Study sheds light on barriers to recruitment of ethnic minority patients to research

A study has shed light on multiple factors in the recruitment process in research that act as barriers to the recruitment of patients from minority ethnic groups to trials.

The study, a collaboration between UCLH and Roche Pharmaceuticals, aimed to identify barriers for which practical and actionable solutions could be found. The study, which looked at four disease areas (Alzheimer’s Disease, stroke, rheumatology and breast cancer), centred around a qualitative investigation through patients and research staff interviews.

Barriers to the recruitment of ethnic minority patients identified by the study, published in Contemporary Clinical Trials Communications, include: the role of the family members in patients’ decision-making; patient fear of what happens to their data when they are part of a trial; staff difficulties with the use of interpreters and translated information for patients; and the time and financial burden study activities place on participants.

In light of these actionable insights, the study made a range of recommendations including the need for: recruiting sites to review the provision of interpreting support for trials; further investigation of the role of family members in decision-making; development of targeted and proactive training and support for recruiting staff; and study design to place greater emphasis on patient need and convenience.

Dr Rosamund Yu, chief investigator of the study and Head of Research Patient and Public Involvement and Engagement at UCLH, said: “This study has suggested many actions research centres like UCLH and individual studies could take to make research recruitment more diverse in terms of the ethnicity of participants. We hope to trial some of these measures to see if they can make a difference. However, as the study suggests, we must not forget that many of the barriers reflect societal and historical factors, and some are also a result of broader health inequalities. Although these require structural changes that cannot be addressed by individual study design and research centres, we all need to be aware of them.”

The study also included a systematic literature review, which revealed that much of the research already carried out in this area originates from the USA and focuses on cancer trials. The gap in research relevant specifically to the UK and a broader range of diseases confirmed the need for this overall study.

A data analysis by the study of the ethnicity of research recruits, and of patients affected by the relevant disease, highlighted the need for better recording of the ethnicity of patient and participants.

The work was supported by UCL’s Rapid Research, Evaluation and Appraisal Lab (RREAL), supported by UCL Consultants.

This research was completed as part of a collaborative working agreement between UCLH and Roche Products Limited (Roche). Both UCLH and Roche were involved in the development and completion of this project.