Culturally and Linguistically Diverse Ethics Resources (CALDER)
Professor Robyn Woodward-Kron
Professor David Story
Professor John Hajek
Dr Tuong Phan
Clinical Trials FacilitationLearn more
The University of Melbourne
St Vincent’s Hospital Melbourne
PeterMacCallum Cancer Centre
In the 2016 Census, 49% of the population indicated that they were born overseas or had a parent born overseas, while 21% speak a language other than English at home. At MACH hospitals, 30-50% of patients are from non-English speaking backgrounds.
People from culturally and linguistically diverse backgrounds (CALD) remain underrepresented in clinical research due in part to language, literacy, and cultural factors. Exclusion of these populations contributes to health inequalities; it also limits the generalisability of research findings. A methodology for developing inclusive and effective recruitment processes needs to be not only informed by culturally and linguistically appropriate models of translation but also adhere to ethical principles for medical research and support the needs of researchers conducting clinical trials. The first step to enabling participation is to raise awareness and increase understanding of clinical research amongst CALD groups.
The CALDER researchers initially sought to discover ‘What is a robust, cost-effective and accessible method of delivering culturally and linguistically appropriate research information to the patient and their families?’ Prototype (iPad delivered) videos called Let’s talk medical research in their own language were tested with Italian community members and patients from St Vincent’s Hospital Melbourne.
This MACH-funded project builds on the previous work with the development of the Clinical Trials and You videos in English, Italian, Vietnamese, and Chinese.
- Educates patients and their families about the role of hospital-based research and its relevance in the delivery of their care
- Contributes to increasing equity for CALD patients through greater understanding of clinical research, encouraging participation in research with related personal and community benefits
- Enhances trial feasibility and generalisability through a larger and broader pool of eligible participants.
Woodward-Kron R, Bresin A, Hajek J, Parker A, Phan T, Hughson J, Story D. Improving Access to and Participation in Medical Research for Culturally and Linguistically Diverse Background Patients: A Bilingual, Digital Communication Approach, in Cross-Cultural Health Translation: Exploring Methodological and Digital Tools, 1st Ed. Routledge Studies in Empirical Translation and Multilingual Communication, 2019.
Hughson J, Woodward-Kron R, Parker A, Bresin A, Hajek J, Knoch U, Story D, Phan T. A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials. Trials 17(1):263 2016. DOI: http://dx.doi.org/10.1186/s13063-016-1384-3
Woodward-Kron R, Hughson J, Parker A, Bresin A, Hajek J, Knoch U, Phan T, Story D (2016). Culturally and linguistically diverse populations in medical research: Perceptions and experiences of older Italians, their families, ethics administrators and researchers. Journal of Public Health Research, 5: 667, 43-51. DOI: http://dx.doi.org/10.4081/jphr.2016.667
The CALDER videos were highlighted in the September 2021 Victorian Department of Health newsletter.
They were also included in the Victorian Comprehensive Cancer Centre (VCCC) lecture Towards Inclusion of CALD People in Clinical Trials. (go to recording of the presentation)
Clinical Trials and You (English) https://vimeo.com/531629482
Clinical Trials and You (Italian) https://vimeo.com/531630873
Clinical Trials and You (Vietnamese) https://vimeo.com/531632236
Clinical Trials and You (Mandarin) https://vimeo.com/531633744