Development of a generalizable multi-site and multi-modality clinical data cloud infrastructure for pediatric patient care

Abstract

World-renowned pediatric patient care in scoliosis, craniofacial, orthopedic, and other life-altering conditions is provided at the international Shriners Children's hospital system. The impact of scoliosis can be extreme with significant curvature of the spine that often progresses during childhood periods of growth and development. Gauging the impact of treatment is vital throughout the diagnostic and treatment process and is achieved using radiographic imaging and patient reported feedback surveys. Surgeons from multiple clinical centers have amassed a wealth of patient data from more than 1,000 scoliosis patients. However, these data are difficult to access due to data heterogeneity and poor interoperability between complex hospital systems. These barriers significantly decrease the value of these data to improve patient care. To solve these challenges, we create a generalizable multi-site and multi-modality cloud infrastructure for managing the clinical data of multiple diseases. First, we establish a standardized and secure research data repository using the Fast Health Interoperability Resources (FHIR) standard to harmonize multi-modal clinical data from different hospital sites. Additionally, we develop a SMART-on-FHIR application with a user-friendly graphical user interface (GUI) to enable non-technical users to access the harmonized clinical data. We demonstrate the generalizability of our solution by expanding it to also facilitate craniofacial microsomia and pediatric bone disease imaging research. Ultimately, we present a generalized framework for multi-site, multimodal data harmonization, which can efficiently organize and store data for clinical research to improve pediatric patient care.