The power of public involvement in research
Dr Kirsten Bell is a senior research fellow in anthropology at our Patient Experience Research Centre (PERC). In this blog she explores the crucial role of public engagement in shaping impactful research and what motivates people to get involved in research. We also hear first-hand from a research participant!
How has the Airwave study evolved over time?
Launched in 2004, the Airwave study is the largest cohort of police employees worldwide. It was initially designed to explore the health impacts of the TETRA radio system, however in 2013 the wider value of the Airwave cohort, data and samples was recognised and the scope was broadened to consider other health issues. It is now a tissue bank used by researchers to explore a variety of questions relating to police health.*
In 2023 the Airwave team decided to create an Airwave Participant Advisory Group. A call for expressions of interest received an overwhelming and unprecedented response, with 348 participants submitting applications. We could see that this provided an opportunity to learn more about participant experiences of and views on the study, why they took part and remained part of the study for so long and to ensure that their voices were heard.
Why were participants motivated to take part in the study?
Based on a survey of advisory group participants, most had joined because of a desire to improve the health and safety of police officers and staff. The free health checks provided as part of the study were also a clear motivation for joining. This came across particularly strongly in the interviews, where a lot of people said things like, ‘If I’m being honest, I joined because of the health check’. Surprisingly, although some participants were very clearly concerned about the potential health effects of the TETRA communication system, this was not a primary motivation for many people.
This gave us a really interesting insight into the motivations for joining a study and showed that it’s not always about the study itself or the potential findings, but the benefit to the participants.
Were there any other surprising findings?
How unmemorable participants found the results of the study and general study communications! A notable number of survey respondents and interviewees claimed they had never seen our newsletter or website, despite having engaged with both to apply for the advisory group.
This highlights a recurring challenge in research communication: the gap between what is intended in study communications and how they are actually received and provides us with lots of things to think about when it comes to communicating with study participants. It also shows that you can’t always take survey responses at face value!
What are the implications of these findings?
Researchers need to rethink how they communicate their work. Lots of participants I interviewed talked about ‘academese’ and how inaccessible academic communications are – communications that are designed to be ‘lay’ (plain English) summaries! Most don’t care about what you did and why – they want to know the key takeaways from the study, and how the findings might impact them personally.
Why is it important to involve patients and the public in research?
If researchers decide on everything, then it is not representative or democratic – it is vital that research actually represents the communities it aims to benefit. Ultimately it improves the quality and impact of the research. I think there’s something intrinsically valuable about conversations between researchers and the public, whenever they happen. We sometimes get overly caught up in the distinction between ‘involving’ the public in research and the public ‘engaging’ with research, but bringing researchers and the public together helps to build relationships and a degree of trust and mutual respect.
How can patients and the public get involved in research?
There are plenty of opportunities for patients and members of the public to get more actively involved in research as advisors. If you want to learn more about these opportunities to become a public advisor or partner in research, you can sign up to the PERC public involvement and engagement mailing list or you can email the team at publicinvolvement@imperial.ac.uk.
A patient’s perspective
Hadeya Zaman is a participant in the Airwave study and a member of the advisory group. She shares her experience with us:
“It's been a very good experience to hear the research results and to ask questions for clarity or to provide suggestions for the presentation of the results so it's easier to interpret/digest. The communication from the team has always been timely, friendly and kept us engaged and eager to join the next session.
“The study continues to provide findings that are helpful for my own health awareness and ensure that I eat healthy and stay active. It's always interesting to hear about the health of police employees in general too.
“I wanted to give something back and help provide a different perspective which is why I joined the advisory group. I'd encourage others to get involved as we all interpret data in different ways so it's useful to come together to ensure the messages of the study can have as much impact as possible.”
*A research tissue bank or biobank is a collection of human tissue or other biological material, which is stored for potential research use beyond the life of a specific project with ethics approval or for which ethical approval is pending.
