Working Together: Lessons Learned from an Inflammatory Bowel Disease (IBD) Patient Research Council [PCC021] Har passerat
Tisdag 5 maj 2026 17:00 - 17:15 G4
Föreläsare: Sandra MunroModerator: Kerry Kuluski
Spår: Orals 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.
Konferens
GCPCC
GCPCC Seminarietyp
Orals
GCPCC Kod
PCC021
Föreläsare
Sandra Munro Föreläsare
Sandra Munro, Jessica Cromwell, Justin Mikhail, Amanda Pounder, Sophia Khan, Kaylee Janse, Melissa Fox, Kendall van Diepen, Kaitlyn Chappell, Karen Wong
Kerry Kuluski Moderator
Research Chair and Professor
Institute for Better Health, Trillium Health Partners and Institute of Health Policy, Management and Evaluation, University of Toronto
Dr. Kerry Kuluski is the inaugural Dr. Mathias Gysler Research Chair in Patient and Family Centred Care at the Institute for Better Health, Trillium Health Partners, and a Professor and Affiliated Scientist at the Institute of Health Policy, Management and Evaluation at the University of Toronto in Ontario Canada. An Applied Health Services Researcher and trained Social Worker, she earned her PhD in Health Services and Policy Research from the University of Toronto and completed a Postdoctoral Visiting Fellowship at the University of Oxford. At U of T, she supervises graduate students and serves as Course Director for a graduate-level course she developed on Patient and Caregiver Engagement in Research. She is also an Associate Editor for the international, peer-reviewed journal Health Expectations. Dr. Kuluski leads a program of research focused on the experiences of individuals with chronic health conditions and their caregivers, with the aim of improving care quality and health system performance through meaningful partnerships with patients, caregivers, and providers.