How public involvement improved our study

The SARS-CoV2- Immunity and Reinfection Evaluation Study, known as SIREN, was launched in 2020 in response to the COVID-19 pandemic. The study monitors COVID-19 infections in NHS healthcare workers across the UK and is the largest study of its kind.

The SARS-CoV2- Immunity and Reinfection Evaluation Study, known as SIREN, was launched in 2020 in response to the COVID-19 pandemic. The study monitors COVID-19 infections in NHS healthcare workers across the UK and is the largest study of its kind.

SIREN has helped to shape our understanding of COVID-19 infections, reinfections and the protection offered by vaccines. We have also played a role in national surveillance, offering insight into infection trends and monitoring emerging COVID-19 variants. More recently, SIREN has introduced a sub-study to explore the impact of additional respiratory viruses on illness and staff absence in healthcare workers, along with protection from seasonal flu vaccines.

The study involves more than 44,000 healthcare workers from across 135 NHS organisations who undergo fortnightly testing and provide regular blood samples. We have been following the participants for over two years now.

Our focus on participant involvement has been crucial to the design, delivery, and success of the study.

After 12 months of follow-up 85% of our cohort were retained, with 88% of those who signed up for a further 12 months completing a second year. This is an amazing result for a study which requires participants to provide regular samples over a long period, particularly when participants are healthcare workers who have notoriously busy schedules.

We have a dedicated workstream focusing on participant engagement and involvement. To engage with participants we provide a regular newsletter, dedicated webpage, videos and live webinar events. To actively involve participants in the running of the study we established a participant involvement panel, or PIP for short. The panel consists of 10 study participants recruited from across the four UK nations, representing a broad range of staff groups.

The British Society for Immunology (BSI) support us to run the PIP, which meets every six weeks over Zoom. Each meeting is co-chaired by the BSI and a panel member. Meeting topics vary each time, with a range of SIREN researchers attending to seek feedback and insights from PIP members.

The PIP has had a tangible impact on the study to date, including helping speed up the ethics approval process for SIREN sub-studies, improving the design of communications aimed at wider study participants, and feeding back on proposed changes to the study in an agile way. This is important because as a pandemic response study we have to respond rapidly to new developments, such as new variants of concern. Introducing the PIP has been crucial to ensuring we can get timely feedback and make any changes to the study in a way that brings participants along with us.

The PIP helps us be more connected to our research participants. PIP members can highlight challenges that participants are facing within the study, and they have really helped to create and embed a culture of improvement, openness, and inclusivity.

SIREN was set-up at scale during a very short time period and as the study progressed the importance of participant involvement became increasingly clear, particularly as our focus turned to retaining participants for year two. Distinct funding enabled us to partner with the BSI and we have benefitted hugely from their support. Learning for us includes that we would have benefited from PIP insights from the very start of the study.

We really value participant involvement within SIREN, and we would encourage researchers from across the health and social care research sector to involve participants and the public in their work at the earliest opportunity.

However, we also acknowledge that it’s important for researchers to have access to training, support, and resources to help them get this right. The Shared Commitment is a great way of raising the profile and importance of participant and public involvement in research.