Building Capacity to Evaluate and to Understand Access to Inflammatory Bowel Disease Care Through Patient-Oriented Systems Mapping.

BACKGROUND: Inflammatory Bowel Disease (IBD) is a common, incurable disease that most commonly affects young people in the second and third decades of life. IBD causes inflammation and damage to the intestines that can lead to significant lifelong pain and suffering. Existing research suggests that Canada has more people diagnosed with IBD than anywhere else in the world. Despite documentation of variability in access to and quality of IBD specialist care, very little is known about how the healthcare system may compromise access to IBD care. PURPOSE: The goal of this project is to define actual and perceived wait times for IBD care using the patient perspective, and to identify and understand barriers to IBD care access through quantitative and qualitative systems mapping. This map will allow us to understand what parts of the healthcare system may be responsible for differences in access and how to best meet the needs of IBD patients across Canada. METHODS: We will use mixed methods to examine stakeholder defined barriers to access for IBD care. At every phase, the patient perspective has and will be included from study design to overall health care system redesign. Quantitative systems mapping (via survey) will be completed, which will serve to identify stakeholders for the follow-up qualitative component. For the qualitative component, we will use focus groups to collect data on perceptions, experiences, and insights related to IBD care access. IMPACT: This study will examine real and perceived differences in access to IBD care in the province of Nova Scotia and across Canada. The project will position the research network well for the conduct of cross-provincial comparative analyses of IBD care across the country and to propose province specific innovation for health system.