提高社区顾问委员会在精准医学研究中的参与度,减少健康差异。

Erin Connors, Rebecca Selove, Juan Canedo, Maureen Sanderson, Pamela Hull, Marilyn Adams, Ila McDermott, Calvin Barlow, Denice Johns-Porter, Caree McAfee, Karen Gilliam, Oscar Miller, Nora Cox, Mary Kay Fadden, Stephen King, Hilary Tindle
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引用次数: 0

摘要

社区咨询委员会(CABs)被用于减少健康差异的工作中;然而,有关其在精准医学研究中应用的文献却很少。在本案例研究中,学术界与社区咨询委员会合作,为两项涉及使用基因或基因信息的精准戒烟干预措施开发了调查问卷和患者教育材料。社区参与研究(Community-engaged research,CEnR)文献提供了一个框架,以提高参与制定研究文件的 CAB 成员的收益,这些文件将用于低收入、种族多样化的吸烟人群:学术合作伙伴整合了三种 CEnR 策略:1)会中声明,承认他们希望向社区合作伙伴学习;2)会中向社区合作伙伴或从社区合作伙伴处获得书面反馈;3)会后通过调查获得 CAB 成员的反馈。通过策略 1 和 2,学术合作伙伴对相关学习材料进行了修改,并提出了改进会议运作的建议。调查显示,CAB 成员非常重视会议程序的改变,这似乎有助于提高会议的出席率和满意度。为了支持社区参与精准医学研究,有必要进一步对相关的合作关系构建进行操作化,并开发工具来衡量社区-学术合作关系的这些方面。
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Improving Community Advisory Board Engagement in Precision Medicine Research to Reduce Health Disparities.

Community Advisory Boards (CABs) are used in efforts to reduce health disparities; however, there is little documentation in the literature regarding their use in precision medicine research. In this case study, an academic-CAB partnership developed a questionnaire and patient educational materials for two precision smoking cessation interventions that involved use of genetic or genetically-informed information. The community-engaged research (CEnR) literature provided a framework for enhancing benefits to CAB members involved in developing research documents for use with a low-income, ethnically diverse population of smokers.The academic partners integrated three CEnR strategies: 1) in-meeting statements acknowledging their desire to learn from community partners, 2) in-meeting written feedback to and from community partners, and 3) a survey to obtain CAB member feedback post-meetings. Strategies 1 and 2 yielded modifications to pertinent study materials, as well as suggestions for improving meeting operations that were then adopted, as appropriate, by the academic partners. The survey indicated that CAB members valued the meeting procedure changes which appeared to have contributed to improvements in attendance and satisfaction with the meetings. Further operationalization of relevant partnership constructs and development of tools for measuring these aspects of community-academic partnerships is warranted to support community engagement in precision medicine research studies.

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