Introduction and Objectives

Patient engagement is the meaningful involvement of patients throughout the research process. The Bladder Cancer Advocacy Network (BCAN) Patient Survey Network (PSN) was developed in 2015 to identify prioritized comparative effectiveness research questions for bladder cancer. Building on the success of a large pragmatic trial to evaluate treatment of bacillus Calmette-Guérin-unresponsive disease, our objective was to translate research priorities toward patient-
centered research design for muscle-
invasive bladder cancer (MIBC).

Methods

We conducted several patient surveys from the BCAN PSN, most recently in 2020, to understand patient-centered research priorities for bladder cancer. Between ˜500 and 1,000 respondents replied to each survey, with 100 to 200 identifying as having MIBC. The highest prioritized research question among patients with MIBC was the comparative effectiveness between radical cystectomy and bladder-preserving chemoradiation. To translate this to meaningful patient-centered design, I applied lived and research advocacy experience to provide critical feedback to design a survey that queries patient preferences regarding study design, outcomes and conduct.

Results

The patient-centered survey design involved 5 general categories: 1) willingness to enroll in a randomized versus prospective cohort study; 2) preferred study duration; 3) preferences between chemoradiation and cystectomy; 4) importance and prioritization of outcomes and 5) free text questions to ascertain the importance of the study and how results might aid decision making. As a patient advocate with lived experience, I contributed important changes, including the addition of sexual and bowel function outcomes and logistical burden (eg transportation, time off work), order of listed patient outcomes, word selection (eg urinary symptoms changed to urinary function) and clarification that cystectomy may also include additional organ removal (eg prostate, uterus, vagina). This survey will be distributed to the BCAN PSN to develop the design of a pragmatic trial to compare cystectomy with chemoradiation for MIBC.

Conclusions

Patient advocate involvement is important and necessary to design meaningful patient-centered research. Patient advocates provide valuable information through all stages of research, beginning with selection and framing of research questions, study design and relevant outcomes.