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Patient discussion

The importance of Patient and Public Involvement (PPI) in clinical trial research is widely recognised, but it is less so in basic science or laboratory-based research, where PPI is seen as more challenging and not often reported.

However, a new paper by the UK Coronavirus Immunology Consortium (UK-CIC) argues that PPI can greatly impact basic scientific research, as well as urgent, critical research conducted during a pandemic situation.

PPI helps to make sure we think through the ultimate application of our research for the public. This can initially be challenging to address and so it may even make scientists feel a little defensive. But like all things in life, after you apply yourself, you learn from it and it makes you stronger.

Professor Paul Moss

UK-CIC was a UK-wide collaborative project aimed at understanding the immunology of SARS-CoV-2 for the improvement of patient care and the development of better diagnostics, treatments and vaccines for COVID-19. It was funded by UK Research and Innovation (UKRI) and the National Institute for Health and Care Research (NIHR), and supported by the British Society for Immunology (BSI).

The Consortium was led by Paul Moss, Professor of Haematology within the Institute of Immunology and Immunotherapy at the University of Birmingham and Theme Lead at the NIHR Birmingham Biomedical Research Centre (BRC), where he has been working within the Cancer Inflammation research theme to explore how to optimise COVID-19 protection for vulnerable cancer patients.

The article, recently published in Research Involvement and Engagement, reflects on the impact of patient and public involvement on COVID-19 immunology research, and is co-authored by Professor Moss and members of the UK-CIC PPI panel – two of whom have been recruited through the BRC at the grant application stage.

Given the widespread impact of COVID-19, the views of patients and the public were key to the success of UK-CIC. From exploring the set-up of the PPI panel to describing the modes of interaction with the researchers, further PPI engagement activities, and how public contributors supported different stages of the research cycle, the paper provides an extensive overview of this successful example of PPI in immunology research.

The authors found that building in funding for effective expert management of PPI, as well as efficient remuneration for contributors, were crucial for success and to maintain high levels of motivation. Through creating a platform to explore diverse views, PPI influenced the researchers’ ways of thinking in relation to their work and their approach to their research questions.

PPI, however, was not only beneficial for researchers; many public contributors mentioned how much they learnt from each other, and how their confidence in PPI had been boosted by their positive experience. Furthermore, there was long-term impact from the involvement of the PPI panel in the project, as its members were invited to contribute to additional immunology projects.

Robert Jasper, member of the UK-CIC PPI panel and founding member of the BRC Muscle Health PPI group, commented: “When I discovered what the research was going to be about, I thought it was purely academic and not related to halting the pandemic, so I didn’t have any great expectations for the PPI. As the year progressed, I understood how the academic research helped understand the virus’ effects on the immune system which contribute to beneficial treatments for patients, proving that UK-CIC research is worthwhile.”

Read the paper: The impact of patient and public involvement on COVID-19 immunology research: experiences from the UK Coronavirus Immunology Consortium | Research Involvement and Engagement | Full Text (