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.
ACHWM
The Aaniish Naa Gegii: the Children’s Health and Well-Being Measure (ACHWM) is a culturally relevant measure of health and well-being for Indigenous children (aged 8-18 years). This tablet-based measure is created by the children, for the children and is used for population health assessments, program evaluation or mental health screening. The PROMs team is working with the Young lab to redevelop the ACHWM application for sustainability and scalability.
EASE
A patient-reported outcome platform for solid organ transplant patients studying their symptoms and emotions leading up to their transplant.
ImIn
A researcher- and patient-facing application connected to a database backend (fully integrated with EPIC and other UHN systems) that allow users to track patient consent and associated preferences with research participation.
My Studies
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.
PATH
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.
PCGL
A national collaborative effort to unify Canada’s human genome sequencing efforts and set out a federated data management system. The Pan-Canadian Genome Library (PCGL) will set out to frame the management and sharing of human genomic data.
PPADS
Physician-PArent Decision-Support for Neonatal Intensive Care – A stand-alone application that provides clinical updates and predictions of clinical outcomes for infants in the NICU to neonatologists. Patient-reported outcome measures (PROMs) are vital to engage patients meaningfully and capture their perspectives.
RareConnect
A platform where rare disease patients, families and patient organizations could develop online communities and conversations across continents and languages. RareConnect partnered with the world’s leading rare disease patient groups to offer global online communities, allowing people to connect around issues that affected them while living with a rare disease.
SOT
A research project for Solid Organ Transplant. Participants from both UHN and Humber River complete multiple surveys over a 6 month period.
STOP-CoV
A collaboration with researchers to develop a platform for data collection to analyze COVID-19 vaccination efficacy in aging populations. The application allows participants to input and track data while addressing specific research questions around effectiveness.
voxe
Voxe leverages eHealth technology as an innovative approach to capture and integrate patients’ voices into their care experience. The overarching objective is to improve health outcomes and transform the delivery of care for pediatric transplant patients in Canada by integrating PROMs into standard clinical practice. Co-designed and created in collaboration with patients and healthcare providers, Voxe’s intuitive and friendly experience makes PROMs easy to locate, access and supports a transformation in care delivery to improve health outcomes for pediatric patients.
