ABSTRACT Background Multidisciplinary collaboration is crucial for patients with incurable neurological diseases. However, sharing information among medical staff across institutions is challenging. Our cloud‐based patient information sharing system uses information and communication technology to facilitate the sharing of patient information among professionals, patients, and their families. Aim We aimed to determine the usage pattern and usefulness of this patient information sharing system. Methods We examined the pages of 11 patients: 4 with amyotrophic lateral sclerosis (ALS), 5 with Parkinson's disease and related disorders (PDRDs), 2 with other diseases (ODs), and 2 teams. The number of users per page and usage frequency of each function were analyzed according to the disease type. The usage status was compared before and after patients with ALS made the decision to undergo tracheotomy. Furthermore, a questionnaire survey using the Face‐to‐Face Cooperation Evaluation scale was conducted among the medical staff who used the system. Results Overall, 100 individuals used the system. The ALS pages were mainly used by the medical staff, whereas the patients' family members were the main users of the communication function in the PDRD pages. Patients with ODs used only the telemedicine function. Before the patients with ALS made their decision to undergo tracheotomy, most posts on the ALS pages were written by the patients themselves. The survey results indicate that this system improved relationships among multidisciplinary teams. Conclusion This system was useful for sharing patient information, telemedicine, patient decision‐making, psychological support for patients' family members, and coordination with social support.
Kamijo et al. (2026) studied this question.