The voice of lived experience in research
Service user involvement has become a key part of research and many funding bodies now have it as a requirement to secure funding. However, as Laidlaw Undergraduate Scholar Lizzie Mitchell found out in her work this summer, this service user involvement comes in many different forms. It can range from simply informing service users of research outcomes to fully integrating service users into the research project at each stage of the process. As part of her summer project, Lizzie interviewed Kate Farley, research fellow and programme coordinator for FReSH START, to discuss her experience of involving service users in research and the lessons she has learnt along the way.
What is your view of involving people in research? Do you think it enhances the research in any way?
I think involving people in research is incredibly important; it improves the quality of research, the quality of outputs. Although it’s been in funding body advice and requirements for a while now, it’s so easy to make service user involvement a tick box exercise – if you have a small advisory group who don’t say much, or you just take your materials to people to check the language, then that’s not true involvement. That’s where I was 18 months ago! I think it’s so important that everything from framing the research question to getting feedback should be integrated with input from people throughout. The value of proper involvement is immense, both in terms of the quality of the research and in giving the research credibility later on. It makes such a difference when talking to new organisations and telling them the level of participant involvement – it really does help give it more credibility.
Can you talk us through the process of involving people in research? What was your role?
Our original idea was that there would be a group of people from start to finish who would tell us what they thought about the research and give us patient-participant involvement. However, it became very apparent very quickly that finding a diverse group to be involved for the duration of the project would be very difficult, so we decided to seek different people to be involved at different stages.
We’re based in Leeds and usually use Leeds and York Partnership NHS Foundation Trust who have a group called HEER (Help from Experts by Experience for Researchers) which is a group of people with lived experience who meet monthly and provide feedback on research questions. These organisations have a lot of experience in doing this and understand research methods, so they aren’t starting from scratch. They did quite a lot of work and provided feedback on individual aspects of the study such as patient facing documents and information sheets.
Then we called Marsha McAdam, who leads a service user group, and explained what we were looking to do; arrange 3 daytime meetings with a group of 8-10 service users to look at our analysis, provide feedback and be continuously involved in the project’s development. She was brilliant and got in touch with her large network and because she’s a service user herself, she was able to communicate in the right language. We ended up gathering a diverse range of people who were willing to contribute to the project.
Were there any extra considerations you had to take when involving service users?
One thing was the wellbeing of participants. We have a duty to make sure they are safe and we’re not putting them under any distress or difficulty, but we have to balance that these people have agency and capacity; they chose to be a part of this. We had to strike a balance between keeping their welfare in mind, but not being patronising. We also had to think about things like setting ground rules, debriefing and de-escalating things at the end of the day.
We were very aware of the potential power imbalance between the research and the participants too. The researchers were the ones with the money and a certain ‘perceived status’ – we were paying them; we didn’t want them to feel less important. We overcame this power imbalance by using Marsha as a ‘gatekeeper’. She acted as a chairperson by facilitating the workshops and we, as researchers, were just part of the group, the same way the participants were. We tried to promote equality by saying ‘we are all experts, but experts in different things’. It was hard though, as we had to actively try and portray this so the participants will start to trust us. We tried to make it about them, and not about us, and always come back to them and what they had said this time/last time, and emphasising what we had done with their feedback, demonstrating how we used their input in the wider research project.
Which parts of the workshop worked well?
I think what worked best was working with Marsha; each session was planned with her. We talked to the therapists and the research team about what we needed to get out of it and then fed this back to Marsha, who told us what she thought would and wouldn’t work. We were able to bring together different perspectives and techniques for running the workshop but Marsha was crucial in practicalities like how long to spend on each topic, how to make introductions work.
Which parts could have worked better?
I learnt that passively recruiting doesn’t work; successful recruitment involves choosing a person carefully and asking them to be proactive about recruitment. I would plan to talk to participants sooner about their what they want to get from the workshops and how much they want to be involved. I would also think about Marsha’s role in the project a lot sooner; having a ‘gatekeeper’ role was amazing as she acted as an anchor. But obviously she had some anxieties as well and she was carrying responsibility for the group, so I would definitely be more proactive about ensuring she was supported in this role, if we did it again.
Did you receive any feedback from the service users about the workshop?
At the end of the last workshop we asked everyone what they’d got from it and everyone was really positive. Marsha conducted a 40-minute session where we all talked about our experiences and I found it surprisingly moving; some people said they felt like they’d never had a voice due to their experiences, but this research had given them a voice. One person said ‘I know your research won’t help me because I’m old but if there’s young people I really hope their experience can be different as a result of what I’ve done’. It was really unexpected for me and I feel like we should be especially proud of what we’ve done; giving people a voice is a massive thing, it’s amazing to say we’ve been able to do this with people.
With thanks to
All those who have attended our workshops
Helen Cooke - LYPFT
Manchester Cathedral (workshop venue)
British Muslim Heritage Centre, Manchester (workshop venue)
Age UK, Manchester (workshop venue)