构建开放医学数据元仓库,让不同医院的病历能互通使用。
S4CMDR: a metadata repository for electronic health records
- 采用中层标准化方法,自动整理医疗数据元与取值范围。
- 支持本地部署和云端运行,实现跨机构数据兼容性发现。
- 适合研究罕见病、推动多中心医疗数据协作的团队使用。
电子健康记录(EHR)为诊断、预后和临床决策支持提供了机器学习基础,但各国医院标准不一,导致数据难以互通,限制了大规模跨机构研究。为此,我们基于ISO 11179-3标准,在Screen4Care项目中开发了S4CMDR——一个开源的元数据仓库,采用中层标准化方法,自动化整理数据元素、取值域及兼容性信息。该系统支持本地Linux部署与云托管,具备先进的用户认证机制和直观界面,可有效减少错误并促进跨注册表的特征集匹配。验证案例显示,S4CMDR可用于识别未确诊的罕见病患者。其创新点包括微服务架构、中层标准化策略及用户友好的元数据注册与可视化界面。我们邀请医疗机构贡献元数据,以验证其普适性并推动持续发展。
原文摘要 · Abstract (English)
Background: Electronic health records (EHRs) enable machine learning for diagnosis, prognosis, and clinical decision support. However, EHR standards vary by country and hospital, making records often incompatible. This limits large-scale and cross-clinical machine learning. To address such complexity, a metadata repository cataloguing available data elements, their value domains, and their compatibility is an essential tool. This allows researchers to leverage relevant data for tasks such as identifying undiagnosed rare disease patients. Results: Within the Screen4Care project, we developed S4CMDR, an open-source metadata repository built on ISO 11179-3, based on a middle-out metadata standardisation approach. It automates cataloguing to reduce errors and enable the discovery of compatible feature sets across data registries. S4CMDR supports on-premise Linux deployment and cloud hosting, with state-of-the-art user authentication and an accessible interface. Conclusions: S4CMDR is a clinical metadata repository registering and discovering compatible EHR records. Novel contributions include a microservice architecture, a middle-out standardisation approach, and a user-friendly interface for error-free data registration and visualisation of metadata compatibility. We validate S4CMDR's case studies involving rare disease patients. We invite clinical data holders to populate S4CMDR using their metadata to validate the generalisability and support further development.
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