Ensuring clinical research reflects the UK’s diverse population: roundtable report

On 16 February 2022, the National Institute of Health and Care Research (NIHR) Birmingham Biomedical Research Centre (BRC) convened a roundtable on how to ensure clinical research reflects the UK’s diverse population.

The roundtable brought together leaders within the BRC, University Hospitals Birmingham NHS Foundation Trust (UHB) and the University of Birmingham with researchers, clinicians, patients, volunteers and relevant charities in the West Midlands. The session was chaired by Byron Batten in his role as Head of Inclusion Improvement at UHB and Dr Kanta Kumar in her role as Academic Lead for Patient and Public Involvement and Engagement for the College of Medical and Dental Sciences.

Recommendations

• More diverse institutions: Our universities, healthcare institutions and research teams need to be more diverse and inclusive. We need to find opportunities to recruit across the whole population, and plan for the longer term when considering recruitment strategies.
• More inclusive culture: Inclusivity should be at the heart of our institutions so that everyone we engage with feels welcome and involved. Research teams need to be out in the community to engage with our population. At the same time, our doors need to be open to all.
• Ask the right questions: Trials should be relevant to under-served groups. Involving people early in the development of trials will support engagement. The focus should be on genuinely valuing under-served people’s ideas and contributions
• Talk in plain English: There is not as much demand for materials and literature in different languages as the research community thinks. The bigger barrier lies in the jargon, acronyms and medical terms used when communicating with under-served groups. Where we communicate also needs to change.
• Feedback: Engagement with under-served groups should not be tokenistic but should be considered in the long-term to build and strengthen relationships and trust.

Participants

• (Chair) Byron Batten, Head of Inclusion-Improvement, Communications and Engagement; University Hospitals Birmingham NHS Foundation Trust
• (Co-Chair) Dr Kanta Kumar, Patient and Public Involvement and Engagement Lead, College of Medical and Dental Sciences, University of Birmingham
• Professor Phil Newsome, Deputy Director of the NIHR Birmingham Biomedical Research Centre; Director of Research and Knowledge Transfer, College of Medical and Dental Sciences, University of Birmingham
• Professor Wasim Hanif, Trustee, South Asian Health Foundation
• Tom Gidlow, Birmingham Co-ordinator, In2Science
• Sobia Shaw, Patient Partner, Member of the BRC Liver & GI PPIE group
• Tony Kelly, Patient Partner, Member of the BRC Muscle Health Group PPIE group and Diabetes champion
• Professor Supratik Basu, Royal Wolverhampton NHS Trust, CRN West Midlands
• Professor Dagmar Scheel-Toellner, University of Birmingham EDI Committee Representative; University of Birmingham Lead for the Birmingham pilot of NIHR Race Equality Framework
• Dr Ameeta Retzer, Research Fellow, University of Birmingham
• Dr Rowena Sharpe, Director of Precision Medicine Trials at the Cancer Clinical Trials Unit, University of Birmingham
• Dr Claire Ray, Reader, University of Birmingham; Lead for Outreach and Widening Participation, College of Medical and Dental Sciences, University of Birmingham

Download the full briefing note here.