Real people, real impact: How you can help shape research in Wales

Across Wales, everyday people, patients and carers, are stepping into the world of research, whether it is taking part in a study, sharing information about a trial or helping shape and design a research project.  It’s not just the research that benefits, many people who get involved often say it’s one of the most rewarding things they’ve ever done.

Hi, I’m Emma Langley, Public Engagement and Involvement Officer at Health and Care Research Wales. I’ve been helping people get involved in shaping health and social care research for the past 14 years. I’ve seen that people who get involved in public involvement often find the experience changes them, not just the research. 

To better understand the positive impact of helping shape research, I spoke to some of our public involvement community, here's what they had to say:

Tony – helping to bring “humanity to research” 

Anthony Cope (Tony) has been involved with Health and Care Research Wales since June 2022. Tony, a biomedical scientist by profession, lives with mental illness and Long COVID. He has found public involvement has enabled him to use his professional skills and personal experience to help researchers. Due to his unpredictable health conditions, public involvement helps him structure his day around his health conditions, and the researchers get him at his best, as he’s not struggling with fatigue. It allows him to contribute to the valuable research work being carried out and see the difference public involvement can make to the research, which encourages him to do more. He feels that by being involved, he has helped bring “the humanity to research and research development, in what can be quite a clinical process and can help researchers to remember and feel that”. Tony is now the co-chair of the Wales Mental Health Research and Evidence Network, drawing on his experiences to help shape future research and services so that they can respond quickly to the increasing challenges within the NHS.

Sarah – “a real desire to actually be useful”

Another member of our public involvement community is Sarah Peddle, who has been a member since 2017. Sarah was juggling full time work and being a mum to two small children when she realised that her physical health had deteriorated. Unfortunately, Sarah was diagnosed with a chronic health condition, meaning that she had to give up a job she loved. When her condition became more manageable, Sarah saw an advert to join a research advisory group called for the PARC (Population Advice for Research Committee) Swansea. 

This was a turning point for Sarah, as she realised her professional experience, together with living with a long-term chronic health condition, could allow her to find her sense of self again and gave her “a real desire to actually be useful and to do something again.”  

Even though she was aware that research went on in Wales and people could take part, she wasn’t aware that people could get involved in shaping and developing it. 

Sarah has helped shape many projects and worked with several research teams, and she is now the public involvement lead on an evidence synthesis project at Bangor University and is using her experience to help support public members. 

It’s not just adults that get involved in shaping research and sharing their experiences, we have also supported many children and young people too. One of those was Praveena. 

Praveena – getting involved led to “feeling more confident” 

Praveena’s journey started when she was 16 and in Year 12 of high school and joined DECIPHer Alpha’s, a group for young people aged 14-25 to work with public health researchers to give a perspective on what matters to young people. When a friend introduced her, it sparked her interest in the research world.  She credits being involved to her “feeling more confident” adding that “it’s given her the ability to speak up with her views, as she remembers feeling quite shy when she first started.”

Six years later and Praveena is still helping to shape research with Health and Care Research Wales. Recently, she has been helping write lay summaries, to make sure the public can easily understand what the research is about. She finds it "cool" to think that people can read and understand what she’s written. Now, she is in her final year of studying medicine at Cardiff University, Praveena uses the experience she has gained to support other researchers and students by encouraging them to involve the public in their projects.

When speaking with Tony, Sarah and Praveena, you get a sense of the pride they feel in doing what they do. Each one of them is passionate and enthusiastic about their experiences of public involvement and how it has shaped their lives. I asked each one at the end of our meeting to give some advice to someone thinking about getting involved, their answer was the same - just do it. They added that it will give you a chance to have your voice heard, make connections with people and make the change you want to see.

If you would like to get involved, you can contact the team who can help you.