Panel of patients and public share personal perspectives with COVID-19 researchers

31st March 2022
Image of workshop


Researchers working on a range of COVID-19 studies have heard the perspective of people whose immune systems are weakened by an illness or treatment, as part of an initiative to involve patients and the public more extensively in COVID-19 research that affects them.

In a session organised by the British Society for Immunology (BSI), the researchers – all funded by the National Core Studies Immunity Programme – heard from representatives of a panel of people who have been recruited to work alongside them, giving their views, insights and feedback so that the resulting research can more effectively meet the needs of the widest possible range of people.

The panel of ten people, who have a range of backgrounds and experiences, were first involved in the work of the UK Coronavirus Immunology Consortium last year. They provided advice, guidance and feedback on its work and the wider implications of research, and a report on the impact of this collaboration was published by the BSI.

Two members of the panel, Lynn Laidlaw and Vivienne Wilkes, joined the workshop by video link, and began by presenting their views on the importance of involving members of the public in research, before opening up the floor to facilitate a wider conversation. Topics raised included the challenge of communicating uncertainty, the importance of using clear and simple language, and the need to enable GPs and other frontline health professionals to provide the necessary evidence to help people make decisions about their health.

Lynn Laidlaw commented:

Many people who have lived experience of conditions are passionate about research and willing to freely give their time to be involved. Ultimately, what’s the point of research if it stays sitting with academics instead of reaching the people it describes?

It's important for researchers to understand how people have been made to feel by the pandemic, and the practical disruption to their lives. For example, when the country celebrated so-called Freedom Day, those of us that had been shielding suddenly felt even less free than before. The personal perspective will always be very different from the researcher perspective but is crucially important – I am not a collection of B cells and T cells! I and others can influence and advocate for research, and help make it better and better.

Vivienne Wilkes commented:

Thousands of people out there are still shielding because they don’t have the evidence they need to make an informed decision. We need to re-evaluate what success really looks like – is it getting a paper published in Nature? Or is it getting evidence into the hands of clinicians so they can confidently support people to live their lives while still protecting themselves?

A lot of people, including myself, never considered themselves ‘vulnerable’ until they received a letter that told them they needed to shield. This has had an enormous impact on our view of ourselves, our wellbeing, and our quality of life for two years.

Professor Paul Moss, who leads the National Core Studies Immunity Programme, commented:

This group can add so much value to our planning, refining and sharing of research – the work they undertook with the UK Coronavirus Immunology Consortium was truly transformational. I am very excited to see what positive impact we can achieve by encouraging open, frank discussion between our researchers and this engaged, inspiring group of experts by experience.

Erika Aquino, Public Engagement Manager at the British Society for Immunology, commented:

At a time when researchers have been working faster and harder than ever before, it’s all too easy for the patient perspective to get left behind, but this would be a huge mistake. The public is more engaged than ever with science, and this presents a rare opportunity to make sure that their views, priorities and expertise shape how we plan, carry out and disseminate research now and in the future.

You can find out more about the Patient and Public Involvement panel here.