‘Inspiring Stories’ with Caroline Barker

Clinical and Experimental Scientist

c.barker@soton.ac.uk

This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton‚Äôs Faculty of Medicine.

How did you get started with public engagement?

So I started working in public engagement when did a PhD in breast cancer and I was funded by Cancer Research UK (CRUK) and, in a positive way, they were quite forceful about encouraging researchers to speak about our work with the general population. As it was also a CRUK funded centre, which meant there were quite a lot of support groups and legacy holders that would want to come to the centre to understand where their money would be going. I therefore [took the opportunity] to engage with the public, and I found that I really enjoyed it. the lab tours or open days and the University Science Engineering Day, where we speak to hundreds of people and play fun science games. As I came towards the end of my PhD I decided that I didn‚Äôt want to [remain] fully in academia, so, as I loved the engagement world, I started looking for roles in public engagement. The job I took is public involvement, which is very much a two-way conversation with people affected by health and care research. It is all about making sure that people who are affected by decisions relating to health and care research have a real say in what that research is and can influence what research provides for improving health and care. Having arrived in a public involvement job and done it for a few years now, I really love how much of an impact it makes to actually see patients in the public, really shaping what research is done, how it’s done, how is shared with the public after [completion]. 

So what kind of activities would you say you do to engage? Do they differ from public engagement activities?

I think there’s a lot of overlap.in some respects, and I think the best public engagement opportunities are very similar to involvement or indeed the same as involvement. When I think about engagement, I often think about things like open days, where they might take away a bit more knowledge about science, but they don’t really change the way we do science ourselves. Whereas good engagement does influence what you do as a researcher. Whereas public involvement is all about bringing people in to do stuff together and work together long-term in collaboration with the people that are going to use the service, to change a trial design or decide what a new service is going to look like for mental health care provision.

We do range from bringing people together to consult on items [such as a trial plan which] is run past the likely target for your trial and you get their feedback on whether or not that trial is fair thing to ask of a patient or whether the language you are using is appropriate. [This brings up] small things that researchers can often forget because they’re thinking about the science.

My team exists to support researchers with their public involvement therefore we work with lots of different types of projects and depending on where they are in their project, this determines what kind of public involvement they can do. As we do a lot of clinical trials and health care interventions, the work we support tends to be in the earlier stages of research rather than through to implementation and sharing.

‚Äč‚Äč‚Äč‚Äč‚Äč‚Äč‚ÄčWhat reaction do you get during patient involvement activities?

There is that feeling of excitement from the public community side, about being involved and being able to influence something like that. They are all people who are very altruistic, they really do want to support their NHS and you can feel that in in the room or the environment that these people are there to really help researchers and really improve things for researchers. I think it’s a bit of a negative, but researchers are really bad at providing updates to public members, so they might leave the meeting feeling quite enthused but 2-3 months down the line they’ve not heard anything else, and they don’t even know that project got funded or if what they said did make a difference. So that is an issue because what they’re doing is it slightly different to an engagement activity. A lot of the time you do need to be better at offering them opportunity to find out what happened later and then get that feedback and a lot of researchers maybe don’t do that part as much and that can be really disconcerting for people, they’re sharing their life experiences and heir lived experiences with you, and they don’t actually know if you’ve listened because you haven’t fed back to tell them.

A lot of these people still continue to interact with us, maybe not the researcher themselves, but they interact with us, so they build very positive relationships with us as Public Involvement team, so they can get feedback through us. It‚Äôs a range of reactions I think but in general, people are there, just invested in helping. And as you can imagine through covid, people have really been able to feel that what they’re doing is a useful use of their time and give them kind of a positive focus on what is an otherwise quite a negative situation, because it gives them a weird purpose to what is otherwise a difficult scenario. 

Measuring the impact of public involvement

I think the other thing that’s difficult with [public involvement] is to measure impact, which is the same with public engagement. These things are quite hard to measure anyway, but particularly with public involvement, it‚Äôs really hard to confirm that the bit you did relates to that one conversation you had with a member of the public. I have a PhD student, who is looking at the impact of public involvement. and she’s been looking at the impacts on the individuals, and so there’s quite a lot of individuals involved in the work that I’m describing because there’s me or people in my team that are public involvement practitioners and staff, then there’s the researcher or researchers that are present, and then there’s also the public. So each of those individuals have impacts on themselves as well as some of their work. Researchers, for example often leave public involvement meetings feeling really inspired about what they’re doing because they’ve had that reassurance from people who actually need that research to be done‚Ķ this is a worthwhile use of your time and that confirmation that

working really hard on this is going to make a difference in the real world rather than being this really abstract. I think having that kind of motivation from public members that this is a good thing and you should continue, and I want to help you on your journey is really helpful for researchers.

What do you feel happens as a result?

I strongly believe that good public involvement means that you have better research in general that is more inclusive for all audiences. So my kind of particular focus is around underserved people, I’m not going to call them hard to reach because I don’t agree with that terminology, it implies it’s their fault, not ours and actually I think we are not serving them well as a health and care community. And I think that if we can have conversations with people from those underserved groups all the way through research, we will naturally begin to create a more inclusive healthcare landscape by meeting their needs. I think it can make a really powerful difference when it’s done, properly and when it’s done well.

Stay Connected! To find out more about the ‘Inspiring Stories’ series, Faculty of Medicine educational programmes and research, or to get involved use the links below or contact Dr Lucy Green.

University staff or students click here for the Engaged Medicine SharePoint

‘Inspiring Stories’ with Caroline Barker

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