The UK statistics on bowel cancer are clear. It is the fourth most common cancer in the UK, with over 41,000 new cases each year. Just under 16,000 people die each year from the disease, making it the second most common cause of cancer death.
But behind these numbers lies another story – that diagnosis, treatment and outcomes from bowel cancer vary significantly across different parts of the country and different groups of people. To change this, to ensure that everyone receives the best possible care and has the best possible outcome, is no easy feat, with so many complex variables involved. To see where change is needed to reduce inequalities and improve survival requires drilling down into data on thousands of bowel cancer patients. This is what LIDA’s Bowel Cancer Intelligence UK (BCI UK), led by Professor Eva Morris, aims to achieve.
The data do exist – on waiting times, GP appointments, hospital records, clinical trial outcomes, pathology reports, screening programmes, genetic analysis, radiotherapy and chemotherapy treatments, diagnostic tests, mortality rates and disease recurrence, to name but a few. To link all these data together at patient level, so they can be cross referenced and analysed, poses one challenge. But just as importantly, the project must also ensure the datasets remain secure and patient confidentiality is respected.
The combined data will be held by the National Cancer Registration and Analysis Service, part of Public Health England. The BCI UK team are creating and running algorithms that enable these datasets to be linked to create an anonymised version that can then be made available for research use and reporting, subject to the necessary stringent approvals. Some of the datasets for England have already been linked, and – with funding from Cancer Research UK (CRUK) – more are now being added by the BCI UK team, to create to the Colorectal Cancer Repository, or CORECT-R. When this includes data from all nations within the UK, it will be the most comprehensive and robust source of colorectal cancer information available worldwide.
“The data are already – and will remain – in an extremely secure environment,” says BCI UK Programme Manager, Paul Affleck. “Our job is to make it accessible for research, in an anonymised form and subject to strict approvals. We also want to make key data available to patients to make informed choices, reduce their risk of disease and access the best care.”
John Barnes was diagnosed with bowel cancer in 2000. He’s now a member of the Programme’s Patient-Public Group, helping to make decisions as to how the data are used. “There’s a lot of fear of data misuse, but much of this comes from misunderstandings,” he says. “What’s most important is the opportunities the data provide to improve the outcome of people’s health. This research won’t be gathering dust on a shelf, and that’s what motivates me to be part of it. The evidence we get from the data will have the power to change things.”
CRUK is also funding the first research using the combined datasets. Project teams from BCI UK are analysing data on colonoscopy and screening to determine the causes behind late diagnosis, which greatly reduces survival. Other research includes analysing variations in outcome linked to factors such as age, socio-economic status, location and sex.
A further BCI UK project, supported by Yorkshire Cancer Research, is using the datasets to analyse differences in bowel cancer management and outcomes across Yorkshire and the Humber. The researchers are working with cancer teams within regional hospitals, using the findings to implement changes that can ensure the highest standard of care.
Find out more on the BCI UK website.