Background: Through two prior PCORI Engagement Awards, the Bladder Cancer Advocacy Network (BCAN) has established a core group of eager and well-trained patient research advocates. A large proportion of trained patient advocates have agreed to serve as mentors for training of future patients interested in becoming partners on research teams. Therefore, the project team has engaged and trained patient partners, but lacks a means to implement engagement partnerships through the entire bladder cancer research community.
Proposed Solution: The project team proposes a conference that creates a pipeline from engagement education to implementation, promoting patient engagement dissemination in the bladder cancer community. Promoting Implementation of Patient Engagement (PIPE) conference support will help devise more effective and efficient mechanisms to integrate PEER Scholars into these types of comparative effectiveness research teams.
Objectives: To promote implementation of patient engagement in bladder cancer research, objectives for the PIPE (Promoting Implementation of Patient Engagement) conference are as follows:
- To identify mechanisms to unite PEER Scholars with research teams engaged in bladder cancer research with a focus on addressing prioritized research questions from the BCAN-PSN
- To identify strategies to better integrate PEER Scholars into the design and execution of clinical trials in bladder cancer
- To outline optimal mechanisms to disseminate the results from patient-centered outcomes research in bladder cancer to patients and caregivers
Activities: PIPE will be a one-day conference immediately following the 2019 BCAN Summit in October. Given the alignment between advocacy and research engagement, combining the venue and location with the summit will promote attendance and defray costs. The draft agenda will consist of speakers and panel discussion in the morning, and focus groups in the afternoon. Morning presentations will describe engagement from the patient perspective as well as seek perspectives from funders and industry. Afternoon focus groups will discuss best practices to: engage patients in investigator-initiated research studies; participate in the design and presentation of clinical trials; and disseminate the results of bladder cancer patient-centered outcomes research to patients and caregivers.
Outcomes: Outcomes of the PIPE conference are to: increase participation of bladder cancer patient advocates in research training; develop a consensus for strategies to link trained patient partners with research teams and clinical trials; implement strategies to promote dissemination and implementation of patient engagement in bladder cancer; plan content needed for webinars that outline the results of the focus groups.
Patient and Stakeholder Engagement Plan: The PIPE leadership team, consisting of engaged bladder cancer patients and caregiver advocates, are the core of this project and have drafted and edited this proposal. Patient advocates will also be involved during the interactive PIPE conference, and all webinars following the PIPE conference will be led by patient advocates and will be tailored to bladder cancer patients, caregivers, and researchers across the country.
Project Collaborators: Angela Smith, MD, MS, from the University of North Carolina and John Gore, MD, MS, from the University of Washington will work closely with BCAN to implement this proposal.