This is a transcript of a podcast interview with Erin Walker (EW) and Katrina Brooks (KB) conducted by Douglas Badenoch (DB) @DBadenoch. Recorded at the Cochrane Colloquium 2018. Listen to the podcast below.
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DB: Hello everyone it’s Douglas here again from Beyond the Room at Cochrane for All, and as you know Patients Included is a key theme of the conference. I’m very happy to be joined by Erin and Katrina, who have been doing some very interesting knowledge synthesis work involving young people. So, Erin, welcome.
EW: Thank you.
DB: Would you like to introduce yourself?
EW: My name is Erin Walker and I work at UCLPartners but I was working on a project funded by the NIHR, about an evidence synthesis and that’s when I met Katrina.
KB: I’m Katrina Brooks, I’m a young person representative, and I was part of the study.
DB: Brilliant. Well, Erin, could you give us a quick run-down of, you know, a twenty second summary of what the summary was about and what you managed to achieve.
EW: So, the evidence synthesis that we worked on was led by the PenCLAHRC and the Evidence Synthesis team there. Together we collaborated and put together an application to the NIHR for a Health Technology Assessment grant which was successful, and funded this work. It was all about looking at interventions that work for children and young people who have long-term physical conditions and mental health impairment as well. So, my role on the project was as a PPI co-investigator which meant that I got together a group of children and young people to help us advise on this, throughout the whole steps of the evidence synthesis.
BD: Wow, so, from start to finish.
EW: That’s right.
BD: So how did you go about recruiting the group?
EW: We were very lucky. So, I was based at Great Ormond Street Hospital for Children in London, and I talked with my colleagues from the evidence synthesis side. We worked out the nature and the characteristics of the sorts of young people who we wanted to involve, which I think is so important in doing patient and public involvement. You have to be very careful and thoughtful about who you need involve, to help add value to the project but that is also a meaningful experience for them. So, through my connections at Great Ormond Street Hospital, with a clinical psychiatrist, sorry psychiatrist, and somebody who works in patient and public involvement with rheumatological patients, I put together an advert and we circulated it in those networks. And we had 8 brilliant young people come together.
BD: Excellent. So, Katrina, you were one of those people. How was it for you? What attracted you to getting involved in this in the first place?
KB: I’d been involved in other research studies and I’ve always had an interest, ‘cause it’s so important to make the change for the better. Going there was so much fun to meet other young people who have similar life, lives, that I have, and um, just being able to meet young people, ‘cause I wouldn’t be able to do that on a normal day, ‘cause most people don’t have a long term condition, or have that as well as a mental health problem. So being able to just talk about my feelings and feel like everything I was saying wasn’t just, I wasn’t just saying it, it was going in to make something better, and help other young people.
DB: That’s brilliant. So you’re obviously got quite a lot out of it…
DB: … um, personally. And how do you feel your contribution, what sorts of activities were you contributing towards in terms of the knowledge synthesis work?
KB: Well we were asked a lot about what interventions we had used along our many years of dealing with our conditions, and so having our input on the different interventions that we used, like CBT or music therapy, and just giving our opinions about the different services there are and I felt like I was actually doing something.
DB: That’s brilliant. And in terms of what the experience was like, I mean what was it that the involvement team did that particularly helped you to get involved?
KB: I mean they’re all very open. They all told us that this was a safe place, and they made it feel like a safe place, and they’re all really nice people. I mean, Erin is wonderful, I mean she’s bringing me all the way to Scotland, I mean how cool is that?! And she’s so nice and she’s helped me through all of this. So, I mean they’re all just great people.
EW: And we didn’t pay her to say that. (Everyone laughs.)
DB: But maybe later. (Everyone laughs.) Is there anything, I mean particularly Katrina, any advice you would give to people who were wanting to involve young people in their research work. Anything you would suggest to them?
KB: Don’t hesitate. I think people underestimate young people, and think that we don’t care or we don’t have the capability of understanding this very complicated world. We do, we want to know, we want to learn, and we’re very open to hearing what you have to say and taking that on board, and we can answer questions. And we are reliable! I think people think we don’t care, we just won’t show up or we won’t care, or get bored and leave. But that’s not how it is. I’m very interested, and all the people I’ve met at research studies are all very interesting. And we know our stuff. You teach us, and we will remember. So, don’t underestimate us.
EW: It was very interesting for me to observe the evidence synthesis team, and their first time doing patient and public involvement. And I think one thing, from my observation that helped work well, and helped the process of involving children and young people was that we all came to, literally, the meetings with a very open mind. And we confessed our ignorancies and the things that we didn’t know about, and areas that we didn’t have experience in. So all of the members of the evidence synthesis team turned up, they came from Exeter to London for four meetings. And they all contributed in brainstorming, and were very careful about what involvement we wanted, and how it could benefit young people. And I think it’s just really important for people who are working doing evidence syntheses, which can be such a cerebral process, that interacting with children and young people can help make it very real. But I think it’s also important to acknowledge where you need to work to meet the young people where they are, and be very open to how young people work differently and have different ideas than you do, but it is definitely doable. And there is, it was such a positive experience on this project, not just for me, but I know I speak for the others, and the research team who went away at their computers doing the evidence synthesis for so long.
DB: So in terms of the, how people at Cochrane might want to take forward this kind of involvement work, is there anything in particular about maybe the more quantitative-type researchers who maybe don’t, doesn’t come naturally, to provide that kind of support? Is there any messages we have for them, and how they would get started?
KB: I think just being open and thinking carefully about how you approach us, because I think it’s quite easy to scare someone off if you’re too, kind of, medically, with big medical words and kind of quite demanding. As long as you give us time to realize that you’re not overlooking us, and just take your time and reassure us that you actually care what we have to say.
EW: Yeah and my observation, as somebody who doesn’t work in evidence synthesis but who worked very closely with the evidence synthesis team, is that it is such a cerebral process doing an evidence synthesis and it’s, you know, this very meta-process that sits above research so it can get I think even harder for young people to then understand, because no one was actually participating, and we weren’t collecting data per se, that I think the evidence synthesis team, maybe because they work on topics that are very patient-focused, I think acknowledging where they had areas of weakness, and recognizing that as people who work in evidence synthesis they don’t interact with patients, and particularly children and young people every day, but then seeking outside help. So that’s where, when the PI contacted me and said, ‘oh we’d really like to do some children and young people’s involvement’ I was delighted, because I feel like all of our skills together helped make this a very enjoyable process that really benefitted the evidence synthesis. So I think it’s about finding support in your organization where it exists. And the NIHR are increasingly creating posts for members of staff who work in patient and public involvement. And so the people are around, you just have to find those people who have that other skill set to what you have.
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