Evaluation of Patient-Friendly Diagnosis Clarifications in a Hospital Patient Portal

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.

Keywords

diagnoses - electronic health records - patient portals - patient-friendly terms - SNOMED CT

Protection of Human and Animal Subjects

The study was performed in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects. A waiver from the Medical Research Ethics Committee of Amsterdam UMC, location AMC was obtained on June 3, 2021, and filed under reference number W21_259 # 21.285. It confirmed that the Medical Research Involving Human Subjects Act (in Dutch: “WMO”) does not apply to the study and that therefore an official approval of this study by the ethics committee was not required under Dutch law. Approval from the Data Protection Officer and the Scientific Bureau of Franciscus was obtained on March 10, 2022 (reference 2021–109). The final research protocol was registered at the ISRCTN.[29] No consent for publication was required because no individual person's data were published.

Publication History

Received: 24 October 2022

Accepted: 23 March 2023

Accepted Manuscript online:
01 April 2023

Article published online:
21 June 2023

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