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In this post, Dr Mel Hughes from ÌìÃÀ´«Ã½ reflects on their work in the PIER Partnership, and asks – Does the system need to change to facilitate more inclusive involvement?

What we do:

Much of the work I do involves drawing on the expertise of people with lived experience. I am an Associate Professor in Social work; academic lead for the PIER (Public Involvement in Education and Research) Partnership and Deputy Director of the Research Centre for Seldom Heard Voices at ÌìÃÀ´«Ã½. In all of these roles I seek to create an environment where people with lived experience are recognised and valued for their expertise and have genuine control and influence over any projects they are involved in. In education, this might be delivering a lecture to health and social care students; facilitating a student group; creating teaching materials; or assessing students’ skills, work or practice. In research it can include involvement and collaboration with academic researchers at all or any stage of the research cycle from shaping an idea to implementing or sharing the findings. In 2020-21, in the PIER partnership, we collaborated with 68 people with lived experience; 20 community organisations; 30 academics and 1454 students in 109 separate activities.

Why we do it:

The impact of our involvement is significant. We know that meaningful collaboration with people with lived experience where contributors or collaborators have genuine opportunity to influence research at all stages, improves the relevance and impact of a research study. For students, our involvement leads to increased knowledge, ways of improving practice; and enhanced emotional resilience.

Our current challenge:

In recent years, the alignment of the PIER partnership with the Research Centre for Seldom Heard Voices has enabled us to challenge both who and how we involve people with lived experience in all of these and other potential activities. Our premise is that those most affected by health, social and economic inequalities often have the least opportunity to inform and shape health and social sciences research, education, policy and practice. Rigid and formal systems and processes puts involvement out of reach of many. How might someone with poor literacy or capacity or someone who is homeless, meaningfully shape research designed to impact them. Beresford (2007:310) highlights that if diversity and the barriers that can be in the way of increasing diversity are not addressed, ‘participation is likely to be partial, and reflect broader social divisions and exclusions’. This has led us to question whether we are part of the problem. There has been a welcome push recently by research funders for researchers to address the lack of diversity and increase the involvement of people with lived experience who are currently under-served by research (an extensive list as shown by NIHR Include Project 2020). Is this however leading to a rush for tokenistic involvement of people from marginalised and seldom heard groups. Does this result in having people in the room but not in an environment where they are genuinely heard or can make a difference. I am often inspired by a colleague Lynn Laidlaw, an experienced public contributor. In a blogpost for the Co-production Collective, Lynn asks: ‘Are we inviting underrepresented and seldom heard groups into a co-production and involvement environment which is not fit for purpose? (Jordan and Lynn 2020). It is an important question. As many of the resources to increase diversity of public involvement focus on building capacity of people with lived experience to contribute, should we not be looking at ourselves within research and educational institutions to look at how we collaborate; why we collaborate, who we collaborate with and how we can make this more inclusive for a wider range of people with lived experience to genuinely make a difference based on their priorities.

Being asked through the writing of this blog to spotlight our work and how we meet this challenge feels uncomfortable. It suggests that we have the answers and always get it right. We don’t. I find my self on a daily basis grappling with the demands of the system and deciding whether some involvement is better than no involvement. We are however committed to trying. This involves pushing boundaries and doing things differently. My mantra in any conversation about involvement or collaboration is: who is most affected by this and how do we ensure they have an opportunity to be involved? In all cases it involves conversations with community organisations and people with lived experience to find a range of ways from the start.

So, what does this look like? For us, this has led to the development of a social work textbook: A Guide to Statutory Social Work interventions: the lived experience (where each chapter is written by someone with lived experience of the intervention e.g. being detained under the Mental Health Act; having a child removed to a place of safety; or being in care); Chief Cook and Bottle Washer, a co-produced research study with older male carers over the age of 85 where the co-researchers created their own film and guide (now in every GP practice in Dorset); a play SCORE! in collaboration with substance using parents and Documental theatre (which was performed 50 times across England). Currently it involves developing a special issue of The British Journal of Social Work on the Voice of people with lived experience written by rather than about people with lived experience with a complete change in format for the journal to enable people to submit in whatever media they choose from discussion pieces to poems.

There is no perfect way to develop inclusive involvement but it does involve making decisions based on how those of us in positions of influence within research and education institutions can create spaces rather than take up spaces where people with lived experience are heard.