Patient's Information Needs and Understanding When Reading Anatomic Pathology Reports in Patient Portals

To improve our understanding of the information needs of patients/caregivers when accessing anatomic pathology reports (APRs) via the patient portals (PPs) without further clarification by a clinician and to evaluate their opinion toward accessing APRs through a PP. We conducted an exploratory mixed-method study using a questionnaire and a think-aloud protocol based on three mock APRs of gastrointestinal specimens. Participants verbalized the cognitive processes used to understand report content, discussed concerns/questions, underlined all unknown terms/phrases, and summarized each APR in their own words. Interviews were transcribed and thematic analysis was performed. APR summaries and term descriptions were assessed for accuracy. Finally, the underlined terms/phrases were grouped to create an ontology. All participants (n = 15) had difficulty with most of the medical and technical terms in the APRs. Of the terms that participants said they were confident of knowing, only 48% were accurate and accuracy declined to 38% when guessed. The thematic analysis identified six main themes: information sources, interpreting the APR, emotional reactions, finding answers, opinion on accessing the APR on the portal, and preference for doctor–patient communication. The underlined terms were categorized into 12 domains creating the ontology of unknown terms in APRs. This study's findings suggest that patients, regardless of the diagnosis, have difficulties in understanding APRs, mainly due to complex medical terminology. Providing access to APRs via PPs alone is not sufficient to improve patient understanding. Further research is necessary to develop effective solutions that improve patients' understanding of these documents.