Enhancing Recruitment and Retention of Minority Populations for Clinical Research in Pulmonary, Critical Care, and Sleep Medicine: An Official American Thoracic Society Research Statement.

Enhancing Recruitment and Retention of Minority Populations for Clinical Research in Pulmonary, Critical Care, and Sleep Medicine: An Official American Thoracic Society Research Statement.
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加强招募和保留少数群体的临床研究在肺,重症监护和睡眠医学:美国胸科学会官方研究声明。

DOI:
10.1164/rccm.202105-1210st
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发表时间:
2021-08-01
影响因子:
24.7
通讯作者:
Holguin F
Holguin F
中科院分区:
医学1区
文献类型:
--
作者:
Thakur N;Lovinsky-Desir S;Appell D;Bime C;Castro L;Celedón JC;Ferreira J;George M;Mageto Y;Mainous III AG;Pakhale S;Riekert KA;Roman J;Ruvalcaba E;Sharma S;Shete P;Wisnivesky JP;Holguin F

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背景:设计良好的临床研究需要获得适用于一般人群的信息。然而,目前的大多数研究未能包括种族/少数民族人口的大量队列。这种代表性不足可能导致延误诊断或误诊疾病,在没有适当了解其对某些人群有用性的情况下广泛应用已批准的干预措施,以及制定不广泛适用的建议。目标:制定招募和保留少数民族从事肺病、重症监护和睡眠医学临床研究的最佳做法。方法:美国胸科学会于2019年5月召开了一次研讨会。这包括一个来自学术界、工业界、美国国立卫生研究院和美国食品和药物管理局的国际跨专业小组,其专业知识范围从临床和生物医学研究到以社区为基础的参与性研究方法和患者倡导。研讨会参与者讨论了历史和当前对科学研究的不信任、系统性偏见以及少数民族参与临床研究的社会和结构障碍。对PubMed和谷歌Scholar进行文献检索以支持结论。这项研究并不是对文献的系统回顾。结果:个体、人际关系、机构和联邦/政策层面的障碍被确定为限制少数民族参与临床研究。通过使用多层框架,讲习班参与者针对已确定的障碍提出了基于证据的解决方案。结论:迄今为止,参与临床研究的少数群体并不代表美国和全球人口。美国胸科学会的这份研究声明通过应用以社区参与方法和患者倡导为基础的多层次框架,确定了潜在的循证解决方案。
Background: Well-designed clinical research needs to obtain information that is applicable to the general population. However, most current studies fail to include substantial cohorts of racial/ethnic minority populations. Such underrepresentation may lead to delayed diagnosis or misdiagnosis of disease, wide application of approved interventions without appropriate knowledge of their usefulness in certain populations, and development of recommendations that are not broadly applicable. Goals: To develop best practices for recruitment and retention of racial/ethnic minorities for clinical research in pulmonary, critical care, and sleep medicine. Methods: The American Thoracic Society convened a workshop in May of 2019. This included an international interprofessional group from academia, industry, the NIH, and the U.S. Food and Drug Administration, with expertise ranging from clinical and biomedical research to community-based participatory research methods and patient advocacy. Workshop participants addressed historical and current mistrust of scientific research, systemic bias, and social and structural barriers to minority participation in clinical research. A literature search of PubMed and Google Scholar was performed to support conclusions. The search was not a systematic review of the literature. Results: Barriers at the individual, interpersonal, institutional, and federal/policy levels were identified as limiting to minority participation in clinical research. Through the use of a multilevel framework, workshop participants proposed evidence-based solutions to the identified barriers. Conclusions: To date, minority participation in clinical research is not representative of the U.S. and global populations. This American Thoracic Society research statement identifies potential evidence-based solutions by applying a multilevel framework that is anchored in community engagement methods and patient advocacy.