Demonstrating the practical benefits of patient and public involvement

We were delighted to work with National Core Studies Immunity to produce a report demonstrating the impact of patient and public involvement (PPI) in COVID-19 research.

The British Society for Immunology delivers the patient and public involvement aspect of National Core Studies Immunity, and was commissioned to produce the report, entitled ‘Patient and public involvement in COVID-19 research: bridging the gap between theory and practice’, working closely with members of National Core Studies Immunity’s PPI Panel.

This panel has been meeting with researchers from the programme since April 2022 to hear about and feed back on their work, resulting in many lively and thought-provoking discussions on everything from approaches to recruiting participants to the language used when disseminating findings. It became clear during these meetings that there were some great examples of involvement from within these projects, and the panel was eager to share these widely to inspire more researchers to follow suit.

The aim of the report is to encourage as many research teams as possible to consider involving patients and the public in their work by providing practical examples of how this can be done to great effect. Four studies worked with the BSI to build these examples: EVITE Immunity, led by Professor Helen Snooks at Cardiff University, looking at the impact of the shielding policy in Wales; BE-DIRECT, led by Professor Manish Pareek at the University of Leicester, exploring whether immune responses differ according to ethnicity; The Vaccine Breakthrough Project, led by Professor Aziz Sheikh at Edinburgh University, studying the potential reasons for vaccine breakthrough; and VIBRANT, led by Professor Alex Richter at the University of Birmingham. VIBRANT is part of the wider SIREN study, and is investigating why some healthcare workers fail to mount an immune response after infection or vaccination.

The report also explores what it means to involve public contributors in research more broadly, and what is required to make sure this is done meaningfully. By presenting the experiences of researchers and public contributors side by side, the report offers insight into the challenges overcome, the lessons learned and the positive impact of the involvement on the resulting research.

"We have some really good examples of involvement from National Core Studies Immunity – this is the evidence we need to show that it’s working," says Mo Hafeez, member of the National Core Studies Immunity PPI panel. "The aim of this report is to share examples of when involving patients and the public has really worked and had a positive impact, so that others will feel empowered to do it too."

Three members of the PPI Panel worked with the BSI team to record short soundbites in which they describe why it is important to involve patients and the public in research, how this can be done most effectively, and ways to encourage more researchers to involve people in their work. These soundbites can be found on the BSI YouTube channel, and were shared widely on social media to raise awareness of the report and spark conversations about involvement.

"We wanted to give people some really practical examples of what patient and public involvement can look like when it’s done well," says Erika Aquino, BSI Public Engagement Manager. "It’s so important to show the huge positive impact involvement can have on the quality of research, and to inspire more researchers to take that first step to involving the public in their own work."

We hope that researchers who have already seen first-hand the benefits of PPI will use the report to demonstrate the importance of involvement to their peers and colleagues, funders, policymakers, potential research participants and other relevant audiences. We would encourage you to share it widely among your networks.

"So much value can be added to the planning, refining and sharing of research by involving patients and members of the public, and many researchers are becoming more vocal about the need to make this an integral part of research practice," says Paul Moss, Professor of Haematology at the University of Birmingham and Principal Investigator for National Core Studies Immunity. "When done well, it can be truly transformational."

Amy Edmunds
National Core Studies Immunity Communications Manager