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More than just a number – the National Cancer Intelligence Network

by Kat Arney | Analysis

18 June 2008

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A model of the brainEvery single person with cancer has an individual experience and a story to tell but, statistically speaking, one is not enough. In order to study the impact of cancer, and measure improvements in treatment and survival, researchers need to collect information from as many people as possible.

Now a new initiative – the National Cancer Intelligence Network (NCIN) – has been set up to do this on an unprecedented scale.

 Here in the UK we already have access to some of the most comprehensive cancer statistics in the world, thanks in no small part to the work of the Stats Team here at Cancer Research UK. But there are significant gaps in our knowledge. For example, we have very little information about cancer in different ethnic groups or in teenagers, or about the stage at which cancers are diagnosed. Without this knowledge, cancer services can’t effectively target their resources to make the biggest impact.

At the moment, information about people with cancer is held by a number of sources. For example, medical records are kept by the NHS, while information about cancer incidence and deaths is collected by the eleven cancer registries across the UK (8 in England, and one each in Scotland, Wales and Northern Ireland). These are unique resources that, until now, have been largely untapped due to the sheer scale of the numbers involved – more than 280,000 people are diagnosed with cancer every year

The NCIN will bring together a staggering 22 million records of anonymised information about individual patients from these disparate sources, and compile them into the mother of all cancer databases. With such a wealth of data, there is the potential for some serious number-crunching.

Within a year, the NCIN hopes to have generated new data on ethnic origins and cancer, cancer in teens and one-year survival rates. And there’s also the shiny new Cancer E-atlas, an online clickable map that reveals cancer incidence and mortality (death) rates in different regions of the UK.

But technology like this doesn’t come cheap, and the NCIN’s £4 million budget has been funded by the Department of Health, Cancer Research UK, Macmillan Cancer Support, Breakthrough Breast Cancer, the Medical Research Council, the NIHR National Cancer Research Network and onCore UK. This roll-call of big names highlights the importance of large-scale information gathering, and the need for organisations to work together on such ambitious projects.

The ultimate goal of the NCIN is to improve care for people with cancer by spotting areas that are in need of improvement. It’s not a finger-pointing or league-table generation exercise; it’s about creating nothing less than the best cancer information service in the entire world and harnessing the power of the NHS for research.

The only way to truly understand the picture for cancer in the UK is to embark on this enormous piece of research because, to coin a phrase, sometimes one is simply not enough.