Four decades of under-representation: a qualitative study to gain young adult insights to transform inclusive recruitment in clinical research
9 affiliations
- 1College of Medicine and Health, School of Health Sciences, University of Birmingham, Birmingham, UK
- 2Department of Rheumatology, Royal Wolverhampton NHS Trust, Wolverhampton, UK
- 3School of Sport, Exercise and Rehabilitation Sciences, University of Birmingham, Birmingham, UK
- 4Liver Unit, University Hospitals Birmingham, Birmingham, UK
- 5National Institute for Health and Care Research (NIHR) Birmingham, Centre for Liver and Gastrointestinal Research, School of Infection, Inflammation and Immunology, University of Birmingham, Birmingham, UK
- 6Department of Applied Health Research, University of Birmingham, Birmingham, UK
- 7Department of Cancer and Genomic Sciences, University of Birmingham, Birmingham, UK
- 8Royal Wolverhampton NHS Trust, Wolverhampton, UK
- 9National Institute for Health and Care Research (NIHR) Biomedical Research Centre: Birmingham, Birmingham, UK
Abstract
Background: Over the past four decades, ethnic minority groups have remained persistently under-represented in UK health research, despite longstanding evidence of recruitment inequities. This under-representation limits research relevance and impacts clinical outcomes, particularly for communities disproportionately affected by chronic conditions. Young adults may offer an important route to engaging families and wider communities, yet their perspectives on research participation remain underexplored.
Objectives: This qualitative study aimed to (1) explore the views of young South Asian and Black adults on taking part in health research themselves; and (2) understand how they believe their families and wider communities could be effectively approached and supported to participate
Setting and design: Semi-structured interviews were conducted remotely with young adults residing across England. Aggregated recruitment data were obtained from a West Midlands National Health Service (NHS) Trust to examine patterns of research participation in research from different racial and minority ethnic backgrounds and provide local context of our interview findings. The results have been reported using the Consolidated Criteria for Reporting Qualitative Research guidelines.
Participants: 22 young adults (19–30 years) who self-identified as Southeast Asian (n=20) or Black (n=2) took part in the study. Trust data covered 524 participants recruited into commercial and non-commercial research studies in 2025.
Results: NHS Trust data revealed marked under-representation of ethnic minority groups: 76.5% of participants were White with only 11.6% Asian and 4.8% Black participants in non-commercial studies (compared with local population of 60.5% White, 21.1% Asian and 9.3% Black), with no Black participants recruited into commercial studies. Regarding the interviews, four themes were evident: (1) generational and cultural influences on health practices; (2) experiences and barriers in health research participation; (3) motivators including modest incentives, non-invasive designs and peer endorsement; and (4) communication and trust-building.
Conclusions: Young adults may represent an underutilised bridge between researchers and ethnically diverse families and communities. Improving participation requires culturally attuned and transparent approaches, trusted communication and sustained organisational commitment to inclusion. The findings identify practical strategies for supporting more inclusive recruitment and have informed the development of a short, evidence-informed video resource for researchers (https://tinyurl.com/4z5mudp3).
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BibTeX
@article{kumar2026four,
title = {{Four decades of under-representation: a qualitative study to gain young adult insights to transform inclusive recruitment in clinical research}},
author = {Kanta Kumar and Vanshika Agarwal and Palak J Trivedi and Sheila Greenfield and Elaine YL Leung and Lorraine Jacques and Jonathan I Quinlan},
journal = {BMJ Open},
year = {2026},
month = oct,
doi = {10.1136/bmjopen-2026-122025},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-122025},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Four decades of under-representation: a qualitative study to gain young adult insights to transform inclusive recruitment in clinical research
AU - Kanta Kumar
AU - Vanshika Agarwal
AU - Palak J Trivedi
AU - Sheila Greenfield
AU - Elaine YL Leung
AU - Lorraine Jacques
AU - Jonathan I Quinlan
PY - 2026
DA - 2026/10/26
JO - BMJ Open
DO - 10.1136/bmjopen-2026-122025
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-122025
AB - Background: Over the past four decades, ethnic minority groups have remained persistently under-represented in UK health research, despite longstanding evidence of recruitment inequities. This under-representation limits research relevance and impacts clinical outcomes, particularly for communities disproportionately affected by chronic conditions. Young adults may offer an important route to engaging families and wider communities, yet their perspectives on research participation remain underexplored. Objectives: This qualitative study aimed to (1) explore the views of young South Asian and Black adults on taking part in health research themselves; and (2) understand how they believe their families and wider communities could be effectively approached and supported to participate Setting and design: Semi-structured interviews were conducted remotely with young adults residing across England. Aggregated recruitment data were obtained from a West Midlands National Health Service (NHS) Trust to examine patterns of research participation in research from different racial and minority ethnic backgrounds and provide local context of our interview findings. The results have been reported using the Consolidated Criteria for Reporting Qualitative Research guidelines. Participants: 22 young adults (19–30 years) who self-identified as Southeast Asian (n=20) or Black (n=2) took part in the study. Trust data covered 524 participants recruited into commercial and non-commercial research studies in 2025. Results: NHS Trust data revealed marked under-representation of ethnic minority groups: 76.5% of participants were White with only 11.6% Asian and 4.8% Black participants in non-commercial studies (compared with local population of 60.5% White, 21.1% Asian and 9.3% Black), with no Black participants recruited into commercial studies. Regarding the interviews, four themes were evident: (1) generational and cultural influences on health practices; (2) experiences and barriers in health research participation; (3) motivators including modest incentives, non-invasive designs and peer endorsement; and (4) communication and trust-building. Conclusions: Young adults may represent an underutilised bridge between researchers and ethnically diverse families and communities. Improving participation requires culturally attuned and transparent approaches, trusted communication and sustained organisational commitment to inclusion. The findings identify practical strategies for supporting more inclusive recruitment and have informed the development of a short, evidence-informed video resource for researchers (https://tinyurl.com/4z5mudp3).
SN - 2044-6055
SN - 2044-6055
ER -