Unlocking the power of real-time data – cancer and Covid-19
How the pandemic has impacted the diagnosis and treatment of cancer in the UK, by Professor Mark Lawler, Scientific Director for DATA-CAN: The Health Data Research Hub for Cancer.
The Covid-19 emergency put immense pressure on health services globally and across the UK. When hospital admissions for Covid-19 started to increase sharply earlier this year, and many feared that services would be overwhelmed, it was understandable that the NHS would repurpose activity and redeploy staff to deal with the crisis. During the early stages of lockdown, the often-repeated slogan “Stay at home, Protect the NHS, Save lives” was proving “successful” as the streets grew quieter and more people worked from home. However, the worry for many in the healthcare workforce was that the message was almost too “successful”, as it meant that patients with other potentially life-threatening illnesses were staying away from their GP or hospital for fear of catching the virus.
Real-time data
It was important to understand whether this nagging worry, based on anecdotal evidence, was a reality. 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, in a timely fashion, what was happening in our cancer services. Working with the UCL Institute of 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, on cancer patients.
We chose two parameters that we could measure on a weekly basis across 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. These two parameters were:
- The “two-week wait” (2WW) 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).
The data we collected was the first evidence of the adverse impact of the pandemic on cancer services and cancer patients in the UK. What it showed us was very worrying. During the lockdown period, there was an initial 76 per cent decrease in urgent referrals (2WW or red flag) from GPs for people with suspected cancers.
But what does this figure really mean? It means that seven out of 10 people with a suspicion of cancer were not getting referred to cancer specialist services to see if their suspicion was correct or not. We also found an initial 60 per cent decrease in chemotherapy appointments for cancer patients compared to pre-Covid-19 levels. In other words, six out of 10 cancer patients were not getting access to their chemotherapy during this potentially crucial period. We shared these data with the Chief Medical Officers in all four nations of the UK, with the National Cancer Director and with the SAGE committee. Thankfully, they acted collectively on this and other intelligence and moved to restore cancer services across the UK.
The disruption due to the Covid-19 pandemic was experienced across the entire cancer pathway in all four nations of the UK. In Scotland, Wales and Northern Ireland, screening services were formally “paused” during lockdown. Diagnostic services across all four nations were reduced, including a 28 per cent drop in CT scans, a 53 per cent drop in MRI and a 76 per cent drop in endoscopy. Across the UK, there was also a significant reduction in cancer research and clinical trials that many patients (and their clinicians) rely on to deliver the best and most innovative care. Around 30 per cent of clinical trials were disrupted in some way – in some areas this figure rose as high as 80 per cent. Previous research from us and others has highlighted the benefit of being treated in a research-active hospital or cancer centre, so the cancer research deficit during the pandemic was concerning.
We modelled our findings from the real-time data to look at what this could mean for mortality of cancer patients. Unfortunately, we found the impact to be significant. The team predicted that there could be the potential for between 7,165 and 17,915 additional cancer deaths caused by the direct and indirect effects of the Covid-19 pandemic.
We have made a lot of progress in cancer outcomes in the UK over the last decade. But we risk jeopardising this great progress due to the presentational, diagnostic and treatment delays highlighted by us and others, that have occurred during the pandemic and as services start to recover. It is critical that we continue to deliver optimal cancer care and conduct high-quality cancer research for our patients.
Thankfully, recent data have shown that we have started to see significant recovery in 2WW times and chemotherapy appointments across the health service. But the picture is mixed, with some cancer types, such as lung and colorectal cancer, faring worse than others. However, just getting back to normal isn’t good enough. The current data now suggest that we may need to be operating at 130 per cent of pre Covid-19 levels in order to address the backlog, the missing diagnoses and the delayed treatments.
The value of up-to-date intelligence
As we enter a second wave of increased Covid cases and hospital admissions, the commitment from the Government that cancer services should not be affected is extremely welcome but must be adhered to. As is the national “Help Us Help You” campaign to encourage people to seek medical attention for worrying symptoms, which we strongly endorse.
The Covid-19 emergency has proven the value of using real-time data to support health services and enable them to respond. There has been a common misconception that data collection needs to be complex, burdensome and requiring months of in-depth analysis to yield anything truly useful. The real-time data that we were collecting from cancer centres was, at the time, 12 to 14 weeks ahead of the national available data. The global pandemic clearly challenged the notion of waiting months for data, as by that stage it would be too late.
Real-time data has allowed us to see up-to-date intelligence, capturing not only the precipitous drop in urgent cancer referrals, but also the start of recovery of the urgent diagnostic and treatment pathways. It can also show regional variations across the UK which will be particularly important moving forward as the country is split into “tiers” of local restrictions which may impact on cancer services in different ways.
DATA-CAN is continuing to use real-time data to respond to the effects of the Covid-19 pandemic and develop informed solutions that can help mitigate the effects on cancer services. If used efficiently and effectively, data really can save lives.