导航与公共利益相关的真实世界数据相关的数据治理:英国的概述和未来的考虑
Monica Catherine Jones1, Tony Stone2, Suzanne M Mason3
1Faculty of Medicine and Health, University of Leeds, Leeds, UK m.c.m.jones@leeds.ac.uk.
BMJ open
|October 4, 2023
概括
这项研究简化了对现实世界数据 (RWD) 的二次用途的数据治理. 了解法律框架可以降低感知到的风险,使公众从RWD研究中获得更大的利益.
科学领域:
- 医疗信息学 医疗信息学
- 数据治理数据治理
- 公共卫生研究 公共卫生研究
背景情况:
- 现实世界数据 (RWD),如电子健康记录,在研究和调试中具有很大的二次用途潜力.
- 用RWD用于次要目的的不足利用限制了潜在的公共利益.
- 风险回避和数据治理过程的复杂性是关键障碍.
研究的目的:
- 为了消除RWD的二次用途的数据治理的神秘性.
- 减少对数据治理作为RWD利用障碍的看法.
- 为了促进负责任的数据访问,链接和共享,以造福公众.
主要方法:
- 概述和讨论六个关键的法律和信息治理框架.
- 分析它们在实现负责任的数据访问,链接和共享方面的作用.
- 专注于减少与数据治理相关的感知复杂性和风险.
主要成果:
- 数据治理流程,当通过关键的法律框架来理解时,可以变得不那么困难.
- 更清楚地了解治理框架可以减轻组织的风险厌恶.
- 通过结构化治理方法实现负责任的数据共享是可以实现的.
结论:
- 了解法律和信息治理框架对于释放RWD的二次使用潜力至关重要.
- 简化数据治理减少了障碍,从而增加了RWD的利用率.
- 促进负责任的RWD共享最大限度地使公共从健康数据中获益.
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