The National Core Studies Immunity (NCSi) programme – 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. The programme involved more than 125 researchers at over 15 universities and other research centres. The British Society for Immunology (BSI) managed the patient and public involvement (PPI) element of NCSi and collaborated with public contributors to design and deliver tailored training for the researchers to better understand how to carry out meaningful involvement.
Here, the BSI’s Public Engagement Manager and lead for PPI within NCSi, Erika Aquino, reflects on the importance of equipping researchers with the tools for PPI and how co-creation of specialist training enables effective outcomes.
Co-production at its core
A group of five patient and public contributors worked closely with the BSI team to co-produce the online course to encourage more scientists to involve the public throughout the entire research cycle. Through regular meetings, email discussions, sharing documents and collective decision making, the group developed the learning objectives, content and delivery methods. A useful practice run of the training ensured everyone was prepared for the delivery. Thank you to our public collaborators for supporting and helping deliver engaging sessions.
Researchers were also consulted on the content of the training to identify gaps in knowledge and how best to shape the course. It was also helpful to have researchers themselves join the delivery, to support peer-to-peer learning through sharing experiences and case studies of successful involvement.
Researchers wanted to improve their knowledge of how to reach the people most affected by their research and involve them in funding applications, and these topics were incorporated into the course. As well as practical skills of administrating and coordinating involvement, a vital element for the public contributors was to role-model inclusive engagement and emphasise the importance of approaching involvement with a sincere mindset. There was dedicated time in the session for everyone to input into a group agreement, which asks people what they need to enable them to be involved and discuss what adjustments might be necessary to promote inclusive practice which supports participation.
The journey is as important as the destination
The course focused on reflexive practice, where researchers were challenged to recognise how their own assumptions impact how they view PPI. Building partnerships and nurturing relationships with mutual respect and trust takes time and resource but should not be seen as a barrier to involving patients and the public with research. Equitable involvement requires fostering a culture where different types of knowledge and lived experience are appreciated and can add value to research. Knowledge of best practice around PPI improves outcomes but the lessons learnt along the way are equally important.
Positive feedback and room for improvement
Participants were asked to complete a questionnaire before and after the training to gather feedback and rank their confidence in accomplishing different aspects of PPI. Positively, confidence in all aspects increased after attending the course. Before the training, 48% of participants were not confident in building rapport and relationships with public contributors but after completing the course, 92% of participants reported feeling confident and very confident. Notably, 93% of attendees finished the course feeling confident in giving value to patient and public contributors, compared with 9% before the training. Many of the researchers reported enjoying the helpful insights and advice from the experienced patient and public contributors as well as hearing useful case studies from their colleagues. Participants appreciated the safe space for questions and discussions around meaningful involvement.
The feedback highlighted areas for improvement too, including having more time for smaller group conversations and more information on how to monitor and report impact. There were useful suggestions of having separate introductory training with more practical guidance around recruiting patient and public contributors and running effective meetings. The BSI looks forward to further developing and improving the training, working closely with public contributors and its wider research community.
Erika Aquino
BSI Public Engagement Manager
Email: e.aquino@immunology.org
For further information or any questions about this training course and our patient and public involvement work, please contact Erika Aquino, BSI Public Engagement Manager, at e.aquino@immunology.org