In this recent interview, Dr Camilla Forbes from the Department of Health and Community Sciences shares information about her work in Patient and Public Involvement and Engagement (PPIE), highlighting the importance of engaging communities in research on health promotion and public health.
CH: Would you like to start by introducing yourself?
CF: I am Camilla Forbes, a researcher interested in public health, obesity prevention, health promotion and PPIE. I’ve worked at the University for nearly 20 years.
CH: So you’ve got an extensive history with PPIE. What drew you to this and what’s kept you going with this work?
CF: The first trial I worked on back in 2006, alongside Katrina Wyatt, showcased to me the importance of involving families in research. Katrina has a wealth of experience in PPIE and has been my mentor. Following this trial the charity Cerebra funded a research centre for families with children with disabilities and we created the post of ’Family Involvement Coordinator’
Following this, another charity All Saints Education Trust approached the University to fund work looking into health promotion in secondary schools., I was keen that young people had a voice in that, so I set up an advisory group based in a school that have very little external engagement. I had built up a relationship with a member of staff there, and part of the deal was I come to the school 90% of the time and we annually organise an out of their school activity, so they’ve been to the university, and last summer they went to London. My fellowship is finished, but the school’s still really keen to keep it going, so I try to get them costed into projects as much as I can.
CH: And how do those perspectives influence your research? Not just in the sense that they are part of your methodology but going forward with future projects.
CF: I think we can be a bit ivory-towered in academia, and if you don’t have the perspective of the people affected by whatever you’re researching, you can quickly lose sight of common sense. That’s what I find most useful; sense-checking my thinking. What we think might be important isn’t always for the people experiencing it.
Also be mindful that if you’re expecting young people to attend meetings in the middle of the day, that’s not going to work!
CH: Building on that, when you’re working with these communities, particularly audiences who might be emotionally affected by these topics, what are your key considerations? And what are the challenges you face?
CF: Thinking ahead of time and being prepared so that we can say: ‘we recognise that this might be emotional and potentially triggering; and this is what we’ve put in place to support you’. A thing that often is underestimated with PPIE work is the time it takes. Relationship building is so important – and trust – and that takes time to build.
It would be great if the university could recognise this as a core activity, so early projects could be co-created with young people. A lot of the young people I work with have got amazing ideas around social media and mental health, but we don’t have the money to start right from the beginning with them.
Another dilemma I find with young people’s groups is the value of face-to-face meetings. It’s easier to do it online on so many levels, but the engagement is very different. That’s why my group works so well, when I arrive at the school, there’s bit of time before, and after, a couple of them often hang around to chat. So, it’s the bits on either side that help build relationships, as well as the meeting itself, which you don’t get when you’re online.
CH: And lastly, what would your advice be for anyone looking to bring public engagement into their research for the first time – particularly around community health, working with members of the public and younger people?
CF: Give it time. And when you find the community groups that are relevant for your projects, do your research and go out and talk to them! Also make sure when you write your grant, you properly resource it and include plenty of costing for their travel and time and snacks! It’s time and resource – which is nothing earth-shatteringly new, but it is important.
It makes all the difference if people feel they are being properly listened to and heard. The reason they’ve got involved is usually because it’s something they feel strongly about, and if we dismiss that, we risk doing more harm than good. Yes, it can be messy but sit comfortably with the messy and allow it to change the way we do things for the better! Why would we do research projects and not talk to the people it’s going to affect the most?