交换词语:参与分享定性研究数据的挑战.
James M DuBois1, Jessica Mozersky1, Meredith Parsons1
1Bioethics Research Center, Department of Medicine, Washington University School of Medicine, St. Louis, MO 63110.
概括
新的NIH数据共享政策影响了定性研究 (QR). 经验教训解决了分享敏感QR数据的挑战,强调需要标准和资源,以确保负责任的数据共享和防止保密风险.
科学领域:
- 社会科学 社会科学 社会科学
- 卫生科学 卫生科学 卫生科学
- 数据管理数据管理
背景情况:
- 一项新的NIH政策于2023年1月生效,要求所有研究的数据共享,包括敏感的定性研究 (QR) 数据.
- 定性研究数据,如采访和焦点小组,通常很难去识别,并且在美国历史上未被分享.
研究的目的:
- 分享从参与利益相关者和试点存储30个定性研究数据集中吸取的经验教训.
- 解决关于定性研究数据共享的实用性的关键问题,包括去识别,二次使用,预算和许可.
主要方法:
- 在五年内与利益相关者进行互动.
- 开发数据去识别软件.开发数据去识别软件.
- 与ICPSR数据库合作,进行试点数据存储.
- 分析了与数据共享相关的八个问题集群.
主要成果:
- 确定了分享定性研究数据的关键问题.
- 评估数据库,期刊和教科书对质量数据共享的准备情况.
- 强调需要标准,专业知识和资源来负责任地共享数据.
结论:
- 定性研究数据共享提供了显著的好处,但需要立即制定可执行的标准和资源.
- 如果未能建立这些资源,就会危及参与者的保密性和研究资金和时间的低效使用.
- 基础设施的积极发展对于使定性数据的安全有效的二次使用至关重要.
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