Grant: Team Grant: Improving Health and Admin Data and Monitor Rare Diseases

Information is generated each time a person visits a doctor, goes to hospital, or has a procedure. This information is used to monitor the health system and for quality improvement and is important for health research and policy decision making. The reason for each visit is categorized using a system of codes which can be used to help describe patients. For example, to measure how many people living in each province, or across Canada, have a certain disease, or how many times a person visits the doctor for a specific illness. Unfortunately, codes do not exist for many rare diseases in this type of health data and so both the health system and researchers do not have a good understanding of how many patients in Canada have a rare disease or how this impacts the health system. This is needed to better support funding decisions for health systems and address patient needs. Our research is going to: •Help understand how well these codes identify patients with rare diseases, and how newer coding systems could do better. •Allow us to describe how often these patients visit a doctor, go to the emergency room, or are hospitalized and for how long as well as how much this costs, and compare this to a cohort of healthy people. •Understand what is important to patients and families when participating in registries, including whether they want registries to help them to be able to connect with other families. Our team of researchers, clinicians, policy makers and patient/family partners will explore how we can overcome the shortcoming of coding systems to more easily identify rare disease patients in administrative data, so we can better understand how many people in Canada are impacted by rare disease.