Senior representatives from organizations across Canada are working together to develop a Pan-Canadian Real-world Health Data Network (PRHDN)
Canadian researchers have achieved scientific success, and strong influence on policy, by virtue of our world-class provincial health-related administrative data holdings; but research data infrastructure that supports multi-province and pan-Canadian studies will be essential for future success and relevance:
Other jurisdictions are collaborating to create health data holdings that, in some ways, rival or surpass the data assets Canadian researchers have benefited from based on our large single-payer health systems
Multi-province studies are required if we are to learn from the natural policy experiments that have been occurring; for example, as provinces have taken different approaches to primary health care reform
There is a limit to the interest the international community will have in sub-national studies, and an opportunity for Canadian researchers to have enhanced impact if we move to multi-province and pan-Canadian studies
It is neither practical nor efficient to expect individual researchers or small teams to establish and maintain health research data infrastructure for multi-province studies
The core PRHDN research data infrastructure will be a distributed data network that enables multi-province studies without requiring that data leave provincial boundaries. There are three main infrastructure elements:
Algorithms: reusable processes, ideally in the form of documented code, which implement a common approach or definition, e.g., to define a case or to create a derived variable
Harmonized common data: datasets held within provincial boundaries that contain comparable individual-level data, including common data that are currently available, and new data that have been harmonized by applying PRHDN algorithms
Common analytic protocols: methods and technical/process documents detailing the steps for multi-province health research studies which yield results that can be pooled or combined even though the underlying provincial data are not harmonized
Please download the PRHDN glossary for additional terms and definitions related to PRHDN research data infrastructure.
PRHDN will also have complementary infrastructure (e.g., scientific coordination, joined up governance and training, a forum to connect with the policy community, mechanisms to share learning and expertise), to ensure that PRHDN health research data infrastructure has its maximum impact.
Our goal is to design PRHDN research data infrastructure that is useful and transformative for Canadian researchers and policy/decision makers. We welcome your input. Please mail
firstname.lastname@example.org to find out more, or click
here to provide suggestions or become a member of the PRHDN Consortium.