far the cancer has progressed when the disease is diagnosed.”
The NCIN is currently funded by the Department of Health and charities including Cancer Research UK, Macmillan Cancer Support, and Breakthrough Breast Cancer. Once the NCIN is fully operational, funding for research projects will be provided by a range of other funders through normal scientific peer-review processes.
Harpal Kumar, Cancer Research UK’s chief executive, said: "The NCIN is an exciting project that takes advantage of the uniqueness of the NHS to drive improved outcomes in cancer. This is a project that would be virtually impossible anywhere else in the world. Cancer Research UK is delighted to be involved."
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