Canada needs a modern, national health data architecture

Digital health is vital for health care, but its governance and legislative framework should be a broader federal government responsibility—not just a health-care issue. Our national digital health legislation should not be cobbled together from the various provincial efforts. Modern health data architecture and governance enables better health care, ensures patient data rights, promotes competition, and meets our country’s international trade and security obligations. First, it's crucial to recognize that access to usable and shareable personal digital health data is a core patient right regardless of where care is received. Governments should guarantee this right by a specific date, as co-author Will Falk recommended in his 2021 Health Canada report, suggesting a two-year time frame. Set the date for 2025. Second, our trading partners have set out specific formats for usable digital data rights and technical specifications for programming interfaces that allow the exchange of meaningful data, like the Global Digital Health Partnership (GDHP). We should adopt an aligned and national set of these standards now, and not allow distracting and hindering divergence across provinces or other jurisdictions. Eighty per cent of our public health data resides in systems built by just 15-20 software providers. The majority of these companies already have obligations to meet these standards in other locales; the rest are $250-million-plus corporations that are ready to pivot if and when there is a signal from government to switch. Will Falk is an executive-in-residence at Rotman School of Management and a senior fellow at the CD Howe Institute. Photograph courtesy of Will Falk Third, core systems like prescribing and labs need to be electronic-only by a specific date—again, 2025. A hybrid model is eroding many, if not all, efficiencies gained by forcing us to manage multiple channels and related reconciliation workflows. The same can be said about electronic referral systems and the elimination of fax. Incremental shifts are often harder for the system; hard cutover dates seem drastic, but allow IT managers, administrators, and clinicians to develop a proper plan to realize efficiencies without juggling multiple models. Fourth, digital health modernization and matching international standards are critical for national security and international trade, not just for health care. The Organisation for Economic Co-operation and Development health ministers recognized this in 2022, and the GDHP has been built around these needs. Regulating the digital health software industry—valued at more than $20-billion in Canada—is also an important national competitiveness issue. The digital health industry is creating thousands of good high technology jobs each year. Meeting accepted international standards in their home country prepares Canadian firms to compete globally, whereas meeting an idiosyncratic local set of rules forces a do-over in order to scale. Our Canadian companies have the skills to compete, and several are now global leaders—for example, Mississauga’s PointClickCare and Montreal’s Alayacare. Dr. Trevor Jamieson is a general internist and the chief medical informatics officer at Unity Health. Photograph courtesy of Trevor Jamieson Fifth, implementing separate standards and reporting systems at the provincial level is unnecessary and counterproductive. It is quite literally a waste of time, adds no meaningful value to patient care, and erodes our digital innovation. Larger, established global health IT companies have no interest in producing software for smaller markets, and not uncommonly refuse or demand their own rules anyway; smaller, less established entrants with great ideas waste valuable effort, and put their companies at risk, by reworking their solutions again and again. A national framework based on well-designed legislation and regulations from American and European trading partners (and built on decades of work from highly respected standards organizations), using the GDHP, HL7 FHIR (Fast Health Interoperability Resources), and the U.S.'s Cures Act as foundation stones, should be built. Federal health agencies and related non-health agencies, such as StatsCan and the Competition Bureau, will need to adapt. A rethink of the federal health agency structure has been recommended in two reports to Health Canada. One consolidated health agency should manage the governing principles of our national digital health architecture and produce monthly reports around metrics that push forward patient data access, patient care, innovation and competition, costs and efficiencies, and, of course, big data and the learning health system. In the past six months, we have seen immense innovation in the space of artificial intelligence. Our lack of a national health data architecture will hobble us in this internationally competitive field. We need to solve the old problems so we can spend our time and effort on the new challenges being brought by these innovations. Will Falk is an executive-in-residence at Rotman School of Management and a senior fellow at the C.D. Howe Institute. Dr. Trevor Jamieson is a general internist and the chief medical informatics officer at Unity Health. The Hill Times