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

10.1186/s40900-023-00446-1

Research Involvement and Engagement

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.

Author list:

Affiliations

  1. British Society for Immunology, UK
  2. Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, UK
  3. Greater Manchester, UK
  4. West Midlands, UK
  5. Birmingham, UK
  6. Clackmannanshire, UK
  7. East Yorkshire, UK

Authors:

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