Patient Advisory Groups in Inflammatory Bowel Disease: A Collaborative Relationship Between Patients and Researchers

Abstract

Background

Patient advisory groups are key to guiding research studies through meaningful engagement with the population of interest. Although patient advisory groups are greatly valuable to research studies, they are underutilized in inflammatory bowel disease research. Thus, this study aims to describe the development and implementation of a patient advisory group and evaluate the perspectives of researchers and members.

Methods

The Comprehensive Self-Management for inflammatory bowel disease study patient advisory group was created in 2022. The patient advisory group members and researchers completed the Public and Patient Engagement Evaluation Tool via an online survey. Thematic analysis of responses was used to identify common themes, and descriptive statistics were reported.

Results

The patient advisory group comprised of patients with inflammatory bowel disease met quarterly. Eight members and three researchers evaluated the patient advisory group. The five emerging themes were (1) lived experience of patient advisory group members; (2) diversity and representation; (3) purposeful engagement; (4) positives of patient advisory group; and (5) improvements to patient advisory group. All members agreed or strongly agreed that the meetings were a good use of their time, and all researchers strongly agreed that the group added value to the research study.

Conclusion

Patient advisory groups can create unique and positive experiences for both members and researchers when feedback is meaningfully sought, intentional, and incorporated into the study. There is a need to continue creating and using patient advisory groups with the intention of identifying problems and finding solutions alongside the inflammatory bowel disease community.

Patient advisory groups (PAGs) are instrumental to patient-centered research. PAGs need clear expectations that researchers will not only obtain knowledge of the lived experiences of IBD patients but also follow through and communicate how that information is used in research.

Lay Summary

Patient advisory groups (PAG) can create a positive collaborative experience for researchers and patients in inflammatory bowel disease (IBD) research when feedback is meaningfully sought and intentional. PAGs in IBD should be utilized to identify problems and find solutions.