Canada has one of the highest rates of inflammatory bowel disease (IBD) in the world, affecting approximately one in every 150 Canadians. Given the burden of IBD and complications associated with its care, there is a high utilization of emergency department healthcare services in Canada. Therefore, this topic was prioritized by IMAGINE Network’s KT Working Group to serve as a powerful exemplar for policy-makers on how to systematically deal with issues pertaining to complex single conditions, instead of a one-size-fits-all approach to chronic-disease management. Specifically, in determining how to ensure appropriate, cost-effective services for IBD are available to those who need them, policy-makers will have the tools to think through how they can establish nimble health systems that are positioned respond to condition-specific issues.
The IMAGINE Network engaged McMaster Health Forum to convene two citizen panels on the subject of reducing emergency-department usage in people with inflammatory bowel disease in provincial health systems in Canada, followed by a stakeholder dialogue. The panels and dialogue – both informed by a pre-circulated synthesis of the best-available data and research evidence on the topic. The panels brought together a total of 23 citizens from across Canada, and the dialogue brought together 23 participants – 6 policymakers and managers, 2 healthcare professionals, 6 other types of stakeholders, and 9 researchers – from across Canada to examine the problem, elements of a potentially comprehensive approach for addressing it, and key implementation considerations.
In addressing some of these challenges facing patients with IBD, citizens expressed their collective desire for greater access to reliable and trustworthy sources of information and to patient-held records that include information on IBD to support self-management, front-line service enhancements in primary care and emergency departments for patients with IBD, and the use of remote consultations (by email, telephone or web-based platforms) with an IBD care team as an option for those living in rural and remote communities, but also for those experiencing an IBD flare who may not be physically able to attend an in-person consultation.
Stakeholder dialogues participants also expressed concern about patients’ reliance on emergency departments as their treatment option ‘default,’ a lack of strong connections among care providers and ‘one-size fits all’ guidelines, and a lack of service integration and system-wide leadership. Therefore, recommended better enabling self-management and the establishment of IBD care teams as key solutions for challenges raised, and identified six overarching principles to guide efforts to reduce emergency-department use among IBD patients in provincial health systems in Canada.
The results of this project have been disseminated by IMAGINE Network and its patient advocacy partners including McMaster Health Forum, Crohn’s and Colitis Canada, Canadian Digestive Health Foundation and Gastrointestinal Society, which have a cumulative social media community greater than 70,000 followers. All products from the project can be downloaded from the website and links disseminated through Facebook, Twitter and e-newsletters. The next steps identified are informing ongoing conversations among participants about to how to improve systems across Canada. For example, Manitoba has revised its health care model to Shared Health Manitoba and Dr. Charles Bernstein, spurred by this KT policy initiative and armed with the evidence summaries, has since engaged with health administrators and policy-makers about strengthening regional efforts in Manitoba.