TY - GEN
T1 - Development of a generalizable multi-site and multi-modality clinical data cloud infrastructure for pediatric patient care
AU - Hornback, Andrew
AU - Shi, Wenqi
AU - Giuste, Felipe O.
AU - Zhu, Yuanda
AU - Carpenter, Ashley M.
AU - Hilton, Coleman
AU - Bijanki, Vinieth N.
AU - Stahl, Hiram
AU - Gottesman, Gary S.
AU - Purnell, Chad
AU - Iwinski, Henry J.
AU - Wattenbarger, J. Michael
AU - Wang, May D.
N1 - Publisher Copyright:
© 2022 Owner/Author.
PY - 2022/8/7
Y1 - 2022/8/7
N2 - 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.
AB - 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.
KW - Data interoperability
KW - Data repository
KW - ETL
KW - FHIR
KW - Pediatric patient care
KW - SMART-on-FHIR
KW - User interface
UR - http://www.scopus.com/inward/record.url?scp=85137339755&partnerID=8YFLogxK
U2 - 10.1145/3535508.3545565
DO - 10.1145/3535508.3545565
M3 - Conference contribution
AN - SCOPUS:85137339755
T3 - Proceedings of the 13th ACM International Conference on Bioinformatics, Computational Biology and Health Informatics, BCB 2022
BT - Proceedings of the 13th ACM International Conference on Bioinformatics, Computational Biology and Health Informatics, BCB 2022
PB - Association for Computing Machinery, Inc
T2 - 13th ACM International Conference on Bioinformatics, Computational Biology and Health Informatics, BCB 2022
Y2 - 7 August 2022 through 8 August 2022
ER -