From lived experience to research champion: Gunel’s journey into public involvement

For Gunel, getting involved in research began with her own experiences and an interest in health and wellbeing. What started with the Routes to Wellness project has developed into a growing role as a research champion and public contributor with ARC South West.

Gunel first became involved with Routes to Wellness, a five-year project involving refugees and asylum seekers. She joined during its third year, taking part in workshops and events alongside university researchers, health professionals and other members of the community.

The experience opened her eyes to a different side of research.

“Research is not just something that happens at university or hospitals. It really can benefit from experience and perspective of normal people.”

As her involvement grew, Gunel took on a practical role in supporting other refugees and asylum seekers. During the final year of the project, she helped 15 families from different countries and cultural backgrounds with a range of practical challenges.

Many of the families needed help accessing healthcare, understanding letters and navigating the UK system, including benefits and housing. Having experienced the refugee journey herself, Gunel understood some of the challenges people could face and where there were gaps in existing support. She explains:

“I knew that where is the gaps, how can I help them that other organisations cannot do because of limited of time or limited of case workers,”

For Gunel, the experience was also an opportunity to learn from people with different backgrounds and perspectives. She says the project helped her to understand different cultures, become more respectful of others and develop her empathy.

She describes her experience of Routes to Wellness as “amazing”, and hopes there will be opportunities to do similar work in the future.

Gunel

Becoming a research champion

Gunel’s experience with Routes to Wellness encouraged her to continue exploring research. She went on to become a research champion, helping other people understand what research is and encouraging them to get involved.

For Gunel, one of the important roles of a research champion is making research feel more accessible. She says:

“Sometimes research can feel quite distant and complicate to member for public,”

By talking to people about research, Gunel was able to challenge the idea that involvement is only for people with academic or scientific backgrounds.

“You don’t need to have academic background or scientific background. Yes, just ordinary people can also involve.”

The role also gave Gunel the opportunity to develop her own understanding of research and become more confident talking about it.

Taking the next step with ARC South West

After her experiences with Routes to Wellness and as a research champion, Gunel wanted to continue being involved.

She became a public contributor with ARC South West, seeing it as the next step in her journey and an opportunity to bring her experience and perspective to research on a wider scale.

Since joining the public involvement community, Gunel has contributed to a range of research projects. This has included reviewing research documents and providing feedback on different topics, including young people’s mental health and women’s health.

For Gunel, being able to see different areas of research has been an important part of the experience.

“It’s nice to get a little overview of different research.”

She has also become involved in sharing her experience with the next generation of researchers through the ARC South West PPIE Summer School.

Sharing the public perspective

Gunel was pleased to be invited to take part in the PPIE Summer School, remembering how valuable it had been for her when she was first learning about research.

She saw it as an opportunity to share her experience of becoming a public contributor and give researchers an honest perspective of what it is like “from the other side”.

The experience was positive for Gunel, particularly the opportunity to interact with researchers and other public contributors.

She believes it is important for researchers to hear directly from members of the public, particularly because research can sometimes become very focused on the research itself.

“Sometimes you can become very focused on research and forget what it feels like to the other person who is actually going to experience healthcare or intervention being studied.”

But the Summer School wasn’t only an opportunity for Gunel to share her experience. She also came away having learned from researchers and other public contributors.

“I was there to contribute I also came away having learning something for myself.”

Making a difference

Through her involvement in research, Gunel says she has gained confidence, knowledge and a much better understanding of how research works.

One of the biggest things she has gained, however, is the belief that she can make a difference.

“Even if you make small comment or suggestion that help researchers look at something differently that can potentially have an impact on the people who will eventually benefit from that research.”

Alongside the research itself, Gunel has also valued the people she has met and the sense of community that has developed through her involvement.

Her journey demonstrates the value of bringing lived experience into research, and how public involvement can be a two-way process, with researchers learning from members of the public while contributors develop their own skills, knowledge and confidence.

A message for anyone thinking about getting involved

Gunel’s message to anyone who is considering becoming involved in research is straightforward: give it a try.

“You don’t need to know everything about research before you start. I certainly didn’t. So you learn as you go and there are people that can support you.”

Most importantly, she encourages people not to underestimate what their own experiences can bring to research:

“Researchers have expertise in research, but members of the public have expertise in their own lives, like life experience. I think both perspectives are very important.”

For Gunel, that perspective has taken her from sharing her own experiences through Routes to Wellness to actively contributing to research, supporting other people and helping researchers understand what matters from the public’s point of view.