Real world evidence – the art of the possible
When most of the world went into lockdown in March due to the COVID-19 emergency, health services across the UK understandably repurposed activity to deal with an increase in COVID patients needing inpatient care and support. The worry for many working in the NHS, and scientists like me who deploy data to help inform the delivery of health services, was that patients with other potentially life threatening illnesses were staying away from their GP or hospital for fear of catching the virus. There was even talk that people were fearing a COVID-19 diagnosis more than a diagnosis of cancer. This nagging worry was based on anecdotal evidence of course – something that scientists never like to rely on. But at the time there was no data available to tell us whether it was actually true or not.
This was why DATA-CAN: The Health Data Research Hub for Cancer sought real world evidence – specifically in the form of real-time data direct from NHS cancer centres – to help us understand what was happening. Working with the UCL Institute for Health Informatics, we set about collecting real-time data from cancer centres across the UK to give us a detailed insight into the effect of the pandemic on cancer services and most importantly cancer patients.
There is a common misconception that data collection always needs to be complex, burdensome and requiring months of in-depth analysis to yield anything truly useful. However, a global pandemic clearly challenged the notion of waiting months for data as by that stage it would be too late.
We chose two parameters that we could measure on a weekly basis across the entirety of the UK, comparing our results with pre COVID-19 data so as to capture the direct effects of COVID-19 on both the diagnostic pathway and the treatment pathway of cancer:
- The ‘2 Week Waiting’ or ‘red flag’ referral time for cancer (our early warning system to confirm or dismiss the suspicion of cancer)
- Chemotherapy attendance (our proxy measure of the ‘health’ of the cancer treatment service).
During the lockdown period, we found that there was a 76 per cent decrease in urgent referrals from GPs for people with suspected cancers, and a 60 per cent decrease in chemotherapy appointments for cancer patients compared to pre-COVID-19 levels. We could also see that disruption was being felt across the entire cancer pathway, including a significant reduction in cancer research and clinical trials that many patients and clinicians rely on to deliver the best and most innovative care.
Worryingly, when we modelled our findings to look at excess cancer deaths caused by the pandemic, we found the impact to be significant with the potential for 7,165 to 17,915 additional deaths. But we can reduce this risk if we act quickly to restore cancer services
Our research and use of real world evidence has had significant impact and reach – demonstrating the art of the possible. In the UK, the results were shared with the UK’s four chief medical officers, as well as the national cancer director and SAGE committee, contributing to the decision to restore cancer services. Our modelling is still widely quoted in the mainstream media and recently at the Health and Social Care Select Committee in an evidence session with the health secretary Matt Hancock. Internationally, our work was presented to the World Health Organisation’s European annual meeting and other health systems are now following a similar approach of collecting and analysing real-time data.
Thankfully, recent data has shown that we have started to see some recovery in 2 week waiting times and chemotherapy appointments in health services. But the picture is mixed with some cancer types, such as lung, faring worse than others.
The commitments from the Government that cancer services should not be affected as we start to see a rise in COVID cases and hospital admissions is welcome. As is the national ‘Help Us Help You’ campaign to encourage people to seek medical attention for worrying symptoms.
I would like to emphasise this point – if you have any worrying symptoms such as a lump on your breast or blood in your pee or poo, please go to your GP as soon as possible so that you can be referred on to specialist services to confirm or deny the suspicion of cancer.
Cancer must not become the forgotten C in the COVID-19 crisis. DATA-CAN is putting all of its efforts into using real world evidence to make sure that this is not the case. Remember – data can save lives.