You are here: Lived experience members published in academic journal

“You don’t have to have gone to University to be able to do this level of research and being involved, it’s great, I think it’s fantastic.” Alyce-Ellen, peer researcher

Over the past 18 months three of our lived experience members (Alyce-Ellen, Sue and Tony) have been part of a research team looking at how cancer care treatment can be improved in prisons, a study that is the first of its kind in the UK. Trained as peer researchers, they have supported academics at the University of Surrey (Dr. Renske Visser and Dr. Jo Armes) to design, carry out and analyse qualitative research with people in prison, prison officers and prison healthcare professionals. In this blog Alyce-Ellen, Sue and Tony reflect on being involved in the project as peer researchers and the value of co-producing research alongside people with lived experience.

Being recognised as researchers

Last month our article in the academic journal Research Involvement and Engagement has been published where we honestly and jointly reflect on the challenges and opportunities in co-producing research. This is the first time that any of our lived experience members have published academically from their lived experience, which is particularly significant given that many in the revolving door of crisis and crime are not provided with the opportunity to engage with further education.

“It was a chance to have my say if you like and I think the others felt the same…I'm really proud of it. I'm really proud of the way it was organised and the way that we, the three of us, myself, Alyce-Ellen, and Tony were given every chance. Every opportunity to make changes to it [the article]. Nothing was ever done without our permission.” - Sue

“I think a lot of people as well cos the people in the Criminal Justice System may not have even finished school, erm and by no means academic, so giving them that opportunity…breaking down barriers and you know, you don’t have to be scared of it or look at it a certain way.  You can do it too, you don’t have to have gone to Uni.” - Alyce-Ellen

“I feel proud, it is something I thought would never have happened, so to be part of it, I'm really grateful that I was given the opportunity.” - Tony

We hope our article encourages other academics to consider working alongside peer researchers and our honest reflections offer food for thought as to how such co-production can be carried out meaningfully and safely.

The value of co-production

Involving peer researchers in research adds value across the research process. Not only helping to build rapport between interviewers and people taking part in research. but also in providing different interpretations to the research data that helps to uncover the nuances of people’s lives and experiences.

“I relaxed the prisoners that we were speaking to because I told them I have been sat where they are sat as a prisoner. They related to me, and it helped them to open up” - Tony

“The officers made it sound like they were saints basically and they wanted to help prisoners as much as they could. And it wasn't authentic. You can't be that perfect and that person, I don't think was being honest. You've got to highlight that you can still use that officer's words, but then Alyce-Ellen and I highlighted the fact that it does seem a little bit contrived.” - Sue

The importance of working together as equals

As emphasised throughout our article, open and honest relationships amongst the research team were critical to the success of the research, alongside an openness from the academics to the alternative perspectives that people with lived experience bring to the table.

“Getting the right people [academic collaborators] is critical because you need to know that you can say what you want.”- Sue

“It’s just, just be open.  I think its like relationship building, well I know this, you know this, lets work together and figure something out.  I think if you are scared of people or scared of working with people with lived experience, that… that can hinder it a bit that’s why you need to be as open and frank and like we have been, well what happened in this situation before … how do we work around this?  And again, that coming together is really important.”- Alyce-Ellen

“We were given roles to play before we went in that helped as well, set you up… we had an idea of what we were going to come into. That's what I would advise, sign off a little bit of a role play amongst whoever you're with before you go in just so you're more prepared.”- Tony

Shifting the research landscape: peer research

A lot more than a methodology, peer research involves a much more radical questioning of long-held beliefs about research. These include who has the power to decide who can be a researcher, what counts as research, and what is researched and how.