Patient Advisory Groups in Inflammatory Bowel Disease

Background: Patient advisory groups (PAG) are key to providing information and guidance to research studies through meaningful engagement with the population of interest. The lived experiences of those with illnesses are critical to creating patient-centered research. Although PAGs can be of great value to research studies, PAGs are not well utilized or described in inflammatory bowel disease (IBD) research. Thus, the aim of this study is to describe the experiences and motivations of PAG members and the perspectives of researchers leading a PAG. Methods: PAG members and researchers of a Comprehensive Self-Management for IBD (CSM-IBD) met quarterly via Zoom to provide insight and discussion on portions of the study ranging from study protocol to general ideas on recruitment and retention. PAG members were compensated for their time. Using convenience sampling, PAG members and researchers completed an anonymous electronic survey in August 2023 with questions from the Public and Patient Engagement Evaluation Tool (PPEET) which includes a 5-point Likert scale and open-ended questions. We performed a thematic analysis of responses to identify common themes. Descriptive statistics were reported. Results: Eight PAG members (Crohn’s disease=6, Ulcerative colitis=2) and three researchers were included. Of the PAG members, there was an average disease duration of 11.9 years, a majority used biologic medications (n=5), half had surgery for their IBD (n=4), and more than half worked full-time (n=5). The five emerging themes (subthemes) regarding PAGs were 1) lived experience of PAG members (motivated to help others and improve research, the value of patient experience in IBD research); 2) diversity and representation (variety of thoughts and experience, partnerships); 3) purposeful engagement (researchers valuing the input of members, compensation, researchers implementing the input and communicating changes); 4) positives of PAG (supportive environment, peer support, meeting accessibility); and 5) improvements to PAG (too large of group size, difficulties with online format, needs for improvements in communication). All PAG members agreed or strongly agreed that the format of the meetings was accessible, the meetings were a good use of their time, and their input made a difference in the work of the study. All PAG researchers strongly agreed that the CSM-IBD PAG added value to the CSM-IBD study, and agreed or strongly agreed that the group achieved its objectives. Conclusions: PAGs are critical to the development of patient-centered IBD research. PAGs 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 PAGs to identify problems and find solutions alongside the IBD community.