<p>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).</p>

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

  • Yuki Ohta,
  • Takashi Taida,
  • Sadahisa Ogasawara,
  • Takuma Aizu,
  • Takahito Konagaya,
  • Mitsunori Ota,
  • Ryoko Koborita,
  • Ryuji Suzuka,
  • Toshiyuki Ito,
  • Yusuke Ozeki,
  • Makoto Furuya,
  • Nobuaki Shu,
  • Ryosuke Horio,
  • Ariki Nagashima,
  • Wataru Shiratori,
  • Yuya Yokoyama,
  • Masato Nakamura,
  • Kenichiro Okimoto,
  • Keiko Saito,
  • Tomoaki Matsumura,
  • Tomoo Nakagawa,
  • Minobu Shimazu,
  • Yoichi Sakurai,
  • Kensuke Yoshimura,
  • Jun Kato

摘要

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).