Connected Care for Canadians Bill

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

She said: Honourable senators, I am pleased to speak today as the sponsor at third reading of Bill S-5, the connected care for Canadians act. I will speak to why interoperability is foundational to improving continuity of care, strengthening patient safety and ensuring that digital health investments deliver for Canadians.

I would first like to thank all the members of the Standing Senate Committee on Social Affairs, Science and Technology for their careful consideration of Bill S-5 and for the interventions made by other senators, which will ensure the advancement of this bill’s purpose for the benefit of all Canadians.

True interoperability is not about new apps or new platforms; it is about ensuring that all patients in Canada receive the care they need across health settings, systems and jurisdictions.

The reality for many Canadians is that they rarely receive care from a single provider or within a single organization. Instead, the care they receive is delivered by multiple providers across diverse settings, including primary care and specialty clinics, hospitals, pharmacies and long-term care.

This is particularly true for patients living with complex conditions or those living in rural, remote or Indigenous communities who must see multiple specialists or travel across provincial and territorial borders to receive the health care they need.

The fragmentation of electronic health records undermines continuity of care, as it forces Canadian clinicians to rely on incomplete information, outdated records or manual workarounds to understand a patient’s history.

The issues and the root causes of disconnected health systems have been recognized for decades by health system stakeholders, with collaboration being led by Canada Health Infoway and the Canadian Institute for Health Information.

In recent years, provinces and territories have become increasingly engaged with federal organizations in improving access to health data sharing, and work on this bill in particular began in 2024.

Bill S-5 helps address this issue by facilitating the secure sharing of health information. This enables safer, better coordinated and faster care, while allowing patients to easily access their medical records.

Bill S-5 will also translate into real improvements for clinical workflows by reducing administrative burden and relieving the pressure on our health care providers.

For patients, interoperability reduces the safety risks associated with the harms of fragmented care, such as duplicate tests, longer wait times for treatment, or diagnostic errors.

It also saves them from having to repeat their medical history, manage administrative formalities or act as intermediaries between services in the health care system that do not communicate with one another.

This is why Bill S-5 not only focuses on enabling data exchange but also on ensuring that the information being shared is timely, usable and integrated into care delivery.

For example, members of the Standing Senate Committee on Official Languages highlighted the need to incorporate language requirements when developing national interoperability standards. They expressed concern that a failure to take account of language standards could cause problems with the readability of medical records. Incorrect handling of accents, for example, can even lead to corruption of digital files.

During consideration of the bill, the Minister of Health and representatives of the Department of Health assured us that specifications had already been published in both official languages and that they were working with New Brunswick to promote the adoption of bilingual digital tools.

This is also one of the few areas where system-wide progress can be achieved on a large scale, benefiting patients across Canada, regardless of where they receive care or which health care professionals they consult.

Interoperability therefore becomes not only a technical priority, but also a strategic one, with implications for equity, access and the sustainability of the system. This takes into account the need to ensure the sharing of medical records.

Improving interoperability must be done in a way that respects Indigenous data sovereignty — including the principles of ownership, control, access and possession — and recognizes the rights of Indigenous communities to govern how their data is used and shared. This means that interoperability must be implemented in a way that is distinctions-based and aligned with First Nations, Inuit and Métis priorities and governance structures. In this way, interoperability can support better care while reinforcing rather than undermining Indigenous data sovereignty.

Recognizing calls from expert witnesses and following its study, the Standing Senate Committee on Social Affairs, Science and Technology strengthened the preamble of the bill to reinforce the importance of respecting Indigenous data sovereignty and the governance of Indigenous data.

A related issue is that, at present, there is a custodial framework in terms of health systems data in Canada. The committee heard from witnesses that moving toward a stewardship model would be a shift toward bringing patients closer to their own health data.

Officials from Health Canada told the committee that this legislation is one important piece of a broader tool kit, and there are so many different efforts under way — with our provincial and territorial colleagues and with the Canadian Institute for Health Information and Canada Health Infoway — to advance the broader agenda around improving access to health data.

One of the things that the provinces and territories agreed to was to better align their policies and regulations related to health data, and one of the first areas that they agreed to focus on was health data stewardship. They tasked the Canadian Institute for Health Information, or CIHI, to produce a pan-Canadian framework for health data stewardship. The goal is to shift toward a culture of better data sharing and stewardship that is in support of the public good and that balances the need to protect privacy with the very real risk of not sharing data.

CIHI is leading the way by providing resources to the provinces and territories to help them adapt their privacy rules to build a stewardship mindset into their work and to create a community of stewards across the provinces and territories that can share best practices. These collaborative efforts are meant to complement the connected care for Canadians act.

Despite decades of investment in digital health, disconnected systems persist in Canada because digitization and interoperability are not the same thing.

Across the country, many parts of Canada’s health care systems have been successfully digitized, including electronic medical records, hospital information systems and public health data systems. The issue is that there was never a requirement for these systems to consistently work together, and systems were never required to use common standards for sharing information.

Fewer than one in seven Canadians, or roughly 13%, can reliably access their health information electronically in a way that follows them across health care settings.

Even though care is increasingly delivered by teams across sites and across jurisdictions, just over half of health care providers exchange patient information digitally outside their own organization.

As the committee studying this bill observed, health information technology vendors constitute only one element of the broader health data ecosystem. Focusing solely on vendors is insufficient to achieve comprehensive interoperability and meaningful access to personal health information for Canadians. To fully realize the benefits of interoperable health data, the government should consider extending responsibility for the access to and exchange of electronic health records to all individual and institutional providers of health care.

Disconnection persists because health care in Canada is delivered within a federated system, where provinces and territories adopt digital tools at different speeds, under different funding models and with different policy levers. To their credit, in recent years, provinces and territories have become increasingly collaborative in terms of realizing the goal of interoperability of health information for the benefit of all Canadians.

Disconnected systems persist not because digital tools are lacking but because the foundations allowing those tools to work together have never been fully addressed. Bill S-5 is an important first step in moving forward together to do just that.

Research from the Competition Bureau and consultations with the digital health industry highlight that vendors are required to tailor their products to multiple jurisdictions, effectively operating across what functions as 13 separate markets rather than a unified Canadian one.

This fragmentation increases costs, duplicates efforts and limits opportunities for competition and growth within Canada’s digital health sector. It also creates barriers for Canadian companies seeking to scale, as they must navigate inconsistent requirements domestically before even considering alignment with international markets.

Yes.

Thank you for the question.

First, as you probably know, the health authorities are responsible to and funded by the provincial government, so that’s one piece. The health authorities are obviously the ones that make things happen, so they must have the funding to do so.

With respect to that, I think the provincial governments have negotiated with Ottawa in terms of the priority for interoperability and health care systems all ramping up together. I’ll give you one example of what has happened recently in New Brunswick. If you’ll remember, we had a GST holiday a while ago. New Brunswick, being one of the provinces where the GST is combined, felt they had lost $60 million, which they could not afford. The federal government has since made restitution, I guess, for that loss, but they have specified that it must go to health systems.

Certainly, the federal government is aware of the need, and the provincial government is aware that they need to put money into this. However, as I said in my speech, there is a cost to not doing anything, and the health authorities have to move forward.

With respect to the providers in the system — physicians, clinics and so on — they get some help, from the New Brunswick Medical Society, for instance, which negotiates with the provincial government in order to receive targeted funds to do these kinds of things.

It’s a problem. For a long time, pharmacies in New Brunswick have been connected by One Patient, One Record via the Electronic Health Record, or EHR, which is a good thing. However, as you pointed out, we’re still far from having everything we need.

I talked to someone who had done some work in this area. She said that a physician she knew had been in a focus group and had written down all of the places that he needed to go in order to access information. He needed a different username and password for each one. There were five that he could access and four that he would have liked to access, if only he could, in order to look after a particular patient whom he had in mind at the focus group.

I hope that I’ve answered at least some of your questions. Thank you.

Honourable senators, I am rising in support of Bill S-5, the Connected Care for Canadians Act, a long-awaited systemic reform that would prohibit data blocking by health information technology vendors.

I commend my fellow New Brunswicker, Senator Kingston, for her skill in sponsoring this bill and for the depth of her knowledge and expertise in this field.

As a member of the Standing Senate Committee on Social Affairs, Science and Technology, I am proud of the work that the committee has accomplished. It was a privilege to hear from the witnesses who spoke with remarkable consistency in support of this bill. Their message was clear: This change is both necessary and long overdue.

The objective of this bill is straightforward yet transformative. It ensures that Canadians can access their complete health records, enables health care professionals to view a patient’s history with consent and allows care providers across provinces to access critical information when it matters most. Through regulations, it will create a foundation of standards across the country. It will remove barriers that currently lead to some providers having to access five or more different systems on different computers with different log-ins to treat one patient during their visit. If these systems could talk to each other, imagine the time and cost savings.

We heard compelling examples of why this matters. Picture a British Columbian visiting New Brunswick who suddenly falls ill. With this legislation in place, the pathway will be open for system changes, enabling their treating physician — again, with consent — to access their medical history quickly and securely. In a community like Moncton, New Brunswick, where two separate health care systems operate within minutes of each other, the ability to seamlessly share information is not just helpful; it is essential.

We often speak in this chamber about the pressures facing our health care system, particularly the challenge of accessing primary care. But consider this: On average, a family physician spends up to 40 minutes a day searching for patient information. That is time not spent with patients. This bill begins to address that inefficiency in a meaningful way.

This will also promote equity. For vulnerable Canadians, fragmented records can mean fragmented care. Consolidating health information helps ensure more consistent, informed and equitable care.

This will also reduce costs. When providers can easily access test results and vaccination records, they can avoid providing the same care twice or sometimes even three times.

This bill is not limited to technology. It also aims to improve the delivery of care and transform the system through innovation and research. With greater access to anonymized data, researchers will be able to analyze disease trends, care pathways, excessive wait times, and many other factors. This will enable them to improve clinical and systemic responses, as well as outcomes for Canadians.

The standards will help break down barriers between provinces and territories along with levelling the innovation playing field between big and small technology developers. Health care is one of the biggest employers and contributors to Canada’s economy. With improved, secure data access and strong partnerships, an innovative ecosystem will be able to thrive and move Canada forward.

As we constantly hear how artificial intelligence, or AI, and technology are advancing exponentially, daily if not hourly, our electronic health management systems need to be able to adapt and benefit from technology improvements. Canada must keep pace with global digital health standards and advancements to enable the best outcomes for citizens.

As Dr. Margot Burnell, president of the Canadian Medical Association, said during her testimony, “Standards turn good intentions into working systems.”

We know our health systems are struggling in a multitude of ways. This bill will help move forward a patient-centred transformation focused on safety, quality care, privacy protection and improved operability.

This is not a complete solution, but it is an essential foundational step along the pathway of system change and a more connected health information highway across Canada. This has my full support.

Thank you.

Honourable senators, as many of you know, I spent most of my career working in health services, which means I have had the fortune to work with dozens of databases, none of which have ever communicated with one another. I want to bring some of that experience to my speech today.

I have to say that I was excited to see Bill S-5 introduced. Thank you, Senator Kingston, for your sponsorship. I think fragmented health data is hurting Canadians and stealing precious time away from our front-line health care providers. Even as we’ve tried to put patients first, Canadians still do not have a single, interconnected patient information system they and their providers can rely on.

To me, patient-first care means making sure patients feel understood and cared for when they enter the health system. It’s hard to make a patient feel understood when you’re asking them to repeat themselves in every health care setting in which they present, including clinics, hospitals, hospices and even their own homes with home care services.

We’ve known how to fix this for a long time. Information systems should communicate. Patients should be able to access their own health information, and that information should follow them through the health system so the professionals responsible for their care have the full picture.

Ask a primary care provider, nurse, social worker, occupational therapist or any community health team member, and they will tell you about the problems that arise when hospital care, home care and primary care information is siloed.

Let me give you some insight into a few common issues.

A home care worker might arrive at the home of a patient for their daily personal care only to find they were admitted to the hospital over the weekend and, perhaps, passed away. They’re greeted by a grieving family or sometimes by no one at all. The system that recorded the death did not communicate that information to the database used by the home care provider.

In other cases, families receive calls asking about appointments for loved ones who are no longer alive. These are inefficiencies, but more importantly, they are painful for families and demoralizing for the providers.

Another common time sink happens in the community care space. For example, a community mental health worker may be responsible for supporting someone living with serious mental illness. These folks disproportionally live at the intersection of our health and legal systems. It’s not unusual for a patient to be under a community treatment order under the Ontario Mental Health Act, requiring regular treatment such as a monthly injection. If, for example, the community worker is unable to find them and administer their treatment, they may assume the worst. They may spend hours calling around, contacting police or outreach teams, trying to locate the person who they believe has disappeared. Only later do they discover the person was admitted to hospital or is currently in the emergency department.

I think the most glaring problem that I have experienced is the lack of data transfer from hospital care to community care. Transitional points of care always heighten the risk that patients and clients will not receive the correct follow-up care or the correct approach to care when admitted to hospital, including medication, especially where medication management regimens are complex. Things get missed. I have seen important monthly injections missed for those living with schizophrenia far too often.

This is taxing emotionally and needlessly time-consuming, and it is time that could be allocated more broadly, especially given the patient/client caseload sizes. It prevents our already overburdened front-line workers from providing care that patients need.

I will also delve into a personal example. Just last week, I had a day surgery procedure. I was required to go to my general practitioner, or GP, for a pre-op assessment. I was required to bring a form to my GP from my specialist to be completed. Upon completion, I was given a stack of papers and told to be sure to go for my blood work and that I must bring these papers to my surgery.

Because a few weeks went by, I almost forgot to bring the papers with me as I was ready to leave the house at 5:30 a.m. and realized I booked an Uber for p.m., not a.m. I got to the hospital where I registered. I was asked many repetitive questions that were clearly on my stack of forms and then given another stack to take up to the surgery holding area.

I was taken to a bed and changed into a gown, which was followed by a nursing pre-op assessment where I was asked most of the same questions again.

At this point, the nurse took all the papers. When it was time, I proceeded to the surgical wait area. The anaesthetist asked me a number of questions — some repetitive again — and then I waited about 30 minutes beyond my scheduled surgery time. A nurse came back to report to me they were trying to find my file — the big stack of papers. Turns out it was in the slot next to the intended slot.

So, all was well, and I had my procedure, but you can see how much time was wasted and how an interoperable health record would save significant time and provide the possibility of providing more care to more people. As a certified Lean Leader, this obvious waste nearly puts me into a cardiac situation.

The bottom line is this: If databases across our health system were able to communicate with one another, information could easily follow the patient. Community providers would know when their patient has been admitted to hospital. Home care teams would know when a patient has died. Primary care providers could know when new issues have been uncovered in hospital before the patient walked into their office. Interoperable systems would allow providers to receive notifications when a patient’s situation changes and to prepare in advance, rather than trying to piece together information after the fact.

The technology to do this already exists and has for years. What has held us back are fragmented systems, regulatory barriers and technology models where different platforms simply cannot speak to one another. In the meantime, IT professionals — bless their souls — have spent an extraordinary amount of time trying to custom-write reports that download information from one system and have a common patient identifier downloaded from another system in an effort to piece together information that is often provided too late to providers.

Bill S-5 seeks to address that problem by establishing common international standards that allow digital health systems to exchange information securely. As the Government of Canada noted when introducing this legislation, only about 29% of providers currently share patient information electronically outside of their own practice, leaving patients far too often carrying paper records between offices or hospitals in a system that should already be digital. Or they are left using unsecured fax systems. I can’t tell you how many times I received doctors’ orders for patients that were not intended for me in my fax machine.

In fact, researchers study health information exchange. There is a lot of background on this. Those studies have found that when systems cannot share records effectively, duplicate diagnostic tests occur in roughly one third of transferred patients, with many of those tests medically unnecessary. That duplication reflects both wasted time for clinicians and additional burdens for patients.

Organizations across the health sector have also emphasized the importance of this change. As Dr. Margot Burnell, President of the Canadian Medical Association, has said, when personal health information can travel securely between clinics, hospitals and labs, patients experience better outcomes, and doctors have more time to focus on care.

At St. Paul’s Hospital, where I led large provider systems struggling with this issue every day, and at hospitals across this country, that second point is important. Front-line health care professionals spend far too much time navigating disconnected databases. They spend hours a week tracking down information, repeating assessments and duplicating work. Many providers are faced with running and entering data into dual databases with the same information to ensure reporting requirements for provincial and national reporting systems are recorded. This was the case in some of the substance-use programs I was responsible for, as primary health providers required the information in their database, and mental health and addiction services required it in theirs.

Electronic connected care is also crucial in the delivery of care to newcomers to Canada who may have challenges with language and communication or when interpretation is not made available in a timely matter. Piecing together a patient’s care needs is crucial in such cases. Similarly, having access to connected data in cases where patients are vulnerable due to age, gender, sexual orientation, ability, race or any other vulnerability can also help to ensure that good care is provided.

Research published in the Annals of Internal Medicine has found that physicians now spend nearly half of their workday interacting with electronic records and administrative tasks. This is exacerbated when information is located across multiple systems. Multiple log-ins, multiple passwords — you have heard it all before.

When information flows more effectively, providers spend less time chasing records and more time caring for people. One study examining the use of health information exchange in emergency departments found that when clinicians could access complete patient information through shared systems, they saved, on average, more than two hours of clinical and administrative time per case while improving quality-of-care decisions.

Reducing that administrative burden also matters for the health workforce. As Health Canada has noted, many physicians report that administrative workload contributes directly to stress and burnout. In my former roles, I have heard this repeatedly from all health care providers. When we remove unnecessary barriers and duplication, we create space for health professionals to do the work they entered the profession to do.

Better data sharing also allows for more compassionate care. Anyone who has worked in health care knows how often patients are asked to repeat their story. They may explain their condition to a family doctor, then again at the hospital, then again when they see a specialist and again when they return to community care. Patients sometimes say, quite reasonably, “Why can’t you just look at my other record? That says it all.”

Studies show that when health systems share information effectively across providers, patients report higher satisfaction with their care and greater confidence that their clinicians understand their medical history.

I like this legislation for a lot of reasons, but one of the most important points is that it allows patients to move through the system without constantly retelling their story. That can be hard on people. It also recognizes that care increasingly takes place across many settings: hospitals, community clinics, home care, mental health services, hospice care and sometimes private providers who deliver services alongside the public system. For care to be truly coordinated, those parts of the system must be able to communicate with one another.

Canada has already taken important steps in this direction. Canada Health Infoway was an important early effort to support digital health infrastructure across the country. This builds on that work and helps move us further toward a connected system where information can move safely and effectively to support patient care.

I want to acknowledge a submission from the Canadian Life and Health Insurance Association. They are concerned that the definition of “health information technology vendor” in this bill may be broad enough to capture insurers. This could create significant unintended consequences and upend how their industry currently operates, which is largely adjacent to the health system. As this legislation moves to the other place, I encourage colleagues to take a closer look at this issue, which came to our attention late in the study in a written submission, and for the government to determine whether this might need to be addressed through an amendment or regulation.

I believe we can build systems that both protect privacy and improve care. In fact, doing nothing carries its own risks. When information does not move appropriately within a patient’s circle of care, providers are forced to make decisions without the right information. This bill recognizes that health data is part of how Canadians receive safe, coordinated and compassionate care.

I am standing here today because I think Bill S-5 will help patients gain greater control over their health. It will make it easier to access the information that folks in health care need to do their jobs. All of us and all our families, friends and loved ones will be better off with a health system that is more responsive, more efficient and more focused on the people we’re helping. I look forward to advancing this bill through third reading so that we can move it to the House of Commons.

Thank you, meegwetch, marsee.

I want to thank Senator Muggli for her speech. On my list, Senator Arnold was speaking last. They were both excellent speeches.