Patient-Reported Outcomes & Questionnaires
Patient-reported outcome measures and experience measures (PROMs/PREMs) are tools that patients use to provide information on aspects of their health status that are relevant to their quality of life, including symptoms, functionality, and physical, mental and social health. Our team is committed to building, and implementing electronic PROM/PREMs at UHN and other institutions across the country.
Princess Margaret At Home (PATH) is an electronic platform for patients to complete standard e-Patient Reported Outcomes (ePROs) from their own device prior to appointments. This progressive web application enables the screening and monitoring of patients and is deployed across Princess Margaret and will be expanded to allow reporting capabilities customized per clinic.
A platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
My Studies is the research platform associated with RareConnect. In partnership with CHEO RI, it was built to empower rare disease patients to contribute their symptom information to research studies. It is currently being used across Canada for large scale rare disease research with the hopes of expanding internationally.