Background
At the University of Alberta Hospital’s Neuro-Rehabilitation Centre, we’re creating a set of measures that will capture how well treatments are working for people with brain and spinal cord injuries, like those from strokes or car accidents. This set of measurement tools, called a “patient-centered outcome set,” will collect important information directly from patients, as well as data from their rehabilitation therapists (e.g. physical, occupational and speech therapist). It’s a way for therapists to understand how patients are improving and to adjust treatments so each person gets the best possible care for their specific needs.

Why it Matters
By using patient-centered outcome set, therapists can give more personalized care. This means they can see which treatments work best for each person and make changes quickly if something isn’t working well. All the information gathered will also help researchers learn which treatments work best for different types of brain and spinal cord injuries. This project will help make the Neuro-Rehabilitation Centre a leader in creating better, more personalized treatments for people with acquired neurological injuries.

Who Benefits
The patients and their families in the Neuro-Rehabilitation Centre are the main ones who benefit. They’ll receive care that’s tailored just for them. Therapists will have better information to make quicker and more effective decisions. Researchers will also use this data to improve care for future patients, not just here at the University of Alberta Hospital, but also all over the province as we plan to share the patient-centered outcome set with other hospitals and clinics.

Roles and Responsibilities
We are looking for a person, or caregiver to a person, with lived experience using neuro-rehabilitation services at a hospital in Alberta (i.e., therapy in a hospital for a stroke, spinal cord injury, traumatic brain injury) to partner in this project. Their role would be to help shape this research project from the start (grant application, ethics, participant recruitment strategies, data collection, data analysis, dissemination strategies).

There is some flexibility in how the project is designed, but there will likely be 1-2 patient research partners as part of the research team, as well as an advisory council who will provide additional perspectives at various stages of the project.

This project is in the grant development stage, so it would be a patient partner grant application role for now until the project is funded.

Time Commitment
The patient partner grant application role would start in November 2024 and the project is anticipated to start Summer 2025.

In the initial planning stages (November 2024 – Summer 2025) meetings would be around 1 hour, online, once a month with flexibility that meets the needs the patient partner and the project.

During the project (Summer 2025 – Summer 2027), the work would be about 1-2 hours a week, with the opportunity to be more or less involved, depending on the patient partner’s availability and preferences.

Compensation/Reimbursement
Compensation will be offered at the AbSPORU rate of $25/hour. Reimbursement will be provided for any direct expenses such as parking, refreshments and dependent care.

For more information or to express interest
Erin McCabe
emccabe@ualberta.ca
780.492.4605