Sharing ICU Patient Data Responsibly Under the Society of Critical Care Medicine/European Society of Intensive Care Medicine Joint Data Science Collaboration: The Amsterdam University Medical Centers Database (AmsterdamUMCdb) Example*

作者：Patrick Thoral, Jan M. Peppink, Ronald H. Driessen, Eric J.G. Sijbrands, Erwin J. O. Kompanje, Lewis J. Kaplan, Heatherlee Bailey, Jozef Kesecioğlu, Maurizio Cecconi, Matthew M. Churpek, Gilles Clermont, Mihaela van der Schaar, Ari Ercole, Armand R. J. Girbes, Paul Elbers · 发表于：Critical Care Medicine · 年份：2021 · DOI：10.1097/ccm.0000000000004916 · 被引用次数：278 · 研究领域：Privacy-Preserving Technologies in Data、Electronic Health Records Systems、COVID-19 Digital Contact Tracing

OBJECTIVES: Critical care medicine is a natural environment for machine learning approaches to improve outcomes for critically ill patients as admissions to ICUs generate vast amounts of data. However, technical, legal, ethical, and privacy concerns have so far limited the critical care medicine community from making these data readily available. The Society of Critical Care Medicine and the European Society of Intensive Care Medicine have identified ICU patient data sharing as one of the priorities under their Joint Data Science Collaboration. To encourage ICUs worldwide to share their patient data responsibly, we now describe the development and release of Amsterdam University Medical Centers Database (AmsterdamUMCdb), the first freely available critical care database in full compliance with privacy laws from both the United States and Europe, as an example of the feasibility of sharing complex critical care data. SETTING: University hospital ICU. SUBJECTS: Data from ICU patients admitted between 2003 and 2016. INTERVENTIONS: We used a risk-based deidentification strategy to maintain data utility while preserving privacy. In addition, we implemented contractual and governance processes, and a communication strategy. Patient organizations, supporting hospitals, and experts on ethics and privacy audited these processes and the database. MEASUREMENTS AND MAIN RESULTS: AmsterdamUMCdb contains approximately 1 billion clinical data points from 23,106 admissions of 20,109 patients...