More than 50 participants joined us at the University of Ottawa Heart Institute to better understand patients’ perspectives of data sharing language in informed consents. This study aimed to evaluate the clarity and understanding of two data-sharing consent templates to foster open-access and controlled-access data sharing. We explored whether presenting the data sharing consent templates in different formats impacts clarity and understanding. Specifically, we examined three conditions: 1) the written data sharing consent template alone; 2) the written data sharing consent template with the option to ask questions to a researcher; and 3) the written data sharing consent template with an explanatory video.

This study will help us develop clearer and more understandable consent forms that give people the information they need to make informed choices about sharing their data for research.

This event took place at The University of Ottawa Heart Institute on August 24, 2026.