Connected Care for Canadians Bill
Third Reading--Debate Continued
May 7, 2026
Honourable senators, I want to rise and speak in support of Bill S-5, the connected care for Canadians act.
First, I want to congratulate the Standing Senate Committee on Social Affairs, Science and Technology for its excellent work in studying this bill and for the great speeches yesterday from Senators Kingston, Arnold and Muggli. I was really impressed in committee with the expert witnesses who were invited and felt their concerns were heard by the committee, which was reflected in the committee’s report and work.
I’m not going to be 45 minutes; I will be a lot closer to 5 minutes, which I know you’ll be glad to hear. I want to focus on some key messages from some of the witnesses.
First, I will discuss the risks associated with large, centralized databases of medical records. I’m not a cybersecurity expert, but I’m someone who champions the work of experts, and what I absolutely understand is that they are very much recommending this take place in secure, decentralized systems built on a foundation of open, transparent and internationally recognized interoperable, consensus-based standards. From my standpoint, this is really important. It means putting less of this in regulation and more of the implementation of this bill into standards that stay modern, more agile and allow us to have an interoperable system within our federation and internationally.
An important group that I think will help the federal government in its work in this regard is the Digital Governance Council and the Digital Governance Standards Institute. It’s a not-for-profit, accredited, digital standards organization that works to provide Canadians with confidence in the responsible design, architecture and management of digital technologies, and its members include Health Canada, Canada Health Infoway, the Canadian Institute for Health Information and most of our provinces and territories. I think it will play a very important role in laying the foundation for the next phase of this work in future bills, where we move beyond health technology vendors and start to include the use of information far more widely across our system.
Providing Canadians with access to their personal information will require the use of these technical standards. It’s great that some actually even exist today. I will point to two that the Digital Governance Standards Institute has created and that have been certified by the Standards Council of Canada. The first is the national standard for digital trust and the delivery of health care services, and the second is the technical specification for digital credentials and digital trust services. You can see how both of those would align very much with what is needed in the implementation of this bill.
These consensus-based standards and specifications state minimum requirements for the exchange of health information between systems and provide the basis for implementing a user‑centric, interoperable health network for the delivery of health care services. So it’s fit for purpose. I say this because we need a system with the ability to interchange information to be up and running quickly. If you don’t believe me, just listen to Senator Muggli’s speech again from yesterday. She very passionately and energetically made the case, over and over again, in a way that, I think, will ring true to all of us.
The other thing these standards do is that they provide the technical requirements for testing criteria to support conformity assessments. It’s not just about the management of setting up systems but also the ability to verify their appropriate use over time.
Yesterday, I was glad to see Senator Arnold quote Margot Burnell, who said, “Standards turn good intentions into working systems.” This bill is an actionable step forward toward improving the efficiency and equality of health care in Canada.
I want to recognize the benefits of interoperable health data and the fact that we must move toward having access and the exchange of electronic health information. We must push it toward all individual and institutional providers of health care. An important observation made by the committee was that this is a first step. We must take further steps. Obviously, that will involve the provinces and their health districts, but it’s an important point we have to reach.
Bill S-5 will be implemented successfully, thanks to unambiguous definitions, agile processes and clear obligations grounded in desired outcomes. That requires the clarity that standards will bring to all of this.
The other thing I thought was important was the focus on recommendations for how this system should be designed. Pushing to a decentralized system will go a long way to helping, in the amendment that the committee made to the preamble, to make sure that First Nations’ digital sovereignty is respected. It means that this system will give individuals control over their health data and the ability to share and control how their personal health information — to use the term in the bill — is utilized.
Finally, clause 9 of the bill, importantly, supports the use of consensus-based standards in terms of the implementation of the legislation. That’s very important. Again, this isn’t where we have to have specific regulations in place. We can use consensus-based standards to fast-track regulation development.
I’ll conclude by saying that this is a consequential piece of legislation, and it is important for us to get this process started. It has real potential to meaningfully strengthen Canada’s health care system for patients, providers and communities alike. I look forward to the swift passage of Bill S-5, and I thank Senator Kingston for her great work as well as the Social Affairs Committee for its great work.
Thank you, colleagues.
Honourable senators, I would like to thank Senator Kingston for introducing Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking by health information technology vendors.
I am giving this speech on behalf of Ms. Leona Star, Director of Research, First Nations Health and Social Secretariat of Manitoba; Dr. Stephanie Sinclair, Data Sovereignty Lead, First Nations Health and Social Secretariat of Manitoba; and Ms. Tatenda Okoi, Director of eHealth, First Nations Health and Social Secretariat of Manitoba, all of whom appeared before the Social Affairs Committee.
In their submission, they wrote:
Bill S-5 aims to advance interoperability and prohibit data blocking within Canada’s health system. Bill S-5 presents a critical opportunity to address health inequities within Canada’s health care system by linking datasets that reflect the gaps in the health care provided, as well as the opportunity to upscale interventions that support the well‑being of our families and children. However, the collection, use and interpretation of First Nations, Métis and Inuit data must be led by the First Nations, Métis and Inuit themselves. As First Nations, we have the right to be counted, the right to be seen and the right to govern our own data and information according to our own world view. Adherence to First Nations data sovereignty is a prerequisite to any data and information that Bill S-5 intends to collect or link to advance interoperability of health information.
First Nations data sovereignty is a prerequisite for all proposed Senate bills that impact First Nations directly or indirectly, as proposed laws cannot undermine the rights of First Nations, Métis and Inuit People under section 35 of the Canadian Constitution. As nations, we have witnessed how colonialism has consistently hindered the ability of First Nations to be represented in datasets, as enumeration and data-collection efforts have primarily benefited governments and have upheld colonial systems that prioritize measuring illness and disease containment over assessing the well-being of First Nations.
Within Canada, First Nations’ data has been weaponized, as the enumeration of First Nations people has been largely controlled by the government. Colonial enumeration supports and upholds the laws and interests of the states, while undermining the sovereignty of the First Nations. For example, the Indian status registry has been used to collect data on status Indians defined by the government and colonial policies upheld by the Indian Act. The definition of a status Indian has been used to undermine and overstep First Nations laws of kinship, wahkohtowin, a word that existed in precolonial times, where relatives are reminded of their responsibilities to one another based on their relationships and kinship ties.
As stated by Métis physician and researcher, Dr. J. Smylie:
There are two underlying roots to Canada’s Indigenous health information challenges: the lack of relevant, consistent, and inclusive Indigenous identity indicators in core population health data sets; and the need for meaningful Indigenous leadership and participation in the governance and management of Indigenous health data.
The inability to collect nation-based identifiers for First Nations people within Western systems hinders First Nations’ ability to assert data sovereignty, as the collected data is often utilized in a pan-Indigenous approach that aggregates nations under the term “Indigenous.” This type of data collection and analysis effectively undermines the unique histories and ignores the jurisdictional challenges that each nation, including First Nations, Métis and Inuit Peoples, face in accessing equitable care.
The lack of nation-based identifiers within provincial administrative datasets hinders the ability to measure health inequities across Canada, as it limits health systems’ capacity to deliver culturally appropriate care that addresses the needs and priorities of First Nations as they navigate existing Western health care systems.
The Canadian health care system relies on rigid procedures and administration to control, regulate, and organize patients, which often overlooks the unique needs of distinct populations that require cultural accommodation and responsiveness to the cultural needs of the patients they are responsible for delivering equitable care to. In most cases, the application of Western systems and programs fails to effectively recognize and incorporate culturally safe solutions that address First Nations’ identity, experience, and social needs. As a result, significant gaps are created, leading to poor health outcomes, inequitable care and representation of First Nations peoples in the healthcare system, and the inability of systems to see or address racial inequities in the system.
Data has been used to measure the marginalization and assimilation of First Nations people, creating a deficit narrative when they do not achieve colonial markers of successful assimilation. Walter and Carroll further support that “[b]ecause Indigenous Peoples are lagging behind, the narrative goes, the nation-state must adopt “special policies” to “rehabilitate” them” . . . .
Bill S-5 represents an opportunity to demonstrate how First Nations and the State of Canada can work together to support distinction-based data collection that adheres to First Nations data sovereignty and supports the well-being of children and families of today and the future generation that have yet to come.
Thank you. Kinanâskomitinawow.
