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.

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. The privacy audit concluded that reidentification is not reasonably likely, and AmsterdamUMCdb can therefore be considered as anonymous information, both in the context of the U.S. Health Insurance Portability and Accountability Act and the European General Data Protection Regulation. The ethics audit concluded that responsible data sharing imposes minimal burden, whereas the potential benefit is tremendous. CONCLUSIONS: Technical, legal, ethical, and privacy challenges related to responsible data sharing can be addressed using a multidisciplinary approach. A risk-based deidentification strategy, that complies with both U.S. and European privacy regulations, should be the preferred approach to releasing ICU patient data. This supports the shared Society of Critical Care Medicine and European Society of Intensive Care Medicine vision to improve critical care outcomes through scientific inquiry of vast and combined ICU datasets.

Development of trigger-based semi-automated surveillance of ventilator-associated pneumonia and central line-associated bloodstream infections in a Dutch intensive care.

BACKGROUND: Availability of a patient data management system (PDMS) has created the opportunity to develop trigger-based electronic surveillance systems (ESSs). The aim was to evaluate a semi-automated trigger-based ESS for the detection of ventilator-associated pneumonia (VAP) and central line-associated blood stream infections (CLABSIs) in the intensive care. METHODS: Prospective comparison of surveillance was based on a semi-automated ESS with and without trigger. Components of the VAP/CLABSI definition served as triggers. These included the use of VAP/CLABSI-related antibiotics, the presence of mechanical ventilation or an intravenous central line, and the presence of specific clinical symptoms. Triggers were automatically fired by the PDMS. Chest X-rays and microbiology culture results were checked only on patient days with a positive trigger signal from the ESS. In traditional screening, no triggers were used; therefore, chest X-rays and culture results had to be screened for all patient days of all included patients. Patients with pneumonia at admission were excluded. RESULTS: A total of 553 patients were screened for VAP and CLABSI. The incidence of VAP was 3.3/1,000 ventilation days (13 VAP/3,927 mechanical ventilation days), and the incidence of CLABSI was 1.7/1,000 central line days (24 CLABSI/13.887 central line days). For VAP, the trigger-based screening had a sensitivity of 92.3%, a specificity of 100%, and a negative predictive value of 99.8% compared to traditional screening of all patients. For CLABSI, sensitivity was 91.3%, specificity 100%, and negative predictive value 99.6%. CONCLUSIONS: Pre-selection of patients to be checked for signs and symptoms of VAP and CLABSI by a computer-generated automated trigger system was time saving but slightly less accurate than conventional surveillance. However, this after-the-fact surveillance was mainly designed as a quality indicator over time rather than for precise determination of infection rates. Therefore, surveillance of VAP and CLABSI with a trigger-based ESS is feasible and effective.