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衡量对医学研究的信任:来自研究中代表性不足的种族和族裔群体的观点。

Measuring trust in medical research: Perspectives from racial and ethnic communities underrepresented in research.

作者信息

Stevens Sarah C, Valadez Leo, Moghimi Foujan, Vazquez Monica Guerrero, Miller Hailey N, Byiringiro Samuel, Lewis-Land Cassia, Clark Roger S, Tomiwa Tosin, Chepkorir Joyline, Himmelfarb Cheryl R

机构信息

Johns Hopkins Institute for Clinical and Translational Research, Baltimore, MD, USA.

Johns Hopkins University, Carey Business School, Baltimore, MD, USA.

出版信息

J Clin Transl Sci. 2025 Apr 10;9(1):e109. doi: 10.1017/cts.2025.40. eCollection 2025.

DOI:10.1017/cts.2025.40
PMID:40529002
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12171920/
Abstract

INTRODUCTION

Underrepresentation of diverse populations in medical research undermines generalizability, exacerbates health disparities, and erodes trust in research institutions. This study aimed to identify a suitable survey instrument to measure trust in medical research among Black and Latino communities in Baltimore, Maryland.

METHODS

Based on a literature review, a committee selected two validated instruments for community evaluation: Perceptions of Research Trustworthiness (PoRT) and Trust in Medical Researchers (TiMRs). Both were translated into Spanish through a standardized process. Thirty-four individuals participated in four focus groups (two in English, two in Spanish). Participants reviewed and provided feedback on the instruments' relevance and clarity. Discussions were recorded, transcribed, and analyzed thematically.

RESULTS

Initial reactions to the instruments were mixed. While 68% found TiMR easier to complete, 74% preferred PoRT. Key discussion themes included the relevance of the instrument for measuring trust, clarity of the questions, and concerns about reinforcing negative perceptions of research. Participants felt that PoRT better aligned with the research goal of measuring community trust in research, though TiMR was seen as easier to understand. Despite PoRT's lower reading level, some items were found to be more confusing than TiMR items.

CONCLUSION

Community feedback highlighted the need to differentiate trust in medical research, researchers, and institutions. While PoRT and TiMR are acceptable instruments for measuring trust in medical research, refinement of both may be beneficial. Development and validation of instruments in multiple languages is needed to assess community trust in research and inform strategies to improve diverse participation in research.

摘要

引言

医学研究中不同人群代表性不足会削弱研究结果的普遍性,加剧健康差异,并损害对研究机构的信任。本研究旨在确定一种合适的调查工具,以衡量马里兰州巴尔的摩市黑人和拉丁裔社区对医学研究的信任度。

方法

基于文献综述,一个委员会选择了两种经过验证的工具进行社区评估:研究可信度感知(PoRT)和对医学研究人员的信任(TiMRs)。两者均通过标准化流程翻译成西班牙语。34人参加了四个焦点小组(两个用英语,两个用西班牙语)。参与者对工具的相关性和清晰度进行了审查并提供反馈。讨论内容被记录、转录并进行主题分析。

结果

对这些工具的初步反应不一。虽然68%的人认为TiMR更容易完成,但74%的人更喜欢PoRT。关键讨论主题包括工具在衡量信任方面的相关性、问题的清晰度以及对强化研究负面看法的担忧。参与者认为PoRT与衡量社区对研究信任的研究目标更契合,尽管TiMR被认为更容易理解。尽管PoRT的阅读难度较低,但发现一些项目比TiMR的项目更令人困惑。

结论

社区反馈强调了区分对医学研究、研究人员和机构的信任的必要性。虽然PoRT和TiMR是衡量对医学研究信任的可接受工具,但对两者进行改进可能会有益处。需要开发和验证多种语言的工具,以评估社区对研究的信任,并为提高不同人群参与研究的策略提供信息。

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