New Report: Liberating Health Data in a Digital World
To explore ways in which data can remain safe while also becoming more easily accessible to researchers who examine issues of public interest, Diabetes Action Canada and the Schwartz Reisman Institute for Technology and Society at the University of Toronto teamed up in late 2019 to host a collaborative, cross-disciplinary workshop. The event helped to uncover insights about how health data could be liberated from the outdated mechanisms that ostensibly protect privacy, but instead act as obstacles to improved health outcomes for patients.
Participants, including Diabetes Action Canada Patient Partners, came from a variety of policy sectors, academic disciplines, non-profit organizations, and health care institutions to bring their diverse perspectives and backgrounds to a common goal: improving the health and autonomy of those who live with diabetes in Ontario through better access to and analysis of data stored in the health system. The group aimed not only to address diabetes-specific data challenges, but to more generally think about how data liberation could improve health and save lives.
This report, Liberating Health Data in a Digital World, summarizes the problems for which participants tried to pinpoint root causes, the diversity of approaches that were brought to bear on those problems, and the unique perspectives and backgrounds of participants from a variety of sectors.