Connected Care for Canadians Bill

Honourable senators, we live in a world in which your phone can unlock your car but your cardiologist can’t access your heart health data, even when you want them to. For this and many other reasons I will mention, I want to thank Senator Kingston for her sponsorship of Bill S-5, the connected care for Canadians act.

I am thrilled to speak to this bill because it is a critical piece of legislation intended to address the fragmentation of health data across our country. It reflects an understanding of the need to prioritize legislation that will benefit the health of Canadians and the health of our economy.

Bill S-5 mandates that vendors of health technology implement pan-Canadian interoperability standards and prohibits them from blocking access to data. This is very similar to a bill from the last Parliament, Bill C-294, which Jeremy Patzer in the House of Commons sponsored and which was an excellent move in this direction. This is an important one, very specifically around health data.

This fragmentation is problematic because it results in health data being siloed and scattered across health service providers who use incompatible systems and devices. It blocks access to data, limiting access to personal health information that could be used to continuously improve our health care system, ultimately creating opportunities for patients, health care professionals, provider organizations and — dear to my heart — Canada’s incredible innovators. Medical equipment manufacturers who build closed ecosystems by default are creating walled gardens of data and, consequently, data monopolies.

Further, access to disaggregated data sets is limited, which is an enormous loss for Canada because these are hidden gems that can help to identify underserved populations and highlight opportunities for improvement.

Bill S-5 seeks to improve patient safety, reduce administrative burdens for clinicians and stimulate digital health innovation by facilitating the seamless and secure exchange of electronic health information.

Why is the health information of Canadians valued globally? It is important to note that we are very special in that regard because the comprehensive and complete nature of Canada’s universal, single-payer health system means that our data captures nearly the entire population, while many other countries have fragmented private systems that limit full care to insured and high-income groups. The fact that we have a single-payer system across the country makes our health data even more valuable.

It’s longitudinal. Provinces have been collecting health records for decades, creating data trails that allow researchers to track health outcomes, disease progression and the effects of interventions over lifetimes, something rare and enormously useful in medical research.

With respect to population diversity, Canada’s large and diverse population makes its health data valuable for studying how genetics, environment, social determinants and other issues interact across and within ethnic and cultural groups. I heard Senator Senior ask a question of Minister Michel yesterday on that specific issue. It is an important one.

Further, in terms of trusted data governance, though there is no question that PIPEDA is out of date and desperately in need of an update, Canada is seen as a stable rule-of-law jurisdiction with established privacy frameworks, making our data more trusted by international research partners and companies compared to data from weaker jurisdictions.

Canadian health data is attractive not just to academic researchers but also pharmaceutical companies, medical device firms, insurers and health AI companies. That is why we must address urgent policy questions around consent, data sovereignty, commercialization and whether and how health data is allowed to be exported.

What do I mean when I speak about the current state of health data fragmentation? Canada’s health data system is characterized by silos and technological barriers. Let me provide you with some data points to drive this home.

Despite 95% of physicians using electronic data systems, a lack of connectivity has resulted in paper and fax referrals remaining common to this day. In terms of patient access, only 39% of Canadians have access to their own electronic health information. Only 29% of physicians have exchanged patient records with practices outside their own. That means we’re not getting that data sharing that is so essential to collaboration in a field where we have so many specialists across the entire spectrum of our needs.

A frightening 44% of physicians report experiencing burnout, often linked to the massive administrative burdens that we are placing on health care service providers. Only 7% of providers have adopted the use of AI in their practice. I’m going to provide some examples of where functional AI can be really valuable in health care.

In addition, given Canada’s vast geography, improved connectivity and access to electronic personal health data are essential if we want to promote equity for Canadians in remote, underserved and vulnerable communities.

Specifically, Bill S-5 serves as a federal backstop, applying only in jurisdictions that lack substantially similar requirements. It targets health IT vendors. These are the corporations or individuals licensing or selling digital health solutions. Bill S-5 does not target health care providers or patients.

The bill focuses on protecting electronic health information, which encompasses electronic personal health information, regardless of whether it has been de-identified. The definition section of the bill defines “personal health information” as information concerning an individual’s physical or mental health, details regarding health services provided to that individual, data concerning the donation of body parts or substances for testing derived from them and information collected incidentally during the provision of health services. The bill establishes mandatory interoperability standards for vendors and prohibits data-blocking practices.

Under clause 6, vendors will be prohibited from delaying, obstructing or degrading data access or exchange. That is what is happening today. That is what our Canadian researchers, innovators, physicians and patients are dealing with. The standards will be prescribed nationally.

Bill S-5 will operate within the bounds of federal, provincial and territorial privacy laws. The bill will also give regulators the power of enforcement to amend definitions, specify technical interoperability standards and establish an administrative monetary policy regime to enforce compliance while developing a complaint and investigation process.

That agility is really important in order for us to make progress in this area, and that can be done as we learn.

Lastly, in clause 9, Bill S-5 allows for “incorporation by reference,” which means allowing for regulations to update automatically when technical standards change, providing the flexibility and agility needed in this rapidly evolving technology sector.

That is something we need across government: more incorporation of industry voluntary standards by reference. That’s on the cutting edge of modernizing our regulatory regimes and making them more agile.

What opportunities will be created? Colleagues, it is estimated that connected digital health systems could save Canada up to $4 billion annually. I found this number to be quite small, actually, because it’s only 1% of Canada’s total health care expenditures, which were expected to total about $400 billion last year.

However, the initial savings are only one of several benefits. We cannot begin to predict the magnitude of solutions and benefits that will be created once Canada’s incredible innovators are finally provided with the opportunity to address our biggest and most pervasive challenges.

I say this, not based on faith, but because of the years I’ve had the benefit of seeing astonishingly innovative solutions to pervasive problems that Canadian innovators can create and scale.

Just earlier this year, I had the privilege of meeting with about a dozen incredible Canadian health technology companies as part of the INOVAIT network. INOVAIT is Canada’s national network for image-guided therapy and artificial intelligence, or AI. Established in 2020, INOVAIT is supported by the Strategic Response Fund and is hosted by the Sunnybrook Research Institute in Toronto. Their member companies made it clear that adopting Bill S-5 would have tremendous benefits.

I want to give you four examples of companies that I got to know when I visited that session about a month ago.

In terms of Canadian-based AI, I spoke to practising radiologists who were co-founders of 16 BIT, a Toronto-based company. They routinely use captured X-rays to opportunistically identify patients who are at risk of osteoporosis. This has resulted in early identification and treatment that have helped over 500,000 Canadians at a very early stage.

They take X-rays that you have already had for whatever purposes, and they review them to see if there are signs of osteoporosis. The beauty of this work is that it provides early identification that may not have been triggered by symptoms because osteoporosis cannot be reversed, but the decline can be slowed. The earlier it is identified, the better. This is a really important example of how we can use our data to improve patient health and reduce the cost of health care.

16 BIT points out that vendors “hold data hostage” and implement integration costs and other access fees that “effectively put a tax on innovation.”

They point out that Bill S-5 would allow companies to “compete based on the quality of [their] AI” and their technology “rather than the depth of [their] pockets.” I think that sums it up really well. Let’s give Canadian innovators a chance to use our data to help Canadians. These innovators have dramatically helped to improve patient care.

I want to talk about MIMOSA Diagnostics in Halifax. We all like mimosas, but this is a little different. This company was developed by a Halifax-based plastic surgeon. Her technology identified the risk of bed sores below the surface of the skin, enabling targeted, preventative efforts that deliver profound improvements to patient outcomes along with reductions in the cost of patient care.

She offered the opinion that Bill S-5 will lower “. . . the barrier to entry, allowing homegrown Canadian companies to integrate, scale, and compete globally.”

MIMOSA Diagnostics indicated that interoperability will ensure “. . . that a patient’s health data travels as fast as their diagnosis, regardless of where they live.”

The benefits of innovation will help push all organizations to accurately structure clean data. Toronto-based Altis Labs said that “. . . structural cleanliness [of data] is the bedrock of trustworthy AI.”

“Garbage in, garbage out” has always been the saying around technology, and this is a way to really drive that good quality data into the system — good quality Canadian data that provides benefits globally, because of, as I said, the complete and comprehensive nature of our data.

They go on to say that requiring “. . . health IT vendors to adopt common standards will significantly improve the depth and connectivity . . .” of data and help ensure that “. . . data flows at the pace of innovation.”

Halifax-based Sound Blade Medical believes that Bill S-5 will “. . . accelerate development, improve model robustness, and limit barriers to regulatory approval.”

Lastly, we must keep Canadian innovations Canadian. This is such an important thing. We create the best ideas. We build the best early-stage companies, but just as they are starting to race ahead, unfortunately, they leave the country because we don’t have the procurement, and we don’t have the capital to help them to grow. All the benefits, then, leave the country and are realized by others. This will provide some real help on the way.

A few weeks ago, I referenced CAN Health Network in a senator’s statement, specifically relating to their support for Virtual Hallway, which reduces the need for family physician referrals to specialists. Virtual Hallway is a Halifax-based company that dramatically improves communication between primary care physicians and specialists, and their platform now includes more than 10,000 physicians, and referrals to specialists have dropped by 84%.

CAN Health is another nationally funded initiative that can introduce and scale made-in-Canada solutions and benefit from the existence of Bill S-5.

I also wanted to point out that, just last weekend in the Toronto Star, a university health network team identified that the use of our smart watches — Apple watches — can predict heart failure, a full week before patients land in the hospital. This is a dramatic change. Rather than at the moment of crisis, you can actually receive the care you need based on the evidence that you are walking around with every day. Again, health data, interoperability and the ability to access this data are massively important.

Like virtually all legislation that we review, there are concerns that would very much benefit from our committee’s evaluation of this bill, and these include the following two that I will cite: First, what existing laws may prohibit access, use and exchange of personal health information?

I want to consider Ontario’s 20-year-old Personal Health Information Protection Act, or PHIPA. I encourage the committee to look at the responsibilities of what they call a “health information custodian” under PHIPA. For those of you who receive care in Ontario, there is a very long list of legal gatekeepers to your health data. Bill S-5, section 5(2)(a), explicitly defers to provincial statutes the very laws that may currently prevent health information exchange.

I’m sure that this can be managed, but it is important for us to understand whether factors like this have been considered when it comes to the implementation of Bill S-5, if it does, in fact, become law — and I hope it does.

According to Bill S-5, health information technology is only interoperable if it:

. . . allows the user to easily, completely and securely access and use all electronic health information and exchange all electronic health information with other health information technologies, unless any applicable federal, provincial or territorial law on the protection of personal health information prohibits that access, use and exchange;

That is where the challenge may arise.

As an aside, I wish our federal political parties had been working together to create a unified exclusive privacy regime to oversee our personal health information. It would have been great if they had been working on that, rather than on how they handle their own political party data, but I digress.

We need to ensure that issues like those in PHIPA define “health information custodian” very seriously because of the issue of liability. If there is no legal right and responsibility for an organization to share personal health information, and that’s not exceedingly clear, then that right will not be exercised. The liability concerns are simply too great.

There is some good news in this regard. Division 23 of Part 5 of Bill C-15, as you heard me speak about earlier, finally grants Canadians data mobility rights once these rights become law under the Personal Information Protection and Electronic Documents Act, or PIPEDA, and the bureaucrats — as I said — have confirmed that they intend to support the application of these rights in all fields where appropriate data sharing safeguards are in place. There is a real issue for our committee study to look into there.

The second question I would love for them to look into is this: Does Bill S-5 consider the most up-to-date approaches to protect Canadians from cybersecurity breaches? We have all seen and felt the effects of the large cybersecurity breaches of health care data that have occurred across Canada, including ones that literally shut down the delivery of health care services in some regions.

We need to be concerned about the possibility that Bill S-5 might create even larger, more centralized databases that are even more connected with the possibility of being even more vulnerable.

There are solutions to this problem. I am far from an expert in this regard. For example, the release of party platforms during 2025 finally delivered an all-party consensus on the use of digital credentials and decentralized identifiers. Stronger, non‑mandatory identity and information controls in the hands of users would give them the ability to log in to access and share their personal information using cryptographic keys that they personally hold, not credentials that an institution issues to them.

I want to thank my parliamentary colleagues and the Conservative Party of Canada for this important change to their platform.

To ensure that Canadians have robust cybersecurity protections, we need to consider the need for further legislation. We’re hearing rumours and rumblings, Senator McNair, that Bill C-8 will emerge in our chamber any day now, and thank goodness for that. We’ve received it? Hallelujah. It is the first of a whole lot of work we need to do on cybersecurity. I am very happy to hear that.

To conclude, Bill S-5 will benefit from being critically examined at committee. I have only asked two questions — what existing laws may prohibit access, use and exchange of personal health information, and does Bill S-5 take into consideration the most up-to-date approaches to protect Canadians from cybersecurity breaches? — but there most certainly are more.

Colleagues, health data, like all other data, should be controlled by individuals who create it. You should be able to choose if you share your health data with a specific medical practitioner for a specific purpose and be able to easily and securely port this data anywhere and to any device you choose.

It is fabulous that the content in Bill S-5 relates to health data, but we also urgently need to modernize our general consumer data laws, like PIPEDA, and our public data laws, like the Privacy Act. This government is moving in exactly the right direction with this bill, and I look forward to supporting this and further legislation in this direction. Thank you, colleagues.

Would Senator Deacon take a quick question?

With trepidation.

Thank you, Senator Deacon. In your speech, I noted that you said that interoperable health records could result in $4 billion annually in savings. Do you have any details on where those savings would come from, or could you point me to the source so that I can find out the details?

I will absolutely point you to the source — not particularly at this second — but it was the only data I could find where a study had been done. For me, the number did not resonate in any way, shape or form because I can see tremendous benefits and savings with a reduction in the duplication of tests. There are a number of ways in which immediately you can intuitively see benefits. I don’t know that there is a good number out there, but I will share what I have and look forward to your thoughts and further discussion. Thank you.

Honourable senators, I rise today to speak to Bill S-5, the Connected Care for Canadians Act, in co-operation with Senator Mary Jane McCallum, on behalf of the First Nations Health and Social Secretariat of Manitoba.

This bill represents an important opportunity to improve how health information is managed in this country, but it also raises deep concerns, particularly for First Nations People in Manitoba whose data has been misused, mishandled or simply overlooked for generations. This bill focuses on interoperability, data blocking, vendor accountability and the modernization of health information systems. These goals are worthy, but I have learned from the First Nations Health and Social Secretariat of Manitoba that none of these goals can be met without a distinctions-based approach that respects First Nations’ data sovereignty and the complex realities of utilizing digital health systems in First Nations in Manitoba.

Interoperability, senators, has been a promise made many times before, one that has routinely fallen short in First Nations communities.

Today, I am honoured to be the conveyor of this information from the First Nations Health and Social Secretariat of Manitoba: Attempts at interoperability have failed because systems were never built with First Nations ownership, First Nations connectivity or governance in mind. Communities cannot benefit from systems they cannot access, especially when connectivity in northern and remote regions remains unreliable.

A significant advancement in this bill is the requirement for vendor accountability. Historically, vendors have operated without the responsibility of ensuring that their systems connect to others. This has created monopolies over First Nations’ health data that limit access, delay care and prevent First Nations from exercising authority over their own information. Ensuring vendors are held accountable is not merely a technical matter; it is an ethical one.

Bill S-5 must first define how interoperability will take place. Operating without a standard kit or format for data creates significant risks to maliciously subvert or frustrate recipients of the data.

Further, an exploratory committee that includes First Nations expert representation must be struck to determine what standard would be used between health care vendors, and may I suggest that this organization would make an excellent witness for committee.

The bill must prescribe clear and enforceable timelines for data transfer so that information is not left in a perpetual state of transit, where it becomes unusable to those who need it most. I report to senators that the First Nations Health and Social Secretariat of Manitoba has serious concerns around data misuse, particularly by third-party vendors who have been known to sell or share First Nations’ health information with external bodies. This bill must be strengthened to ensure that such actions are explicitly prohibited, monitored and penalized.

Non-profit facilities have rules and guiding principles as to how to use their patients’ data, and forcing the transmission to for-profit centres could be mandating the wholesale monetization of peoples’ health care data without an avenue of disclosure over what will happen once the transfer completes. For vendors that operate in different jurisdictions, this bill doesn’t provide direction or stipulate if the originating jurisdiction should have priority. The risks of patient data monetization overshadowing patient care must be meaningfully mitigated.

Honourable colleagues, any discussion about health data must recognize the centrality of the First Nations principles of ownership, control, access and possession, or OCAP. The First Nations Health and Social Secretariat of Manitoba reminded us that First Nations’ data sovereignty is not an aspiration; it is a living practice.

First Nations-led data lodges are being developed across the country to ensure communities can repatriate, govern and use their own health data. These efforts honour jurisdiction, uphold inherent rights and improve health outcomes.

In respect of OCAP and data governance principles, the First Nations Health and Social Secretariat of Manitoba prioritizes digital health software solution systems and infrastructure that operate within the borders of Canada, honouring a principle that First Nations’ data remains in Canada, governed by Canadian legislation and protections.

During COVID-19, the Health Information Research Governance Committee in Manitoba demonstrated what ethical, distinctions-based oversight looks like. They ensured rapid access to data during a crisis but always in a way that protected First Nations’ governance, culture, identity and integrity. That same lens must be applied to Bill S-5 — another reason to call upon this organization as a witness when it reaches committee.

We also heard about data challenges during emergencies, from wildfires to pandemic responses, when the lack of accessible, accurate information left communities without the ability to track who was evacuated, who was vulnerable and who needed urgent support. This is not acceptable in a country with Canada’s wealth and technological capacity.

Interoperable systems must ensure that First Nations can access the real-time information required not only to save lives but to protect people’s wellness and dignity.

I have been asked to highlight the need for data disaggregation. First Nations, Métis and Inuit are not interchangeable groups. Research that homogenizes them under the label “Indigenous” is ethically and methodologically flawed. Oversight bodies have been clear: Research must distinguish among nations so that solutions reflect the unique needs, experiences and rights of each nation.

From a technical perspective, important progress is already under way. First Nations in Manitoba are actively integrating electronic medical records with provincial systems such as the eChart or the Public Health Information Management System, known as PHIMS. These systems rely on First Nations-owned vendors like Mustimuhw Information Solutions to model First Nations sovereignty in action. But even this progress is hindered by the persistent reality of poor connectivity in northern and remote regions. Cloud-based solutions cannot work without a stable internet. Many communities in Manitoba must still rely on on-premise data storage to ensure privacy, sovereignty and continuity.

As we consider Bill S-5, we must recognize that legislation built for urban bandwidth cannot be implemented in communities that barely have stable access to the internet.

Honourable senators, the voices we heard were clear. The bill must move from “may” to “must.” It must embed distinctions-based approaches, require First Nations governance and participation and ensure that First Nations data sovereignty is not an afterthought but a foundation.

At its heart, Bill S-5 is about more than technology. It is about power. It is about trust. It is about acknowledging that health data has long been used as a tool of colonial governance and about ensuring that this legislation does not repeat those harms. Today we have the opportunity to build systems where First Nations will inherit a health system that respects them, protects them and recognizes their inherent rights.

Thank you. Meegwetch.

Senator McCallum, I am sorry. I have to interrupt.

Honourable senators, it is now seven o’clock. Pursuant to rule 3-3(1), I am obliged to leave the chair until eight o’clock, when we will resume, unless it is your wish, honourable senators, to not see the clock.

Is it agreed to not see the clock?

Some Hon. Senators: Agreed.

Some Hon. Senators: No.

The Hon. the Speaker: I hear a “no.”

Honourable senators, leave was not granted. The sitting is, therefore, suspended, and I will leave the chair until eight o’clock.