Am J Respir Crit Care Med. 2021 Aug 1;204(3):e26-e50. doi: 10.1164/rccm.202105-1210ST.
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. To develop best practices for recruitment and retention of racial/ethnic minorities for clinical research in pulmonary, critical care, and sleep medicine. 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. 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. 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.
精心设计的临床研究需要获取适用于一般人群的信息。然而，大多数当前的研究未能纳入大量的种族/少数民族人群。这种代表性不足可能导致疾病的诊断延迟或误诊，未经适当了解某些人群的适用性就广泛应用已批准的干预措施，以及制定不适用于广泛人群的建议。为了制定招募和保留在肺脏、危重病和睡眠医学领域进行临床研究的种族/少数民族的最佳实践。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，他们的专业知识涵盖从临床和生物医学研究到基于社区的参与式研究方法和患者宣传。研讨会参与者讨论了对科学研究的历史和当前不信任、系统偏见以及少数民族参与临床研究的社会和结构性障碍。对 PubMed 和 Google Scholar 进行了文献检索以支持结论。该搜索不是对文献的系统综述。确定了个体、人际、机构和联邦/政策层面的障碍，这些障碍限制了少数民族参与临床研究。通过使用多层次框架，研讨会参与者提出了针对已确定障碍的基于证据的解决方案。迄今为止，少数民族在临床研究中的参与情况并不代表美国和全球人口。本美国胸科学会研究声明通过应用以社区参与方法和患者宣传为基础的多层次框架，确定了潜在的基于证据的解决方案。
