制定标准化系统的要求,以便将个人研究结果返回给研究参与者:叙述性审查
Rosalyn Leigh Carr1,2, Vita Chan2,3, Nicholas C West2
1The School of Biomedical Engineering, University of British Columbia, 6088 University Boulevard, Vancouver, BC, V6T 1Z3, Canada, 1 6048227810.
Interactive journal of medical research
|August 27, 2025
概括
这项研究强调了在将个别研究结果交给参与者时,需要多式传播方法和可访问的教育材料. 标准化系统可以加强数据共享和参与者参与研究.
科学领域:
- 数据科学
- 生物信息学
- 研究方法
背景情况:
- 智能设备的普及产生了大量的数据,为环境科学,健康管理和天体物理学等领域的数据共享创造了机会.
- 了解参与者愿意共享数据需要了解数据资产,风险,利益和数据交换的潜在用途.
- 开发可靠的数据共享平台可以增加数据捐赠,并实现个性化研究结果的交付.
研究的目的:
- 制定初步的核心要求清单,以标准化对不同研究学科的研究参与者的个人研究结果.
- 为有效和道德的结果传播系统提供设计建议.
主要方法:
- 对现有平台进行了叙述性文献审查,以向参与者返回研究结果.
- 搜索包括2013年5月至2023年5月的英语文章,涵盖已发表的研究和灰色文献.
- 数据综合涉及8篇文章的专题分析,描述了7种不同的结果返回系统,重点是传播方法和参与者参与.
主要成果:
- 八个审查的系统中有七个采用多式传播 (例如实物文件,电子邮件,电话,数字平台).
- 在一项研究中指出了可访问性特征; 所有的匿名化细节都缺乏.
- 四项研究包括专家/临床医生的参与,并为参与者提供了额外的教育材料.
结论:
- 返回结果系统应支持基于文本的结果的多种传播模式.
- 参与者对研究成果的理解和利用具有至关重要的基础.
- 参与者愿意接受甚至不利的结果,并通过明智的行动将其融入他们的生活.
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