The impact of patient and public involvement on COVID-19 immunology research: experiences from the UK Coronavirus Immunology Consortium

Abstract

Background

Patient and Public Involvement (PPI) in clinical trial research is recognised as relevant but the active involvement of patients and the public in basic science or laboratory-based research is seen as more challenging and not often reported. PPI within the UK Coronavirus Immunology Consortium (UK-CIC), a translational research project aimed at tackling some of the key questions about the immune system’s response to SARS-CoV-2, is an example of overcoming negative perceptions and obstacles. Given the widespread impact of COVID-19, it was important to consider the impact of UK-CIC research on patients and the public throughout, and the PPI panel were an integral part of the consortium.

Findings

Building in funding for a PPI panel to value involvement and ensuring effective expert administrative support and management of PPI were crucial to success. Facilitating relationships and quality interactions between public contributors and researchers required time and commitment to the project from all parties. Through creating a platform and open space to explore diverse views and a wide range of perspectives, PPI was able to influence researchers’ ways of thinking about their research and impact future research questions about COVID-19 immunology. Moreover, there was long-term impact from the involvement of the PPI panel in COVID-19 research and their value was reflected in invitations to contribute to additional immunology projects.

Conclusion

The ability to conduct meaningful PPI with basic immunology research has been shown possible through the UK-CIC in the context of the fast-moving COVID-19 pandemic. The UK-CIC project has laid the foundations for PPI in immunology and this should now be built upon for the advantage of future basic scientific research; PPI can impact greatly on laboratory-based research when given the opportunity to do so.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-023-00446-1.

Abstract

The UK Coronavirus Immunology Consortium (UK-CIC) was established to address key questions about the immune system’s response to SARS-CoV-2, the virus which caused the COVID-19 pandemic, to benefit patient and public health at pace. The project brought together immunology laboratory-based research with the lived experience of patient and public contributors to ensure that the priorities for these groups and impacts of the research on the wider public were considered throughout. A Patient and Public Involvement (PPI) panel was set up to meet regularly with the scientists to provide a unique perspective, ask pertinent questions about the implications of the research, and discuss what was important to the public and patient groups. This paper examines the practical resources, support, and relationship building necessary to embed PPI in basic scientific research as well as how this can be achieved within urgent, critical research conducted during a pandemic situation. It explores the successes, impacts and legacy of involvement for researchers, the research, and importantly, the patient and public contributors. By sharing experiences from UK-CIC to help dispel any existing misconceptions that PPI can act as a hindrance, this paper proposes greater encouragement of PPI in all basic science research.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-023-00446-1.