Public contributor spotlight: Joanne’s take

At the NIHR Biomedical Research Centre: Birmingham, we work with patient and public contributors across a range of health conditions. But who are they, and what is it like to get involved in research as a member of the public? To find out, read this piece authored by our public contributor, Joanne Lloyd.

I’ve been involved in health and care research as a public contributor for around six years, but when I first started, I didn’t even know that patient and public involvement and engagement (PPIE) existed.

I discovered PPIE after taking part in clinical trials myself. Until then, I hadn’t realised that patients and members of the public could help shape research rather than only take part in it.

That really interested me. I liked the idea that you didn’t have to understand all the science to have something valuable to contribute. Sometimes simple questions such as “Would people understand this?”, “How would this work in real life?” or “Is this actually important to patients?” can lead to really useful conversations.

You didn’t have to understand all the science to have something valuable to contribute.

Contributing across the BRC: Birmingham

As part of my work as a public contributor with the National Institute for Health and Care Research Biomedical Research Centre (NIHR BRC): Birmingham, I’ve particularly enjoyed being part of the Patient and Public Advisory Group (PPAG). One of the things I’ve valued most is having the opportunity to get involved in lots of different aspects of the BRC.

I’ve heard directly from researchers and contributed a public perspective to discussions about their work. I’ve also contributed to the PPIE Action Plan, including discussions about supporting public contributors, connecting with communities, communication and helping both researchers and the public understand the difference PPIE makes.

I’ve also been part of the BRC Communications Group. One of the main things we worked on was reshaping the BRC website. Over several meetings, we looked at what worked, what could be clearer and whether people could easily find the information they needed.

I really enjoyed this because it wasn’t just about simplifying words. It was about looking at the website as someone coming to it for the first time and asking whether it actually made sense to them.

Helping shape research from the start

I’ve also reviewed applications to the Pre-Grant PPIE Fund. I particularly enjoyed this because I’ve learned how important it is to involve people early, while there is still a real opportunity to influence the research.

More recently in 2026, I’ve been involved in the development of the next BRC funding application.

I was one of 27 patient and public representatives who participated in a strategic planning workshop in January, and I also attended the External Scientific Advisory Board day in May where the proposed research themes presented their ideas. As public contributors, we were asked to think about whether we understood what was being proposed, whether it addressed important health and care needs and what questions, concerns or recommendations we had.

Some of the science was complex, but we weren’t expected to be scientists. We were there to bring a different perspective and perhaps ask something that hadn’t been considered.

We weren’t expected to be scientists. We were there to bring a different perspective.

At the end of the day, we had our own public contributor session where we could talk openly about what we’d heard. Our feedback was then brought together and shared with the research teams as they developed their proposals further.

I found this particularly interesting because we were being involved while the ideas were still developing, rather than commenting on something that was already finished.

Because of my previous involvement with the Communications Group, I’ve also been asked to review the Plain English Summary for the next BRC funding application and take part in a follow-up discussion.

Another highlight was attending the first Joint NIHR BRC & UK Clinical Research Facility (CRF) Network Conference in 2025. I found the range of talks really interesting, covering very different areas of health research.

I particularly enjoyed meeting people from other BRCs, CRFs and research organisations and hearing about how they approach PPIE. It made me realise that although organisations may work differently, many of the challenges are similar and there is a lot to be gained from sharing ideas and learning from each other.

It also reminded me that public contributors don’t just learn from researchers, we learn from each other too.

One of the things I’ve valued most about being involved with the BRC is the variety. I’ve had the opportunity to contribute to research discussions, communications, the website, PPIE planning, funding decisions and now the development of the next BRC. It’s helped me understand much more about how the different parts fit together and where a public perspective can make a difference.

Growing in confidence and making a difference

I’ve also grown in confidence. When I first started, research terminology could feel daunting. I’ve since realised that saying “I don’t understand that” can sometimes be exactly the question I’m there to ask. If something isn’t clear to me, it might not be clear to other members of the public either.

If something isn’t clear to me, it might not be clear to other members of the public either.

I’ve learned that making a difference doesn’t always mean making a huge change. It might be making information easier to understand, making a website easier to use or asking a question that makes somebody think differently. At other times, it can mean having a voice much earlier in discussions about research and what happens next.

Public contributors don’t need to have a particular understanding of research, I certainly didn’t when I started. What matters is being interested, asking questions and being willing to give your perspective. That’s what you’re there to bring, and you might be surprised by where that first opportunity leads.

Are you also interested in getting involved in research? Explore how you can join our community of public contributors.