Evaluation of lexical clarification by patients reading their clinical notes: a quasi-experimental interview study

Background: Patients benefit from access to their medical records. However, clinical notes and letters are often difficult to comprehend for most lay people. Therefore, functionality was implemented in the patient portal of a Dutch university medical centre (UMC) to clarify medical terms in free-text data. The clarifications consisted of synonyms and definitions from a Dutch medical terminology system. We aimed to evaluate to what extent these lexical clarifications match the information needs of the patients. Secondarily, we evaluated how the clarifications and the functionality could be improved. Methods: We invited participants from the patient panel of the UMC to read their own clinical notes. They marked terms they found difficult and rated the ease of these terms. After the functionality was activated, participants rated the clarifications provided by the functionality, and the functionality itself regarding ease and usefulness. Ratings were on a scale from 0 (very difficult) to 100 (very easy). We calculated the median number of terms not understood per participant, the number of terms with a clarification, the overlap between these numbers (coverage), and the precision and recall. Results: We included 15 participants from the patient panel. They marked a median of 21 (IQR 19.5–31) terms as difficult in their text files, while only a median of 2 (IQR 1–4) of these terms were clarified by the functionality. The median precision was 6.5% (IQR 2.3–14.25%) and the median recall 8.3% (IQR 4.7–13.5%) per participant. However, participants rated the functionality with median ease of 98 (IQR 93.5–99) and a median usefulness of 79 (IQR 52.5–97). Participants found that many easy terms were unnecessarily clarified, that some clarifications were difficult, and that some clarifications contained mistakes. Conclusions: Patients found the functionality easy to use and useful. However, in its current form it only helped patients to understand few terms they did not understand, patients found some clarifications to be difficult, and some to be incorrect. This shows that lexical clarification is feasible even when limited terms are available, but needs further development to fully use its potential.