In this blog post, Dr Kirsten Bell, Senior Research Fellow in Anthropology in the Patient Experience Research Centre (PERC), Imperial College London, shares reflections from PERC’s participation in the Integrated Care System North West London funded Research Engagement Network roadshows.
In early 2024, the Integrated Care System (ICS) North West London funded a collaboration led by NIHR Applied Research Collaboration (ARC) Northwest London and the Community Voluntary Sector Organisations in the boroughs of Ealing, Hounslow, Brent and Hillingdon to host a series of roadshows at their community centres. The goal of the roadshows was to reach out to people in community settings to talk about research, in the hopes of raising awareness of – and interest in – research amongst a more diverse public. The roadshows involved health checks and workshops, along with a variety of stalls highlighting local services and research studies and programmes.
Following the recent release of a video on the roadshows, we wanted to take the opportunity to reflect on what was brought home to us as a result of the 18 roadshows we participated in to support our work in bringing patients, the public and researchers together in collaborative partnerships.
First, the roadshows were a valuable reminder that involving the public more actively in research means going out into communities, rather than expecting them to come to us. While attending the roadshows provided an opportunity for Imperial researchers to talk about their studies with the public, it often led to the realisation that what seemed straightforward to them was much less clear to roadshow attendees. One researcher later reflected on the need to ‘be very clear in my language and what I need from people when guiding a research project’. Another realised that ‘my idea is still very difficult to convey and the event confirmed this – so more work needed’.
For us in PERC, it also illustrated that the concept of ‘patient and public involvement and engagement’ (PPIE) is often difficult to convey to members of the public – especially the idea of including members of the public as research advisors as well as research participants Although some attendees could see the value of helping to shape research, the usefulness of this wasn’t clear to everyone. For example, at one event, a PERC researcher spoke to a couple where the husband had recently had a heart attack who were immediately attracted to a brochure we had about a heart study – until, that is, they realised that the brochure was for public partners on the study, rather than participants. They were specifically interested in the latter based on the premise that it might improve his care.
This highlights a second key takeaway from the roadshows: that while the lines between research and healthcare are clear to researchers themselves, the distinction is much less self-evident to the public than researchers assume. Many attendees didn’t differentiate between Imperial College and Imperial College Healthcare NHS Trust, and wanted to talk about their experiences with the Trust – such as issues accessing appointments, etc. Others wanted advice on healthcare more generally. For example, one woman had signed up for a Boots health check and hadn’t heard back from them, and wanted advice on this.
As a PERC fellow later reflected,
“As a clinician researcher this made me consider how difficult it is to establish boundaries or divides between clinical care and research, and whether actually the semantics of these divisions are relevant or useful to members of the public. It also made me wonder whether priority setting in research should focus more on some of these pragmatic details e.g., access to appointments/ ability to be seen in a convenient location rather than the ‘sexy’ science that is often focused on at Imperial.”
Some of the researchers who attended the roadshows with us were initially disconcerted by these interactions, as they had anticipated the opportunity to focus on their research studies and solicit potential interest in participating in them. However, these conversations highlighted our third key takeaway, which is that trust and relationship-building is critical to engaging communities in research, and that research is often the product of relationship-building rather than a starting point for it. As one researcher later reflected, while these community events don’t necessarily yield immediate dividends for researchers themselves, they provide an opportunity for ‘understanding communities’ attitudes to research’. Likewise, another researcher observed, ‘I learnt about people’s attitudes towards research and about a lot of community events and people that are engaged with the community and their concerns and beliefs’.
The roadshows highlighted the value of bringing researchers and communities into conversation, with everyone ideally learning from the interaction. We were able to learn more about the communities Imperial researchers want to engage with: how these communities are structured, the local organisations serving them, what local health concerns and issues are, and local communities in Ealing, Hillingdon, Hounslow and Brent were able to learn more about the research being conducted at Imperial and beyond. To paraphrase the movie Casablanca, here’s hoping that this is the beginning of some beautiful (research) friendships.