The National Cancer Research Institute (NCRI), Cancer Research UK (CRUK) and Public Health England’s National Disease Registration Service (PHE NCRAS) hosted a Cancer/COVID-19 Research Summit with researchers from different disciplines discussing the impact that COVID-19 is having on cancer services and research.
Several areas in which further research is needed were identified, as well as lessons from the pandemic to improve research and cancer care, as well as help prepare for future crises. These include understanding the biological and psychological effects of COVID-19 on cancer patients, risk factors associated with COVID-19 and cancer, the influence of COVID-19 on health-related behaviors and the impact of COVID-19 on cancer care pathways.
Key themes identified in the discussions were:
Knowledge of and communication of risk
“We saw a clear vulnerability in our understanding of infection risk in cancer patients, how we respond to these types of infections and how we effectively communicate evolving knowledge.”—meeting participant
Being able to accurately assess an individual’s risk of COVID-19 is vital to inform their behavior and how they seek or receive medical treatment. For cancer patients, this means understanding how risk factors such as cancer type, treatment type, immune system health and any other health issues influence their COVID-19 risk.
Researchers highlighted that policies and mitigation strategies, such as shielding advice and alterations to treatment pathways, were too broad and at times based on assumptions that lacked evidence. This likely resulted in missed cancer diagnoses and limited ability to provide cancer care.
While decision-makers acted on the best knowledge available to them at the time, we now know a great deal more about COVID-19. There needs to be a clearer process for translating such findings into practice and to inform policy. This will be important in dealing with COVID-19 and other crises, as well as improve how we assess and communicate infection risk in cancer patients to mitigate the impact of any future pandemics.
Impact on diagnosis and care pathways
“We don’t have enough space on the board to move around the pieces when something goes wrong”—meeting participant
COVID-19 caused significant disruption across cancer screening, diagnosis, treatment and long-term care pathways. There is an opportunity to learn from this, for example, by identifying care pathways or procedures that demonstrated greater resilience and developing strategies to manage sudden changes more effectively.
The number of missed cancer diagnoses was identified as a critical question. There is a concern that the ability to catch up on missed referrals is limited, and determining what happened to the estimated 40-50,000 people who would have normally been diagnosed with cancer is a key priority.
Impact on health-related behaviors and effects on quality of life
Researchers asked what impact the COVID-19 pandemic or the resulting policy changes had on health behaviors, such as smoking and alcohol consumption, screening attendance and visiting primary and secondary care settings. Behavioral scientists highlighted that a persons’ perceived rather than actual risk is likely to affect these health behaviors; however, more research is needed to understand this.
The patient experience should be monitored closely to improve service delivery. This includes managing the effects of the pandemic on the quality of life of patients, carers, those shielding, and the NHS workforce.
There is research ongoing to understand the impact of the pandemic on mental health and wellbeing. Still, broader factors, including financial and social impacts, need to be assessed. It was stressed that this would help us understand the impact the pandemic is having on cancer patients over time and identify any long-term issues that may need addressing.
Use of health data
COVID-19 has highlighted the benefits of collating and safely sharing data in real-time to support decision making. Building on this progress is not just invaluable for dealing with future emergencies, but for supporting the translation of research to improve healthcare under normal circumstances.
Researchers expressed a clear need for more effective and wider safe sharing of health data for research purposes. While temporary measures put in place allowed the rapid, safe sharing of patient data and enabled researchers and health care professionals to respond to the pandemic, the worry is that the progress made will be undone when these temporary measures expire.
CRUK, PHE, NCRI and other organizations such as Health Data Research UK (HDR-UK) and NHS Digital have been working together to make significant progress in enabling a more transparent and effective way of identifying and accessing datasets to support research while keeping patients’ data secure. However, barriers to data-driven research still exist, and they need to be reassessed in light of experiences during the pandemic so these tools can contribute to rapid progress in all disease areas and not just in times of crisis.
Summary
The pandemic has highlighted that research is as an integral part of a well-functioning healthcare system. Lessons can be learned about how cancer-related research is conducted, how findings are translated into practice and how we, as a community, respond to crises.
- What changes in the care pathway occurred as a result of the pandemic and what has been the impact for cancer patients?
- What can we learn from colleagues working in infectious diseases about how to work together to tackle a health crisis?
- How can the collaborations and infrastructure built in response to COVID-19 be leveraged to identify, support and progress vital research in other disease areas?
- What lessons from the pandemic need to be captured and taken forward to help shape the future of health research and patient care?
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