Skip to content

Connected Care for Canadians Bill

Second Reading

March 26, 2026


Honourable senators, they continue:

Bill S-5 needs to include a definition of First Nation Data Sovereignty

Data sovereignty is important as we have always protected our way of life, knowledge, culture, language and connection to land and water. We have kept information and data safe and secure, while also making them accessible to those who need them to make decisions, educate the next generation, and adapt knowledge to the current context.

How will Bill S-5 adhere to First Nations principles of OCAP?

It is important to ensure that First Nation Data Sovereignty is considered in Bill S-5 to ensure that First Nations have ownership, access, control and possession over their health care data, benefit from the interoperable data, and that First Nations have free, prior and informed consent for the use of this data at the individual and collective level. It is also necessary to ensure that the unique history, culture and strengths of the First Nation are reflected in the data collected. First Nations will use this data to share their truths, and need data that accurately captures the full picture, including the current context and realities. Without access to reliable data, it is challenging to clearly identify health inequalities, measure the extent, track developments, and, most importantly, address the system’s shortcomings to deliver equitable care. This data fragmentation is also reflected in access to care. Access issues disproportionately impact First Nations people, which are compounded by a lack of access to data. Health information technology vendors need to understand and be trained on First Nation data sovereignty to work alongside First Nations to develop the data standards.

How will Bill S-5 protect First Nations data?

First Nations have been working to create a network of First Nation data centres across Canada, governed by First Nations, to ensure timely access to usable, reliable First Nation data. These centres need to ensure the safety and security of First Nation data. First Nations have concerns about data being sold to third parties without consent or knowledge, which is why First Nations must provide oversight and governance over First Nations data, including the data that is being proposed through Bill C-5.

Manitoba First Nations has one of the longest-standing information governance models across Canada, called the Health Information Research Governance Committee (HIRGC), established in the 1990s to oversee regional research. The committee is appointed by First Nation leaders and represents language groups, geographic locations, tribal councils, and regional First Nation organizations, as well as youth, knowledge keepers, and academics. HIRGC reviews applications to access regional First Nation data for research, surveillance and emergency response based on the following principles, which have been endorsed by the 63 First Nations through resolution. (1) Free prior informed consent at the individual and collective level, (2) First Nation ethics which allow for the uniqueness of each community, (3) OCAP, Ownership, Control, Access, and Possession of data, and (4) Benefit to First Nations. This has proven an effective model to ensure First Nations leadership, the provincial and federal governments have access to data to respond to health emergencies such as COVID-19 and wildfires.

Nation-based strengths, looking at what is working in our community, what are the things that make us well, in accordance with our own definitions of wellness. Also, identifying those interruptions to our wellness that have played out over time. Need to account for culture, language, connection to land and waters. This can also include access to traditional foods and medicines, ceremonies, and community connection. This data is important to First Nation communities and for future generations.

Equity – Include wording for vendors to ensure connectivity issues do not exclude communities

Connectivity concerns to ensure that all Canadians are included, regardless of where they live. There are still First Nations communities without access to reliable, secure internet services. Let’s ensure our country is connected and that the care we receive does not depend on where it is provided, but that all health care providers and patients have access to the health information they need to provide the best possible care. This also includes information collected in First Nations at health centers and nursing stations, which is housed with Indigenous Services Canada and the First Nations Inuit Health.

Thank you.

Hon. Michael L. MacDonald [ + ]

Honourable senators, I rise today as critic of Bill S-5, An Act respecting interoperability of health information technology and to prohibit data blocking by health information technology vendors, also known as the connected care for Canadians act.

The bill aims to establish a federal framework requiring that health information technology used in participating provinces and territories be interoperable as well as to prohibit data blocking by health information technology vendors.

In simple terms, the goal is to help ensure that electronic health information is available where and when it is needed. By requiring health information technologies be interoperable and by addressing data blocking, the bill aims to support the ability of health systems to share patient information appropriately.

First, allow me to briefly situate where Canada stands today. Compared to other jurisdictions, many have already moved from broad aspirations to more detailed and enforceable frameworks. In the United States, information blocking is defined in law and backed by potentially significant penalties for health IT developers. In Europe, the emerging European Health Data Space establishes requirements for interoperability, security and the use of electronic health data. In England, interoperability obligations are built directly into contractual arrangements with system providers.

While the objective of interoperable health information systems in Canada is not new, Canada has struggled to make it a reality. For more than two decades, governments, auditors and experts have warned that fragmented health information systems prevent patient data from moving efficiently across systems and jurisdictions. As early as 2001, the federal government created Canada Health Infoway to accelerate the development of electronic health records. Nearly a decade later, the Auditor General of Canada examined federal investments in digital health and noted that progress toward interoperable records remained uneven and difficult to measure.

Our own Standing Senate Committee on Social Affairs, Science and Technology addressed this issue directly in its 2012 report entitled Time for Transformative Change: A Review of the 2004 Health Accord. Upon request by the Minister of Health at the time, the committee initiated a parliamentary review of the 10-year plan to strengthen health care. The committee observed that patient health information comes from multiple sources — physicians, hospitals, laboratories and pharmacists — and in order to share that information across regions and jurisdictions, a common and interoperable network must be developed.

The committee proposed 43 recommendations in total, 4 of which concerned interoperability. These included continued federal investment in Canada Health Infoway, the establishment of targets for interoperable electronic health records, increased adoption of electronic medical records by physicians and efforts to address differences in privacy frameworks across jurisdictions.

Of note, colleagues, during the First Session of the Forty-first Parliament, over two years, the Social Affairs Committee released five special study reports, three of which were health related. It’s another example of the strength of our committee work to take a step back from legislation and really undertake in‑depth studies on various policy questions.

More recently, during the COVID-19 pandemic, the Auditor General again highlighted the consequences of fragmented health data systems, noting challenges in obtaining consistent and timely information across jurisdictions.

In other words, the need for interoperable health information systems has been recognized for many years. However, supporting that objective does not relieve Parliament of its responsibility to examine the framework carefully, which brings us to Bill S-5.

First and foremost, when dealing with personal information, such as electronic health information, maintaining public trust remains the most important consideration. At all times, the protection of patients’ privacy must be prioritized. Increased data sharing brings inherent risks that must be carefully managed. As health information moves more easily across systems and jurisdictions, the potential for unauthorized access or breaches also increases. These risks underscore the importance of ensuring that strong safeguards are in place so that Canadians can have confidence in how their personal health information is protected.

As it stands right now, Bill S-5 remains largely undefined. The mechanisms used to achieve the objective will be determined by the Governor-in-Council through regulations. Since we are dealing with health, which is a provincial responsibility, it raises some jurisdictional considerations. It also raises two concerns that are interconnected: the implementation of the bill through regulations and the wide regulatory powers delegated by Parliament.

First, there is a jurisdictional dimension to consider. Health care delivery is primarily within provincial and territorial jurisdiction. While some provinces have taken important steps to improve the exchange of health information within their own systems, these efforts remain uneven across the country. For example, jurisdictions such as Ontario have developed electronic health record systems that allow providers to access patient information more easily, and others have implemented tools that improve access to data within the province. However, these approaches are largely confined to their respective jurisdictions and do not establish a consistent or enforceable framework across the country. Canada continues to rely upon a patchwork of systems and approaches, and Bill S-5 represents an attempt to move toward a more coherent and consistent national framework.

Whether within a province or across jurisdictions, the underlying challenge remains the same: ensuring systems can communicate effectively so that information is available when and where it is needed.

Bill S-5 attempts to respect jurisdictions by operating as a conditional framework, allowing federal requirements to apply where provinces or territories do not have measures that are substantially similar or stronger, while leaving space for jurisdictions that do. That approach may provide flexibility, but it also raises questions that the committee may wish to examine, particularly around how the concept of “substantially similar” will be defined and applied in practice and how it may be perceived by provinces and territories.

In that sense, Bill S-5 establishes an enabling framework — the strength and effectiveness of which will ultimately depend upon how it is implemented through regulation.

The bill does not, on its own, establish the full substance of that framework. Much of its effect will depend upon future regulations. Clause 8 provides broad authority to establish standards, define data-blocking practices, create compliance mechanisms and set out enforcement tools. The coming into force of the act is also left to be determined at a later date by the Governor-in-Council.

Implementation will take time. Health systems across the country operate with different infrastructures and capacities. It will take time for regulations to be developed and then implemented. For example, Bill S-5 places the focus on the role of vendors and seeks to address interoperability through requirements imposed upon systems, including prohibiting data blocking. It will be useful to better understand how those provisions would operate in practice, particularly in a complex and evolving technological environment.

This raises practical questions about how these requirements will be applied and enforced. Vendors operate across multiple jurisdictions and systems, often within existing contracts and infrastructures. The committee may wish to examine how clearly expectations will be defined and how this approach toward vendors brings Canada closer to its objective of interoperability.

Stakeholders who support the objective of interoperability have also emphasized the importance of getting the implementation right. Organizations such as the Canadian Medical Association and physician groups such as the College of Family Physicians of Canada have long called for progress in this area.

Finally, colleagues, this is the challenge with a bill like Bill S-5: When so much depends upon strong and timely regulations, our work to evaluate the bill is limited. At the end of the day, when we adopt legislation of this nature, we are not only approving its objective; we are also granting authority to the executive to give it practical effect. In doing so, Parliament sets the framework while delegating authority to the executive to determine many of the operational details through regulation.

While Parliament sets and approves the framework in the bill, Bill S-5 also gives the Governor-in-Council authority under clause 8 to amend, among many things, clause 2 definitions and to determine many of the operational details through regulation. For whatever we agree upon for a definition in clause 2, it can just as easily be amended by the executive without coming back to Parliament.

That raises an important question for us as legislators: What level of detail should properly be set by Parliament, and what can appropriately be left to regulations? For example, the bill allows for administrative monetary penalties but does not set out their amounts in the statute. One might ask whether certain core elements, such as the scale of penalties, could have been defined more clearly in the legislation, rather than being left entirely to future regulations.

While it is both necessary and appropriate for the executive to have a degree of flexibility, it is equally important that Parliament ensure that the legislative framework establishes clear parameters. Our role, therefore, is to strike the right balance: to provide sufficient authority for implementation, while maintaining appropriate guidance and oversight over how that authority is exercised and applied.

From a practical perspective, we are now in March 2026. How long before the government proposes clear and robust regulations? What technological challenges will vendors face in meeting those requirements? How much time will provinces and territories need to adapt their systems accordingly? These are practical questions that will ultimately determine whether this bill delivers on its promise.

Bill S-5 attempts to address a real and long-standing challenge in Canada’s health system: enabling systems to better communicate so that electronic health information is available where and when it is needed and, hopefully, to reduce the patchwork across the country. That is an objective I support as long as it remains patient-centred, protecting their privacy while respecting provincial and territorial governments’ primary role in health system management and service delivery.

For this bill to move from aspiration to practical change for Canadians, it will depend on the timely development of strong regulations and their effective implementation. I look forward to our committee’s study of Bill S-5 so light can hopefully be shed on how the government intends to approach the regulations and what the expectations are from all parties involved. Thank you.

The Hon. the Speaker [ + ]

Are senators ready for the question?

The Hon. the Speaker [ + ]

Is it your pleasure, honourable senators, to adopt the motion?

Hon. Senators: Agreed.

(Motion agreed to and bill read second time.)

Back to top