Abstract
BACKGROUND: Medical data can be difficult to comprehend for patients, but only a limited number of patient-friendly terms and definitions are available to clarify medical concepts. Therefore, we developed an algorithm that generalizes diagnoses to more general concepts that do have patient-friendly terms and definitions in SNOMED CT. We implemented the generalizations, and diagnosis clarifications with synonyms and definitions that were already available, in the problem list of a hospital patient portal. OBJECTIVE: We aimed to assess the extent to which the clarifications cover the diagnoses in the problem list, the extent to which clarifications are used and appreciated by patient portal users, and to explore differences in viewing problems and clarifications between subgroups of users and diagnoses. METHODS: We measured the coverage of diagnoses by clarifications, usage of the problem list and the clarifications, and user, patient and diagnosis characteristics with aggregated, routinely available electronic health record and log file data. Additionally, patient portal users provided quantitative and qualitative feedback about the clarification quality. RESULTS: Of all patient portal users who viewed diagnoses on their problem list (n = 2,660), 89% had one or more diagnoses with clarifications. In addition, 55% of patient portal users viewed the clarifications. Users who rated the clarifications (n = 108) considered the clarifications to be of good quality on average, with a median rating per patient of 6 (interquartile range: 4-7; from 1 very bad to 7 very good). Users commented that they found clarifications to be clear and recognized the clarifications from their own experience, but sometimes also found the clarifications incomplete or disagreed with the diagnosis itself. CONCLUSION: This study shows that the clarifications are used and appreciated by patient portal users. Further research and development will be dedicated to the maintenance and further quality improvement of the clarifications.