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Inferring bladder cancer research prioritization from patient-generated online content

World Journal of Urology volume 37, pages 1145–1150 (2019)Cite this article

Abstract

Purpose

Patients and their families utilize online resources when dealing with a diagnosis of bladder cancer. Many patients have questions regarding clinical management options. Online research forums may help researchers and providers identify research areas of interest. Our objective was to review online forums and identify research questions that are important to patients and families impacted by bladder cancer diagnosis.

Methods

We reviewed 1 month of online content from the Bladder Cancer Advocacy Network Inspire online community (https://www.inspire.com/groups/bladder-cancer-advocacy-network). Using affinity diagramming, we categorized the submitted content from patient users into themes stratified by the cancer severity of the patient user (non-muscle-invasive bladder cancer, muscle-invasive bladder cancer, metastatic bladder cancer). We categorized the content by the audience of forum posts (i.e., inwardly directed, those seeking support, vs. outwardly directed, those sharing personal experiences) and constructed comparative effectiveness research questions from the submitted content.

Results

From 14 July 2014 to 14 August 2014, a total of 394 forum posts were collected, of which 3 were excluded from analysis due to non-relevant content, leaving 391 comments for final analysis. Almost 38% of posts involved muscle-invasive bladder cancer and 25% of posts were from people other than the patient. Inwardly and outwardly directed posts were commonly related to clinical treatment concerns.

Conclusions

Review of online patient-generated content may offer insight into comparative effectiveness research topics of importance to bladder cancer patients. A more formalized process may better represent research priorities among bladder cancer patients.

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Acknowledgements

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

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Affiliations

  1. Division of Urology, Department of Surgery, Brigham and Women’s Hospital, Harvard Medical School, 75 Francis St, Boston, MA, 02115, USA

    Matthew Mossanen

  2. Dana Farber Cancer Institute, 450 Brookline Avenue, Boston, MA, 02215, USA

    Matthew Mossanen

  3. Department of Urology, University of Washington, 1959 NE Pacific St, Seattle, WA, 98195, USA

    Alice Chu & John L. Gore

  4. Department of Urology, Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, 450 West Dr, Chapel Hill, NC, 27599, USA

    Angela B. Smith

Authors
  1. Matthew Mossanen
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  2. Alice Chu
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  3. Angela B. Smith
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  4. John L. Gore
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Contributions

M Mossanen: protocol/project development, data collection or management, data analysis, and manuscript writing/editing. A Chu: data collection or management, data analysis, and manuscript writing/editing. A Smith: manuscript writing/editing. J Gore: protocol/project development, data collection or management, data analysis, and manuscript writing/editing.

Corresponding author

Correspondence to Matthew Mossanen.

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The authors declare that they have no conflict of interest.

Research involving human participants and/or animals

This article does not contain any studies with human participants or animals performed by any of the authors.

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Informed consent was obtained from all individual participants included in the study.

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Mossanen, M., Chu, A., Smith, A.B. et al. Inferring bladder cancer research prioritization from patient-generated online content. World J Urol 37, 1145–1150 (2019). https://doi.org/10.1007/s00345-018-2479-0

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  • DOI: https://doi.org/10.1007/s00345-018-2479-0

Keywords

  • Bladder cancer
  • Online forums
  • Patients
  • Caregivers
  • Communication