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Published on: January 9, 2019
Culturally and linguistically diverse patient participation in glioma research
Zarnie Lwin1, Alexander Broom1, Rasha Cosman1
1Department of Medical Oncology , Royal Brisbane and Women's Hospital, Brisbane, Australia (Z.L.); School of Social Science , University of Queensland, St. Lucia, Australia (A.B., E.K.); Cooperative Trials Group for Neuro-Oncology (COGNO) and NHMRC Clinical Trials Centre , University of Sydney, Sydney, Australia (R.C., A.L., K.S.,); Department of Palliative Care , Mater Health Services, South Brisbane, Australia (P.G.); Department of Radiation Oncology , Liverpool Hospital, Liverpool, Australia (E.-S.K.); University of New South Wales, Sydney, Australia (E.-S.K., E.H.); Department of Medical Oncology , Prince of Wales Hospital , Sydney, Australia (E.H.).
Abstract:
Marginal communities, such as culturally and linguistically diverse (CALD) patients, have significantly lower rates of recruitment, accrual, and retention in cancer clinical trials. A combination of language and cultural barriers means that trial participation from CALD communities remains at suboptimal levels, which in turn favors research findings that are biased towards therapeutic effects or toxicities within the context of non-CALD populations. Here we outline some key challenges and implications for CALD patient participation in glioma research in countries such as Australia, where English is the language of governance and health services implementation. We highlight multistakeholder interventions to improve both investigator recruitment and participation of CALD communities in future glioma research, particularly in this era when global migration has come of age. Enhancing research participation of CALD communities ensures not only wider understanding of genetic heterogeneity to improve glioma outcomes but also equity in access to care.
