在创新药物倡议中共享医疗大数据,同时保持患者保密:来自BigData@Heart的摘要和案例报告
Megan Schröder1, Sam H A Muller2, Eleni Vradi3
1The Institute for Medical Information Processing, Biometry, and Epidemiology (IBE), Ludwig-Maximilians-Universität München, Münich, Germany.
Big data
|October 27, 2023
概括
分享个体患者数据 (IPD) 是复杂的. 使用总结统计和匿名化的替代方法在大型合作中实现了数据透明度,同时保护患者的隐私.
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
- 临床研究 临床研究
背景情况:
- 分享个人患者数据 (IPD) 面临重大障碍,包括数据隐私,安全,法律障碍和大型联盟中的竞争利益.
- 大数据@心脏项目是创新药物倡议的一部分,旨在汇集来自随机对照试验和疾病登记册的异质数据.
- 由于法律和隐私问题以及数据协调方面的挑战,直接IPD共享被认为是不可行的.
研究的目的:
- 评估在大型,多个合作伙伴的研究合作中共享数据的替代方法.
- 为了平衡数据透明度的需求与强有力的患者隐私保护.
- 为了实现成功的数据分析和协作,尽管数据异质和法律约束.
主要方法:
- 使用了以应急表形式呈现的总结统计数据,作为分享个人患者数据 (IPD) 的替代方案.
- 实施匿名化技术,以确保患者的匿名性和数据安全性.
- 在统一的数据上进行联合数据分析,尽管统计数据.
主要成果:
- 使用总结统计和匿名化的方法表明与IPD相比,信息损失最小.
- 在数据透明度和患者隐私保护之间取得了成功的平衡.
- 促进了学术机构和行业合作伙伴之间的有效合作.
结论:
- 通过应急表共享汇总统计数据提供了一个可行的替代方案,当直接IPD共享是不可行的.
- 这种方法支持复杂的多利益相关者研究环境中的数据透明度和患者隐私.
- 这种方法使得大数据@心脏案例研究1的数据汇集和分析取得了成功,促进了行业和学术界的合作.
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