METHODOLOGICAL CONSIDERATIONS RELATED TO EQUITY, DIVERSITY, AND INCLUSION IN CLINICAL EPIDEMIOLOGY

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dc.contributor.authorBrijnath, Bianca
dc.contributor.authorMuoio, Rachel
dc.contributor.authorFeldman, Peter
dc.contributor.authorGhersi, Davina
dc.contributor.authorChan, An-Wen
dc.contributor.orcid0000-0002-1614-2965
dc.date.accessioned2024-07-16T15:43:17Z
dc.date.available2024-07-16T15:43:17Z
dc.date.issued2024
dc.descriptionThis article is published by Elsevier, 2024 and is also available at https://doi.org/10.1016/j.jclinepi.2024.111366
dc.description.abstractObjectives: 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
dc.description.sponsorshipKNUST
dc.identifier.citationJournal of Clinical Epidemiology 170 (2024) 111366
dc.identifier.uri10.1016/j.jclinepi.2024.111366
dc.identifier.urihttps://ir.knust.edu.gh/handle/123456789/15850
dc.language.isoen
dc.publisherElsevier
dc.titleMETHODOLOGICAL CONSIDERATIONS RELATED TO EQUITY, DIVERSITY, AND INCLUSION IN CLINICAL EPIDEMIOLOGY
dc.typeArticle
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