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Published on: July 22, 2025
Ontology-Based Interactive Visualization of Patient-Generated Research Questions
David Borland1, Laura Christopherson1, Charles Schmitt2
1RENCI, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States.
Insights
Researchers can now better explore patient-suggested research topics for Crohn's disease and colitis. An interactive tool and ontology help identify and prioritize research agendas from patient discussions.
Area of Science:
- Medical Informatics
- Patient-Reported Outcomes
- Ontology Engineering
Background:
- Crohn's disease and colitis significantly impact patients' quality of life, necessitating effective disease management strategies.
- The Crohn's and Colitis Foundation-IBD Partners at UNC-Chapel Hill developed an interactive website with a forum for patient experiences and research suggestions.
Purpose of the Study:
- To enhance researchers' ability to navigate and analyze patient-generated research topics from online discussion forums.
- To facilitate the identification of key research themes, their scope, and interconnections for prioritizing research agendas.
Main Methods:
- Developed a domain-specific ontology to structure themes within the patient discussion forum.
- Created a prototype interactive visualization tool integrating the ontology with forum content for linked data exploration.
Main Results:
- The visualization tool offers linked views of the ontology, clustered research topics, and detailed forum discussions.
- Demonstrated an example scenario of researchers utilizing the tool to identify and analyze patient-suggested research.
Conclusions:
- Integrating a community-specific ontology with interactive visualization tools offers a powerful method for analyzing user-generated research questions.
- This approach aids researchers in more effectively understanding and prioritizing research agendas based on patient input.
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.
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