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.Keywords: culturally and linguistically diverse (CALD), glioma, research participation.
Culturally and Linguistically Diverse Patient Participation in Glioma ResearchImproving patient participation in clinical research remains a priority across all fields of medicine. Research demonstrates that fewer than 5% of all adult cancer patients, on an international basis, enter clinical trials annually, and this rate has not improved in more than 2 decades.1,2 Within this context, marginal communities, such as culturally and linguistically diverse (CALD) patients, have significantly lower rates of recruitment, accrual, and retention in cancer clinical trials.3 Lower participation of CALD patients negatively impacts the interpretation, validity, and generalized applicability of next-generation trial results. Thus, enhancing CALD patient participation remains an important but underresearched issue.Over the past decade, neuro-oncology research has witnessed a steady shift towards personalized medicine with a clear focus on stratifying trials in an attempt to identify phenotypes and genotypes that might gain maximum benefit from emerging novel treatments. 4,5 Although there has been a stronger research emphasis on personalized care and tumor evolution, there has been limited emphasis on widening the diversity of trial participants from diverse populations such as CALD communities. Moreover, in contemporary glioma research, healthrelated quality of life (HRQoL) has emerged as a key endpoint.
6,7HRQoL research and measurement require not only sensitivity to the cultural traditions, beliefs, or practices of CALD communities, but HRQoL metrics may even need to be specific to CALD patient nuances across nonstandardized cultural divides. 8 A combination of language and cultural barriers means that trial participation from diverse CALD communities remains at suboptimal levels, which in turn favors research findings that are biased towards the therapeutic effects within the context of non-CAL...