履行NIH的数据共享要求:避免仅在外观上提供开放数据
Hope Watson1, Jack Gallifant2, Yuan Lai3,4
1DBT Labs, Boston, Massachusetts, USA.
BMJ health & care informatics
|June 21, 2023
概括
国家卫生研究院 (NIH) 的数据管理和共享政策旨在改善研究,但
科学领域:
- 医疗信息学 医疗信息学
- 数据科学数据科学数据科学
- 研究政策研究政策
背景情况:
- 国家卫生研究院 (NIH) 在1月份实施了数据管理和共享政策,以利用NIH资助的研究数据.
- 随着COVID-19的爆发,数据共享对于患者研究和减轻分析偏见的重要性得到了重视.
- 疫情揭示了研究可重现性和有效性的挑战,数据共享往往仍然是"仅表面上的开放数据" (ODIAO).
研究的目的:
- 提出一个框架,详细说明与数据共享相关的风险.
- 系统地提出风险减轻策略,以共享数据.
- 提供医疗保健特定的数据共享风险和减轻风险的例子.
主要方法:
- 框架的制定是根据开放数据研究所的指导方针进行的.
- 该框架纳入了NIH2023数据管理和共享政策的关键方面.
- 分析包括检查数据共享障碍的法律,技术,声誉和商业类别.
主要成果:
- 数据共享的障碍包括对"一般数据隐私规则"的误解以及对大数据传输技术专业知识的不足.
- 目前的阻碍因素阻碍了数据共享成为跨不同阶段的标准实践.
- 识别的风险涵盖了法律,技术,声誉和商业领域.
结论:
- 迈向真正的开放数据需要创建强大的激励机制.
- 重新集中对患者福利的数据共享对于鼓励参与至关重要.
- 额外的拨款要求和专门的委员会可以促进对数据报告实践的遵守.
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