Joining a project as a Lived Experience Researcher

In this guest blog, Jackie reflects on her journey becoming part of a rapid response research project exploring mental health during COVID-19, and the lessons learned along the way.

Meet Jackie

I first got involved as a Lived Experience Researcher in 2010 following a major life event where I ended up in a psychiatric unit. On leaving hospital, I found out about an opportunity for Patient Participation and Involvement (PPI) with Making Involvement Matter in Essex (MIME) at Anglia Ruskin University. This further led to my involvement with a number of research studies, but especially with Division of Psychiatry, University College London (UCL), which is what this blog is about.

You can bring so much to a research study, for example helping to write topic guides for questions for the interview questions. During this process you can make sure language is plain English and not having any questions that might cause offence, or immediately close down a conversation. I realised the importance of mental health research, along with the important role and difference lived experience researchers can make. I have found interviewees seem to relax when you share you have lived experience. Additionally, I received some excellent training, which helped me grow in confidence and helped with my mental wellbeing.

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Responding to COVID-19 with co-production

Even before COVID-19, I had been involved as a Coproduction Group (CoG) member of Loneliness and Social Isolation in Mental Health Research Network at UCL, since June 2019. Then in March 2020, the pandemic hit. Despite this, what was great was that UCL decided to bring together different Lived Experience Researchers from different studies, along with academic researchers, to work together in co-production. As a result, a new co-production research group was created within the NIHR Mental Health Policy Research Unit Covid-19, and I became part of a rapid response project.

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Although I had been involved in writing some research papers before, this time fifteen authors worked collectively to write a paper. The group included six researchers who worked from a lived experience perspective, and ten (including three clinical academics) who worked in university research staff roles from a range of disciplinary perspectives. Initially, we met weekly to design the study, work on the topic guide, and decide who wanted to be involved in interviews. The project offered training to any lived experience researchers who had not interviewed before or wanted a refresher. I felt very much listened to, included and valued, which has not always been my experience. We agreed to work on certain areas of the paper and share different comments, then agreeing as a group what would be the final version to submit.

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I also had the chance to work on coding matrices for the paper - this relates to the data (information captured during research interviews) and the various interpretations of it made by the different parties e.g. lived experience researcher and academic researchers. After this, I met with another lived experience researcher and academic researcher, then met with the wider group to discuss our thoughts. This helped broaden my learning, so was great for my personal development.

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This coproduced, participatory qualitative interview study was finally published in 2021, focusing on the experiences of living with mental health problems during the COVID-19 pandemic in the UK. The published paper echoes my earlier point: utilising Lived Experience Researchers "provided a deeper understanding of the interviewees’ experiences which helped guide the interview, and also provided a more natural rapport making the interview feel more conversational."

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Afterwards there was also follow-up to this study, of which I was also part of. In 2021, a survey was conducted with Lived Experience Researchers to seek our views on the study. Following this experience, I have continued to be involved with UCL as I feel they are willing to learn how to best co-produce with people with lived experience in order that we learn from each other.

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Get involved

We hope that Jackie's story inspires many others to join co-production projects as Lived Experience Researchers. If you have a co-production story of your own to tell, from the perspective of Lived Experience Researcher or any other role, we'd love to hear from you. Whether it was a pleasant experience, an unpleasant one, or anything in-between, sharing it with our community allows us to learn and grow together, reflecting on each others' point of view. Drop us an email at coproduction@ucl.ac.uk if you would be interested in this opportunity.

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For more opportunities to get involved in our work, have a look at our events page and be sure to sign up to our newsletter to hear about co-production news each month.