By Stevie Corbin-Clarke, Mel Hughes and Kate Jupp, BU PIER Partnership

Research inclusion is more than just numbers!

Inclusion goes far beyond how many people are involved in a project. Last year, PIER continued to show that meaningful inclusion is about who and how people are involved and the power they are given throughout the research process. Having a diverse range of voices involved in research is how we will address health and social inequalities. Those with lived experience have been supported as co-applicants on funding bids, as community researchers, co-authors, facilitators, contributors and participants. A consistent emphasis on shared decision-making, creating safe spaces, and flexible and inclusive methods of involvement across all PIER projects, has been vital in all these relationships.

Research inclusions requires a different way of working; we have had to plan timelines, budgets, methods of communication, and how we share outputs differently to make everything we do as accessible as possible. Enabling people to participate on their own terms isn’t achievable as a one-off activity. There is often a pressure to prove inclusion via metrics, however this ignores the value of deep, sustained involvement.

‘Hard to reach’ or ‘easy to ignore’?

Frequently we hear the label ‘hard to reach’ and the story that those who are ‘seldom heard’ are unwilling to engage in research… however, PIER has learnt time and time again that these groups are actually often excluded by research systems that feel unsafe or extractive. PIER’s work shows that trust doesn’t develop overnight but through building relationships and creating spaces where conversations can happen without judgement. This can be incredibly challenging when working with people affected by stigma and trauma, but research inclusion and the consequent transformative learning can only happen when people with lived experience are able to get involved with shaping the entire process. Researchers must learn to listen deeply, accept when they feel discomfort, and challenge their previously held assumptions.

How inclusive involvement improves the quality and usefulness of research…

Voluntary and Community Sector Organisations have played a crucial role as community partners in grounding research in the lived reality. They have enabled our research to identify the right questions, improve accessibility, and enhance how the research is shared with the relevant people. For PIER, research doesn’t just ‘end’ once the data collection is complete. Learning continues, those involved are supported to see the outcomes of their involvement and many contributors become PIER members and stay connected through further projects and other roles.

What do researchers need from community partners?

Researchers need community partners’ expertise and insights – this is how we can make research more credible and impactful. However, researchers in return owe respect, transparency and flexibility. They also must be willing to share the power, to be challenged, and be willing to change direction when a better way forward is shown. When all of this is achieved, research can become something that is not just done with communities, but something that they can genuinely claim as their own.

Stevie Corbin-Clarke, Mel Hughes and Kate Jupp, BU PIER Partnership