Let's talk about medical research: research equity for Culturally and Linguistically Diverse (CALD) patients
People from culturally and linguistically diverse backgrounds (CALD) remain excluded from clinical trials due to a range of language, literacy and cultural factors such as the literacy needed to understand paper-based study Participation and Information Consent forms (PICF). These barriers can be compounded when this population is ageing. Exclusion of these populations contributes to health inequalities for migrant groups; it also limits the generalisability of medical research findings. The Australian National Statement on Ethical Conduct in Human Research identifies the need to accommodate cultural factors in research participation and to present information to participants in ways that help them to make informed choices.
In 2013 Clinicians at St Vincent’s hospital initiated the Culturally and Linguistically Diverse Ethics Resources (CALDER) study. Seeding funding from the Melbourne Networked Society Institute project enabled the development of a prototype iPad-based resource about medical research and consent informed by the needs, perceptions and experiences of CALD patients, their families, researchers, and HREC committee members. The target patient population was older Italo-Australians.
The findings have guided the development of a bilingual and culturally appropriate iPad-based resource, Let’s talk medical research: Parliamo dI ricerca medica! to be used in clinical and community contexts to raise awareness about the purpose of medical research. The resource includes videos about the purpose of medical research and the process of consent; it also includes proof of concept technology to trial a novel consent process. The implementation phase will include a trial of the iPad-based resource, with researchers and patients at St Vincent’s hospital.
Prof David Story, Anaesthesia Periooperative Pain & Medicine Unit (APPMU), Melbourne Medical School, UoM,
Ms Anna Parker, Anaesthesia Periooperative Pain & Medicine Unit (APPMU), Melbourne Medical School, UoM,
Prof John Hajek, Department of Italian, School of Languages and Linguistics; Research Unit for Multilinguism and Cross Cultural Communication,
Dr Jo Hughson, Department of Italian, School of Languages and Linguistics; Research Unit for Multilinguism and Cross Cultural Communication,
Dr Tuong Phan, Department of Anaesthesia, UoM, and St Vincents Hospital,
Melbourne Networked Society Institute
Office of Research Ethics and Integrity, The University of Melbourne, Ethics and Integrity Development Grant, 2016. Woodward-Kron R, Hughson J, Parker A, Bresin A, Hajek J, Knoch U, Phan T, Story D. Let’s talk about medical research: Research equity for Culturally and Linguistically Diverse (CALD) older patients.
Melbourne Networked Society Institute (MNSI) seed funding, 2014. Story D, Hajek J, Knoch U, Woodward-Kron R, Phan T. Culturally And Linguistically Diverse Ethics and Research resources (The CALDER Pilot Study). $10,900.
Let's talk medical research / Parliamo di ricerca medica. Web App, University of Melbourne.
Let’s talk medical research: Parliamo di ricerca medica! Research information for culturally and linguistically diverse (CALD) older Italian patients, Federation of Ethnic Communities' Councils of Australia (FECCA) Conference, Darwin, October 2017.
Recruiting CALD patients into clinical trials: barriers and enablers, invited presentation to the ANZCA Clinical Trials Network Annual Strategic Research Workshop, Sydney, August 2017.
CALDER II Advancing Clinical Research Equity and Participation, Australasian Ethics Network Conference, Adelaide, November 2016.
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: 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