Fresh approaches to PPIE (patient and public involvement and engagement) in research are needed to ensure good quality research that is fit for purpose. NIHR Programme Grants for Applied Research (PGfAR) is seeking to increase opportunities for partnerships through our Programme Development Grant Scheme - Developing Innovative, Inclusive and Diverse Public Partnerships Call 2023 - now open for applications. Below is a case study of one of the successful applications from the first call, which took place in 2022.
Title: Removing barriers to inclusion and building strong foundations of partnership and trust with under-served groups
Chief Researcher: Dr Sarah Kingsbury and Ms Amy Rebane
Contracting organisation: Leeds Teaching Hospitals NHS Trust
Why we applied to this funding call
We saw this funding call as an opportunity to work with our local communities in Leeds and Keele. We wanted to find out their views of patient and public involvement and engagement (PPIE) in health research and how best to work with them. Our aim is to make our activities meaningful, relevant, and accessible for different community groups. The best way to do this is by building relationships with communities and speaking to them directly. The funding gives us the resources we need to do this by covering costs for the community groups and their members’ time and expertise. This is helping us to build partnerships with community groups and identify how to sustain them. It’s also allowing our research groups in Leeds and Keele to work together so we can share ideas and learning.
Benefits to service users and NHS
Our project is focused on working with groups who are often excluded from health research. These groups can be described as ‘under-served’ as research is typically designed in a way that is not inclusive for them. There are barriers to including under-served groups at every stage of research, including research design, research activities, and more. The funding gives us the opportunity to understand some of these barriers from the perspective of under-served groups. It’s also allowing us to start discussing steps we can take to understand and address the barriers from a community perspective. By understanding the experiences and priorities of under-served groups, we can help make our research more inclusive and relevant to all. As well as this we will learn the techniques for building sustained partnerships with particular groups and collaborating with them in health research. Other researchers have the opportunity to acquire knowledge from these lessons and implement them in their respective healthcare research projects. This will benefit patients as those who need the most health support are often under-served by health research. It will also benefit the NHS as Inclusion is one of the NHS’s key priorities.
Aims of the programme
We aim to build relevant, sustainable partnerships with under-served groups based on trust and shared understanding.
Programme Design (incl WPs)
During our six-month programme, we aim to build partnerships with under-served groups. We’re using an approach called ‘knowledge mobilisation’. This involves different groups sharing knowledge and using it to make positive changes. We hope our approach will allow us to understand the experiences and needs of under-served groups, along with providing the right resources for the groups. To do this, we’re holding ‘community conversations’ with a range of community groups. These involve listening to the group members and encouraging them to openly discuss their thoughts about health research. We’ve co-designed the community conversations with the groups through a series of engagement meetings. Our ‘community conversations’ have been held with four groups – Expert Citizens, Voluntary Action Stoke on Trent (VAST) Services, Leeds Involving People and Healthwatch Leeds. The last stage of our project will involve sharing our findings through co-produced dissemination events and discussing our future plans for further reciprocal working.
It is hoped that we will be able to use our learning and new partnerships from this project to develop a research grant application. We’re planning to co-produce the grant application with community groups to make sure it’s driven by the needs and priorities of under-served groups.
Reflection on the relationship-building and what people have told us will influence how we carry our future engagement with community groups with a particular focus on reciprocal relationships and meaningful activity. As much as we can build research-ready communities, we need to develop community-ready research and the lessons we’ve learned from this will be applied to other research projects and wider strategies to help make them more inclusive and relevant to all.