Background: Bladder cancer is the fifth most common cancer in the United States and more commonly affects the elderly. Unfortunately, despite advances in therapy, survival from bladder cancer has changed very little over the past 20 years. Due to limited funding, designing meaningful patient-centered research is critical. Through PCORI funding, the Bladder Cancer Advocacy Organization (BCAN) has organized a 1,300-member Patient Survey Network of engaged patients who have prioritized bladder cancer research topics. This engaged patient group requires training in order to successfully partner with researchers in conducting patient-centered comparative effectiveness research studies.
Proposed Solution to the Problem: BCAN has a rich and diverse patient population through its Patient Survey Network (PSN), an international online community of over 1,300 members that includes patients and caregivers affected by bladder cancer. Members of the PSN commented on the lack of available research training for patient engagement in research. To solve this problem, the project team will develop a bladder cancer research training program (PEER—Patient Empowerment in Engagement Research) that includes online training and an in-person workshop. Ultimately, trained patients will serve as mentors for future cohorts, creating a sustainable method for continued patient education and engagement in research.
- To create a patient-friendly bladder cancer-specific research training curriculum (PEER) to foster more effective research partnerships in PCOR projects. Patient participants will then complete research training using the PEER training tool.
- To develop a research idea and study plan that addresses a patient-centered bladder cancer research question through collaborative discussion
- To create partnerships between newly trained patient experts and researchers engaged in existing bladder cancer research projects
Activities: The project team will develop research training materials, train an initial group of engaged bladder cancer patients to be patient experts, conduct a workshop to develop a study concept with newly trained patient experts, recruit additional groups of engaged patients to be patient experts (and mentors), and evaluate the satisfaction of the initial group of patient experts with their partnerships in bladder cancer research teams.
Outcomes and Outputs (projected): Projected outcomes of this study include:
- Completion of a formalized training curriculum that educates bladder cancer patients and caregivers about research design, grant writing, and research study execution
- Creation of a group of engaged patients with research training to link bladder cancer researchers with patient partners
- Patient engagement in an existing patient-centered research project
- Recruitment of a cohort of patient mentors
Patient and Stakeholder Engagement Plan: Patients and caregivers affected by bladder cancer will be the stakeholders involved and impacted by PEER. They will be instrumental in continuously ensuring appropriate design of the online curriculum and structure of the workshop as well as implementation and dissemination of results.
Project Collaborators: BCAN is the only advocacy organization solely devoted to advancing bladder cancer research and supporting patients/caregivers affected by the disease. BCAN will partner with Drs. Angela Smith (who led creation of the BCAN PSN) and John Gore (who co-led creation of the BCAN PSN and INSPIRE).
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