Patient Engagement

IBD Doesn't Define Me: This book is a collection of stories from patients living with IBD and their struggles and triumphs when coming to grips with their diagnosis.  


Using an established research process developed by the James Lind Alliance (JLA) in the United Kingdom, our research team sought to identify and prioritize the top 10 unanswered questions related to the causes and management of pediatric inflammatory bowel disease (IBD). At the core of the JLA process, is meaningful engagement of patients, caregivers and health care professionals.


The steering committee brought together patients, caregivers, physicians, allied health professionals, and representatives from relevant national organizations. This collaborative research effort was led by Dr. Anthony Otley, on behalf of the Canadian Children IBD Network: A Joint partnership of CIHR and the CH.I.L.D. Foundation, consisting of 12 pediatric IBD clinics in children’s hospitals across Canada.


A final priority setting workshop was held in Toronto on March 28th, 2017. The workshop consisted of patients, caregivers and clinicians. They were tasked with prioritizing the top 10 unanswered questions about pediatric Inflammatory Bowel Disease they would like the research community to address.


To ensure that the research priorities of people directly impacted by pediatric IBD are identified, and by doing so, to help set the stage for a sustainable patient engagement agenda across the Canadian Children IBD Network to improve research.


The Top 10 questions according to the pediatric IBD community:

10. What is the optimal approach to diagnosis (education, psychological support, diagnostic tests) in pediatric patients with IBD?

9. What is the impact of access to psychological/mental health support in the management of pediatric IBD?

8. How does an early diagnosis of IBD in childhood/teenagers impact the lifeling course (prognosis) of the disease?

7. What are the long term effects of medications used to treat IBD?

6. How can we increase the knowledge and/or awareness around pediatric IBD so that diagnosis is not delayed?

5. How can we better define the role of, and improve access to, newer non-invasive, less costly, biomarkers of IBD endoscopic activity?

4. What triggers flare ups in IBD?

3. What role does diet have in the management of IBD?

2. Can IBD be prevented?

1. What are the causes of IBD (Crohn’s disease, ulcerative colitis)?​​