How co-designing research questions to understand what people with cancer want from COVID-19 research, informed some surprising results, and in addition, clinician learning and development.

During the summer of 2020, the UK Coronavirus Cancer Monitoring Project (UKCCMP) and the National Cancer Research Institute (NCRI) Consumer Forum worked together to understand the questions and priorities cancer patients and their carers wanted addressing from research into COVID-19.

The UKCCMP has learnt from every case of COVID-19 in cancer patients in the UK, driven by a strong desire to answer the unknown questions and provide real-time, evidence-based conclusions to direct treatment decisions. Collaborating with the NCRI Consumer Forum added to the project by informing them of cancer patients and carers’ views and facilitating the learning and development of the clinicians and medical students involved.

A co-designed online survey was distributed to cancer patients and their carers after an iterative process involving all parties in the development. Consumer Forum members trialled the survey and then distributed it through their networks and associated patient groups.

Over 200 people responded and indicated the research priorities they deem essential and shared their experiences of shielding. The results surprised, humbled, upset and inspired us. The top three research priorities that emerged were: “the effect of COVID-19 on the cancer population over time”; “the development of a COVID-19 vaccine”; and “understanding personal risk of COVID-19 based on treatment type”.

On stratification of the results, only age was found to have an effect, with the younger age group less concerned about the influence of genetics on COVID-19 risk for cancer patients. Thematic analysis revealed that all but four respondents (4 out of 132) were negatively impacted by shielding. This was upsetting, but not surprising.

What clinician-patient advocate collaboration can teach us?

The clinician – Dr Lennard Lee, Academic Clinical Lecturer, University of Oxford/Birmingham

Patient and carer involvement is essential to ensure COVID-19 research is focused appropriately and relevant to patients. To date, there had been no surveys of patients analysing their attitudes to current UK COVID-19 research priorities.

These results helped set the strategy for future research into the impact of COVID-19 on the cancer population as part of the ongoing UK Coronavirus Cancer Monitoring Project.

The student – Christian Mitchell, Medical Student, University of Birmingham

I am a third-year medical student currently at the University of Birmingham. I had no prior involvement in research, meaning that this experience has been a steep, albeit an exciting, learning curve for me.

I had an active role in formulating the drafts of the survey and then collating and analysing the results. The questions were initially based on the key COVID-19 WHO research priorities under its ‘Global Research Roadmap’ before the NCRI Consumer Forum reviewed them. This initial forum with the expert patients was something that I had never experienced before. It was surprising to see that our initial scientific priorities differed considerably from what cancer patients wanted to know about COVID-19. I also expected patients to be much more focused on the impacts of COVID-19 on themselves, principally their risks from an infection due to their cancer type and treatment. I was again surprised when it emerged that it was more important to understand the impacts on the cancer population as a whole.

As a medical student, the significance of patient collaboration in both research and healthcare has been further highlighted to me. It is a powerful tool that I will use during my practice in the future. This involvement in research has been an invaluable experience for me, and I hope to be given many more opportunities to get involved.

The consumer – Emma Kinloch, NCRI Consumer Lead

In a limited resource environment, we want all resources, from data inputs through to clinician time, gathered together to maximise efficiencies and delivery of outcomes that benefit patients. To ensure that these limited resources are targeting the right questions, patients need to involved. As charities and funders re-evaluate, re-constitute and re-prioritise in the light of COVID-19, research priorities need to be considered carefully. Without asking patients and carers what we want to understand and the important questions, there is a real danger these precious resources are not fully utilised.

About the NCRI Consumer Forum