Canada has one of the highest rates of Inflammatory Bowel Disease (IBD) in the world, and the number of children developing IBD at a younger age is increasing every year. Yet, despite a wealth of research being conducted to better understand pediatric IBD, there was a concern it may be missing something critical. Dr. Anthony Otley and others noticed that the research being published was not specifically focused on answering questions that had been identified as important by patients with IBD, their families, and the clinicians who care for them.
Dr. Otley set out to form a Priority Setting Partnership with IBD stakeholders from across Canada to help identify the most common questions left unanswered by research. Using a rigorous research approach developed by the James Lind Alliance in the UK, the partnership spent months working together to narrow down more than 1000 questions generated by an online survey. The goal was to establish the “Top 10 unanswered questions in pediatric IBD”. Once these were identified at a final face-to-face meeting in Toronto, the partnership worked to spread the word about the findings with a dedicated motion graphics team to create animated videos and infographics, both in English and French, that could be easily accessed and shared through various media.
The big hope is that by publicly sharing the list, it increases awareness about what IBD patients, families, and clinicians want to know, and may encourage IBD researchers to either increase or shift the focus of their research to areas identified as shared priorities. Also, to help provide a blue print for similar actionable and sustainable patient engagement activities across Canada to improve research in this way.
To watch the videos and to get access to the infographics visit https://mirapeds.ca/giresearch/ibd-top-10/ or for more information on research Dr. Otley is conducting with other research teams visit mirapeds.ca/participateinresearch.ϖ
