Protecting Your Data

The study team is committed to protecting your data and privacy. This page outlines the measures that we have put in place to ensure data security and protection.

Your stories will not be used or shared without your consent. You may click here to access the electronic consent form for more information about the study and how your data will be governed and protected.

After you record your story, you will have the right to choose whether/how we may use your story in research and education. Click here to review the media release form which provides you with several options. 

Raw study data (that is, unedited audio and video recordings made through this website) will only be accessible to Dr. Csilla Kalocsai (PI), Dr. Oshan Fernando (Research Coordinator) and study staff that may be hired for this study. 

Recognizing the importance of ensuring Indigenous and Black data sovereignty, the study team has also formed 2 separately-constituted data governance tables to oversee data collected from Indigenous and Black study participants. 

Data that is collected from participants who culturally identify as Indigenous will be managed in accordance with the First Nations principles of Ownership, Control, Access, and Possession (OCAP®). A separate Indigenous Data Governance Table, chaired by Dr. Emily Simmonds, has been established to manage data from Indigenous participants.

Data that is collected from participants who culturally identify as Black will be managed in accordance with the principles outlined in The Black Health Equity Group’s Engagement, Governance, Access and Protection (EGAP) framework. The Black Data Governance Table is chaired by Mr. Christopher Townsend. 

Data from participants who do not identify as Black and/or Indigenous will be managed in keeping with the framework provided by Sunnybrook’s Research Ethics Board. If you have any questions or concerns about how your data will be managed please contact Dr. Oshan Fernando at oshan.fernando at

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