Jo's story

Being part of research that really listens

"Taking part in this project with Vocal Collective and the Medical Research Foundation has been one of the most meaningful and positive experiences I’ve had in public involvement.

From the very beginning, it felt clear that this was a process built with care. The information we were given, especially the lived experience guide, was clear, detailed, and easy to follow. It explained not just what we would be doing, but how we would be supported along the way. That made a real difference, particularly given the sensitive nature of the topic.

I brought my own perspective, while also learning from and listening to the experiences shared by others. What stood out throughout was how much value was placed on people working together and learning from each other."

A thoughtful design

"The way the process was designed worked really well. It wasn’t rushed or unclear, it was broken down into clear steps. We were given time to read and reflect on research applications and then come together in small groups to talk things through. These discussions were an important part of the process. They allowed us to share different viewpoints, notice common themes, and raise concerns in a supportive space.

Importantly, those conversations didn’t just stay in the room. They were carefully written up and carried forward into the next stage. This meant that when decisions were being made about which research projects should move forward, known as shortlisting, they were informed by a shared understanding, not just individual opinions.

That structure made the whole process feel fair, balanced, and genuinely collaborative. It also meant that no one was expected to carry everything on their own."

Wellbeing and support

"Another thing that stood out was the level of support throughout. The team were always approachable, and it was easy to ask questions or check things if needed. There was also a strong focus on wellbeing. We were encouraged to take breaks, step out if needed, and look after ourselves. The mindfulness sessions were especially helpful, giving space to pause and reset.

People were also supported to step out if needed, which created a sense of trust and made it easier to take part in a way that felt manageable. At times there was a lot to take in, but the structure and support in place made it manageable. When things weren’t clear, they were explained in a supportive and approachable way, which helped build confidence."

The interview stage

"Reaching the interview stage at the Medical Research Foundation was a real highlight. The team arranged travel and accommodation, which removed a lot of practical pressure and allowed me to focus fully on the experience.

The interviews took place over two days, and the way they were run was very well organised. Each interview was structured, respectful, and gave space for different perspectives to be heard. As part of the panel, I felt supported to contribute and confident in raising points from a lived experience perspective. The Chair was fantastic and I felt fully part of the team. My role was an important one, which involved asking the applicants questions alongside academic panel members across the two days. This was shared with another public contributor, which worked really well.

What stood out most was how inclusive the environment felt. There was a strong sense of teamwork across the panel, and I felt that everyone’s input was valued. I never felt rushed or overlooked:  there was space to think, reflect, and speak when needed.

Being physically in the room made a real difference. It helped build connection, made conversations feel more natural, and gave a stronger sense of being part of the panel. It also made it easier to contribute and feel fully involved in the discussion.

Although the topic itself is difficult and sensitive, the way the interviews were handled made it possible to engage in a thoughtful and constructive way. By this stage, because of the preparation and support throughout the process, I felt fully immersed and confident in my role.

I also felt very welcomed by the Medical Research Foundation team. They were professional but also approachable and down to earth, which helped create a comfortable atmosphere. Even the Director took the time to come and speak with me, which meant a great deal and made me feel genuinely valued."

My biggest takeaways

"What I take away most from this experience is how powerful it can be when people are genuinely included and supported. This was not a tick-box exercise. It was a carefully designed process where different perspectives were brought together and used to inform real decisions.

This public involvement work has been a fantastic experience. The level of guidance, the thought that had gone into each stage, and the way people were supported throughout has been gold standard."

What I would say to others wanting to do this right

"If other research funders want to involve lived experience in a meaningful way, my advice would be simple.

• Make sure people feel supported from the start. Clear guidance, good communication, and step-by-step preparation make a big difference.

• Build in time for collaboration. Being able to talk things through with others helps people feel more confident and brings out stronger, more balanced insights.

• Take wellbeing seriously. This kind of work can be emotionally demanding, so it’s important to have support in place and to allow people to step back when needed.

• Finally, treat lived experience as real expertise. When people feel listened to and respected, they can contribute in a way that genuinely improves decision-making."

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