Sustaining public engagement for under-represented groups and creating space for culturally sensitive involvement: Reflections from PPI lead on the TOUS study

My talk was part of the plenary discussion on Inclusive Engagement in Research chaired by Professor Ann-Marie Towers. Also on the panel were Anne Pridmore (disability rights activist) and John Potts (Kent Research Partnership). I discussed philosophy and practice for public involvement and engagement, providing examples from working with three groups under-represented in health and social care research (Deaf British Sign Language users, older ethnic minority women, and refugees and asylum seekers). I mentioned the TOUS study as an example, and finished with reflections and recommendations.

Common concerns among minoritised communities are that they are being over-consulted, that they provide information and hear nothing back from researchers and that their views often get mis-represented because they are not involved in the interpretation of data or dissemination. Specifically, for ethnic minority communities there are collective histories of wars, enslavement, migration, political movements and anti-racist campaigns that researchers need to be aware of in order to develop culturally appropriate and sensitive practice.

There is diversity in people’s experience of research participation, public involvement and engagement because each project is different and these activities have varying importance within different academic traditions. Also funding bodies have different expectations. This might cause confusion to third sector organisations and community members as the level and terms of engagement can vary even when different projects are delivered by the same university. Furthermore, involvement work tends to be conducted by staff on precarious part-time and short-term contracts, who often move on to other projects. Disruption in the relational aspects might hinder the depth and the quality of engagement and, potentially, people’s level of input into the research process.

In 2023, NHS England published guidance on ‘Increasing diversity in research participation: A good practice guide for engaging with underrepresented groups’ The report recommends that the first stage in increasing diversity of participation should focus on building relationships. It highlights that positive relationships are built on trust, and trust is developed with groups through listening to their experiences and engaging in culturally competent ways. It encourages the development of a two-way relationship where a group knows that its insight and expertise will be acted on.

For these reasons, I strive to proactively maintain continuity in my engagement between projects. When needing to work with a new group for the first time, I prefer to start with public engagement activities (typically reserved for end-of-project dissemination) so that members of the public can get to know the project and the people involved before starting to advise on the research design. This can lead to increased research participation because I am not ‘cold calling’ on communities to take part in a research project that is completely unknown to them. I also seek to attend events in the community, volunteer and do pro bono work such as sitting on project advisory groups for charities and advising on evaluation. Finally, personally signing up as a public involvement contributor has supported my own experiential learning on how it feels to be asked for advice and what ingredients make a conducive environment where lived experiences are appreciated and can best have an impact on the research process.

I finished my talk by picking up broader questions that were raised in Professor David Abbot’s keynote and provocations titled Who are we? What are doing? Where might we be going? He mentioned the following:

‘I think they look to people like us in universities…I think that communities look at us, and say: ‘Where were you when we were being dismantled, what were you doing, were you writing books and reports about us and getting promotions and prizes? Did you stand with us? Did you help us, or did you say you didn’t have a current grant or budget…or that it would threaten your impartiality?’

These questions and observations come 32 years after Professor Mike Oliver’s seminal article titled Changing the Social Relations of Research Production? In it, he argued that research on disability has had little influence on policy and made no contribution to improving the lives of disabled people. It is important we aren’t having this conversation in ten years time and we can do better. The desire among academics to support communities through relational activism and knowledge exchange is strong as most health and social care researchers seek to generate evidence to improve outcomes for service users. However, this can be dampened by crippling workloads placed on a largely precarious workforce that is struggling to retain continuity in employment. To avoid having the same conversation in ten years time, then people in positions of senior management within academic institutions could consider: i) creating better reward and recognition structures within academic promotion pathways and workload models, ii) providing bridging funding between short-term contracts, iii) creating peer research positions for people with lived experiences, and iv) offering funds for knowledge exchange activities beyond the end of individual projects. Creating environments where strong and long-lasting relationships with service users flourish requires continuity and investment; we cannot rely on good will alone.

The TOUS study mentioned in this blog is funded by a grant from UK Research and Innovation (MR/Y010000/1). The views expressed are those of the author and not necessarily those of the funder or the author’s host institution.