In late 2019, we launched DATA-CAN—the UK’s Health Data Research Hub for Cancer—with a clear mission to enhance human health and wellbeing and deliver economic benefit, through the power of data. But then COVID hit and for me, it was personal.

On 29 March 2020, my uncle, John Gallagher (a community worker, activist, conservationist, politician, and loyal soccer supporter) became one of the earliest victims of the COVID pandemic in Ireland. A national lockdown and health restrictions meant that none of our family or any of his many friends and colleagues over the 87 years of his life, were able to attend his funeral. Even we, as his closest living relatives, had to watch his sad and lonely journey in the hearse to the cemetery online, his only companions the staff of the funeral home.

John Gallagher
John Gallagher was a community worker, activist, conservationist, politician, and loyal soccer supporter

Five years on, we finally got to celebrate my uncle’s life, with his many former colleagues and friends, in a special event that took place in City Hall in Dublin, Ireland recently.   But, a chance remark from a colleague following my uncle’s untimely death led to a body of ground-breaking, award-winning research. The research and its impact have resonated globally, shaping and influencing national and international cancer policy, which has made it possible for me to constantly remember and pay tribute to my uncle.

A disturbing discovery

As the health data community in the UK know, by profession I’m a cancer researcher and Professor of Digital Health at Queen’s University Belfast and I co-lead HDR UK’s Big Data for Complex Disease Driver Programme, a data-rich research programme with a particular emphasis on cancer and cardiovascular disease and their intersect, with my wonderful colleague Professor Angela Wood  (University of Cambridge).

But back in 2020, a colleague of mine—Professor Eduard Vrdoljak, an oncologist based in Split, Croatia—reached out online to sympathise with me after my uncle’s death and said something that chilled me to the bone. The people he was seeing in his oncology clinics in Croatia were “fearing a COVID diagnosis more than a cancer diagnosis.” His comments greatly unsettled me.

My colleague and great friend, Professor Richard Sullivan (King’s College London), agreed Eduard’s statement required urgent investigation. Professor Harry Hemingway (UCL),  another colleague of mine, asked myself and my DATA-CAN colleagues, Professor Charlie Davey (UCL Partners) and Professor Geoff Hall (University of Leeds) if we thought it was worth looking at the impact COVID might be having on cancer.

Shaping national and international cancer policy

Coming together as a UK-wide “coalition of the willing”, we rapidly established a research study—led by Harry’s excellent colleague Dr Alvina Lai from UCL—in order to determine whether Eduard’s statement was correct. We examined, in near real-time, data that we rapidly collected prospectively on a weekly basis from UK hospital trusts.

The data intelligence that we uncovered disturbed us greatly. From a diagnostic perspective, seven of 10 people who presented to their GPs with symptoms that were suggestive of cancer didn’t actually get to see a cancer specialist, either because they were afraid to go in to the hospital in case they caught COVID (echoing Eduard’s statement), or because cancer services were disrupted and they could not get an appointment with a specialist.

From a therapeutic perspective, four out of 10 cancer patients didn’t receive their chemotherapy at the correct time—not as bad as the diagnostic delay but still pretty disturbing. Collectively, the results were very worrying, prompting us to immediately contact the Chief Medical Officers from each of the four UK nations to share our data and concerns. This data represented the UK’s first direct evidence of COVID’s impact on cancer patients and cancer services. Subsequent work we performed and published both confirmed and advanced our initial observations. Studies include (Sud et al., 2020), (Loveday et al., 2020), (Ho et al., 2021), and (Banerjee et al., 2022)

Soon after our initial study, we were contacted by the European Cancer Organisation (ECO),  with a request to present our research to their Board. The ECO Board were so taken aback by our data that they immediately set up a Special Network on COVID’s impact on cancer and asked me to co-chair; a great privilege which I was delighted to accept. One of the first priorities that we actioned was to develop and implement a protocol to perform a “deep-dive” on European data, to determine whether the same impact we observed in the UK could also be seen in Europe.

Time to Act

Our results were devastating. Due to the pandemic and national lockdowns:

  • more than 100 million cancer screening tests were not performed.
  • at least one million cancer diagnoses were missed.
  • chemotherapy treatments and surgical activities dropped to 50% of capacity.
  • four out of 10 cancer health professionals were completely burned-out.
  • three out of 10 cancer professionals exhibited some signs of clinical depression.

Recognising the disastrous impact revealed by data intelligence, we developed a #TimeToAct campaign with the strapline “Don’t Let Covid Stop You From Tackling Cancer.”  The campaign was launched in 12 countries across Europe and translated into 32 languages, with Ministers’ of Health, cancer charities, patient advocacy groups, and other stakeholders involved.

#TimeToAct’s impact has been far-reaching and the award-winning campaign has been enthusiastically adopted across Europe; European Commission President Ursula Van Der Leyen and Health Commissioner Stella Kyriakides regularly quote our COVID and cancer data, while Europe’s Parliamentary COVID-19 Committee adopted our key recommendations and highlighted them in its influential .

Five years on, while I still miss my uncle, I definitely feel that his death was not in vain, given the impactful international research that his passing inadvertently prompted and his precious contribution to this research effort. That would have both amused him and humbled him in equal measure. So, in the end, a chance comment by a colleague provoked a world-leading data-enabled cancer study that has delivered global impact.

Read more about DATA-CAN – HDR UK’s Hub for Cancer

The work described above received the Royal College of Physicians Excellence in Patient Care award, the prestigious European Communique Award, the European Cancer Organisation Special Merit Award and a number of national awards.