View Final Summary Report

Using contact information maintained by Bladder Cancer Advocacy Network (BCAN) for the purpose of communicating with their online community, we will approach www.bcan.org users to participate in the BCAN Patient Survey Network. This request will include consent for future contact and will also explain the overarching goal of the network: to engage patients in identifying research questions meaningful to men and women with bladder cancer and their caregivers. These stakeholders will be engaged throughout the project’s timeline. We anticipate contacting participants at the outset of the study and every 3 to 6 months in the early stages of development, but the ultimate goal will be to create a sustainable method for conducting research prioritization with bladder cancer patients on an iterative and ongoing basis.

The projected outputs from this project are the development of infrastructure and a list of prioritized research questions considered to be meaningful by bladder cancer patients and their caregivers to serve as a guide for BCAN to advocate for research topic areas by federal funders, to apply their own funding mechanisms specific to bladder cancer research, and to guide research discussions at the annual BCAN Bladder Cancer Think Tank; and the development of more opportunities for bladder cancer patients to engage in PCOR.  

Project collaborators include the University of North Carolina; University of Washington; and a stakeholder group including patients, clinicians, caregivers, researchers, and payers.