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

Erika Neves Aquino; Paul Moss; Mo Hafeez; Robert Jasper; Tony Kelly; Lynn Laidlaw; Vivienne Wilkes

doi:10.1186/s40900-023-00446-1

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

Res Involv Engagem. 2023 May 22;9(1):34. doi: 10.1186/s40900-023-00446-1.

Authors

Erika Neves Aquino¹, Paul Moss², Mo Hafeez³, Robert Jasper⁴, Tony Kelly⁵, Lynn Laidlaw⁶, Vivienne Wilkes⁷

Affiliations

¹ British Society for Immunology, 9 Appold Street, London, EC2A 2AP, UK. e.aquino@immunology.org.
² Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, B15 2TT, UK.
³ , Greater Manchester, UK.
⁴ , West Midlands, UK.
⁵ , Birmingham, UK.
⁶ , Clackmannanshire, UK.
⁷ , East Yorkshire, UK.

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.

Keywords: Basic science; COVID-19; Immunology; Impact; Laboratory-based science; Measuring impact; PPI; Patient and public involvement; Public contributors.

Publication types

Letter

Abstract

Publication types

Grants and funding