A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.

A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.
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DOI:
10.1080/23294515.2018.1432718
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发表时间:
2018-01-01
影响因子:
--
通讯作者:
Richardson, L D
Richardson, L D
中科院分区:
其他
文献类型:
--
作者:
Smirnoff, M;Wilets, I;Richardson, L D

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背景:为了促进研究实践中的公正性,纠正健康差距,需要更大的研究参与多样性。对医学研究缺乏信任是参与研究的最大障碍之一。多个变量已被确定为与研究参与者信任/不信任相关的因素。一个概念模型,提供了有意义的洞察力的相互作用的因素影响的信任可能会促进更多的伦理研究实践,并提供了一个增强的,可操作的理解参与者的不信任。方法:一个结构化的调查,以捕捉对研究的态度进行紧急情况下,本文重点介绍项目,旨在评估受访者的信任或不信任的水平,在医学研究中的一般。以社区为基础的访谈进行了英语或西班牙语与355纽约市居民(白色42%,非洲裔美国人29%,拉丁美洲人22%)。结果:一般有利的态度研究表示了大多数(85.3%),但许多受访者表示不信任。因素分析得出了信任/不信任的四个特定领域,每个领域都与不同的人口统计变量相关:一般可信度(老年人,而非残疾人);对歧视的看法(非裔美国人,拉丁美洲人,西班牙语偏好);欺骗感知(先前的研究经验,非裔美国人);以及对剥削的看法结论:在分析中确定的四个领域提供了一个框架,了解不同的研究人群之间的研究信任/不信任的特定领域。这一模式为设计针对特定群体的量身定制的干预措施提供了概念基础,以促进对研究人员个人和研究机构的信任,并促进更广泛的研究参与。
BACKGROUND: To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust.METHODS: A structured survey was developed to capture attitudes toward research conducted in emergency situations; this article focuses on items designed to assess respondents' level of trust or mistrust in medical research in general. Community-based interviews were conducted in English or Spanish with 355 New York City residents (white 42%, African American 29%, Latino 22%).RESULTS: Generally favorable attitudes toward research were expressed by a majority (85.3%), but many respondents expressed mistrust. Factor analysis yielded four specific domains of trust/mistrust, each of which was associated with different demographic variables: general trustworthiness (older age, not disabled); perceptions of discrimination (African American, Latino, Spanish language preference); perceptions of deception (prior research experience, African American); and perceptions of exploitation (less education).CONCLUSIONS: The four domains identified in the analysis provide a framework for understanding specific areas of research trust/mistrust among disparate study populations. This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation.