Breakthrough Project Spotlight
American Society of Hematology Research Collaborative Data Hub
The use of real-world evidence (RWE) derived from primary source data such as electronic health records (EHRs) presents exciting opportunities to advance research and quality of care. RWE is not without its challenges, however: data generated in the course of clinical practice can lack the structure and consistency of data captured through clinical research studies and curated patient registries, and the translation of operational clinical data to meaningful RWE requires specialized expertise and technology. Breakthrough Healthcare has the pleasure of working with the American Society of Hematology Research Collaborative (ASH RC) in the design and implementation of its innovative Data Hub programs, which synthesize data from multiple real-world sources to generate insights and drive care improvements.
Best of All Worlds: Blending Data to Enhance RWE
To overcome the challenges inherent in real-world clinical data, ASH RC’s Data Hub has created an innovative model that capitalizes on the breadth and longitudinality of EHR data, and “blends” these data with curated, disease-specific datasets incorporated via electronic case report forms (eCRFs). This model creates analytic benefit in two directions: EHR data are supplemented with disease-specific clinic data that are not commonly available across institutions, and eCRF data are used to contextualize and amend EHR data to increase the reliability and interpretability of the source data.
Breakthrough has led the clinical design of the Data Hub with leadership from ASH RC staff and volunteer physician and researcher members. The Data Hub’s clinical content currently includes sickle cell disease and multiple myeloma, with plans for expansion into other areas of malignant and benign hematology in the future. Additionally, the Data Hub is currently supporting both a national learning collaborative for the improvement of sickle cell disease care, and a CDC-funded initiative to study the treatment patterns and outcomes of multiple myeloma patients with regards to COVID-19.