The Library of Lived Experience project seeks to create a unique virtual space shaped by people with lived experience of neurodevelopmental conditions and their experiences with the healthcare system. Using an open-source, online learning platform developed at the University of BC called Tapestry Tool, the Library will allow contributors to share multimedia content. More than just another healthcare website, this Library will be a platform where people’s real-life stories will sit equally beside medical knowledge and can help us all better understand the needs of patients, families, and caregivers.
Those with lived experience will direct what goes into the Library and the issues that the Library addresses, making sure that it is representative and includes the voices of Indigenous and other equity deserving communities. As a collective learning space, the Library invites individuals navigating their own medical journeys, or professionals investigating important issues in the healthcare system, to share and learn from these diverse experiences. By showing how healthcare policies affect lives, the Library can be a source of information for advocacy groups and offer critical insights to researchers and policymakers. The Library of Lived Experience is meant to help kids with neurodevelopmental conditions and their families and caregivers and to be a force for positive change in the healthcare system.
