DATA-CAN – harnessing, enhancing and using cancer datasets for research and improved patient outcomes

DATA-CAN - harnessing, enhancing and using cancer datasets for research and improved patient outcomes

One in two people will get cancer during their lifetime, and every year, almost 400,000 new cancer cases are diagnosed in the UK. Cancer costs the NHS £7 billion annually. This year, researchers at the Leeds Institute for Data Analytics (LIDA) looked at the impact of the Covid-19 pandemic on cancer services and how health services can respond to help minimise the impact on patients.  

When the UK went into lockdown, and the NHS quickly reorganised services to focus on Covid-19, researchers realised many patients with cancer would be affected.  Working with DATA-CAN: The Health Data Research Hub for Cancer and the UCL Institute for Health Informatics, LIDA researchers helped to collect near real-time data from eight major cancer centres and hospitals in the UK, including Leeds, to analyse the effect of the pandemic on cancer services and patients as it was happening. The advantage of looking at real-time (or ‘near’ real-time) data is that you can continue to monitor the situation as it is unfolding and use that information to shape the response for early intervention.  

These datasets allowed them to track changes in urgent cancer referrals and chemotherapy delivery across the UK as a result of the pandemic. In addition, they estimated the risk of death for people with cancer during the pandemic according to their type of cancer and the impact of underlying health conditions.  

Geoff Hall, Professor of Digital health and Cancer Medicine within the Leeds Institute of Medical Research at St James’s and one of DATA-CAN’s clinical leads, said, “At Leeds we have detailed diagnosis, treatment and outcome data on every cancer diagnosed since 1990. The Leeds dataset is one of the best in the UK and beyond. When the country went into lockdown due to the Covid-19 global emergency, we decided to pivot our analysis to look at cancer patients and cancer services in the UK.” 

From the data, the team modelled different outcomes depending on how long services take to get back to normal levels and suggest there could be between 7,000 and 18,000 additional deaths in cancer patients over the next 12 months.  

“The Covid-19 emergency has had a profound impact on cancer patients, not just now, but potentially for the next 1, 2 years and beyond. Cancer is a progressive disease. It doesn’t disappear, it just presents later. And when it presents later it may be at a more advanced stage, which may have serious implications for a patient’s outcome” says Professor Hall.  

This work will help the NHS to better understand the cancer situation across the UK and effectively prioritise tests and treatments for those most at risk as the effects of the pandemic continue over the months to come. The research has highlighted that getting back to normal levels will not be enough to prevent extra deaths and that cancer services will need to operate above pre-Covid levels in order to address the backlog of cases, missing diagnoses and the delayed treatments.  

Professor Hall adds that this research has shown that we need to, “…run Covid and cancer services in parallel. When people were told to stay at home, they stayed at home. The delivery of cancer services is a three-way partnership – the GP, the hospital and the patient. The GP and the hospitals are ready, but we need to ensure the patient is getting the message that they need to seek medical attention for worrying symptoms.” 

The researchers shared their findings with BBC Panorama and the programme highlighted the difficulties the Covid-19 pandemic is causing for people living with cancer.  

The University of Leeds is a founding partner of DATA-CANThe Health Data Research Hub for Cancer. One of eight Health Data Research UK data hubs, DATA-CAN aims to make high quality health data more accessible for cancer researchers and health professionals, to help them carry out research into new diagnostic tools and treatments to improve care for people with cancer. 

 Further information 

 To find out more about DATA-CAN visit www.data-can.org.uk  

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