Improving participation of culturally and linguistically diverse participants in clinical trials: an expert consultation.

Abstract

Background: Diversity and inclusivity have become increasingly important in the design and implementation of clinical trials. However, those from culturally and linguistically diverse (CALD) backgrounds are still underrepresented in the research landscape. Failing to include diverse participants can result in treatments and interventions that are not accessible to all who need them. Researchers in Australia and internationally are innovating new ways to address the barriers to increased participation of people from CALD backgrounds in clinical trials.

Consultation and review: We conducted a brief review, augmented by consultation with experts who have engaged CALD communities in research and who hold positions in diversity and inclusivity improvement. Through this, we identified three pillars that must be considered in all areas of design and implementation of trials and research projects: co-design the process of engagement, build trust, invest the time. We also identified seven areas for action where organisations and research teams can focus their activities to improve inclusion and diversity: toolkits and study design, building trust with CALD communities, education and awareness, staff training and communication, language and consent, logistics, resources: funding and time. Importantly, accurate collection of data related to CALD status is also needed to improve inclusivity.

Conclusion: Experts provided valuable insights from their own experiences of the most effective methods for improving the inclusion of CALD communities in clinical trials. Early and thorough planning, building long-term, mutually beneficial relationships with CALD communities and top-down changes to funding are all necessary elements to creating effective, sustainable improvements to the diversity of clinical trials.