优化参与者和社区参与癌症基因组测序研究的参与度
Norah L Crossnohere1, Anne L R Schuster2, Cindy K Blair3
1Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University, Columbus, OH.
概括
参与者和社区参与癌症基因组学研究的优化,使用量身定制的策略. 这些基于证据的实践,包括社区咨询委员会和增强同意,改善研究过程和结果.
科学领域:
- 基因组医学是基因组医学.
- 翻译研究是翻译研究.
- 基于社区的参与式研究
背景情况:
- 癌症基因组学研究需要强大的参与者和社区参与才能成功实施.
- 参与者参与和癌症基因组测序 (PE-CGS) 网络旨在优化这些参与策略.
- 需要标准化的定义和基于证据的实践来指导参与的努力.
研究的目的:
- 描述PE-CGS研究中心实施的参与和优化策略.
- 提出对参与和参与优化的共识定义.
- 为癌症基因组学研究参与提供基于证据的实践提供基础.
主要方法:
- 对关键信息人采访和文档审查进行定性内容分析,以确定参与策略.
- 由PE-CGS成员进行反复审查,以就参与和优化定义达成共识.
- 综合多个研究中心的共同经验.
主要成果:
- PE-CGS中心采用了量身定制的策略,包括基于社区的努力 (咨询委员会,新闻通讯) 和以参与者为中心的方法 (增强知情同意,决策支持).
- 优化策略采用了科学方法,如随机对照试验和调查来评估参与度.
- 参与定义为持续的,有意义的互动;优化作为参与和研究过程的科学改进.
结论:
- 实施的参与和优化策略对PE-CGS的研究规划,进行和传播产生了积极的影响.
- 开发的方法和定义为基于证据的实践奠定了基础.
- 通过这些精细的方法,可以加强参与者和社区参与癌症基因组学研究.
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