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"We are not invited": Australian focus group results on how to improve ethnic diversity in trials.

التفاصيل البيبلوغرافية
العنوان: "We are not invited": Australian focus group results on how to improve ethnic diversity in trials.
المؤلفون: Brijnath B; Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Australia; Social Gerontology, National Ageing Research Institute, Melbourne, Australia; School of Social Sciences, University of Western Australia, Perth, Australia. Electronic address: b.brijnath@nari.edu.au., Muoio R; Social Gerontology, National Ageing Research Institute, Melbourne, Australia., Feldman P; Social Gerontology, National Ageing Research Institute, Melbourne, Australia., Ghersi D; School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia; NHMRC Clinical Trials Centre, University of Sydney, Sydney, Australia., Chan AW; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada., Welch V; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada., Treweek S; Health Services Research Unit, School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, Aberdeen, Scotland., Green H; Health Services Research Unit, School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, Aberdeen, Scotland; Research and Insights Team, COUCH Health, Manchester, UK., Orkin AM; Department of Family and Community Medicine, University of Toronto, Toronto, Canada; Dalla Lana School of Public Health, University of Toronto, Toronto, Canada; Li Ka Shing Knowledge Institute of Unity Health, Toronto, Canada., Owusu-Addo E; Social Gerontology, National Ageing Research Institute, Melbourne, Australia; Bureau of Integrated Rural Development, Kwame Nkrumah University of Science & Technology, Kumasi, Ghana.
المصدر: Journal of clinical epidemiology [J Clin Epidemiol] 2024 Jun; Vol. 170, pp. 111366. Date of Electronic Publication: 2024 Apr 16.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Elsevier Country of Publication: United States NLM ID: 8801383 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1878-5921 (Electronic) Linking ISSN: 08954356 NLM ISO Abbreviation: J Clin Epidemiol Subsets: MEDLINE
أسماء مطبوعة: Publication: New York : Elsevier
Original Publication: Oxford ; New York : Pergamon Press, c1988-
مواضيع طبية MeSH: Focus Groups* , Cultural Diversity* , Ethnicity*/statistics & numerical data, Humans ; Female ; Middle Aged ; Male ; Adult ; Aged ; Australia ; Adolescent ; Aged, 80 and over ; Young Adult ; Patient Selection ; Clinical Trials as Topic/statistics & numerical data ; Qualitative Research
مستخلص: 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.
Competing Interests: Declaration of competing interest B.B. has received funds from the Australian National Health and Medical Research Council for projects related to dementia, ethnicity, and aging. H.G. works for COUCH Health, which undertakes research commissioned by the pharmaceutical, academic, and charity sectors. No COUCH Health clients participated in the collection, analysis, or interpretation of the data for the RECONSIDER Project. There are no competing interests for any other author.
(Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
فهرسة مساهمة: Keywords: Cross-cultural; Ethnic diversity; Focus groups; Inclusion; Recruitment; Trials
تواريخ الأحداث: Date Created: 20240417 Date Completed: 20240615 Latest Revision: 20240916
رمز التحديث: 20240917
DOI: 10.1016/j.jclinepi.2024.111366
PMID: 38631530
قاعدة البيانات: MEDLINE
الوصف
تدمد:1878-5921
DOI:10.1016/j.jclinepi.2024.111366