Project 460771

Canada has amongst the highest rates of inflammatory bowel disease (IBD), consisting of Crohn's disease and ulcerative colitis. Approximately 0.8% of the population has IBD, and this number is expected to rise to 1% (1 in 100) people by 2030. It is therefore extremely important to understand why rates are so high, the burden of disease on the patient and families, as well as the costs to the health system and Canada's economy. Health "Big Data" has become a key tool in medical and health system research. "Routinely collected health data" (RCD) are data collected for purposes other than research, typically through the health system administration (health administrative data) and clinical care (electronic health records). Because RCD reflect the real world experience of patients, RCD is increasingly used for health services research, epidemiology and outcomes studies, and even clinical trials. While these data are increasingly available internationally, including in low- and middle-income countries, the knowledge of researchers has not kept up with rapidly advancing methods. We previously created the RECORD reporting guidelines, which improved the transparency and completeness of reporting of research with RCD. In this study, we propose to convene a group of international IBD clinicians, researchers, and patients to understand how RCD is used for IBD research. We will then create set of consensus guidelines to help guide future IBD research using RCD, and improve the methodology we use to conduct such research. This will ultimately improve the quality and reliability of such research, allowing patients, clinicians, and health care decision-makers to make more accurate evidence-based decisions based on this research.