Laboratory of Computer Science, Massachusetts General Hospital, Boston, Massachusetts, USA.
Research Information Science and Computing, Partners HealthCare, Charlestown, Massachusetts, USA.
J Am Med Inform Assoc. 2019 Jul 1;26(7):637-645. doi: 10.1093/jamia/ocz014.
The study sought to design, pilot, and evaluate a federated data completeness tracking system (CTX) for assessing completeness in research data extracted from electronic health record data across the Accessible Research Commons for Health (ARCH) Clinical Data Research Network.
The CTX applies a systems-based approach to design workflow and technology for assessing completeness across distributed electronic health record data repositories participating in a queryable, federated network. The CTX invokes 2 positive feedback loops that utilize open source tools (DQe-c and Vue) to integrate technology and human actors in a system geared for increasing capacity and taking action. A pilot implementation of the system involved 6 ARCH partner sites between January 2017 and May 2018.
The ARCH CTX has enabled the network to monitor and, if needed, adjust its data management processes to maintain complete datasets for secondary use. The system allows the network and its partner sites to profile data completeness both at the network and partner site levels. Interactive visualizations presenting the current state of completeness in the context of the entire network as well as changes in completeness across time were valued among the CTX user base.
Distributed clinical data networks are complex systems. Top-down approaches that solely rely on technology to report data completeness may be necessary but not sufficient for improving completeness (and quality) of data in large-scale clinical data networks. Improving and maintaining complete (high-quality) data in such complex environments entails sociotechnical systems that exploit technology and empower human actors to engage in the process of high-quality data curating.
The CTX has increased the network's capacity to rapidly identify data completeness issues and empowered ARCH partner sites to get involved in improving the completeness of respective data in their repositories.
本研究旨在设计、试点和评估一个联邦数据完整性跟踪系统（CTX），用于评估从 Accessible Research Commons for Health（ARCH）临床数据研究网络中的电子健康记录数据中提取的研究数据的完整性。
CTX 采用基于系统的方法来设计工作流程和技术，以评估参与可查询联邦网络的分布式电子健康记录数据存储库中的数据完整性。CTX 调用了 2 个正反馈循环，利用开源工具（DQe-c 和 Vue）将技术和人工参与者集成到一个旨在提高能力和采取行动的系统中。该系统的试点实施涉及 2017 年 1 月至 2018 年 5 月期间的 6 个 ARCH 合作伙伴站点。
ARCH CTX 使网络能够监控并在需要时调整其数据管理流程，以维护用于二次使用的完整数据集。该系统允许网络及其合作伙伴站点在网络和合作伙伴站点级别上对数据完整性进行分析。在 CTX 用户群中，交互式可视化呈现了整个网络范围内的完整性当前状态以及随时间变化的完整性变化，受到了重视。
分布式临床数据网络是复杂的系统。仅依靠技术报告数据完整性的自上而下方法可能是必要的，但对于提高大规模临床数据网络中数据的完整性（和质量）来说是不够的。在如此复杂的环境中提高和维护完整（高质量）的数据需要利用技术并赋予人工参与者权力来参与高质量数据管理的社会技术系统。
CTX 提高了网络快速识别数据完整性问题的能力，并使 ARCH 合作伙伴站点能够参与提高其存储库中各自数据的完整性。
