Haematology Outcomes Network in Europe (HONEUR)—A collaborative, interdisciplinary platform to harness the potential of real-world data in hematology

Abstract

Introduction: There remains a need to optimize treatments and improve outcomes among patients with hematologic malignancies. The timely synthesis and analysis of real-world data could play a key role. Objectives: The Haematology Outcomes Network in Europe (HONEUR) is a federated data network (FDN) that aims to overcome the challenges of heterogenous data collected from different registries, hospitals, and other databases in different countries. It has the functionality required to analyze data from various sources in a time efficient manner, while preserving local data security and governance. With this, research studies can be performed that can increase knowledge and understanding of the management of patients with hematologic malignancies. Methods: HONEUR uses the Observational Medical Outcomes Partnership (OMOP) common data model, which allows analysis scripts to be run by multiple sites using their own data, ultimately generating aggregated results. Furthermore, distributed analytics can be used to run statistical analyses across multiple sites, as if data were pooled. The external governance model ensures high-quality standards, while data ownership is retained locally. Twenty partners from nine countries are now participating, with data from more than 26 000 patients available for analysis. Research questions that can be addressed through HONEUR include assessments of natural disease history, treatment patterns, and clinical effectiveness. Conclusions: The HONEUR FDN marks an important step forward in increasing the value of information routinely captured by individual hospitals, registries and other database holders, thus enabling larger-scale studies to be undertaken rapidly and efficiently.