Connecting and protecting health data to improve health care in Canada
When it comes to enabling access to health information, Canada falls far behind OECD countries, leading to increased risks to patient safety, according to Elizabeth Toller, Director General of Health Care Strategies for Health Canada. “Only 39 percent of Canadians can access some of their health information online, and only 35 percent of physicians have exchanged records externally.
Despite advancements in digitizing health care, such as electronic medical records, fragmentation remains a problem. “The various systems being used can’t connect because there’s a lack of alignment with common standards. So the data ends up being locked in those proprietary systems,” said Toller, who joined HDRN Canada’s Discussion Sessions, a monthly webinar series. “When health professionals don’t have all the information they need to make decisions about health care, it can lead to things like misdiagnosis or unnecessary treatments. And Canadians themselves feel disempowered when they have a lack of information to their own records.”
We can make all the progress in the world in facilitating the flow of data but we need to have Canadians’ trust in the way that their health data is being shared and protected. ~ Elizabeth Toller
To address these challenges, the federal government launched a comprehensive action plan centered around the Shared Pan-Canadian Interoperability Roadmap, developed in collaboration with Canada Health Infoway and the Canadian Institute of Health Information. Endorsed by all provinces and territories, the roadmap is a part of a broader strategy to modernize healthcare through digital tools and data, aiming to create a more connected, integrated care system, Toller continued. “We had, on the one hand, sort of an FPT action plan on digital health and health data, which was more focused on the digital tools side of things, and virtual care, which, at the time of the pandemic, was so important.”
This comprehensive approach seeks to address issues stemming from data fragmentation and propel Canadian health care into a future where digital tools and integrated data systems create a more seamless, effective health care experience. “Connected care means that health information follows an individual through the different sectors of the health care system. Being able to leverage health data and digital tools is a key way to achieve that,” Toller explained. “There’s also the importance of using health data for secondary uses. We need to leverage the power of data for driving innovation and research but also to draw data-driven insights to inform policy decisions about the health care system.”
Progress was made toward this vision when provincial and territorial agreements on five health data priorities, including collecting and sharing high quality and comparable de-identified information, adopting common interoperability standards, aligning policies to support health data sharing, and ensuring a person-centred approach to the management of health data. Throughout the process, the government has taken care to better incorporate and build in Indigenous perspectives and expand participation from Indigenous organizations. A plan to build public trust and literacy in health, data and digital health is also in development. “We can make all the progress in the world in facilitating the flow of data but we need to have Canadians’ trust in the way that their health data is being shared and protected.”
Watch Elizabeth Toller’s HDRN Canada Discussion Session presentation, Canada’s Vision for Modern Connected Care, with Patrick Lagogia, Executive Director of FPT Policy and Data Relations at the Public Health Agency of Canada.