Importance of inclusive research practices discussed at annual conference

Influential researchers and advocates came together at the tenth annual Health and Care Research Wales conference to discuss the importance of inclusivity in health and social care research, and what needs to change to create more equitable and impactful research in the future. 

Chaired by Professor Roiyah Saltus, Professor of Sociology (Innovation and Engagement), University of South Wales, the lively and engaged discussion featured four speakers from across the UK who drew on their personal and professional experiences regarding inclusive practices.  

Dr Sofia Gameiro is a Reader at the School of Psychology, Cardiff University, and co-lead of Women's Health Research Wales. She has conducted research in women's health for over 15 years, focusing on amplifying the voices of under-served groups, both via primary research and methodological development. She discussed the need to desegregate sex and gender in research, noting that only one in four COVID-19 vaccine trials reported outcomes for male and female patients.  

Dr Gameiro continued, “We need to make sure it is recognised that illness can look and progress differently in women in men”, using the example of heart disease, which can appear very differently in different genders. As a result of efforts to acknowledge and explore these differences, “we can now better diagnose women in a more timely way.”  

In the future, she said she would like to see greater support for transgender and non-binary people within pathways such as cancer screening and menopause care. 

Next was Alex Harrison, Accessibility Consultant at AH Access. With over 10 years’ experience in disability equality, access and inclusion, Alex delivers training and consultancy to improve access and strengthen disabled people’s inclusion in society. She said, 

One in four people in Wales is disabled, but you’re more likely to become disabled over the course of your life than be born disabled.  

“Disabled people want to be involved in research and bring ideas of lived experience others wouldn’t think of. Forgetting to include them makes them feel undervalued.” 

This was echoed by Dr Vicky Shepherd, whose research focuses on “communities that the research system does not currently account for”, particularly those with impaired capacity to consent. As Principal Research Fellow at Centre for Trials Research, Cardiff University, she has developed resources and training to help codesign trials to include these populations. 

Dr Shepherd said, “Less than 0.001% of COVID-19 trials included people with learning disabilities, even though they accounted for four times the mortality rate. Barriers such as reliance on digital or remote techniques can mean less access for these critical populations. The training and resources we have developed can help navigate the ethical, legal and practical issues to consider.” 

Finally, Dr Mahendra Patel OBE, Director of the Centre for Research Equity at the University of Oxford, reflected on the impact of overlooking certain communities in research. Dr Patel played a leading role in PANORAMIC and PRINCIPLE, landmark COVID-19 trials recognised for their success in inclusive recruitment. He said, 

Inclusivity is not just about representation and recruitment, but relationships and respect, co-creating with communities themselves. 

“Inclusivity made PANORAMIC and PRINCIPLE not only fairer, but scientifically stronger. When research is inclusive it leads to faster results, richer data and outcomes that are more representative of the UK as a whole.” 

Read more about Health and Care Research Wales’ inclusivity action plan.  

Revisit the full conference programme.