Case study: Data saves lives for people with bowel cancer

Introduction

Data from thousands of NHS patients is powering new research into better diagnosis and treatment of bowel cancer.

Based on work by clinicians and data scientists in Nottingham, data from patients across the East Midlands will soon be helping to speed up NHS care for those at greatest risk of the disease.

The issue

Every year, approximately 42,000 patients are diagnosed with bowel cancer in England and one million people undergo investigations for this type of cancer.

Earlier diagnosis means more people can receive life-saving treatment, increasing their chances of survival and giving them a better quality of life. It also means that those people with no risk or low risk of having cancer, can avoid unnecessary investigations. In Nottingham, all of this is being made possible, harnessing the power of the data contained in thousands of records of previous patients with the disease.

The Nottingham colorectal cancer testing pathway

For the last eight years, clinicians and data analysts at Nottingham University Hospitals NHS Trust (NUH) and their GP and university colleagues have been working to speed up the diagnosis for patients with symptoms of bowel cancer.

FIT testing is a non-invasive test, which looks for small amounts of blood hidden in the patient’s stools, which may be an early sign of cancer. Nottingham has pioneered its use nationally in patients with symptoms.

A pilot study in Nottingham - which looked at just under 1,000 patients - was one of the first clinical research studies to evaluate the use of FIT testing in patients with symptoms of colorectal cancer. The pilot showed that FIT testing is an effective predictor of those who have colorectal cancer.

 

Based on these results, FIT testing was introduced for all patients with symptoms referred to NUH with a suspected diagnosis of colorectal cancer.

 

This means that those most likely to have cancer (measured by the FIT test as people who have over 100 micrograms of blood in their sample) are referred automatically to specialists for further investigations.

To complete the diagnosis, patients undergo a colonoscopy. Those with a diagnosis confirmed by the colonoscopy then receive further investigations and the appropriate treatment, which could include surgery or radio/chemotherapy.

‘Real time’ data to improve the patient pathway

Since 2017, over 100,000 patients from Nottingham have had the FIT test included as part of their diagnosis. Alongside this, clinicians and data scientists have been analysing the anonymised data from the health records of these patients to build up a complete picture of how colorectal cancer affects the population at large.

Patients in the East Midlands will now benefit

The team at NUH are now working with colorectal cancer teams in NHS Trusts across the East Midlands, to understand if the Nottingham approach could benefit a much bigger population. To do this, they are working with the East Midlands Secure Data Environment, a new national approach to providing safe and secure access to NHS data for research purposes. The SDE enables detailed analysis of thousands of pieces of information held in individual health records.

Analysis on this scale would be virtually impossible without the SDE, which includes a number of safeguards to ensure that individual patients are not identified to the research teams. The team from Nottingham will be working with NHS Trusts across the East Midlands to analyse results from FIT tests, together with data covering diagnosis, treatment and post treatment outcomes.

Their ambition is to use the data to diagnose patients at an earlier stage so that they receive the appropriate treatment faster.

Using the SDE will enable the team to look at 250,000 records and to validate a risk stratification approach, which will enable patients to be fast-tracked for investigation and/or treatment. This tool could be used across the NHS, if the results from the East Midlands show its effectiveness.

It will also enable those who are no or low risk of developing bowel cancer to avoid unnecessary investigations, which are invasive and can be uncomfortable for patients, and enable valuable resources like CT scanning to be targeted at those patients who need them.

Sharing the benefits across the NHS

The next steps are for similar data - held by NHS hospitals in Sherwood Forest, Kettering General Hospital NHS Foundation Trust, University Hospitals of Leicester NHS Trust and University Hospitals of Derby and Burton – to be made available in the SDE. This will be the first time that researchers will be able to analyse and compare data from hundreds of thousands of patients in the region.

The East Midlands SDE is part of a network of SDEs across England, designed to provide safe and secure access to anonymised patient data held by the NHS. SDEs will collate large amounts of data ready for analysis in one place. The data – which will be anonymised before it is included in the SDE so that patients’ identities are protected – together with a range of analytical tools and expert support, will revolutionise how the NHS uses health data in research to tackle major health challenges.

How the Nottingham research is changing care for patients

Meanwhile in Nottingham, clinicians and patients are already seeing the practical benefits of using data from thousands of people to understand the best ways to diagnose and treat diseases such as bowel cancer.

A range of data including the endoscopy report, blood tests and cancer outcomes helps to visualise and run the pathway in Nottingham. This means the clinicians can see all of the patients’ relevant investigations to ensure they are quickly investigated and diagnosed.

The clinical specialist nursing team will soon be able to access the same data. This will enable them to monitor factors including the number of patients with over 100 micrograms of blood in their samples, and which patients have been discharged.

It means the team can be freed up from administrative tasks and see patients’ results faster, rather than having to manually chase these results up, meaning patients receive their result quickly.

The innovative use of data means the team can see everything that has happened to the patient along their “bowel cancer” journey at NUH. 

“Data is key to the project,” said Mr David Humes, Consultant Colorectal Surgeon at NUH and Associate Professor of Surgery at the University of Nottingham. “It allows us to ensure the safety of the pathway, that we are diagnosing the right patients with cancer and to look at how we can develop the pathway and alter it, making sure the right patients get the right investigations.”

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