Mining Canada’s Health Data

With our diverse population and universal health-care system, Canada is sitting on a rich — though largely unmined — seam of health data. Data on diagnoses, treatments, procedures and medications. Data on chronic conditions like cancer, diabetes and heart disease. Genetic data, clinical trial data, medical imaging data and so much more.

In recent years, Canada has made progress in digitizing this data, creating the opportunity for it to be used at scale. Unlocked and fully leveraged, this data can deliver step changes in efficiencies in our health systems, maximize the effectiveness of our clinical trials, speed up our drug discovery processes and allow our life sciences sector to fully harness artificial intelligence (AI) technologies.

The potential prize for the health of Canadians and the Canadian economy is transformational, helping us achieve better outcomes for patients while saving an estimated $2.4 billion from provincial and territorial health-care budgets.^[1]

At present, Canada’s approach is falling short.

In the Public Policy Forum’s Canada’s Code Red,^[2] we outlined barriers to data use, including a lack of standardization, issues around interoperability and ownership, and exaggerated privacy concerns. At the heart of this lies a culture of risk aversion, protectionism and an adherence to the status quo.

Elsewhere, competitors are advancing ahead of us in their development of leading health data systems to the benefit of their societies, building on the principles of patient-centricity, data interoperability, strong governance and privacy assurance. Unaddressed, Canada will fall further behind, with Canadians ultimately paying the price for that failure.

In the face of new challenges to our economic security, much recent focus has been given to how Canada can fully tap its natural resources to support growth. This same urgency must now be turned to enabling Canada to exploit its health data resources.

The good news is that the political will for this appears to be building, with a recent ministerial announcement to launch an AI task force and deliver an AI strategy update by the end of the year.^[3] Building the infrastructure to secure digital sovereignty is essential, but if the end game is a society fully harnessing AI to boost growth and improve lives, it is the data that will make it happen, with health data being chief among our assets.

To unleash our health data and realize our ambitions, Canada must have a proper action plan in place. To achieve the level of urgency required, health data must be viewed by policymakers as Canada’s above-ground critical mineral, with time-bound actions required to exploit this as the ultimate no-regrets nation-building project.

Guided by PPF’s Life Sciences Forum^[4] and drawing on widespread consultation with representatives from Canada’s largest pharmaceutical, biotech and medical device companies, public sector bodies, government agencies, sector associations, non-profits, academia and individual experts, this report identifies three goals to be realized if we are to unlock our health data, recommending an urgent new two-year road map to achieve this.

At the provincial and territorial level:

Governments have shown a great deal of enthusiasm recently — if not great follow-through — on removing internal trade barriers. The lack of health data sharing should be similarly seen as an internal barrier that needs to be dismantled. If having trade barriers for goods is viewed as Canada shooting itself in the foot, taking a protectionist approach to health data is akin to Canada shooting itself in both feet. Such an approach makes no sense when there’s nothing material to protect — there are no losers to sharing across jurisdictions, only winners. The Canada Health Transfer is the single largest major federal transfer to provinces and territories; this should be leveraged to mandate the sharing of data in a standardized form.

At the practitioner level:

It is currently too easy for practitioners in Canada to cite privacy concerns as a reason for not sharing data. However, it is not always clear where this rationale exists in legislation, or indeed that individuals are genuinely averse to having their data made available for the purposes of furthering health research.

Privacy must not be used as a trump card in conversations on data accessibility. In practice, this means a move away from the paternalistic approach to how health data is currently controlled, underpinned by the 1992 McInerney v MacDonald Supreme Court ruling on rights to medical records. The ruling found that while the patient retains a fundamental right to access a copy of all information in their medical records, the physician or institution retains ownership of the actual medical file, emphasizing that medical information is held in trust for the patient by the physician or institution.

This relationship requires a fundamental rethink. An individual’s health information should be made readily accessible to them. Other countries have done this via technological solutions: for example, the U.K.’s National Health Service has developed an app that allows patients to readily access the entirety of their own health data, with further options available on how records are shared. Canada must follow suit.

At the individual level:

A key argument put forward for not sharing health data is the lack of social licence. While the social licence for sharing already exists in other countries, it will not fall into our laps in Canada; it must be obtained. Key is public education on how health data can be used, as well as a demonstration of the impact of better sharing. Individuals are sharing personal data every day via the use of websites, apps, loyalty cards and other technologies. This data is often used for marketing and selling. A demonstration of the positive advances that can be made to treatments and diagnoses through sharing health data should be an easy argument to make, and one that has been made elsewhere. Indeed, the existence in Canada of the grassroots movement Patients Like Me,^[5] which has 850,000 contributors, illustrates that this door is already ajar.

Privacy legislation:

In a speech to the All In 2025 conference in Montreal, Canada’s AI and digital innovation minister noted that: “Technology moves at the speed of innovation, but adoption moves at the speed of trust.” Lessons from elsewhere show us that a fit-for-purpose legislative foundation is central to building that trust. Clearly defined regulations around data privacy and measures to promote personal proprietorship are not impediments to data sharing; on the contrary, they create a culture of trust, allowing patients to feel confident and secure sharing their data.

As it stands, Canadian regulations governing the use of patient data are a patchwork of outdated rules not designed for our modern, data-driven world. The federal Personal Information Protection and Electronic Documents Act (PIPEDA), which governs how private sector organizations collect, use and disclose personal information, dates to the year 2000, seven years before smartphone usage was popularized via the launch of the iPhone.

As the minster recognized in his speech, the combination of rapid advances in AI and the vast quantities of data produced by our health-care system demand a modernized and comprehensive health data legal framework. Creating such a framework should be a top priority for policymakers seeking to harness the power of data to promote the health of the Canadian population and the robustness of our economy.  In practice, this means updating measures to reflect the reality of the vast amounts of personal data being created every single day in a world where technology is opening doors we couldn’t have conceived of when the current legislation was produced. For example, legislation should specifically allow the use of personal health data for AI training and validation as well as the creation of synthetic data. The principle of passive consent must also be considered, whereby the default position is that an individual’s anonymized health data may be used unless that individual actively opts out.

Some progress was underway before Parliament was prorogued ahead of the 2025 federal election. The Consumer Privacy Protection Act,^[6] a component of Bill C-27, was intended to replace PIPEDA as the main law governing the private sector’s use of data, while the Artificial Intelligence and Data Act,^[7] also a component of Bill C-27, aimed to create Canada’s first comprehensive framework for regulating AI and data, including in the health-care space. Both pieces of legislation died on the order paper with the dissolution of Parliament, and the promise of a modern, effective and transparent framework regulating the use of personal data has gone unfulfilled.

While not perfect, this legislative history provides current policymakers with a starting point. The creation of a comprehensive health data legal framework must be taken forward as a matter of urgency.

Interoperability:

While Canada has universal health-care systems, they are not connected. Health-care information cannot easily flow across provinces, territories and care settings, leaving our system less efficient, less responsive and contributing to a postal code lottery for patients across Canada, where access to joined-up health care is not a given but is instead dependent on location of services. The federal government has already pledged to create One Canadian Economy^[8] — the impetus must be extended to create One Canadian Health-care System.

There is already recognition of a need to ensure interoperability of data. Canada Health Infoway^[9] is working across governments to develop a pan-Canadian shared interoperability road map, identifying strategic goals and actions for advancing interoperability. A core component of this is standardization of data. In 2020, responding to a call from Canada’s Digital Charter,^[10] the Standards Council of Canada developed a road map for data standardization based on the principles of quality, trust and ethics. The challenge in both instances is that compliance at present is voluntary.

As in the case of privacy regulations, measures were underway to address interoperability issues with legislation before the calling of the 2025 federal election. Bill C-72 (the Connected Care for Canadians Act) sought to remove barriers to interoperability by allowing health-care providers, hospitals and health institutions to securely exchange electronic health information. It also sought to require IT companies providing digital health services in Canada to adopt common standards and allow for protected and secure information exchange across systems.

The aims of the bill should be revived and broadened to cover sharing across provinces, with the interoperability requirements identified by Canada Health Infoway mandated for data producers to follow.

With the right legislative framework and measures to ensure interoperability in place, Canada will have created the regulatory environment required to be a world leader in the utilization of health data. With a rethinking of the relationship between patient and practitioner, along with patients’ trust that their data will be used for the wider benefit of Canadians, we will have achieved the social licence needed to build out the data sets that can fuel our success.

The final step required to fully realize this opportunity is for Canada to develop world-leading approaches to storage, collection, curation and governance of that data in Canada.

Through the provision of funding and the removal of red tape, the federal government has committed to building the next generation of data centres, putting in place the supporting infrastructure to house significant data sets. At present, data is collated on a mass scale through hyperscalers — companies such as Meta, Google, Microsoft or Amazon Web Services — creating massive next-generation data centres. These data centres house millions of servers and enable storage and management of data at the scale required for transformational use via AI.

As these hyperscalers are predominantly non-Canadian entities, the underlying technological infrastructure sits outside our own jurisdictions. Without a viable Canadian option, our data flows out of Canadian hands to be stored in foreign-owned — predominantly U.S. — vaults. And once the data is stored elsewhere, it is very hard to get back. This not only creates security risks but also massively undermines Canadian sovereignty. The U.S. CLOUD Act^[11] gives U.S. law enforcement the power to demand electronic data from U.S.-based technology companies, even if the servers on which that data is stored are situated out of country — essentially exposing the data of Canadian citizens to potential foreign surveillance.

The need for delivery at pace is clear. Consider the September 2025 announcement from Nvidia to invest US$100 billion into OpenAI, with the intention of deploying at least 10 gigawatts of AI data centres — the equivalent of the needs of over eight million households, with the first gigawatt slated to come online as early as the second half of 2026.^[12] Canada is currently losing the race. The urgency in our politicians’ words must be matched by an urgency in delivery.

However, moving forward with the next generation of data centres is only part of the action required for Canada to realize its ambitions. Governments can’t rely on a “build it and they will come” strategy alone. If the infrastructure represents the plumbing, then it is the data that flows through that plumbing that enables us to harness the full potential of AI.

To this end, standardized data must be readily provided as the fuel that feeds these data centre engines. This stage of operation requires ground-up collaboration from the research and practitioner community. To support this, government — directly or through mandating others — has a role in providing leadership, convening and facilitating stakeholders to use, and benefit from, the infrastructure being created.

Specific issues requiring a leadership role include securing consensus on standardization across different stakeholders, along with an agreement on how costs associated with the provision and maintenance of large data sets will be managed. As appropriate, future public funding opportunities could be designed with data-standard and sharing requirements attached, incentivizing buy-in to the new ways of working.

Taking this to the next level, real progress can be made by making our efforts international. Through its presidency of the G7, Canada has the opportunity to broaden its efforts, working with other nations to support common standards, address cross-border issues and invite researchers to benefit from Canada’s data hubs.^[13]

Bringing all of the above together, a leadership role would see Canada going beyond just establishing the right conditions for harnessing its health data to creating one unified, overarching strategy for the collection, storage, curation and governance of health data, positioning itself as a world leader for research, discovery and development, and a destination for the best thinkers and innovators in life sciences.

The opportunities for Canadians and the Canadian economy are transformational. With decisive leadership, the steps to realizing these opportunities are clear and achievable. To achieve our goals and fully mine our health data — unlocking growth and boosting positive outcomes for Canadians — the federal government must:

Within the next 12 months:

• Resurrect and update legislative measures from the last Parliament to create a comprehensive legal framework governing how health data at all levels is shared and used.

While the importance of updated legislation has been recognized, the issue must be made a top priority for legislators, demonstrating that the urgency of the agenda is genuinely understood. Updated legislation must reflect the reality of a society where data is abundant and advances in AI stand to transform the ways in which we live our lives. It will require primary legislation to update the Personal Information Protection and Electronic Documents Act^[14] and supporting legislation to unlock secondary usage, promote open data and enable interoperability. Legislators will not be starting from scratch in this endeavour but can build upon relevant content from Bills C-27 and C-72, as well as a multitude of positive experiences from elsewhere around the globe.

• Initiate Canada’s own Data Saves Lives movement

As a national campaign, this can be co-ordinated federally but led from within provinces and territories, with patient groups at the centre of the movement’s development. To support successful rollout, key performance indicators should be set for engagement levels, along with targets for changes in public attitudes. The existing Federal, Provincial and Territorial Ministers of Health table provides a forum for progress to be tracked and reported back on.

Within the next 18 months:

• Designate an independent arm’s length organization with a nationwide mandate to oversee a transformation in how health data is collected, stored, curated and shared across Canada.

The right legislative framework provides the means for success and social licence provides the impetus. However, to realize success at pace, there needs to be an entity that has responsibility for driving through changes and holding those who are slow to adopt new approaches to account. There are organizations in this space already that may be able to play this role. Reflecting the aims of updated legislation, key priorities would include:

• Designing and upholding national standards for health data collection, collation and management across Canada;
• Working with Canada Health Infoway to secure a unified approach to interoperability across health settings and our 13 provinces and territories;
• Acting as a convenor of the research and practitioner community to support the sharing and usage of Canadian health data for collaborative research.

Within the next 24 months:

• Use the mandate of the Major Projects Office^[15] to build the infrastructure for the creation of a sovereign health data cloud.

Health data sits across multiple settings — hospitals, primary care providers, specialist clinics, acute care settings, academic institutions and more. As the measures are put in place to enable standardization and sharing, we must have a Canadian-owned space for storing and managing this data at scale, otherwise we risk losing it to foreign-owned companies that sit outside our own jurisdictions. The need for this was recognized by the prime minister when he launched the new Major Projects Office, however, a sovereign cloud does not at present appear on the current official projects list. Its current omission is a massive, missed goal.

To unleash the full potential of our health data and reinforce Canadian sovereignty, the federal government must as a matter of urgency use the Major Projects Office to deliver the infrastructure and policy environment required to support home-grown hyperscalers and the creation of a sovereign health data cloud, enabling the storage and sharing of data at scale within Canada.

The barriers to unlocking Canada’s health data that currently exist are self-imposed and artificial. The size of the prize for Canadians in removing these barriers is hard to overstate — a harnessing of AI to deliver transformation in service, drug development and ultimate cost savings that can be the difference maker in Canada achieving its own growth ambitions. The price of missing out isn’t maintaining the status quo, it’s an undermining of our sovereignty and our security — both health and economic. Canada is already falling behind.

There will be resistance from those who choose the status quo, but other countries have blazed the trail. Those who pushed ahead are already reaping the benefits.

The good news is that while our recommendations are ambitious, they are not out of reach. Canada will not be starting from scratch in its efforts to mine its health data. As documented in this paper, the need for updated legislation has been recognized, efforts to enhance interoperability — albeit currently on a voluntary basis — are underway, and Canada has existing assets it can build upon in the shape of a well organized research base, centres of AI and data excellence and existing institutions that support health research funding and data stewardship. The actions are achievable, the prime ingredient missing is urgency.

Unlocking our health data is a prime no-regrets nation-building project, with no losers, only winners. We must start now.

This report was informed by the insights generated by the Public Policy Forum Life Sciences Forum Leadership Table, co-chaired by Mark Lievonen (principal, JML Advisory Services), and Inez Jabalpurala (President and CEO of Public Policy Forum). For more information on the Life Sciences Forum, and the wider work of PPF, please visit www.ppforum.ca. This report is aligned to PPF’s Mission Canada, creating a blueprint for coordinated action to leverage Canada’s economic advantage.

This is the fourth Public Policy Forum report on Canada’s life sciences sector. Our first report The Next One set Canada on a path to better prepare for the next pandemic, which led to the creation of Health Emergency Readiness Canada (HERC). The second report Exposed addressed the need to better develop and manage supply chains that will give Canada the resources to respond to future health emergencies. The third report Canada’s Code Red outlined measures that Canada should implement to ensure the Life Science sector can play a full role in supporting healthy Canadians and boosting economic growth. This report follows those building blocks in the ongoing process of supporting healthy Canadians and bolstering a competitive Canada.