Patient empowerment through engagement in bladder cancer research

Abstract

BackgroundThe Bladder Cancer Advocacy Network's (BCAN) Patient Survey Network established a diverse bladder cancer patient community who contribute to the prioritization of bladder cancer research topics through surveys and summits. This study describes our experience establishing an online learning program to train this population in research methods specific to bladder cancer and to subsequently engage patients in various stages of bladder cancer research. MethodsWe created online learning modules that addressed scientific concepts related to bladder cancer, creating the patient empowerment through engagement in research (PEER) program. Bladder cancer patients and caregivers who completed the program were invited to participate in the annual BCAN Bladder Cancer Summit to develop research study concepts. We then facilitated the promoting implementation of patient engagement in research conference to identify methods of connecting patient research advocates with research teams and find ways to disseminate patient-centered outcomes research. ResultsAfter completing the online training, 2 cohorts of PEER trainees attended the 2017 (n = 19) and 2018 (n = 18) Bladder Cancer Summits. These research advocates contributed to the prioritization of bladder cancer research topics that appeared on the Patient Survey Network and developed 3 patient-centered research studies. BCAN research advocates participated in promoting implementation of patient engagement the following year (n = 57) and identified these priorities: (1) the need to expand the patient research advocate cohort, (2) the need to streamline links between patient research advocates and research teams, and (3) approaches for patient-centered dissemination of research results. ConclusionsThe PEER program provides an exemplar for disease-specific research training for fostering patient engagement in research. This framework can be extrapolated to facilitate patient engagement in the research of other disease processes and malignancies.