Health Data Research Alliance: Making an impact in Canada
The Health Data Research (HDR) Alliance has weighed in on Bill S-5: The Connected Care for Canadians Act, emerging as a leading voice on health and health-related data stewardship.
“This legislation aims to improve interoperability across Canada’s fragmented health information systems—an important and long-overdue step,” said Dr. Andrew Costa, co-lead of CanSPARK, an HDR Alliance member. “Recommendations from our joint brief were echoed in the final report of the Standing Senate Committee on Social Affairs, Science and Technology, which stated: ‘To fully realize the benefits of interoperable health data, the government should consider extending responsibility for the access to and exchange of electronic health information to all individual or institutional providers of health care.’”
The HDR Alliance is made up of leading Canadian data-holding organizations and others working to advance transformative data use that drives improvements in health and health equity across the country. In addition to collectively advising federal and provincial governments on modernizing health data laws, policies and practices, members collaborate on projects, share expertise and best practices, and strengthen the policies and infrastructure that support Canada’s health data ecosystem.
The HDR Alliance plays an essential role in Canada’s health data landscape. By working together, we can help shape the future of health data—advocating for the long-term sustainability of a pan-Canadian health data ecosystem and influencing strategic directions across the country. ~ Dr. Kim McGrail
“The HDR Alliance plays an essential role in Canada’s health data landscape,” said Dr. Kim McGrail, Scientific Director and CEO of HDRN Canada, an HDR Alliance member. “By working together, we can help shape the future of health data—advocating for the long-term sustainability of a pan-Canadian health data ecosystem and influencing strategic directions across the country.” Key contributions include enabling multi-regional research by making health data easier to find, access and use as well as engaging with researchers and policymakers to promote world-leading policies for responsible data use, and promoting adherence to established principles of data management.
“The HDR Alliance is a catalyst for partnerships and collaborations that strengthen Canada’s health data ecosystem,” said Dr. Robert Platt, Chair of the HDR Alliance and Principal Investigator of the Canadian Network for Observational Drug Effect Studies, a member organization. “We expand opportunities for pan-Canadian research that informs health policy and practice. By supporting responsible data sharing and collaboration among members, we enable larger, more impactful studies across Canada and support thousands of researchers conducting multi-regional studies.” These efforts generate real-world evidence that helps decision-makers access timely, actionable insights to improve health systems and care delivery, he added.
The HDR Alliance plays an important role in methodological innovation and researcher capacity-building, according to Dr. Parminder Raina, Principal Investigator of the Canadian Longitudinal Study on Aging, an HDR Alliance member. “We are developing new methods that enable analysis across multiple data platforms without moving data, helping accelerate health research in Canada through advanced analytic tools,” said Dr. Raina. “We also provide training, knowledge-sharing opportunities, and resources that support learning and discovery, including synthetic datasets and curated open datasets.”
While the government submission represents one of the HDR Alliance’s most impactful initiatives, members say it is only the beginning. “We’re just getting started,” said Dr. Platt. “We’re excited to continue demonstrating our impact on Canada’s health data ecosystem and our value to policymakers working to build the modern infrastructure needed for high-quality, timely, multi-jurisdictional health research.”
Learn more about the Health Data Research Alliance here. Get in touch at hdralliance@hdrn.ca.