Huvudbild för Vitalis 2026

Working Together: Lessons Learned from an Inflammatory Bowel Disease (IBD) Patient Research Council [PCC037]

Tisdag 5 maj 2026 17:00 - 17:15 G4

Rapportör: Sandra Zelinsky

Spår: Co-creation

Inflammatory bowel disease (IBD), comprising Crohn’s disease and ulcerative colitis, are lifelong illnesses, often diagnosed in young adults. Managing and monitoring IBD requires multidimensional care, yet resources to support both medical and psychosocial needs are limited in Alberta, Canada. To address these gaps, we are co-developing MYIBDToolkit, a digital health intervention designed to support both patients and providers through enhanced communication and self-management tools. To ensure the intervention reflects patient priorities, a Patient Research Council was formed in June 2023. The council includes seven Patient Research Partner (PRPs), a gastroenterologist, dietician, project manager, and academic researchers. Monthly meetings and collaborative working groups were established to co-create research protocols, educational content, nutrition and mental health pathways. All members have equal access to shared materials and contribute through synchronous and asynchronous formats. A Patient Engagement Evaluation conducted in August 2024 identified areas for improvement, including communication, role clarity, and study timelines. In response, we implemented changes such as assigning a communications lead, forming smaller working groups, and creating a shared document outlining roles and milestones. Evening meeting-times and flexible scheduling supported consistent participation. Training provided by AbSPORU’s Patient Engagement Team—including sessions on patient-oriented research and qualitative methods—enabled PRPs to co-lead a focus group study. Five PAC members completed research ethics certification (TCPS 2: CORE 2022), further supporting their leadership roles. This collaborative, person-centred approach ensures that the lived experiences and insights of individuals with IBD shape the development of MYIBDToolkit. By integrating patient voices throughout the research process, we aim to create a tool that is responsive, accessible, and meaningful, ultimately improving quality of life and care for people living with IBD.
Språk

English

Konferens

GCPCC

GCPCC Seminarietyp

Orals

GCPCC Kod

PCC037

Föreläsare

Sandra Zelinsky Rapportör