UCSD Health Department of Biomedical Informatics, University of California San Diego Health, La Jolla, CA, USA; Biomedical Informatics & Data Science, Yale School of Medicine, New Haven, CT.
School of Biomedical Informatics, University of Texas Health Science Center at Houston, Houston, TX, USA.
J Biomed Inform. 2023 Mar;139:104322. doi: 10.1016/j.jbi.2023.104322. Epub 2023 Feb 17.
Linking data across studies offers an opportunity to enrich data sets and provide a stronger basis for data-driven models for biomedical discovery and/or prognostication. Several techniques to link records have been proposed, and some have been implemented across data repositories holding molecular and clinical data. Not all these techniques guarantee appropriate privacy protection; there are trade-offs between (a) simple strategies that can be associated with data that will be linked and shared with any party and (b) more complex strategies that preserve the privacy of individuals across parties. We propose an intermediary, practical strategy to support linkage in studies that share de-identified data with Data Coordinating Centers. This technology can be extended to link data across multiple data hubs to support privacy preserving record linkage, considering data coordination centers and their awardees, which can be extended to a hierarchy of entities (e.g., awardees, data coordination centers, data hubs, etc.) b.
跨研究链接数据为丰富数据集并为生物医学发现和/或预后的基于数据的模型提供更坚实的基础提供了机会。已经提出了几种链接记录的技术，并且已经在具有分子和临床数据的数据存储库中实施了一些技术。并非所有这些技术都能保证适当的隐私保护；在（a）可以与将要链接和与任何一方共享的数据相关联的简单策略和（b）在各方之间保留个人隐私的更复杂策略之间存在权衡。我们提出了一种中介的实用策略，以支持与数据协调中心共享去识别数据的研究中的链接。这项技术可以扩展到链接多个数据中心的数据，以支持隐私保护记录链接，同时考虑数据协调中心及其受让人，这可以扩展到实体层次结构（例如，受让人，数据协调中心，数据中心等）b。
