Canada is a global leader in autism research and is home to organizations that collect clinical, health, social and educational data that often operate in silos, away from each other and from the Autistic community. These fragmented systems represent a barrier in supporting the complex needs of Autistic people and their families. The Learning Health System (LHS) has been proposed as a solution to the fragmentation of systems by identifying problems and developing solutions in close collaboration between researchers, clinicians, public health professionals, persons with lived experience and other stakeholders. Access to high quality, comprehensive, and integrated data is critical to a successful LHS.
Funded by the Azrieli Foundation, the Autism Data Asset Map is a project commissioned by Autism Alliance of Canada as part of the Autism Data Collaborative. The primary goal of this project is to inform the community at large about Canadian data assets that can be used for autism research and to support LHS for neurodevelopmental disorders. To achieve this, we conducted an environmental scan which will inform the development of an asset map that can be used by policy makers and researchers as a resource for future projects and initiatives.
This scan will include research databases used to conduct peer-reviewed studies that inform clinical practice policy, as well as government databases used to support the development, implementation and evaluation of provincial and federal policy.