The IeDEA Data Exchange Standard: a common data model for global HIV cohort collaboration

Objective To describe content domains and applications of the IeDEA Data Exchange Standard, its development history, governance structure, and relationships to other established data models, as well as to share open source, reusable, scalable, and adaptable implementation tools with the informatics community. Methods In 2012, the International Epidemiology Databases to Evaluate AIDS (IeDEA) collaboration began development of a data exchange standard, the IeDEA DES, to support collaborative global HIV epidemiology research. With the HIV Cohorts Data Exchange Protocol as a template, a global group of data managers, statisticians, clinicians, informaticians, and epidemiologists reviewed existing data schemas and clinic data procedures to develop the HIV data exchange model. The model received a substantial update in 2017, with annual updates thereafter. Findings The resulting IeDEA DES is a patient-centric common data model designed for HIV research that has been informed by established data models from US-based electronic health records, broad experience in data collection in resource-limited settings, and informatics best practices. The IeDEA DES is inherently flexible and continues to grow based on the ongoing stewardship of the IeDEA Data Harmonization Working Group with input from external collaborators. Use of the IeDEA DES has improved multiregional collaboration within and beyond IeDEA, expediting over 95 multiregional research projects using data from more than 400 HIV care and treatment sites across seven global regions. A detailed data model specification and REDCap data entry templates that implement the IeDEA DES are publicly available on GitHub. Conclusions The IeDEA common data model and related resources are powerful tools to foster collaboration and accelerate science across research networks. While currently directed towards observational HIV research and data from resource-limited settings, this model is flexible and extendable to other areas of health research.