IoPPN Research Culture Insights: Lived Experience Advisory Board (Part 1)

This blog is one of a two-part series in which LEAB Member Rachel Hill and LEAB Coordinator Rhea Sookdeosingh share their thoughts on lived experience involvement and the impact the LEAB has had on the Centre’s research culture. Click here for Rachel’s blog.

What do you think when you hear ‘lived experience involvement’?

I have a background in public engagement, so when I think about lived experience involvement, I think about valuing different types of knowledge and bringing academic and lived experience expertise side by side to create a fuller picture of the problems we’re researching.

So often researchers say that collaborating with lived experience partners has brought perspectives they weren’t aware of or raised questions they hadn’t considered, and it makes me think the value of lived experience involvement in research is in some ways best evidenced by its absence– we know when it’s missing, and the ensuing research is the poorer for it. Many, if not all, areas of study are enriched by the experience, expertise and skills that lived experience experts bring to bear. It’s not always easy or straightforward (not least because of bureaucratic barriers), but the pay-off is more robust research that is more likely to be seen as credible, trustworthy and resonant by those affected by the topics we study.

Lived experience involvement can take many forms, from consultation and advising all the way through to co-producing research, and ultimately the type of lived experience involvement you undertake as a researcher will depend on the nature of your research topic, your resources, and your own level of experience with this kind of collaborative working.

In my previous role (with The SHaME Project at Birkbeck, University of London), we undertook a lot of public engagement projects with survivors of sexual violence and it drove home to me that lived experience involvement, whether as part of one-off events or large-scale cultural initiatives, has the power to inspire people on a much deeper level and ultimately drive change in a way that’s just not possible with research alone.

What role has the LEAB played in positively impacting research culture at the Centre for Society and Mental Health?

I joined the Centre for Society and Mental Health quite recently and it was immediately obvious to me that the LEAB went above and beyond what I had previously thought was possible with coproduction and partnership working in academia. The LEAB is not only embedded within the Centre’s research structures, they also form a vital part of its governance structure, helping to shape the Centre’s aims and priorities. I could see the LEAB’s impact across different research projects, in the work they co-produced and led, such as the Centre-produced Research Methods Toolkit and their submission of evidence on the Draft Mental Health Bill, as well as in Centre-level work like our Code of Conduct.

But beyond the tangible evidence, I’ve seen how the LEAB’s ways of working, which, in their own words, promote ‘a culture of listening and being willing to “unlearn”’, have shifted and shaped the Centre’s underlying culture and how everyone relates to one another. For me, working with the LEAB has encouraged me to think more expansively, holistically and creatively about what is possible in research spaces, both in terms of the research itself and its wider impact. Our LEAB colleagues are passionate, talented and committed to using their knowledge and expertise to drive for transformative social, political and structural change. I’m blown away by their creativity, insight and ingenuity and it’s not just me – their impact has been recognised with a King’s Engaged Research Award for Transforming Research Culture and an SSPP Impact Prize, if I can shamelessly do a bit of promotion!

What do you want to see going forward in the Lived Experience Involvement space?

I’d love to see awareness spreading and a wider uptake of lived experience involvement practices. Researchers who do this kind of work know its value and they are continually trying to do better and push forward. But there remain so many areas of academia where lived experience involvement isn’t well understood and I think the wider we spread the messages – along with the skills and thinking to do this work well – the better.

The LEAB has recently co-written a position paper on the value of lived experience to research centres (publication in Social Psychiatry and Psychiatric Epidemiology forthcoming), which I think offers so much valuable insight into what lived experience involvement entails, the invaluable perspective and knowledge it brings to research, and insight and tips into how to do it well. Watch this space!

I’d also love to see more robust and tailored institutional practices that support this kind of work. Although there may be a high-level commitment to public, community and civic engagement, the infrastructure to fully support this work is often lacking or not fit for purpose. So I’d love to see the high-level commitment trickle down and create systems and processes that help us all do this work in ethical, equitable and (fairly) stress-free ways.

Top Tips for getting started with Lived Experience Involvement

These are my top three principles to guide your approach to lived experience involvement.

1. Trust
Building relationships of trust is crucial for the success of any lived experience involvement partnership. It takes time and effort and a shift in mindset that prioritises the process as much as, or even more than, the outcomes.

2. Transparency
Being transparent about university processes, including things like budget management and payment protocols, are a key part of including lived experience partners on equal footing (or at least attempting to create an equal footing). Demystifying research and university bureaucracy (things we often take for granted ourselves) is a crucial part of building trust and working equitably.

3. Talent
Although you may be engaging with partners on the basis of their lived experience, it’s vital to remember that the people you work with bring a wealth of personal and professional knowledge and wisdom. This is something our LEAB foregrounds and values, enabling each other to bring their full talents to the work we do.

Project planning at the outset is also really crucial in creating successful lived experience partnerships. Reflecting on the following questions can help create a shared foundation and vision to guide your work together.

Who do you want to engage?
Think about your preferred partners – who are they, what kind of lived experience do they have? What about other professional and personal skills? How will you approach recruitment in an inclusive way to attract a diverse group?

Why?
Think about why you want to engage with people with lived experience and what perspectives and skills they will bring to your research. Co-production is increasingly encouraged by funders and universities, but doing this kind of work takes thinking beyond ‘ticking a box’ and really considering your underlying motivations. What do you hope lived experience engagement will add to your research and its impact?

Why should they want to work with you?
What do you bring to the table? How will working with you benefit them, personally and/or professionally? It’s so important to really think about what you’re offering and to take seriously the idea that you have a responsibility to the people you engage with.

What impact do you want to make?
Impact and making a difference is a big driver for people with lived experience getting involved with research, whereas it can sometimes be a secondary concern for researchers. So it really helps to think up front about what impact you want to make and building that into your research design from the outset.

About LEAB and the Centre for Society and Mental Health

The Lived Experience Advisory Board (LEAB) at the Centre for Society and Mental Health (CSMH) is comprised of 9 members from diverse personal and professional backgrounds with indirect and/or direct experiences of disabling barriers, neurodivergence, mental distress, mental illness, trauma, caring/supporting people in mental distress, and/or ref(using) mental health services including experiences of iatrogenic harm. Using an intersectional social justice approach, they seek to ground the Centre’s direction and wider conversations about mental health in their lived experiences.

The CSMH sits across IoPPN and the Faculty of Social Science and Public Policy (SSPP) and supports a range of research programmes which all address some aspect of the social determinants of mental health. 

You can read more about the LEAB here and CSMH here.

This blog is part of a ongoing series looking at research culture at IoPPN. If you would be interested in contributing, please contact aneita.pringle@kcl.ac.uk.