National Core Studies (NCS) Immunity – one of the six National Core Studies set up in summer 2020 by the Government Office for Science – has been a key part of the UK’s pandemic response. Led by Professor Paul Moss at the University of Birmingham, the programme led to over twenty separate studies involving more than 125 researchers at over 15 universities and other research centres.
The British Society for Immunology (BSI) delivered the patient and public involvement (PPI) element of the programme, working closely with a panel of public contributors and the programme’s management team to facilitate discussions, feedback and ideas.
Here, The BSI’s Public Engagement Manager and lead for PPI within National Core Studies Immunity, Erika Aquino, reflects on the impact of this work, and how the lessons learned can be used to promote and improve involvement in future scientific research.
In 2022, a panel of nine patients and members of the public was established to work alongside the research teams supported by National Core Studies Immunity for 12 months. The panel members had a range of experiences and backgrounds, including some that had conditions that affect their immune system. Their role was to offer insights, advice and feedback on the work being undertaken, and to ensure that the research met the needs of the widest possible range of people.
The panel met regularly with the research teams to discuss findings, and helped draw attention to issues that may not have been considered. This led to some important discussions, including about the challenges of recruiting study participants from underrepresented communities.
Capturing impact and driving improvements
The positive impact of this work is explored in depth in the report ‘Patient and public involvement in COVID-19 research: bridging the gap between theory and practice’, which was co-authored with panel members as a response to conversations about best practice in PPI. In addition, an evaluation of involvement activities identified those areas where things had gone well, and others where there was room to improve.
One important factor for panel members was being valued and recognised for their role in the programme. All public contributors strongly agreed that they could contribute their feedback and reflections on the ongoing research priorities to the National Core Studies Immunity management team, and this was an important motivator for them to remain involved in the project. Monthly meetings had an average attendance of 80%.
Anonymous feedback was sought continually to identify areas for improvement in how panel members were involved. For example, early in the project, the need for researchers to use accessible language and avoid complicated terminology was highlighted as a priority, and led to tailored pre-briefings with researchers to help identify where complex language may be a barrier.
The BSI welcomed the opportunity to reflect on its own ways of working, as well as the wider immunology research culture, and actively engaged in a process of continuous adaptation and learning around PPI.
The BSI built relationships with us. I felt that I could reach out with any concerns and comments, both positive and negative. Thank you to all at the BSI for all that you are and everything that you do. You have been approachable, reflexive and it’s been a joy to be involved with you.
-Public contributor, National Core Studies Immunity
Future priorities: public policy and research funding
One area that was of particular interest to the panel members was communications and engagement with the wider public. As a result, the BSI sought opportunities to work with members of the panel to create public-facing infographics, co-author a report, deliver a public webinar and co-produce a training course for researchers on how to meaningfully involve patients and the public.
The panel members also had a keen interest in public policy and research funding, and both were identified as areas where further work is needed to encourage active involvement of patients and the public. The BSI looks forward to finding ways to achieve this, working closely with public contributors and its wider network.
Erika Aquino, Public Engagement Manager and lead for PPI within National Core Studies Immunity