Inflammatory Bowel Disease (IBD) is a chronic condition, usually diagnosed in early adulthood, with significant life-threatening disease-related complications and reductions in quality of life if left untreated. Despite research about IBD in the general population, there is limited-to-no evidence about IBD among Indigenous peoples in Canada.
Now, funded by Saskatchewan Health Research Foundation (SHRF) and the Saskatchewan Centre for Patient-Oriented Research (SCPOR), Dr. Juan-Nicolas Pena-Sanchez, Dr. Derek Jennings, and the Inflammatory Bowel Disease (IBD) among Indigenous Peoples research group aim to estimate the epidemiology of the disease and explore perceptions of IBD among Indigenous people in the province.
This project began when Indigenous patients with IBD shared their experiences with research team members. An interdisciplinary research team was formed (including Indigenous patient/family advisors, a gastroenterologist, decision makers, and Indigenous and non-Indigenous researchers) to:
build partnerships with Indigenous patients with IBD;
determine the number of existing and new cases of IBD among Indigenous in Saskatchewan;
explore the perceptions of living with IBD, and barriers and facilitators to access health care among Indigenous peoples; and
understand Indigenous’ expectations of health care for IBD.
On May 30th, Rhonda Sanderson (Indigenous patient advocate member of the James Smith Cree Nation), Juan-Nicolas Pena-Sanchez (Assistant Professor at the Department of CH&E), and Jose Diego Marques Santos (MSc candidate in the Department of CH&E) attended the 2019 Canadian Association for Health Services and Policy Research (CAHSPR) annual conference in Halifax, Nova Scotia. On behalf of the research group, Rhonda and Juan-Nicolas co-presented at the Conference’s Access & Equity concurrent session. In their oral presentation, they outlined the collaborative framework and the methodology of this ground-breaking patient-initiated and -driven project.