A presentation at ICPE 2023: The Global Home for the Science of Real-World Evidence titled “Understanding Short Bowel Syndrome via Real-World Data” helped illuminate the challenges faced by short bowel syndrome (SBS) patients. The study, led by Inspire, the leading patient engagement and real-world evidence platform, aims to bridge the knowledge gap surrounding SBS.
The study explores patient diagnostic paths, healthcare resource utilization, and treatment trends among Inspire SBS patients. Using a unique method of linking Inspire member data with medical and pharmacy claims through HIPAA-compliant tokenization techniques, Inspire was able to surface new insights from medical claims and user-generated content from the Inspire online community platform.
Preliminary insights from this analysis underscore the substantial challenges faced by SBS patients. With over four years of healthcare visit data since diagnosis, the study cohort showcases significant healthcare resource utilization. Of particular note is the sustained use of parenteral nutrition for at least a year post-SBS diagnosis, often accompanied by substantial out-of-pocket costs. The study also delves into patient sentiments expressed on the Inspire platform, revealing the financial impact and quality-of-life implications of SBS and associated treatments.