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Beyond sharing findings: patient and public involvement for better research

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At the British Society for Immunology (BSI), we have been working towards equipping researchers with the necessary tools for effectively involving patients and the public in research. We managed the patient and public involvement (PPI) element of National Core Studies Immunity (NCSi) to facilitate involvement with COVID-19 research and, subsequently, designed and delivered tailored PPI training for the researchers involved. Here, BSI Public Engagement Manager and lead for PPI within the programme, Erika Aquino, details the impact and lessons of the NCSi PPI element and reflects on the importance of carrying out meaningful involvement with patients and the public.

National Core Studies Immunity (NCSi), 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, involving over 20 separate studies and more than 125 researchers at over 15 universities and other research centres. We are proud to have delivered the patient and public involvement (PPI) element of the programme, working closely with its management team and a panel of public contributors, with whom we then collaborated to design tailored training in the area to provide researchers with tools for effective PPI.

As the programme came to an end in April 2023, we now look back on the successes, challenges and improvements for future involvement with immunology research, and the value of co-creating training to deliver impactful outcomes.

Embedding involvement

In 2022, a panel of nine patients and members of the public was established to work alongside the research teams supported by NCSi for 12 months. The panel members had diverse experiences and backgrounds, including some with conditions that affect their immune system. Their overarching role was to offer insights, advice and feedback on the work being undertaken, ultimately ensuring that the research effectively met the needs of the widest possible range of people. Members met regularly with the research teams to discuss findings and implications. Through regular meetings with the research team, the panel helped draw attention to questions and issues that may not have been considered, such as the challenges of recruiting study participants from underrepresented communities.

The panel tended to bring up ideas of diversity of our cohorts, which made us really push this agenda, although we have been devoted to this cause! It was a very positive experience and will influence the way I think in the future.

- Management team, National Core Studies Immunity

Capturing impact

Patient and public involvement in the programme had immense positive impact in a range of areas including the research delivered and the individuals involved. Importantly, it was also of crucial benefit to the public contributors, who reported feeling valued and recognised for their role within the programme.

I’m proud to be a PPI member for National Core Studies and the BSI, thanks for taking me onboard.

- Public contributor, National Core Studies Immunity

All public contributors strongly agreed that they could contribute their feedback and reflections on the ongoing research priorities to the NCSi management team. The panel were grateful to the programme lead, Professor Paul Moss, and co-lead, Professor Doreen Cantrell, for always attending meetings and providing regular updates, and greatly appreciated the opportunity to ask questions and provide their feedback.

Researchers were amenable to public contributors’ questions, comments and suggestions and always replied with expanded explanations.

- Public contributor, National Core Studies Immunity

Continuous feedback drives improvements

Throughout the project, we used Padlet, an online anonymous feedback tool, to gain insight on how the meeting went and what could be done differently.

The Padlet was a great way to surface issues and discuss them, many PPI groups don't have a process for that.

- Public contributor, National Core Studies Immunity

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.

For example, at the beginning of the project, the timing and fast pace of the meetings were noted as feedback, which was taken on board, rearranging them for more convenient times and reducing the agenda. The panel reported back that these changes enabled open and productive conversations with researchers.

Early in the project, the need for researchers to use accessible language and avoid complicated terminology was highlighted as important. We briefed presenters ahead of the meetings and provided feedback after so researchers could learn from their experiences and build their communication skills. Reflecting on this later in the project, panel members noted that presentations were clearer and easy to understand, and they praised researchers for explaining the complex science in an understandable way.

Fostering relationships is key to successfully working together

Another success was the strong relationships formed between the panel members and the BSI team. Key to successfully building rapport is trust, openness and listening to others to have productive conversations. The BSI welcomed the opportunity to reflect on our 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.

I enjoyed seeing real-time research results from the teams. The best sessions were when the public contributors who were part of the research presented alongside the researchers, it was great to see that happening.

- Public contributor, National Core Studies Immunity

I think the BSI have been amazing here and the comments from people that they felt completely included are a testament to that.

- Management team, National Core Studies Immunity

Influencing policy and research funding

Positively, all public contributors reported that they could provide their perspective on wider implications of the research on national COVID-19 public policy priorities.

However, there is still work to be done to ensure decision-makers involve public contributors and patients in policy discussions. Additionally, the BSI strives to promote the important role of PPI in research funding and how involving people with lived experiences in grant applications is vital for effective research. It is vital to focus on communication beyond research findings to effectively involve and make sure outcomes reach the people affected and their clinicians. We will continue to advocate for PPI influencing policy topics important to patients and the immunology community.

In future, the BSI needs to keep on supporting PPI and involve patients and the public in additional research as the BSI is well placed.

- Public contributor, National Core Studies Immunity

The British Society for Immunology have an extraordinary culture of excellence, commitment, professionalism and support.

- Management team, National Core Studies Immunity

First steps towards meaningful involvement

Many panel members cited that they were able to add meaningful input into the programme’s public engagement and communication activities. We worked with them to create public facing infographics, co-author a report and deliver a public webinar.

Crucially, the panel and BSI also coproduced a training course for researchers about how to involve the public and patients in their research, and better understand the mindset and approach needed for effective and inclusive involvement. This course laid out the foundations in this area to help researchers start their PPI journey and provide them with the necessary tools to involve the public throughout the entire research cycle.

Table of successes and continual progress

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

We made space for conversations which delved into tensions inherent in big data research. It was great to have the time to do that productively.

- Public contributor, National Core Studies Immunity

Co-production at its core 

A group of five patient and public contributors worked closely with the BSI team to co-design an online course for the NCSi researchers, developing learning objectives, content and delivery methods, and including a practice run.

The researchers were also consulted on the content of the training to identify gaps in knowledge and how best to shape the course. The course allowed for 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. Everyone involved inputted into a group agreement, in which they shared what they need to enable them to participate and discuss what adjustments might be necessary to promote inclusive practice.

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 experiences are appreciated and can add value to research.

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.

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. We look forward to further developing and improving the training, working closely with public contributors and the wider research community, and seeing more of our members and immunology community getting involved in this important part of the research process.

Erika Aquino
BSI Public Engagement Manager

Find out more:

The positive impact of PPI on the programme and the research delivered are explored in depth in the report ‘Patient and public involvement in COVID-19 research: bridging the gap between theory and practice’. You can find out more and download the full report here. For further information or any questions about the BSI PPI training course or our work in this area, please email e.aquino@