Portability is a Promise of the Canada Health Act—It’s Time to Deliver
Data is one of the most underutilized resources in Canada. In healthcare, this was exposed at the onset of the COVID-19 pandemic when our outdated national public health surveillance databases could not keep up with the changing rate of COVID-19 infections, negatively impacting pandemic management and people’s lives. As a result, improvement of data integration and data sharing frameworks were implemented in public health surveillance databases.
Unfortunately, everyday health data at the individual level has not received the same attention. This personal health information (PHI) is each Canadian’s medical, diagnostic, and pharmacological history, which is necessary to provide quality healthcare. In Canada, our PHI is far from portable; it lacks sharing, due to the patchwork of approaches across provincial borders and even within provinces between healthcare providers (HCPs). This results in missed tests, missed diagnoses, longer wait times, and prescription errors. In extreme cases, the lack of sharing of PHI contributes to early and preventable deaths. These gaps exist despite portability being a central principle of the Canada Health Act; wherever a Canadian goes, their access to quality healthcare through the sharing of PHI should follow.
The Barriers
The main barriers to PHI portability in Canada are a lack of health information technology (HIT) interoperability standards and interprovincially fragmented privacy and data governance legislation. The last federal effort to address these challenges was through Bill C-72. Bill C-72 aimed to improve overall health information interoperability by prohibiting data blocking or interference with the access or exchange of electronic PHI, by health IT vendors. However, this bill died on the order paper when parliament was prorogued. How might present or future federal governments resurrect or modify Bill C-72 to improve PHI portability for Canadians? And how might provincial governments rethink their privacy and data governance laws to support PHI portability?
Lessons from Abroad
Canada could stand to learn from many international comparator countries on how to manage their gaps in PHI portability. Australia is globally top ranked for health information technology (HIT) interoperability and federal and state legislation supporting PHI portability. The following three recommendations were made based on the most prominent, successful, and impactful findings to PHI portability in Australia that could be implemented in Canada: 1) the development of a Canadian Digital Health Agency within the federal government, 2) the investment of health data conformance reviews and stronger digital health infrastructure, and 3) continuing to invest in the development of legislation in support of HIT interoperability and PHI portability.
Canada is falling behind on these recommendations.
First, several countries have already incorporated a federal digital health branch into their systems of health governance, including the UK, New Zealand, Norway, Denmark, and Finland. A Canadian Digital Health Agency should be designed to work alongside provinces on interprovincial PHI portability, HIT interoperability standards, advanced health technology, and digital health initiatives while still maintaining their provincial authority on the administration of their healthcare systems.
Second, a strong technological foundation is needed to support government planning for PHI portability. Implementing standards of consistent health conformance reviews of different health technology systems, improving digital health infrastructure, while integrating up-to-date standards of API Gateways and HL7 systems into our health systems, will ensure capacity for the development of improved digital health initiatives.
Third, more bills similar to Bill C-72 targeting private vendors, through federal oversight of trade and commerce power, are needed as a foundational beginning to building up legislation targeting overall PHI sharing and interoperability. For example, Australia’s recent Health Legislation Amendment legally requires certain HCPs, such as pathology and diagnostic services, to upload and share specified clinical records to their patients’ electronic medical record, unless an exception applies. Canada’s data governance and privacy legislation need to catch up and be designed to allow for sharing of PHI across providers and health technology systems while being respectful of privacy and patient consent.
Next Steps
Implementing these measures into the Canadian healthcare system will support the ability for optimal PHI portability among HCPs and different health technology systems, while maintaining security of privacy and patient consent measures. Key to this is building new cross-provincial standards that ensure software and data work together. Developing these standards will require political will and the harmonization of existing privacy and data governance legislation. Living in a fully interoperable and portable health system will ensure that we live up to the Canada Health Act principle of portability, a world in which providers are able to access and share patients’ health records to provide high quality healthcare to Canadians.
Lauren Asaad is a Masters student at the University of Calgary’s School of Public Policy.