Putting Lived Experience at the Heart of Research: Sofia Vougioukalou Wins Celebrating Excellence Award

This International Clinical Trials Day, we are celebrating the people and partnerships that help shape better health and care research through collaboration, creativity, and a commitment to working with communities.

One of those people is Dr Sofia Vougioukalou, a Research Fellow working across the Centre for Trials Research at Cardiff University, the Centre for Adult Social Care Research, and the Centre for Vision Services Research, who was recently recognised in Cardiff University’s Celebrating Excellence Awards 2025 as winner of the Co-creation and Participative Leadership category.

The award recognises individuals who demonstrate exceptional participative leadership and a commitment to shaping the future through social, academic, or entrepreneurial initiatives. In Sofia’s case, it reflects a research approach built around a simple but powerful principle: research is stronger when people with lived experience are part of shaping it.

Sofia’s work has consistently focused on bringing people into research in meaningful ways, not as consultees on the margins, but as active contributors helping to shape questions, design studies, interpret findings, and share results.

Based at the Centre for Trials Research, Sofia works across a wide range of roles and research themes. She is the CARE public involvement academic lead and dementia thematic group lead, the Centre for Trials Research Population Health and Social Care Division lead for public involvement, and co-lead for Transforming Sight Impairment and Rehabilitation Pathways at the Centre for Vision Services Research. She is also a trustee of Women Connect First, a charity supporting ethnic minority women in Wales.

What stands out in Sofia’s work is the way co-production is taken beyond traditional academic settings. Her research practice has included working in parks, festivals, community kitchens, arts classes, and community venues, creating spaces where people can contribute in ways that feel accessible, inclusive, and meaningful.

Over 100 people with lived experiences of cancer, dementia, loneliness and social isolation, alongside family carers and professionals, have contributed to research design, dissemination, publications, and evidence briefings through this work. This has included British Sign Language users, people with hearing and visual impairments, people who lost their sight due to cancer, ethnic minority elders with limited English proficiency, and members of the LGBTQ+ community.

More recently, Sofia has helped extend this approach into research funding itself, supporting people with lived and professional experience to become named co-applicants on research bids, including applications to the National Institute for Health Research and the British Academy worth more than £1 million, as well as a collaborative doctoral studentship jointly funded by Health and Care Research Wales and the Economic and Social Sciences Research Council.

Her work has also included community led dementia engagement and annual partnership events in Grangetown with organisations including Alzheimer’s Society, Muslim Doctors Cymru, and the Community Gateway team at the Grangetown Pavilion, helping create conversations around research in spaces and formats designed with communities in mind.

This award also recognises something deeper: the long term trust building that makes this kind of work possible. Sofia has spent more than a decade building relationships with communities that may not traditionally see research as something that includes them, helping create pathways for participation, co-authorship, leadership, and influence.

Reflecting on the award, Sofia said:

“My very first postdoctoral research project 15 years ago at King’s College London explored how patients and staff members could come together to co-design improved lung cancer and intensive care services drawing on their lived experiences. In that project, I saw first-hand what can be achieved when knowledge co-creation is taken seriously and given centre stage.

“Throughout my research journey, my own learning and understanding of health and social care has been profoundly shaped by the experiences that members of the public, service users, service providers and professionals have so generously shared with me.

“We are in a very privileged place to have research funders that actively promote public involvement and co-production. I very much look forward to developing more research bids with members of the public and professionals as co-applicants, and to supporting colleagues to bring public co-applicants on board their research projects.”

Sofia’s recognition is a reminder that high quality research is not only about scientific excellence. It is also about listening well, building trust, and creating space for people to help shape the research that affects their lives. On International Clinical Trials Day, that feels like a contribution worth celebrating.