Have you ever been frustrated by the need to continually repeat your medical history or experienced delays in care due to poor communication between healthcare providers? A 2023 survey found that 42% of Canadians reported at least one gap in coordination of care and clinical communication in the past year, because they had to repeat information or there was a communication issue or delay between healthcare providers.
Good data starts with good digital health records, which in turn enables data to be used to improve health care. Yet, incredibly, digital health records are neither standard nor standardized across Canada. Where digital health records, or electronic health records (EHRs), exist they are often static and inaccessible to anyone outside a specific health institution or location. This assumes a person will receive a lifetime of care in the exact same place, with the exact same provider.
Over 80% of Canadians report interest in accessing their own personal health information electronically.[1] Yet, only 39% say they have ever accessed their personal health information online.[2]
For Canadians, accessible and connected health information could mean: more timely care and diagnoses, shorter wait times for treatment, and more continuous, reliable access to the care we need. In a 2022 survey of doctors, nurses and other health care workers, about 9 in 10 agreed improved sharing of electronic health information by health care providers would lead to a better patient experience and to safer, higher-quality care.[3]
For our healthcare systems, accessible and connected health information could mean: more timely, evidence-based healthcare decision-making, coordinated care, and greater healthcare system effectiveness. Healthcare workers would also see less duplication, increased productivity and more collaboration with other health professionals.[4]
More effectively leveraging the data already collected in our healthcare systems and thinking differently about our sources of evidence for decision-making could also help us achieve earlier access to innovative medicines in Canada - which we desperately need. In Canada, the time from regulatory approval by Health Canada to public access or reimbursement of new medicines is twice as long as in most peer countries.[5] To ensure faster access for patients, we should consider programs that allow for immediate, conditional access to new treatments while additional data for longer-term decision-making is being generated. This way, as we determine the best way to provide sustainable access to new treatments, patients can still access newer medicines that have been deemed safe and effective by Health Canada.
Transitioning to a more data-driven health system could further improve outcomes for patients, streamline care, and expedite access to new medicines. To make this a reality, our health data needs to be: accessible, accurate, consistent, complete, timely, and interpretable.
The Federal government, through the Connected Care for Canadians Act, is committed to improving health data access and creating a modern, connected care system. The Act aims to accelerate collaboration between all government levels to implement the Pan-Canadian Interoperability Roadmap from Canada Health Infoway, promoting common data standards and interoperability.
Provincial and territorial governments are also clearly committed to improving data systems and the implementation of the Pan-Canadian Interoperability Roadmap. Recent federal-provincial bilateral agreements aim to enhance provincial data systems, and several provinces have their own EHR initiatives. For instance, Nova Scotia now allows all patients aged 16+ to access their EHRs via the YourHealthNS app.
Important groups like Canada Health Infoway and the Canadian Institute for Health Information are also leading important projects and initiatives to ensure we are advancing towards our vision for better, more connected health data for Canadians.
So what needs to happen to continue to see us move forward?
Go paperless. Quality digital health records, or EHRs, are crucial for the delivery of modern healthcare. They enhance patient care by providing comprehensive, up-to-date information, reducing errors, and enabling quick access. EHRs streamline administrative tasks, reduce paperwork (e.g., faxes), and facilitate better coordination among healthcare providers, supporting integrated care and effective follow-up. Additionally, structured data within EHRs can be analyzed to improve healthcare outcomes in a way that is highly labour intensive with data on paper. With these goals in mind, the provincial government in Ontario has set a goal to “axe the fax” by 2028, but it will take collaboration to make the switch.[6]
Collect data once, use it multiple times. We need to support organizations that manage health data in expanding their focus beyond data security, so that data is protected and secure but also allows additional use of the data. By ensuring proper classification, protection, primary and secondary use, as well as data quality we will better be able to reliably use data in our decision-making in addition to protecting it from unauthorized access.
Connect across different sources of data. Provincial data systems need to prioritize data interoperability across sites of care, and connectivity between clinical, financial, and administrative data to support decision making at all levels of healthcare. We see progress in this area in provinces like Manitoba, Saskatchewan, and Alberta as they connect different sources of their provincial data.
Nurture public-private partnership. Public-private partnerships bring together resources, expertise, and innovative solutions from both sectors to address healthcare challenges more effectively. These collaborations can drive advancements in research, improve healthcare delivery, and optimize resource use, ultimately leading to better patient outcomes and a more resilient health system. Collaboration across diverse groups will allow us to test use cases of health data in decision-making, learn and iterate to ensure we are moving in the right direction.
For Canada to have data-driven health systems that continually improve - electronic health records, high quality data that is connected, protected, and accessible for use, and public-private partnerships are pivotal. Increased collaboration between healthcare providers, key organizations, provincial and federal governments position Canada to be a world leader in the health data space, as long as we keep working to seize the opportunity. By investing in our data, we can better inform patient care and health system decision-making.
References
This website contains information on products which is targeted to a wide range of audiences and could contain product details or information otherwise not accessible or valid in your country. Please be aware that we do not take any responsibility for accessing such information which may not comply with any legal process, regulation, registration or usage in the country of your origin.
You are now leaving the website of Hoffmann-La Roche Ltd. ("Roche Canada"). Links to all external sites are provided as a resource to our visitors. Roche Canada assumes no responsibility for the content of these sites. Roche Canada has no control over these sites and the opinions, claims or comments contained in these sites should not be attributed to Roche Canada, unless otherwise specified.