Patient empowerment through engagement in bladder cancer research.
BACKGROUND
The 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.


METHODS
We 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.


RESULTS
After 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.


CONCLUSIONS
The 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.
['Hamad|Judy|J|', 'Gore|John|J|', 'Chisolm|Stephanie|S|', 'Powell|Morgan|M|', 'Lavallee|Danielle C|DC|', 'Lipman|Robert|R|', 'Lindsey|Nancy|N|', 'Smith|Angela|A|']
D035843:Biomedical Research D015331:Cohort Studies D006801:Humans D010353:Patient Education as Topic D010358:Patient Participation D012107:Research Design D057566:Self Report D001749:Urinary Bladder Neoplasms
Engagement Bladder cancer Prioritization Patient-centered outcomes Research training