Reaching and engaging people with long lasting pain: Experiences of a public contributor and research ambassador

This project aimed to broaden engagement in research by people living with long-lasting pain that affects the way they live. The objective was to co-produce an approach to reach people living with pain who would not normally have the opportunity to share their experiences and opinions. Using that co-produced approach, the project also aimed to identify what research really mattered to people living with long-lasting pain.

How did you and other public contributors get involved in the project?

I was invited to get involved by Louise. I have a lot of respect for the work that Louise has done so when she invited me to join the project, I was keen to take part. In turn, I shared the invitation with other people I know who live with pain and have some experience of being public contributors in one way or another; and 2 of them joined the project. Sarah and Krysia knew another person from their work at Keele University, so in total there were 5 of us in the core group of public contributors.

What did collaborating on this project look like for you?

The core group of public contributors lived all over England so we met online about every 4 to 6 weeks for 9 months. At early meetings, we had discussions about the aims of the project and about topics like how to foster an inclusive environment and how to build trust. We also discussed how we wanted to keep in touch and agreed that a WhatsApp group was the way forward. Everybody got to have a say in the meetings, we all pitched in and the decisions were made as a collective. We agreed that we could create a role for ourselves as ‘research ambassadors’.

Tell us more about the ambassador role

We agreed that as research ambassadors we would go out and connect with other people with long-lasting pain in our own respective communities. The aim was to have conversations with them about their experience of living with pain and to ask them what research matters to them.

Having our own experience of living with long-lasting pain, we knew how important it is to feel heard and understood. We decided that listening with empathy was one of the essential roles for a research ambassador.

How did you get on involving people in your community to have those conversations?

Going out to find people who would agree to have a conversation initially felt quite daunting. It took a lot of motivation on my part and I felt quite anxious. However, having the support of the group was really useful; they were all in the same boat as me. They posted on WhatsApp about their experiences of their own conversations which gave me more confidence about what I needed to do.

I asked a few people to take part. In the end, someone I knew quite well agreed to talk to me about their pain. The conversation went well which gave me a boost. Having my own experience of pain was really important and it helped me to understand what they were going through.

The group came back together to share our experiences and we used these to work out a “job description” for future research ambassadors and what research really matters to people like us who live with long-lasting pain.

What is your previous experience of working as a public contributor?

I have lived with various pains for a long time which stopped me doing anything, it all seemed impossible. I’ve been advocating for people with pain for a few years now. It gives me confidence that I can still do things and that I still contribute to society.

Why did you decide to collaborate on this project?

This project is all about hearing from people who would not normally have the opportunity to take part in research, so it’s all about diversity and inclusion. It used co-production and even before this project, co-production is something that I valued strongly. In the end, the project could not have been successful without true co-production, because our lived experience was essential to us going out into our communities and having conversations with people.

What did you personally get out of collaborating on this project?

Collaborating on this project has helped me to understand that co-production can work and it can actually enhance and add value. It also highlighted the value and role of peer mentors to support other people living with long-lasting pain. We agreed as a group that this needs to be a focus for research in the future.

In terms of my own pain self-management, having collaborated on this project I think differently about my own pain. It has helped me to understand that pain is even more complex than I thought, and there is no “magic pill” or “best clinician”.

I found the project was stretching me, as I was having to do things that I had not done before and learn new skills. I would say that I am most proud of the fact that I set myself some goals, and I achieved them, even though it was challenging at the time.

What advice would you give to researchers, public contributors and potential public contributors who are interested in a project like this?

I would tell them to trust in the process of co-production and involve people like me as equals at the earliest possible stage. I also want to tell researchers to take some risks and accept that with co-production, they may not necessarily end up where they expected, but I think that the added value is immense.

If you have any questions about this work or would like to learn more, please email Sarah Harrisson

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This article was written by John Alexander* a public partner on this project. 

*Please note John Alexander is not the person's real name and on their request, it has been changed to protect their identity at this point in time.

Funding: This work represents independent work funded by the National Institute for Health and Social Care Research (NIHR) School for Primary Care Research (NIHR SPCR) under its PPIE programme (Reference Number 688) and NIHR Research Design Service West Midlands under its Public Involvement Fund. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Acknowledgements: Many thanks to all those who contributed including the core group of research ambassadors: John Alexander*, Samina Begum, Simon Horvat-Marcovic, Claire Toussaint and Louise Trewern. In memory of Simon Horvat-Marcovic.