Engaging With The Community

Consent and disclosure forms are an important ethical consideration in research. To ensure Brain-CODE, OBI’s neuroinformatics platform follows international best practices, OBI held a round table with the Research Ethics Board (REB) to examine consent language. The meeting between OBI, Chairs and Delegates of REBs from across Canada served as a means to continue building relationships between OBI and other critical research-relevant institutions in order to promote open science.

Including the voice of the community in research and care helps make it all the more relevant. To support this ideal, CONNECT engages a provincial Stakeholder Engagement Committee (SEC) that includes individuals with lived experience and advocacy group representation from Northern Indigenous communities. One of their efforts aims to engage health care providers in remote Northern Ontario communities through the ECHO platform to enhance education on concussion care. CONNECT also worked in partnership with the SEC to better understand the perspectives of research from patients and families across Ontario who have experienced concussion. Results of the survey were shared with concussion investigators in an effort to improve participant study engagement.

OBI’s GEEK Program was created to help support community-led organizations scale and spread services for individuals living with brain disorders. Last year, OBI-GEEK awarded a grant to the Educational Pathway to Employment Program, a post-secondary culinary certificate program for individuals with disabilities, available through Christian Horizons and Humber College. Thanks to this program, two graduates received jobs in the culinary industry.

Severe brain injuries may dramatically alter the trajectory of someone’s life. The Ontario Brain Injury Associations (OBIA’s) Brief Intensive Case Management helps connect individuals living with acquired brain injury and co-occurring diagnoses of addictions and/or mental illness to primary care and other services. The program embraces an integrated model of care to support these individuals with complex needs. Thanks to the initial OBI-GEEK funding - $140,000 over two years - the OBIA received follow-on funding to continue their necessary work.