Abstract

The 21st Century Cures Act, passed in 2016, and the Final Rules it called for create a roadmap for enabling patient access to their electronic health information. The set of data to be made available, as determined by the Office of the National Coordinator for Health IT through the US Core Data for Interoperability expansion process, will impact the value creation of this improved data liquidity. In this commentary, we look at the potential for significant value creation from USCDI in the context of clinical bioinformatics research and advocate for the research community’s involvement in the USCDI process to propel this value creation forward. We also describe 1 mechanism—using existing required APIs for full data export capabilities—that could pragmatically enable this value creation at minimal additional technical lift beyond the current regulatory requirements.

中文翻译：

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以患者为主导的临床生物信息学研究数据共享：USCDI 及其他

摘要

2016 年通过的《21 世纪治愈法案》及其最终规则要求制定路线图，使患者能够访问其电子健康信息。由国家卫生 IT 协调员办公室通过美国互操作性核心数据扩展流程确定的可用数据集将影响这种改进的数据流动性的价值创造。在这篇评论中，我们着眼于 USCDI 在临床生物信息学研究背景下创造重大价值的潜力，并倡导研究界参与 USCDI 进程，以推动这一价值创造向前发展。