Privacy preserving digital platform for patient reported outcomes in inflammatory bowel disease.

Abstract

We developed a privacy-preserving digital platform for patient-reported outcomes in inflammatory bowel disease using secure multi-party computation (SMPC), which encrypts and fragments data to ensure complete anonymity. In a prospective multicenter study of 322 patients, 277 respondents (86.0%) completed the survey; 60.1% reported greater comfort in providing candid responses under anonymized conditions. The system revealed substantial underreporting: only 65.1% of patients experiencing clinically important symptoms (including urgency and other key concerns) discussed them with physicians; medication adherence discrepancies occurred in 28.9% of patients, with 68.0% unrecognized by clinicians. This approach captured previously inaccessible information about sensitive symptoms and socioeconomic burdens, enabling a more accurate understanding of real-world disease impact. Our findings suggest that SMPC-based anonymization may help reveal patient-reported information that is often underrepresented in routine clinical care. (Registered with the University Hospital Medical Information Network Clinical Trials Registry: UMIN000039131; registered January 11, 2020).