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 equitable and efficient pathways for data sharing and access across Canada for childhood cancer research, patients, and their families.

Key Activities

• Conduct two national stakeholder surveys regarding barriers, bottlenecks, and facilitators in data sharing and access
• Conduct a legal and policy horizon scan of the context applicable to PWLE access to healthcare and research data
• Develop templates and tools such as guidance for patients, data request forms, and more.
• The project includes two integrated activities, centered on stakeholder engagement through mixed-methods national surveys.

First, the project conducted a stakeholder survey of researchers, legal representatives, and contracts specialists across Canada on data sharing for childhood cancer research. The survey covered data-sharing agreements, institutional requirements, ethical principles, common hurdles and bottlenecks, and potential solutions.  By better understanding the complexities of data sharing processes, the Ethical, Legal and Societal Issues & Implementation Science research theme will be able to design strategies and solutions to facilitate easier sharing of data.

Second, the project will engage adult survivors of childhood cancer and parents/guardians in the childhood cancer community on their needs, experiences and perspectives regarding access to medical records and research data. The survey will also explore experiences with the return and understandability of research results, interest in and accessibility of childhood cancer research information, and preferred tools, supports, and principles to support meaningful data access.

This project is of critical importance. Together, these activities will generate empirical evidence to help reduce data silos, improve data-sharing processes, enhance transparency, and support patients and their families in meaningfully accessing healthcare and research data.