“We are not invited”: Australian focus group results on how to improve ethnic diversity in trials
Rattachement africain : au, ca, gb, us, cn, Ghana. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
OBJECTIVES: Lack of ethnic diversity in trials may contribute to health disparities and to inequity in health outcomes. The primary objective 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 communities in Australia. Data collection took place between August and September 2022 in community-based settings in six capital cities: Sydney, Melbourne, Perth, Adelaide, Brisbane, and Darwin, and one rural town: Bordertown (South Australia). RESULTS: One hundred and fifty-eight purposively sampled adults (aged 18-85, 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 communities (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.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- “We are not invited”: Australian focus group results on how to improve ethnic diversity in trials
- Date Crossref
- 01/06/2024
- Éditeur
- Elsevier BV
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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The University of Melbourne pays non établi dans la noticeUniversité ou école supérieure
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The University of Western Australia pays non établi dans la noticeUniversité ou école supérieure
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National Ageing Research Institute Social Gerontology pays non établi dans la noticeOrganisation à but non lucratif
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The University of Sydney NHMRC Clinical Trials Centre pays non établi dans la noticeUniversité ou école supérieure
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National Health and Medical Research Council pays non établi dans la noticeOrganisme public
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Monash University pays non établi dans la noticeUniversité ou école supérieure
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University of Toronto Institute of Health Policy pays non établi dans la noticeUniversité ou école supérieure
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University of Ottawa pays non établi dans la noticeUniversité ou école supérieure
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University of Aberdeen pays non établi dans la noticeUniversité ou école supérieure
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3M (United States) pays non établi dans la noticeEntreprise
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Toronto Rehabilitation Institute pays non établi dans la noticeÉtablissement de santé
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Li Ka Shing Foundation pays non établi dans la noticeOrganisation à but non lucratif
The University of Melbourne, The University of Western Australia et Social Gerontology — National Ageing Research Institute, avec 9 autres affiliations. Pays d’affiliation : Ghana.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.