Appl Clin Inform 2019; 10(03): 377-386
DOI: 10.1055/s-0039-1688938
Special Topic: Visual Analytics in Healthcare
Georg Thieme Verlag KG Stuttgart · New York

Ontology-Based Interactive Visualization of Patient-Generated Research Questions

David Borland
1   RENCI, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States
Laura Christopherson
1   RENCI, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States
Charles Schmitt
2   National Institute of Environmental Health Sciences, Durham, North Carolina, United States
› Author Affiliations
Further Information

Publication History

12 December 2018

17 April 2019

Publication Date:
05 June 2019 (online)


Background Crohn's disease and colitis are chronic conditions that affect every facet of patients' lives (e.g., social interaction, family, work, diet, and sleep). Thus, treatment consists largely of disease management. The University of North Carolina at Chapel Hill chapter of the Crohn's and Colitis Foundation—IBD Partners—has created an interactive website that, in addition to providing helpful information and disease management tools, provides a discussion forum for patients to talk about their experiences and suggest new lines of research into Crohn's disease and colitis.

Objectives The primary objective of this work is to enable researchers to more effectively browse the forum content. Researchers wish to identify important/popular patient-suggested research topics, appreciate the full breadth of the research topics, and see connections between them, in order to more effectively prioritize research agendas.

Methods To help structure the forum content we have developed an ontology describing the major themes in the discussion forum. We have also created a prototype interactive visualization tool that leverages the ontology to help researchers identify common themes and related patient-generated research topics via linked views of (1) the ontology, (2) a research topic overview clustered by relevant ontology terms, and (3) a detailed view of the discussion forum content.

Results We discuss visualizations and interactions enabled by the visualization tool, provide an example scenario using the tool, and discuss limitations and future work based on feedback from potential users.

Conclusion The integration of a user-community specific ontology with an interactive visualization tool is a promising approach for enabling researchers to more effectively study user-generated research questions.

Protection of Human and Animal Subjects

This research was conducted with de-identified data from the CCFA Partners (now IBD Partners) Internet Cohort, made available via a Data Use Agreement with the University of North Carolina at Chapel Hill for a research project approved by the CCFA Partners Research Team.