METHODOLOGICAL CONSIDERATIONS RELATED TO EQUITY, DIVERSITY, AND INCLUSION IN CLINICAL EPIDEMIOLOGY
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Date
2024
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Elsevier
Abstract
Objectives: Lack of ethnic diversity in trials may contribute to health disparities and to inequity in health outcomes. The primary objec tive was to investigate the experiences and perspectives of ethnically diverse populations about how to improve ethnic diversity in trials.
Study Design and Setting: Qualitative data were collected via 16 focus groups with participants from 21 ethnically diverse commu nities in Australia. Data collection took place between August and September 2022 in community-based settings in six capital cities: Syd ney, Melbourne, Perth, Adelaide, Brisbane, and Darwin, and one rural town: Bordertown (South Australia).
Results: One hundred and fifty-eight purposively sampled adults (aged 18e85, 49% women) participated in groups speaking Tamil,
Greek, Punjabi, Italian, Mandarin, Cantonese, Karin, Vietnamese, Nepalese, and Arabic; or English-language groups (comprising Fijian,
Filipino, African, and two multicultural groups). Only 10 participants had previously taken part in medical research including three in trials.
There was support for medical research, including trials; however, most participants had never been invited to participate. To increase ethnic
diversity in trial populations, participants recommended recruitment via partnering with communities, translating trial materials and making
them culturally accessible using audiovisual ways, promoting retention by minimizing participant burden, establishing trust and rapport
between participants and researchers, and sharing individual results. Participants were reluctant to join studies on taboo topics in their com munities (eg, sexual health) or in which physical specimens (eg, blood) were needed. Participants said these barriers could be mitigated by
communicating about the topic in more culturally cognizant and safe ways, explaining how data would be securely stored, and reinforcing
the benefit of medical research to humanity.
Conclusion: Participants recognized the principal benefits of trials and other medical research, were prepared to take part, and offered
suggestions on recruitment, consent, data collection mechanisms, and retention to enable this to occur. Researchers should consider these
community insights when designing and conducting trials; and government, regulators, funders, and publishers should allow for greater
innovation and flexibility in their processes to enable ethnic diversity in trials to improve.
Description
This article is Published by Elsevier,2024 and is also available at https://doi.org/10.1016/j.jclinepi.2024.111366
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Citation
Journal of Clinical Epidemiology 170 (2024) 111366