Demonstrating the learning and impact of embedding participant involvement in a pandemic research study: The experience of the SARS-CoV-2 Immunity & Reinfection Evaluation (SIREN) study UK, 2020-2023

Background Participant involvement in research studies is not a new concept, yet barriers to implementation remain and application varies. This is particularly true for pandemic response research studies, where timeframes are condensed, pressure is high and the value and inclusion of participant involvement can be overlooked. The SIREN PIP provides a case study for participant involvement in pandemic research. Methods SIREN and the British Society for Immunology (BSI) recruited and ran two phases of the PIP, involving 15 members in total over a 16-month period. Activity figures including recruitment interest and PIP meeting attendance were recorded. Feedback from researchers running and presenting at the PIP has been used to evidence its impact on the study. Feedback from PIP members following meetings and through evaluation at the end of Phase 1 was also collected. Feedback from Phase 1 informed our approach to Phase 2. Results There was a fifteen-fold increase in applications for joining Phase 2 of the PIP compared to Phase 1. The average meeting attendance rate increased from 76% in Phase 1 to 85% in Phase 2. The SIREN PIP was found to positively impact the design, implementation and evaluation phases of the study and sub-studies. Feedback from PIP members themselves was positive, with members highlighting that they found the role rewarding and felt valued. Learnings from the PIP have been condensed into five key themes for applying to future pandemic response research studies: the importance of dedicated resources to support participant involvement; recruiting the right panel; understanding motivations for participant involvement; providing flexible options for involvement and the challenge of prioritising participant involvement in a pandemic response study. Conclusions This paper has contributed to the evidence base demonstrating that participant involvement can be included in, and adds value to, a pandemic response research study. The SIREN PIP has demonstrated the valuable role participant involvement can play in providing an active feedback mechanism for research. Positive impacts on study researchers and PIP members themselves have been demonstrated. Future pandemic studies should invest in participant involvement, and this could be enabled through the introduction of a national PIP forum.