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Updated: Feb 5, 2026

Culture of Bladder Cancer Organoids as Precision Medicine Tools
Published on: December 28, 2021
Inferring bladder cancer research prioritization from patient-generated online content
Matthew Mossanen1,2, Alice Chu3, Angela B Smith4
1Division of Urology, Department of Surgery, Brigham and Women's Hospital, Harvard Medical School, 75 Francis St, Boston, MA, 02115, USA. mmossanen@bwh.harvard.edu.
Online patient forums reveal key research questions for bladder cancer (BC) patients. Understanding these patient-generated insights can guide comparative effectiveness research and better address patient needs in bladder cancer care.
Area of Science:
- Oncology
- Patient-Reported Outcomes
- Health Informatics
Background:
- Patients and families increasingly use online resources for health information.
- Bladder cancer (BC) diagnosis prompts numerous patient questions about clinical management.
- Online communities offer a platform for identifying patient-centered research priorities.
Purpose of the Study:
- To identify research questions important to bladder cancer patients and their families.
- To analyze patient-generated content from online forums to understand their concerns.
- To inform comparative effectiveness research (CER) priorities in bladder cancer.
Main Methods:
- Content analysis of 391 posts from the Bladder Cancer Advocacy Network Inspire online community.
- Affinity diagramming to categorize themes by cancer severity (non-muscle-invasive, muscle-invasive, metastatic).
- Categorization of posts by audience (inwardly directed for support vs. outwardly directed for sharing experiences).
Main Results:
- Muscle-invasive bladder cancer was the most frequent topic (38%).
- Caregivers or others posted 25% of the content.
- Both support-seeking and experience-sharing posts frequently addressed clinical treatment concerns.
Conclusions:
- Online patient-generated content provides valuable insights into bladder cancer research priorities.
- Formalized analysis of patient forums can better represent research needs.
- Findings can guide future comparative effectiveness research in bladder cancer.
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