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\nIntroduction\n<\/p>\n
With our diverse population and universal health-care system, Canada is sitting on a rich \u2014 though largely unmined \u2014 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.<\/p>\n
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.<\/p>\n
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<\/a> from provincial and territorial health-care budgets.<\/p>\n At present, Canada\u2019s approach is falling short.<\/p>\n In the Public Policy Forum\u2019s Canada\u2019s Code Red<\/a>, 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.<\/p>\n 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.<\/p>\n 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.<\/p>\n The good news is that the political will for this appears to be building, with a recent ministerial announcement<\/a> to launch an AI task force and deliver an AI strategy update by the end of the year. 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.<\/p>\n 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\u2019s above-ground critical mineral, with time-bound actions required to exploit this as the ultimate no-regrets nation-building project.<\/p>\n Guided by PPF\u2019s Life Sciences Forum<\/a> and drawing on widespread consultation with representatives from Canada\u2019s 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.<\/p>\n France\u2019s National Health Data System (SNDS) is a centralized and comprehensive national database of patient-owned and government-administered health data, enabling medical and policy research for the common good. The SNDS draws individual data from three main sources \u2014 the national claims database, the national hospital discharge database and the national causes of death register \u2014 and is managed by the National Fund for Health Insurance and the Health Data Hub.<\/p>\n \nGoal 1: Gain the licence to share data\n<\/p>\n At the provincial and territorial level:<\/p>\n Governments have shown a great deal of enthusiasm recently \u2014 if not great follow-through \u2014 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\u2019s nothing material to protect \u2014 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.<\/p>\n At the practitioner level: <\/p>\n 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.<\/p>\n 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.<\/p>\n This relationship requires a fundamental rethink. An individual\u2019s health information should be made readily accessible to them. Other countries have done this via technological solutions: for example, the U.K.\u2019s 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.<\/p>\n In 2003, the U.K. government sought to build public awareness and gain trust for national health data use by enacting the Five Safes framework<\/a>. Enshrined in the National Data Guardian Act in 2018, the Safes \u2014 projects, people, data, settings, outputs \u2014 enables government access to sensitive health data while upholding patient privacy and security. Administered by the Office for National Statistics, health data initiatives are only approved if they can meet the following criteria of appropriate project use: trustworthiness of users; safety of data; secure access; and results being safe to release to the public. These parameters enabled greater transparency for the public on use of their health data by the government and, as a result, saw greater buy-in and social license for the national health data system.<\/p>\n At the individual level:<\/p>\n 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<\/a>, which has 850,000 contributors, illustrates that this door is already ajar.<\/p>\n In the EU, the Data Saves Lives<\/a> movement, led by the European Patients\u2019 Forum and the European Institute for Innovation through Health Data, has demonstrated that when the benefits are clearly explained to patients \u2014 for example, to support the development of new treatments or to enable faster diagnoses \u2014 there is broad support for health data to be shared and used more widely.<\/p>\n As the initiative states: \u201cSocieties that can reliably and responsibly record and share the health data of its citizens across research communities will advance the understanding of diseases, allow new medicines to be developed more quickly, and empower individuals to benefit others with the same or other medical conditions.\u201d\u00a0<\/p>\n \nGoal 2: Create a comprehensive health data legal framework\n<\/p>\n Privacy legislation:<\/p>\n In a speech to the All In 2025 conference in Montreal, Canada\u2019s AI and digital innovation minister noted that: \u201cTechnology moves at the speed of innovation, but adoption moves at the speed of trust.\u201d 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.<\/p>\n 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.<\/p>\n In the EU, the General Data Protection Regulation (GDPR) of 2018 grants individuals the right to access, rectify, port or erase their personal data, with the principles within the GDPR applying to the public and private sector alike. It also places obligations on organizations to obtain consent, ensure safeguards are in place with regards to data processing and report data breaches.\u00a0The presence of more relevant, defined privacy regulations enables businesses to act within those clear parameters set. It has also enabled the creation of a more comprehensive legal framework, with secondary and supporting legislation to further underpin access to health data \u2014 for example, the 2019 Open Data Directive, the 2024 Interoperable Europe Act and the 2025 European Health Data Space regulations.<\/p>\n 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.\u00a0 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\u2019t 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\u2019s anonymized health data may be used unless that individual actively opts out.<\/p>\n Some progress was underway before Parliament was prorogued ahead of the 2025 federal election. The Consumer Privacy Protection Act<\/a>, a component of Bill C-27, was intended to replace PIPEDA as the main law governing the private sector\u2019s use of data, while the Artificial Intelligence and Data Act<\/a>, also a component of Bill C-27, aimed to create Canada\u2019s 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.<\/p>\n 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.<\/p>\n In Japan, the Next-Generation Medical Infrastructure Law, passed in 2017, establishes the legal framework for the use of anonymized health data for research while upholding personal privacy rights. Japanese society has deeply entrenched views of personal privacy and this act provides explicit consent on the basis of strict identifiers for any non-anonymized health data to be shared with third parties. The act also accelerates the Medical Digital Transformation (DX) Promotion Plan \u2014 enabling adoption of cloud-based electronic medical records and enhancing interoperability, digital portability and security across health-care institutions.<\/p>\n Interoperability:<\/p>\n 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.\u00a0The federal government has already pledged to create One Canadian Economy<\/a> \u2014 the impetus must be extended to create One Canadian Health-care System.<\/p>\n There is already recognition of a need to ensure interoperability of data. Canada Health Infoway<\/a> 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\u2019s Digital Charter<\/a>, 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.<\/p>\n 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.<\/p>\n 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.<\/p>\n In Denmark, a national decentralized electronic health record was implemented by linking local community health data systems. It was rooted in data interoperability, where community health data registries were leveraged to provide patient-owned and managed health data. Stored at local biobanks and the National Genome Center, the health data used national identifiers to ensure seamless linkage across data sets.<\/p>\n The Danish Health Data Authority<\/a> routinely provides citizens with top-tier digital health innovation buttressed by consistent surveys of public attitudes toward health data reuse.<\/p>\n \nGoal 3: Develop world-leading approaches to storage, collection, curation and governance of health data\n<\/p>\n 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\u2019 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.<\/p>\n 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.<\/p>\n 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 \u2014 companies such as Meta, Google, Microsoft or Amazon Web Services \u2014 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.<\/p>\n 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 \u2014 predominantly U.S. \u2014 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<\/a> 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 \u2014 essentially exposing the data of Canadian citizens to potential foreign surveillance.<\/p>\n The need for delivery at pace is clear. Consider the September 2025 announcement from Nvidia<\/a> to invest US$100 billion into OpenAI, with the intention of deploying at least 10 gigawatts of AI data centres \u2014 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. Canada is currently losing the race. The urgency in our politicians\u2019 words must be matched by an urgency in delivery.<\/p>\n 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\u2019t rely on a \u201cbuild it and they will come\u201d 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.<\/p>\n 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 \u2014 directly or through mandating others \u2014 has a role in providing leadership, convening and facilitating stakeholders to use, and benefit from, the infrastructure being created.<\/p>\n 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.<\/p>\n 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<\/a> to broaden its efforts, working with other nations to support common standards, address cross-border issues and invite researchers to benefit from Canada\u2019s data hubs.<\/p>\n 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.<\/p>\n \nA two-year road map to the ultimate nation-building project\n<\/p>\n 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 \u2014 unlocking growth and boosting positive outcomes for Canadians \u2014 the federal government must:<\/p>\n Within the next 12 months:<\/p>\n 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.<\/p>\n 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<\/a> 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.<\/p>\n Initiate Canada\u2019s own Data Saves Lives movement<\/p>\n 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\u2019s 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.<\/p>\n Within the next 18 months:<\/p>\n Designate an independent arm\u2019s length organization with a nationwide mandate to oversee a transformation in how health data is collected, stored, curated and shared across Canada.<\/p>\n 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:<\/p>\n Designing and upholding national standards for health data collection, collation and management across Canada; Within the next 24 months:<\/p>\n
\nWorking with Canada Health Infoway to secure a unified approach to interoperability across health settings and our 13 provinces and territories;
\nActing as a convenor of the research and practitioner community to support the sharing and usage of Canadian health data for collaborative research.<\/p>\n