Development of Data Dictionary for neonatal intensive care unit: advancement towards a better critical care unit

Background: Critical care units (CCUs) with wide use of various monitoring devices generate massive data. To utilize the valuable information of these devices; data are collected and stored using systems like Clinical Information System (CIS), Laboratory Information Management System (LIMS), etc. These systems are proprietary in nature, allow limited access to their database and have vendor specific clinical implementation. In this study we focus on developing an open source web-based meta-data repository for CCU representing stay of patient with relevant details. Methods: After developing the web-based open source repository we analyzed prospective data from two sites for four months for data quality dimensions (completeness, timeliness, validity, accuracy and consistency), morbidity and clinical outcomes. We used a regression model to highlight the significance of practice variations linked with various quality indicators. Results: Data dictionary (DD) with 1447 fields (90.39% categorical and 9.6% text fields) is presented to cover clinical workflow of NICU. The overall quality of 1795 patient days data with respect to standard quality dimensions is 87%. The data exhibit 82% completeness, 97% accuracy, 91% timeliness and 94% validity in terms of representing CCU processes. The data scores only 67% in terms of consistency. Furthermore, quality indicator and practice variations are strongly correlated (p-value < 0.05). Results: Data dictionary (DD) with 1555 fields (89.6% categorical and 11.4% text fields) is presented to cover clinical workflow of a CCU. The overall quality of 1795 patient days data with respect to standard quality dimensions is 87%. The data exhibit 82% completeness, 97% accuracy, 91% timeliness and 94% validity in terms of representing CCU processes. The data scores only 67% in terms of consistency. Furthermore, quality indicators and practice variations are strongly correlated (p-value < 0.05). Conclusion: This study documents DD for standardized data collection in CCU. This provides robust data and insights for audit purposes and pathways for CCU to target practice improvements leading to specific quality improvements.Supplementary_Data_Dictionary_Sheet_v1.0.xls The data dictionary Excel sheet is the main supporting document for the paper. DD_-_Neonatal_Data.csv The patient dataset is provided as a format for capturing data with respect to data dictionary