Connected Care for Canadians Bill

Moved second reading of Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking by health information technology vendors.

She said: Honourable senators, I am pleased to have the opportunity to speak today about Bill S-5, the connected care for Canadians act.

I am delighted to rise today and speak to Bill S-5, which supports the establishment of a connected health care system in Canada.

Secure and easy access to our own personal health information is crucial for saving lives and improving health care for Canadians, but it’s also about giving people and their care teams the right digital tools to unlock real benefits, not only for better health outcomes, but for reducing costs, driving innovation and growing Canada’s economy.

We have glimpsed the potential of this tool, but we are still far from making it a reality. In Canada, health information is fragmented and scattered among hundreds of digital systems.

Today, 47% of Canadians access their health information electronically, and only 29% of physicians exchange health records across points of care. Across Canada, fax machines remain the primary way to share health information, which is unacceptable for our country.

First, think about what this means for Canadians. When someone sees a new provider, they are asked to repeat their medical history, including their medications, allergies and conditions, sometimes multiple times. That’s assuming they can recall the details correctly. This is not only frustrating for patients, it leads to wasted time, incomplete and inaccurate information and billions wasted in unnecessary costs.

Think about what this means for our already stretched and fatigued health care providers. They are left with incomplete information about their patients, limiting their ability to provide informed care, which can lead to life and death risks. Providers often work with incomplete information, relying on patient recall, manual faxing, piecemeal documentation or informal cross-organization relationships.

This fragmentation creates challenges for things like continuity, since emergency room staff, walk-in providers and community pharmacists often cannot access primary care records. It also impacts patients’ safety when medication histories, pending results and care plan details are missing. There are inefficiencies in terms of costs and time for both patients and providers caused by duplicate assessments, tests and referrals.

There are workflow problems in that clinicians lose significant time navigating multiple systems. A physician in New Brunswick recently shared that he has different usernames and passwords for five systems that he could access and five other inaccessible systems that have information that would improve his care of his patients. He shared this with a colleague last week.

There is poor equity. Patients with low health literacy, language barriers or limited system familiarity disproportionately shoulder the burden of coordinating their own care. It also hides the true complexity of care. Much of what keeps the system functioning is unrecognized, unsupported work and workarounds. Physicians report that they spend two hours a day searching for information related to patient care. Patients also receive care through emergency departments, urgent care, walk-in clinics, community pharmacies, pharmacy-based clinics, social services, community mental health settlement services, physiotherapy and allied health clinics.

These care providers cannot share information electronically. Strengthening interoperability across the medical neighbourhood is, therefore, essential for ensuring continuity, reducing duplication and supporting the whole ecosystem of clinicians who contribute to the care of Canadians.

In New Brunswick, the Health Systems Lab and McKenna Institute, both at the University of New Brunswick, or UNB, will conduct a province-wide systems-thinking study to map how providers across patients’ medical neighbourhoods access, navigate and reconcile information across multiple electronic medical records by visualizing how work is executed across the whole medical neighbourhood. The study will reveal where interoperability breaks down, how variability emerges and where targeted, co-designed interventions can strengthen coordination, safety and productivity across the provincial system. Those lessons should be shared with provincial counterparts.

Imagine the difference if every patient and their health care providers could easily access health records electronically, no matter where in Canada the patient receives care. Our health records should follow us wherever we go, across every part of the health care system and from one province or territory to another.

The focus of this proposed legislation is straightforward: to improve patient safety while protecting patient privacy and giving providers the digital tools they need to deliver safe, efficient and accessible care. Bill S-5 would enable health information to be shared securely and effectively on a need-to-know basis, including between patients and health care providers, in an easy-to-read format while safeguarding personal information.

This is connected care.

The issue stems from the fact that health information in Canada is often stuck in separate systems and can’t be easily shared due to a lack of common standards and business interests. The lack of standards also impacts the quality and consistency of information, limiting the potential for de-identified data to be used in research and AI-driven innovation that could lead to real health outcome improvements for Canadians.

To address this issue, this proposed legislation would require health IT vendors in Canada’s digital health sector to adopt common technical and data standards. It would also prohibit vendors from engaging in data blocking, a practice that prevents authorized users from accessing health data even when privacy legislation allows it.

Bill S-5 has critical implications for the future of our health care system and for the economy. Data saves lives in a very real way, and it has the power, perhaps more than anything else, to transform our health systems.

This is also true for artificial intelligence, or AI, which has the power to improve care and treatment, reduce provider burden and improve productivity and innovation. But the safe and effective use of AI depends on access to high-quality anonymized data that is standardized and can be shared across the system. For example, by standardizing and integrating anonymized data, researchers can find patterns and trends more easily to help diagnose a rare disease or underlying condition that would not have been obvious from one piece of data in isolation. This is also true for researchers analyzing data to improve health or prevent a public health emergency and for innovators building technology that could pave the way for a very different future for our health care system.

Ultimately, better data and digital tools create a more efficient, accessible and innovative health system. It’s time to move ahead with a modern, safer and connected health system that strengthens both health outcomes and Canada’s economy. Better-connected health data is also expected to drive major efficiencies, with estimates suggesting up to $9.4 billion in annual savings from reduced duplication, fewer missed appointments and more effective use of resources.

The lack of timely access to health information increases the risk of misdiagnoses, medication errors, treatment delays and unsafe treatments in Canada.

Each of these risks can cause a patient serious harm or result in death.

Let me take a moment to share the story of Greg Price, whose legacy has been an inspiration for some of us working on this legislation. In 2012, Greg Price, a 31-year-old Alberta man, died of complications from surgery for testicular cancer. From the beginning of Greg’s journey through the health care system, he experienced problems. Lost and delayed health information and a lack of communication between digital tools and health data systems undermined the efforts of the health providers involved in his care.

Falling Through the Cracks: Greg’s Story is a short film based on Greg Price’s experience with the health care system. In spite of the tragic outcome of this story, the message of the film is intended to inspire positive change to the health care system.

Greg’s tragic and unexpected death highlights the risks that all Canadians run due to the fragmentation of data in our health system.

In the lead-up to this legislation, many Canadians came forward; like Greg Price’s family, they had suffered because they could not access the health information they needed. One physician shared the story of how they had worked with their cancer patient to set palliative end-of-life goals. However, when the patient was transferred to the emergency department due to worsening symptoms, including a limited ability to communicate, the hospital did not have a record of the patient’s treatment plan. This led to the emergency staff preparing the patient for unwanted surgery. By coincidence, the patient’s family doctor was working in the ER and was able to intervene. The patient was only able to die peacefully in their home, as they wished, because their doctor happened to be there.

The risks are also high for patients who travel in Canada, whether those in rural and remote communities or those who are out of province or territory for medical treatment or even travelling for business or on vacation.

One health care provider said the hospital where he works is located near a provincial border and accepts patients from the neighbouring province. He explained that these transferred patients arrive in serious condition, usually with photocopies of their health records. The information is often incomplete because there is no digital connection between the provincial health systems.

My own province of New Brunswick knows this all too well. Children in our province with complex health needs often face travelling to the IWK Health Centre in Halifax for necessary health care and life-saving procedures and then returning to New Brunswick for follow-up care. Adults with very complex conditions are frequently referred to either Montreal or Toronto. In all these cases, important health information is often missing or inaccessible.

These are real situations that, unfortunately, happen every day. These examples show that patients and health care providers rely on timely and accurate data. Without it, health care providers must make clinical decisions with incomplete information, which undermines their ability to provide safe care.

Shockingly, one doctor in the Northwest Territories has likened the situation to “flying blind” — an unacceptable standard of care in Canada.

From these stories, it is easy to see how this lack of access to patient health information contributes to physician stress, burnout and turnover. Physicians need access to digital tools so they can focus more on patient care than on paperwork, and so they can feel confident about the care they are providing. That also applies to the health care teams that work with them.

This legislation will also break down economic barriers for Canadian firms and innovators. Health data is one of Canada’s most valuable natural resources, thanks to our publicly funded health care system.

By breaking down competing provincial and territorial requirements to create consistent national standards, we can unlock the full power of this data for innovation.

Canadian firms need a level playing field where standards are clear and consistent across the country, enabling them to compete at home and abroad.

Aligning with international standards lowers the cost of doing business, frees firms from navigating a web of competing requirements and allows them to focus on scaling their solutions and harnessing the full potential of artificial intelligence.

It also opens the door for emerging small businesses to enter the digital health sector, fuelling job creation and economic growth. By making it easier for Canadian companies to bring their solutions to market, we strengthen competitiveness, accelerate innovation and expand opportunities both nationally and internationally.

With Canada’s diverse population and rich health database, we have a unique advantage for building world-leading AI applications, attracting global talent and positioning our country as a leader in health innovation.

Consistent standards are essential not just to speed up progress on AI, but also to ensure that health information is accurate, consistent and impartial, lowering the risk of perpetuating inequities in the system.

Just as we wouldn’t allow a self-driving car drive without clear, machine-readable signs, AI and other digital tools need reliable, standardized data to function safely.

We know that when health information is connected and accessible to those who need it, Canadians can see benefits, such as improved quality of care, reduced medication errors, increased accuracy of diagnosis and a better, more efficient health system and economy.

While this risk exists for all people across Canada, it is amplified for certain Canadians. For example, people who must travel across provincial or territorial borders for care, like some New Brunswickers; patients who have many interactions with different parts of the health system, and many specialists, such as those with rare diseases or chronic conditions; people in rural and remote communities, who face higher rates of avoidable emergency department use due to gaps in primary care; children, particularly those under the age of 10, who are most likely to visit the emergency department for conditions that could be managed in primary care.

This legislation has been contemplated since 2023, and indeed long before that by health care professionals. Despite significant investments, Canada’s health system is under immense strain. Without decisive action, we risk perpetuating an outdated system that can fail patients. Without action, we will fall further behind our peers, losing the confidence of Canadians and missing opportunities to strengthen both our health care and our economy.

This legislation responds directly to the urgent challenges we face today. Health information is critical to improving accessible and efficient care, saving lives and driving change, but unlike several OECD countries who legislated on this years ago, Canada is not using this powerful tool to its full potential. Canadians themselves are demanding change. They want digital access to their health information to help them make important decisions.

For many years, industries such as banking and air travel have provided seamless digital services, yet most Canadians cannot easily access their own health records.

In fact, just this month, the Standing Committee on Banking, Commerce and the Economy made observations on Division 23 of Bill C-15. The committee urged the government to examine, as soon as possible, opportunities to extend data-mobility frameworks to additional sectors of the economy beyond consumer-driven banking, such as health and tax data, noting that Innovation, Science and Economic Development Canada has indicated that the current amendments would permit such sector-specific frameworks where desired.

Meanwhile, our health care system is at a breaking point, wait times are growing, and outdated and disconnected systems are holding back progress.

Our health care workforce is also in crisis. Physicians, nurses and other members of the health team are burning out at unprecedented levels, yet health care providers spend hours charting and working with outdated systems.

By improving the accuracy and timeliness of personal health information, the connected care for Canadians act has the potential to enhance collaboration among interprofessional teams, reduce duplication and improve patient outcomes.

The Canadian Nurses Association has been calling for the adoption of clinical data standards for years. Dr. Margot Burnell, president of the Canadian Medical Association, said recently that the inability to share records between health providers puts patients at risk.

Electronic health record connectivity across the care continuum is critical to continuity of care and informed care. Without a seamless exchange of information between systems and providers, the burden of sharing data and information falls to patients and their families.

This advice is not new. A report released in 2015 by the federal Advisory Panel on Healthcare Innovation cites evidence that integrated care where:

. . . inter-professional teams of providers collaborate to “provide a coordinated continuum of services” to individual patients, supported by information technologies that link providers and settings. . . .

results in lower rates of hospitalization for patients, increased preventive services and lower costs per person.

Furthermore, without coordinated action, Canada risks losing the ability to leverage this data to improve care, innovation and the system. In this period of global economic uncertainty, we cannot afford to overlook this opportunity. The use of digital health tools, including AI, will strengthen the Canadian economy and keep us competitive into the future.

Recognizing this, provinces, territories and the federal government have been working in an unprecedented way to bring our country together around a unified economy. The digital health sector is no exception; it is one of Canada’s fastest growing industries and a major contributor to the GDP, with health care overall accounting for 15% of the Canadian workforce.

In today’s uncertain global environment, there is a clear opportunity to strengthen Canada’s digital health sector and explore new partnerships.

The legislation aligns with approaches used in other jurisdictions, such as Australia, the United States and the European Union. Their residents have been reaping the benefits of connected care for years. Now it is Canada’s turn.

If we act, we can ensure that Canadians have access to connected care that rivals — or even surpasses — the best in the world. However, without a nationwide approach, some regions of the country could see improvements, while others are left with significant gaps, exacerbating health disparities across the country.

Bill S-5 would mandate common requirements for the content and exchange of data that would apply to health IT vendors across Canada. Together with a prohibition on data blocking, the legislation would improve data access and data mobility.

Pan-Canadian standards would be set out and maintained through regulations, with requirements that would enable patients access to their own health information, secure exchange and easy access to health information for those who need it while protecting privacy, and standardize health data content to improve quality and usability.

In this way, Bill S-5 would allow health information to be shared effectively on a need-to-know basis to both patients and health care providers in a timely and easy-to-use format while protecting privacy.

I want to emphasize that this bill does not impact existing privacy legislation. While the intent is to enable a connected care system, sharing or access to personal health information would continue to respect the requirements of Canadian, provincial and territorial laws that govern the use of personal health information. The Government of Canada remains committed to collaborating with partners to ensure the protection and secure sharing of Canadians’ health data and, in turn, to ensure patient safety.

This act would enable, not compel, secure access for patients and secure information sharing between health care providers. Bill S-5 applies only to digital health vendors. Some vendors, operating in markets where governments mandate such standards, have already adopted them.

The legislation does not create a digital ID, platform or database of health information that would be shared with the Government of Canada. It does not compel data sharing. This legislation is about Canadians and their providers accessing their own health data within the strict confines of existing privacy rules, within the circle of care and on a need-to-know basis.

The Government of Canada is taking a collaborative approach with provinces, territories and stakeholders to achieve pan‑Canadian interoperability in the health sector.

Recent events in Canada have highlighted the need for better health data for the benefit of both Canadians and the health care system. In 2022, the Pan-Canadian Health Data Strategy Expert Advisory Group released the Pan-Canadian Health Data Strategy. This strategy is designed to support the effective creation, exchange and use of critical health data for the benefit of Canadians and the health care system.

In 2023, at a meeting of Canada’s first ministers of health, there was clear recognition that health data could be useful in evaluating health care investments, providing insights into the health benefits and gaps experienced by Canadians.

In June 2024, the connected care for Canadians act was introduced in Parliament, proposing common data standards for health information technology systems with an aim to drive connected care, enhance patient safety and improve health outcomes. Bill S-5 is a reintroduction of the connected care for Canadians act.

Provinces and territories will be able to use the federal framework to make similar laws in their jurisdictions if they choose. The bill will act as a backstop in provinces and territories without similar legislation in place.

Bill S-5 will also support a more coordinated and integrated care system, particularly in rural and remote communities and for Indigenous populations, where individuals rely more often on virtual care, cross-border medical travel and/or both on-reserve and off-reserve care.

Let me take a moment to review recent efforts and investments that align with the goals of Bill S-5. There has been significant collaboration to meet federal, provincial and territorial, or PFT, commitments to improve how health data is collected, shared, used and reported.

In collaboration with the provinces and territories, the Government of Canada is implementing a joint action plan on health data and digital health. These efforts are guided by a Pan‑Canadian Health Data Charter that affirms common principles, such as equity, public trust through engagement, and respect for Indigenous data sovereignty.

As part of these efforts, federal, provincial and territorial governments have also been collaborating on health data reporting. Common indicators have allowed us to measure progress in improving the health system and to communicate transparently to Canadians. Federal, provincial and territorial governments have advanced key initiatives, including pan‑Canadian principles to guide ethical and responsible AI use across health systems, a framework for health data stewardship and resources to build public trust and data literacy in health data sharing.

Together, we have also developed a new public health information sharing agreement for more consistent public health data sharing across Canada to combat future public health emergencies.

Importantly, and directly in support of this legislation, the Shared Pan-Canadian Interoperability Roadmap is being implemented, which is led by Canada Health Infoway and outlines a path forward for defining common interoperability requirements in Canada. Bill S-5 would catalyze provincial, territorial and stakeholder efforts on the Shared Pan-Canadian Interoperability Roadmap by accelerating the adoption of common standards by health IT vendors through enforceable measures.

As I have laid out, the government is working collaboratively with provinces and territories to advance the goals of connected care in Canada. This legislation builds on conversations and work with provinces and territories across the country. In fact, we are already seeing progress in parts of the country.

My home province, New Brunswick, through the MyHealthNB portal, is emerging as a leader in giving residents direct access to their health information. To date, more than 230,000 New Brunswickers have already accessed their personal health records through this system, with over 600,000 residents eligible. The province has also made advancements so patients can generate a summary of their health data that can be shared securely to their phone using a QR code, giving individuals the ability to carry their essential health information and securely share it with clinicians wherever they receive care.

These kinds of patient-centred, standards-based solutions show what is possible when health information is connected. Building on these success stories, the intention is to continue to engage every step of the way. For example, regulations would be informed by robust consultation with the provinces and territories, partners, Indigenous Peoples and stakeholders through the Canada Gazette process, and the work done to date by the PFT partnership will inform and accelerate this process.

A collaborative and transparent approach with provinces, territories and vendors is being taken, providing ample time for them to develop their own legislation if desired and respecting provinces and territories that have made initial progress on mandating standards. Quebec and Ontario are two of these.

Once it is established that administrations have implemented their own similar requirements, the federal framework does not apply.

As has been the case in other parts of the world, such as Australia, the United States and the European Union, legislation and regulations will be critical tools in Canada for driving change and successfully improving the interoperability of our health systems.

Once it is passed, this legislation can save lives, as the story of Greg Price so poignantly illustrates. Gaps in data collection, sharing and use will only continue to perpetuate the unnecessary risks and frustrations faced by Canadians and their circle of care. It also impedes our ability to make evidence-informed decisions that not only improve health care and promote equity but also drive system efficiencies and support the economy.

There is strong support for change, and I believe that, with this legislation, we have found an approach that works in the best interests of all Canadians. Bill S-5 provides a solid foundation to ensure that we can fully harness the potential of health data and digital tools, including artificial intelligence. Canadians will see improvements in the efficiency, accessibility and quality of care with secure and timely exchange of health information across care teams and settings. That is why I urge all senators to move quickly to support Bill S-5. Thank you. Woliwon.

Yes.

It is informal, but I have been told by the minister that the real work — that being the work that needs to be done for the regulations — will happen as early as this summer. I’m even more reassured, I guess, by the fact that a lot of the work has been done.

Obviously, the engagement needs to happen as per what happens through the Canada Gazette, but the provinces and territories have been working pretty diligently — and more and more diligently, it seems, as the months pass — understanding that there are opportunities out there for growth and that Canadian companies need to be functioning with international standards in mind so that they can sell their products abroad.

Big provinces like Quebec and Ontario are moving on legislation of their own, which is great, and it will be used, most likely, as best practices for a lot of what is developed in terms of the federal government.

I do have hope that it will happen quickly. There seems to be a lot of goodwill amongst the provinces and, certainly, amongst the health care professionals who are organized into groups. There is tremendous support for this to move forward, and they are looking forward to working with the government in terms of the regulations.

Working on the standards together is one of the big wins, I guess, in this whole thing. They have begun to do that since 2023, in particular, because the provinces and territories and so on come to the federal government with requests regarding health transfers, and in the most recent health transfer, there was a chunk of money, if you will, given to the provinces with the understanding that this would be spent on these very things — the development of Canadian standards and interoperability between the provinces — because of the things that I mentioned in terms of certain provinces, like my own, having to go for care to other provinces at times.

But you also noted research and innovation, and the sharing of anonymized or disaggregated data is really important to researchers in Canada, both in the health care sector and in the technology sector, to decide what it is we need and how best it would serve Canadians. We’re a multicultural country, so there are all kinds of opportunities to develop things that are very workable for all kinds of other situations, other countries and jurisdictions and so on.

I am all for this. I remember in the late 1990s when it was the health information superhighway, and all of us health care folks were super excited. There are, actually, 14 health jurisdictions, and, of course, the fourteenth is through the Canadian Armed Forces, which is federal.

We have spent so many years trying to intersect with provinces and one territory — Yukon — where we have service members who also access care because they are outside of the Canada Health Act. We have certainly seen the challenges of this, so I think the standards approach is absolutely outstanding, but I do believe you need to talk about Indigenous Peoples and also the Canadian Armed Forces. Standards are going to be quite important.

My next thing is that this legislation right now talks about privacy and different things, but we also know that health information and health systems are a cybersecurity target. They are directly linked to that. Do you know whether the standards are also moving towards cybersecurity requirements, which affect not only the vendor but also the provinces that do this? The subparagraph to that is that you have talked about transfer payments, and trying to replace existing systems is in the billions per province.

First of all, my understanding is that with interoperability, there are things that can happen with the systems that we have. Some of them are clearly outdated and would not be able to do that, but there are systems in my own province, for instance, that should be able to talk to each other, but people haven’t done the work in order for them to talk to each other yet.

I’m trying to think of the other thing that you first mentioned — cybersecurity. The privacy legislation that exists in the provinces, which I understand is quite robust in most provinces, would be the part that we would be dealing with in terms of that. All of that still exists, and I know in my own province that there is a particular act that deals with health information in and of itself.

Cybersecurity, as you’re more than well aware — better aware than most people in this room — is something that is ongoing, and we will need to have, certainly, not only standards but vigilance in terms of setting up firewalls and so on to protect information, because what this is meant to do is have information for the patient to access, for the providers to access and share amongst the circle of care, but, certainly, any big system — I know universities have been attacked.

Again, it’s a provincial issue that goes across all of the jurisdictions, and that will be something that I will mention in terms of needing to think about that, in particular. You’re absolutely right.

Would you take a question?

I have to echo what has been said. This is an overdue initiative. There is no reason that anybody in Canada — a Maritimer should be able to go to British Columbia if something happens; my medical data should be accessible to the provider in British Columbia.

I do recall back in the late 1990s and 2000 era when the Canadian health information highway was up for discussion, and there were two or three things — I was one of the central agency folks involved — one was cost, and the second was the system itself. Technology has advanced so much.

Do you have concerns about costs or other challenges? What do you see as the biggest challenge besides cost?

There is a cost to not moving forward, and I think that’s a larger cost. I worked in health care for a long time, and most of the technology that we use has to be updated every five years. That’s a cost of doing business, if you will, and that needs to be built in.

I don’t believe that it should be an excuse for not moving forward, and, generally, when you adapt to a new technology or adopt a new technology, it ends up either doing a little bit of cost containment, or — and I have seen it many times — it benefits patients in a way that means that their trajectory or what we spend on them in the health care system is, hopefully, less, and they are getting better at the same time.

Senator Osler, there is one minute left. If you would like to start off with your question, I may have to interrupt.

Will you take a question?

Thank you for this. I understand the bill is about breaking down silos so that patients can have better and safer high-quality care. As we talk about health data, there is a nuance in there, and that is the health data ownership piece of it.

As patients, we have a right to access our health data, but the physician or the clinic or the hospital that created that medical record is the owner or custodian of the data. As we talk about this, there is a secondary use to health data when it comes to health IT vendors, in particular, once the data is anonymized and disaggregated, because it can then fall outside of typical privacy legislation within the provinces.

There are concerns about the secondary uses of data once these silos are broken down in terms of data being used for purposes that we as patients didn’t know about and didn’t consent to, such as for the training of AI models or for commercial use by IT vendors who may seek to own or use the health data.

Can you speak to some of the nuances about the secondary uses? Are there any safeguards within this bill or that are being discussed?