In our last blog post, we reviewed the emergence of collective intelligence in health including some promising projects that are helping to create new information solutions for people living with cancer and their clinical teams. Here we want to share a live research project that Nesta’s Health Lab and the Centre for Collective Intelligence Design are running in partnership with the National Cancer Registration and Analysis Service (NCRAS), to explore how we might use digital technology, data and collective intelligence design to reduce the number of people presenting with late-stage bowel cancer and increase survival rates.

The Routes to Diagnosis data set

Until a decade ago, we had limited understanding of the role of late diagnosis in England’s poor cancer outcomes. We didn’t understand why people present late with cancer symptoms, or why some people aren’t getting timely referrals for specialist diagnosis. Due, in large part, to the pioneering work of National Cancer Intelligence Network, which later became NCRAS (part of Public Health England), we can now make these links. NCRAS systematically collect data on every person with a diagnosis of cancer in England, encompassing information about them, their cancer, their treatment and what ultimately happens to them. NCRAS can also link this data with other datasets from the NHS to find out how a patient was diagnosed (whether they were referred from their GP or diagnosed in A&E), and to find out about the quality of their life after treatment. One of the world’s most comprehensive repositories of cancer data, NCRAS has the potential to provide unprecedented insight into the entire patient journey. Although much of the data is sensitive and personally-identifiable, NCRAS have made important strides over the past decade to open up some of their datasets to researchers, commissioners, professionals and the wider public*. Their awarding winning Routes to Diagnosis dataset is one example. With data from 3 million cancer patients over 10 years, it classifies eight different diagnosis routes, and includes data on each person’s age, ethnicity, location, socio-economic status and type of cancer. *In the case of personally identifiable data, release occurs under strict regulation for healthcare purposes only.

Diagram: screenshot of interactive tool on National Disease Registration Service website.

First published with data from 2006, and now collected and updated annually, the release of this data enabled the first associations to be made between how people got diagnosed and their survival rates. This was pivotal in proving the link between late diagnosis and survival rates. The data also revealed substantial regional and demographic variations in cancer survival across England, for example, showing that black men and women are more likely to die from bowel cancer than white men and women.

“This other category that we had not even known we were going to find, which was emergency presentations, it was nearly a quarter of all diagnoses coming through an emergency route. Politically, this was obviously seen as totally unacceptable and drove a whole load of initiatives and subsequently has driven metrics around the current cancer plan and cancer programme. One of the key metrics is now reducing the number of emergency presentations.” Sara Hiom, Director of Early Diagnosis and Cancer Intelligence, Cancer Research UK (from Unfinished Business, Health Foundation)

The problem of late diagnosis in bowel cancer

Source: Unfinished Business, Health Foundation.

Towards some solutions