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CC BY 4.0 · ACI open 2025; 09(02): e65-e78
DOI: 10.1055/a-2731-4730
Research Article

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

Authors

  • Pavithra I. Dissanayake

    1   The Edward Via Collage of Osteopathic Medicine–Virginia Campus (VCOM-VC), Virginia, United States

  • Jacqueline Moss

    2   School of Nursing, University of Alabama at Birmingham, Alabama, United States

  • Eta S. Berner

    3   School of Health Profession (Posthumous), University of Alabama at Birmingham, Alabama, United States

  • James J. Cimino

    4   Department of Biomedical Informatics and Data Science, Heersink School of Medicine, The University of Alabama at Birmingham, Alabama, United States

Funding This work was supported by funds from the Informatics Institute, University of Alabama at Birmingham.
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Abstract

Objective

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.

Materials and Methods

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.

Results

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.

Conclusion

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.

Keywords

clinical documentation and communications - knowledge modeling and representation - pathology - patient portal - ontology

Human Subject Research Approval

This study was reviewed and approved by the Institutional Review Board of the University of Alabama at Birmingham. Verbal consent was obtained from all study participants prior to the initiation of the interview.


Authors' Contributions

All authors participated in the conceptualization and design of this project as well as the data analysis and interpretation. P.D. recruited the study subjects, conducted all the interviews, and transcribed the recordings of the interviews for analysis. P.D. drafted the manuscript with significant intellectual input from all the co-authors. Both authors J.C. and J.M. contributed to proofreading and editing of the manuscript. Authors J.C., J.M., and P.D. approved the final version of the manuscript.


Supplementary Material



Publication History

Received: 15 December 2024

Accepted: 14 October 2025

Article published online:
17 November 2025

© 2025. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)

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