Inferring bladder cancer research prioritization from patient-generated online content.

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.