Research Participation in Inflammatory Bowel Disease Studies: What Do Patients Want?

Abstract

Background: We aimed to determine patient perspectives on inflammatory bowel disease (IBD) research participation and potential changes related to the COVID pandemic experience.

Methods: Participants of the population-based University of Manitoba IBD Research Registry were surveyed March 2022 to March 2023. The survey inquired about views on IBD research participation in the pre-, peri- and post-COVID era. Questions included aspects of participation from home or in-person, potential reimbursement, results reporting, and study design. We determined a rank order of reasons for research participation. We assessed willingness to participate in 5 research genres: clinical trials, biospecimen collection research, research involving colonoscopies, research accessing medical records, and research with access to records and samples.

Results: Of 3018 invitees, 1105 (36.6%) completed the survey. Two-thirds reported that pre-pandemic they were unlikely to participate in placebo-controlled clinical trials, and nearly half would participate in a trial if guaranteed to receive active drug. The most important aspect impacting on clinical trial participation was understanding the potential side effects (81%). Post-COVID, 20%-30% reported that their interest in research participation decreased, 15%-20% reported that their interest had increased, with the majority (55%-60%) indicating no change in research participation interest. About 80% would participate in observational research. Payment for participation was not a significant motivator for most.

Conclusions: We found a low rate of interest in participating in placebo-controlled IBD clinical trial research but nearly 50% would participate in clinical trial research receiving active drug and 80% would participate in observational research. Research participation interest, however, was further lessened by the COVID pandemic.