One of the most significant challenges in healthcare and research is the siloed and fragmented data. The inability to share data across platforms, institutions, and provinces hampers quality research and its implementation with significant implications for equity, diversity, and inclusion.

The Pan-Canadian Approaches to Data Sharing and Access project aims to build processes, infrastructures, and tools that will enable data sharing across Canada in a safe and secure manner.

The project will initiate a qualitative stakeholder survey to understand hurdles and bottlenecks that lead to administrative delays at institutions. By understanding the complexities of data sharing across institutions, the Ethical, Legal and Societal Issues & Implementation Science research theme will be able to design strategies and solutions, including legal contracts, and templates to facilitate easy access and sharing of data.

Secondly, through this project, the theme will improve patient/participant access to personal data and research results. By conducting a stakeholder survey, the theme will gather information on the problems faced by patients, families, and healthcare providers when attempting to access personal health data. This information will help map out institutional and legislative challenges across the country and allow the theme to propose strategies to overcome data silos and develop education and awareness tools for patients and families to help the navigate the system.

This project is of critical importance. Through this project, ACCESS can improve data-sharing processes and enhance access to comprehensive medical information for patients, caregivers, and healthcare professionals.

Additionally, by addressing data governance challenges, the project will contribute to the overarching goal of creating a National Biobanking and Data Sharing Platform, ensuring equitable and efficient pathways for access to research data across Canadian jurisdictions.