THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, April 23, 2026
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 10:32 a.m. [ET] to study Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking by health information technology vendors.
Senator Sharon Burey (Deputy Chair) in the chair.
[English]
The Deputy Chair: Good morning. I call to order this meeting of the Standing Senate Committee on Social Affairs, Science and Technology. My name is Sharon Burey. I’m a senator from Ontario and the deputy chair of this committee.
I would like to begin by acknowledging that the land on which we gather is on the traditional, ancestral and unceded territory of the Anishinaabe Algonquin Nation.
I would now like to do a round table and have senators introduce themselves.
Senator Kingston: Joan Kingston, senator from New Brunswick.
Senator Senior: Paulette Senior, senator from Ontario.
[Translation]
Senator Arnold: Good morning. Dawn Arnold from New Brunswick.
Senator Petitclerc: Good morning. Chantal Petitclerc from Quebec.
[English]
Senator Osler: Flordeliz (Gigi) Osler, senator from Manitoba.
Senator Muggli: Tracy Muggli, Saskatchewan, Treaty 6 territory.
The Deputy Chair: Thank you, senators. Today, the committee resumes its consideration of Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking by health information technology vendors, also referred to by its short title, “Connected Care for Canadians Act.”
Joining us today for the first panel we welcome, from my hometown, Anne Snowdon, Professor, University of Windsor, and Chief Executive Officer, Supply Chain Advancement Network in Health; Alexis McGill, Assistant Professor and Research Chair in Health Innovation, Faculty of Nursing and Health Sciences, University of New Brunswick; and, by video conference from France, Dr. Ivar Mendez, Professor of Neurosurgery and Director of the Virtual Health Hub, University of Saskatchewan.
Thank you for joining us today. For your opening statements, you will have five minutes each, to be followed by questions from committee members. Ms. Snowdon, the floor is yours.
Anne Snowdon, Professor, University of Windsor, and Chief Executive Officer, Supply Chain Advancement Network in Health, as an individual: Thank you so much. It is, indeed, a tremendous honour to join you today.
As an individual, I bring a relatively diverse set of perspectives to this discussion by my early career experiences as a pediatric critical care nurse, a former chief nursing officer, a researcher that leads a national community of practice in supply chain resilience and, of course, as a Canadian with a very wide range of interactions in our health system in my roles as a parent, daughter, spouse, sibling, friend and neighbourhood health person. You would be surprised at how often that happens.
The critical features of this bill and the aspirations of the connected care act are really best illustrated by a patient experience of a very close friend and colleague of mine, Alex, who gave me permission to share this with you. She is 34 years old. She was admitted to hospital with an incredibly bad sore throat, only to find that she had necrotizing fasciitis — flesh-eating disease — of the trachea. They did daily surgeries to save her life. She was told three times to say goodbye to her family, but the great news is that this incredible clinician team saved her life. After a month, she was able to be discharged.
When she was discharged, what was most interesting, though, was that she was told, without exception, “Take your health records with you if you ever have any remotely similar throat infection.” She asked, “Exactly how do I get access to my record?” and they directed her to go to a local library and just download it from the portal. It is 450 pages long. She was rather shocked by that, to now realize it was up to her to share her health data. With any provider she would engage with in the future, she would be responsible for sharing that data.
We rely on patients a great deal to share their data, find their data or make sense of their data. As a patient, a number of times, I was not able to achieve that, and I have a fair number of skills to do so.
Similarly, I wrote a paper recently called “Flying Blind.” We do our best to look after patients in emergency rooms when a highly complex patient walks in the door, or anyone else for that matter. We have no idea what clinicians they have seen, what care they have received, what medications they are on or what products they might be receiving. We do our very best as clinicians, but we’re doing it without the data we need to make very informed decisions to achieve the best possible outcomes in terms of quality and safety.
You can already imagine that I fully support this bill. It offers a very important foundation for moving toward a much more digitally enabled health care system that every Canadian can be confident in. It is not a magic bullet. It is an early first step that simply allows the democratization of data to move across health systems and patient care interactions with providers for every Canadian.
It also sets the stage for Canada being able to overcome what I am working on nationally, which is supply chain resilience. Today, in Canada, we have no idea what products we have, where we have them or who needs them most, and as we experience the most shortages in the world compared to any other country — over 3,000 a year, lasting longer than any country in the world — at least a democratized interoperable health system will help clinicians, health leaders and provincial agencies managing supplies to know what we have on hand, where we don’t have it on hand and what populations are at greatest risk if they cannot access care because of the limitations of supply disruptions.
So, regarding Bill S-5, we have a long way to go. It is a very important foundation, and I have the greatest hope and aspiration that it will set that foundation so that every Canadian can access the care they need, when and where they need it, and products will be available to them so that we can proactively manage these shortages, which are widely expected to increase over time given our geopolitical challenges. However, there is no question that Bill S-5 is a very important place to start. Thank you so much.
The Deputy Chair: Thank you, Ms. Snowdon.
Alexis McGill, Assistant Professor and Research Chair in Health Innovation, Faculty of Nursing and Health Sciences, University of New Brunswick, as an individual: Good morning, everybody, and thank you very much for the opportunity to speak today.
I am fortunate to be able to bring a perspective of 24 years of clinical practice as well as a research perspective on health systems. My program of research focuses on improving access to primary care for equity-deserving populations by examining care and how it is delivered across complex health and social care systems. I study how fragmentation in care delivery impacts coordination, decision making and patient outcomes, and I develop and implement system-level recommendations to improve recommendations and integration across care settings.
Through my academic research, I have worked with a range of health professionals, including family physicians, nurse practitioners, specialists such as geriatricians and infectious disease physicians, pharmacists and nurses. Across all of these roles, there is a consistent message: Providers must navigate multiple electronic records to gather information on a single patient. This requires significant time and cognitive effort to locate, reconcile and interpret information. The resilient efforts of clinicians to prop up a broken system and make the connections necessary for safe care to take place are enormous.
In New Brunswick, the lack of electronic medical record, or EMR, interoperability has emerged as a barrier to team-based primary care. Graduate research at the University of New Brunswick has shown that for family physicians interested in moving from fee-for-service solo practice to team-based practice, the inability to interconnect their EMRs is a barrier. Two family physicians willing to work together cannot do that. They are not connected. In this context, EMR technology does not enable team-based care. It constrains it.
I have spoken about the burden placed on providers. The burden has shifted to patients. They are often expected to recall and communicate complex health information across multiple settings.
In practice, gaps in information flow directly into gaps in care. I cared for a patient who recently moved from Nova Scotia to New Brunswick. The patient had multiple chronic illnesses. They had limited health literacy, and they were unable to reliably recall their medications or the pharmacy where they had been dispensed. I did not have access to their Nova Scotia provincial health records. I could not verify what was prescribed or at what doses. In order to obtain this information, I had the patient sign a release of information form. I then faxed that form to the provincial health authority, and I awaited a chart, which was very thick and that I could not read.
During that time, I was required to make clinical decisions without a confirmed medication history. This created patient safety risk, and the patient experienced missed treatments. This is an example about how gaps in information flow — in this case, across provincial boundaries — directly impact patient safety and quality of care.
These barriers also extend to quality improvement. Clinicians are increasingly expected to improve care within their own practice settings, but they cannot access or use data on their own patient populations within their own EMRs. In this context, what is described in the legislation as data blocking may not always be intentional, but it is experienced in practice when information cannot be accessed or used, even when it exists within the system.
While the legislation focuses on vendor-level solutions, its successes will ultimately depend on whether it meaningfully changes how information is accessed and used in practice. I would like to highlight three considerations.
First, interoperability must reflect real-world care pathways. Patients receive care across multiple settings, and systems must support information flow across these transitions.
Second, it must reduce the burden on providers. Clinicians should not have to navigate multiple systems or reconstruct patient histories in order to deliver care.
Third, it must support real-time decision making at the point of care. Information must be timely, reliable and usable in the moment while care is being delivered.
In summary, Bill S-5 represents an important foundation for improving how health information is shared in Canada. Interoperability must be understood not only as a technical issue, but as a clinical and system-level one. Right now, the burden of fragmentation is being carried by patients and providers. The legislation has the opportunity to shift this burden back to the system and fix it, ensuring that health information can become more usable, connected and accessible where care is actually delivered.
Thank you, and I welcome your questions.
The Deputy Chair: Thank you, Ms. McGill.
Dr. Ivar Mendez, Professor of Neurosurgery and Director of the Virtual Health Hub, University of Saskatchewan, as an individual: I am a neurosurgeon and have been in practice for more than 30 years. I can tell you sincerely that I have never seen our health care system in such a crisis as at present. The fundamental issue we are confronting is a challenge in accessing timely health care.
Although Canada spends over $400 billion a year in health, 16% of Canadians do not have access to a primary care physician. We have a centralized health care system, and the populations that are disproportionally affected by this centralized system are the most underserved and marginalized, which incudes Indigenous Peoples and rural and remote communities, especially in the North and in the Arctic regions of Canada.
This centralized health system is not working, and we have no other option but to innovate. We need to change the paradigm of a centralized system to a distributed system. The future of health care is not in building new hospitals but in harnessing the power of technology to deliver health care where the patients are, regardless of their geographic location.
I believe that the future of health care is a hybrid model, a combination of in-person and virtual care. In Saskatchewan, we are developing such as model: the Virtual Health Hub. This is a highly innovative, Indigenous-lead project that will provide virtual care to up to 90 Indigenous communities when it is fully operational.
We are building a state-of-the art facility, the first of its kind in Canada, that will house a NASA-type virtual care command centre and will use advanced technologies such as robotics, artificial intelligence and novel telecommunication platforms to deliver health care to Indigenous populations. This facility is being built on Indigenous land at the Whitecap Dakota Nation near Saskatoon and will open in February of next year.
To be able to provide optimal virtual care, health information interoperability is essential, and I strongly support Bill S-5. However, there are several challenges and issues that must be considered.
The legislation is focused on vendors but not on the institutional custodians of health care information. This is one of the main barriers affecting patient care.
Here is an example from my own practice: As a neurosurgeon, I practise in a tertiary care centre in Saskatoon. However, I cannot access the electronic medical records of a patient who was referred to me from an Indigenous health care facility in northern Saskatchewan and vice versa. When the patient is transferred back to his home health facility after his brain tumour surgery, they cannot access his medical record from the tertiary care facility where he had his surgery.
This is a significant barrier to continuity of care and patient safety. Often there are no data-sharing agreements between health care facilities in Indigenous communities that are overseen by federal agencies and tertiary care centres that are under provincial administrative structures.
There must be an alignment of the institutions that are the custodians of health information with the spirit of this bill, Bill S-5, to enable easy, complete and secure access and exchange of health information.
There also have to be provisions in a mechanism to deal with sensitive information and protect individuals’ privacy around sensitive issues. This is particularly important in Indigenous populations, where stigmatization is a major issue.
A strong advocacy for Indigenous data sovereignty, respect and protection of OCAP principles — ownership, control, access and possession — must be explicit in the bill.
Consideration for the availability and sharing of de-identified data sets for research to support the development of health policies and public safety also needs to be considered.
Finally, there has to be consideration of the new wave of technology. This is AI. AI will have a significant role regarding data management, data distribution and data analysis. AI is coming, and we need to consider that.
We are in a very special time in the innovation of technology. If we move two inches today, it may be 20 kilometres in the next 5 to 10 years.
I strongly support this bill. This is a very important first step, and I thank you for your attention. I’m happy to answer any questions.
The Deputy Chair: Dr. Mendez, thank you so much.
We will now proceed to questions from committee members. For this panel, senators will have four minutes each for their questions, and that includes the answers. Please indicate if your question is directed to a particular witness or all witnesses.
Senator Senior: Welcome to our witnesses. I have one question I would like each of you to respond to.
From previous panels, I have a good sense of the benefit to clients and patients and the difference this will make in the quality of care.
Imagine with me that, let’s say, in 5 to 10 years — we don’t know where we will be, but imagine that you are doing the work you love and helping patients. Imagine that this new system — the first step — is in place, and other steps will come along. Could you describe the difference it will make in your life as a health practitioner?
I would like to understand that. Based on all the barriers that you talked about, what it is like for the patients and your frustration, what difference will it make in your life?
Ms. Snowdon: Let me begin. My immediate thought is that it will make a phenomenal difference as a patient, to have access to my own data to make informed decisions. Today, I do not, and I am pretty good at asking questions on how to get that data.
As a clinician, I am primarily in a research role right now. If, five years from now, this bill and the health system response build and leverage strengths — critically important — it means that we have transparency in what products we are using, what care we are delivering to patients, which patient groups are achieving ideal or best outcomes and how we switch or change or use better and smarter products so that every Canadian has the opportunity for best outcomes. Today, we simply do not have that.
Senator Senior: Ms. McGill, I saw you smile.
Ms. McGill: The question is excellent because I think it regards what we have all been wanting and hoping for. We can see it. We can see the encounters with our patients who we know well and some patients we do not know well. For the patients we don’t know well, it would be so eye-opening for us to have a complete patient summary available, with their allergies, their up-to-date medications and their previous admissions and discharge summaries — everything available at the click of a mouse in front of us.
Our preparation for our patient visits, in order to make safe, informed decisions for our patients — who trust us to do that — makes our clinical encounters far more meaningful. We’re able to have more meaningful conversations with our clients. We’re able to hear their needs, concerns, preferences and goals and work together. But our time is taken up with this data gathering, synthesizing it and trying to understand it from different sites and different EMRs. It is time-consuming, and our patients are not benefiting. Their health outcomes would be better, and Canadians would be healthier.
Dr. Mendez: It would improve patient outcomes, but it specifically would improve patient safety.
Senator Senior: Dr. Mendez, I was really asking about the difference in your life.
Dr. Mendez: I live that on a regular basis. I’m a neurosurgeon. I often see an individuals who have had motor vehicle accidents and that come to the emergency room unconscious. I would be able to have the necessary information on those individuals to provide the best care possible. It would be essential for my practice as a brain surgeon.
Senator Senior: Thank you very much.
[Translation]
Senator Petitclerc: Thank you very much for being here.
[English]
I want to quote you, Ms. Snowdon. You said — and you all said this, in one way or another — that the system relies on patients a lot and the burden is on patients.
I think I know the answer, but I want some perspective. Ms. Snowdon, you painted a good picture of the challenges around getting your own records. I think that challenge is, I would think, even bigger for individuals who are living with some vulnerability. We also heard stories of taking care of others, like one’s parents.
How big of a difference would there be in terms of equity and everybody having the same success in getting their data, no matter their challenges, vulnerabilities or socio-economic status? Am I correct that this would make a big difference in terms of that?
Ms. Snowdon: This bill will make it possible for any Canadian to access their records from any provider they happen to go to.
The average patient in a Canadian hospital today has three chronic conditions. They see different specialists for each of them, and yet you have no idea what the cardiologist has said or is doing or thinking versus the respirologist or the physician caring for diabetes.
This bill sets the stage for being able to flow all of that data, so the entire team understands it. But, most importantly, the patients will have it, and the patients could have a much more informed conversation with their providers, which today is close to impossible.
Senator Petitclerc: Thank you.
Did you want to comment on that, Ms. McGill?
Ms. McGill: Sure. In terms of equitable access to digital health, we will have to make additional efforts to support vulnerable populations or equity-deserving populations in accessing their digital health results and the conversations that they would have with different providers across the entire system.
Right now, in New Brunswick, patients have access to something called MyHealthNB. They are able to look at lab results, X-ray results and other diagnostics. However, someone who has low health literacy or low digital health literacy does not have that same access.
The bill sets a great foundation for the first steps, but we need to keep pushing forward to ensure that all Canadians have equitable access.
Senator Petitclerc: Thank you. This is very helpful.
I’m going to put my question out there, even if I’m not sure that you have input on it. We are studying this bill, and I am also from Quebec.
In Quebec, next month, the Dossier santé numérique is coming out, so I can’t help reading a lot on that and on there being some resistance at some point. Even today, I think it was Epic Systems saying that, at the beginning, it will be a 50% reduction of services for — I don’t know, it doesn’t say, but for a few weeks or a few months. Is that something that worries you?
Ms. Snowdon: I have worked with Epic in a number of countries. Their system does enable data to flow. This bill will require it. So rather than being an option that a health system would pay for, they would not be able to implement Epic across Quebec without sharing that data across the province. This bill will ensure that Epic doesn’t have an option. There is much work to do, as Ali and I have said, but this is an important bill to ensure that the system must make data available.
Senator Petitclerc: Thank you.
The Deputy Chair: Sorry. We are having some further technical difficulties. Unfortunately, Dr. Mendez, we will have to ask you for written answers.
Right now, we will move on to Senator Osler.
Senator Osler: Thank you to all the witnesses for being here. This is a question for all three witnesses. Dr. Mendez, if you could, please submit your answer in writing.
We received a written submission from Dr. Ewan Affleck, who is the Senior Medical Advisor, Health Informatics, College of Physicians & Surgeons of Alberta; and Mr. David Helliwell, who is a tech entrepreneur in British Columbia.
I’m going to read part of the submission, and then I will invite Ms. Snowdon and Ms. McGill to provide some commentary on it. The purpose of their submission is to encourage this committee to strengthen Bill S-5 by ensuring that it affirms the right of every Canadian to comprehensive access to their personal health information. They’re asking the committee to consider clearly stating that:
All parties handling health data, not just technology companies, must be compliant with the same nationally established health data and exchange standards.
This would mean that the regulations that flow from Bill S-5 could or would apply to more parts of the health care system.
Ms. Snowdon, I’ll invite you to comment, and then Ms. McGill.
Ms. Snowdon: Thank you so much. That recommendation would be nirvana. It would create world peace, quite frankly. Yes, I just put that out there. The system complexity alone — there are multiple layers of stakeholders here that would have to advance such a recommendation.
This narrow focus on vendors, as we’ve said, is a very first step. What that recommendation would mean is that every province would sign on to a common set of data standards, health information exchange, or HIE, requirements, from the provincial decision makers down to patients engaging with their providers. It is an absolutely phenomenal recommendation.
My experience suggests that when you try to create world peace, you may get lost in the complexity, and we spend decades of time trying to get to that goal rather than taking one step, building on that step and moving forward.
Ms. McGill: I agree with Ms. Snowdon. My research is in examining complex processes and systems, and we must first understand the system before we can make changes to it. So this bill, as a first step, allows us to gain an understanding of what has occurred. After the bill has been introduced and the changes have been made, we should take the time to examine the outcomes of that before we move on to other additions.
I’m speaking the same language: It would be wonderful. I believe we will get there. I believe we have enough Canadians and enough people behind this bill and behind what Canadians want. They understand that we will get there eventually, but we need to really understand how the system functions first before we make changes.
Senator Osler: Thank you both. Dr. Mendez, we will appreciate reading your written response.
Senator Muggli: Hello, Dr. Mendez. It’s Tracy here. We know each other very well. I want to first say thank you so much for your innovative care and work with Whitecap Dakota Nation. I know that Virtual Health Hub is saving thousands of dollars in transportation and lodging costs for patient travel from the North because they can receive their care virtually.
My question — and it may also be a question that our guests in the room can answer — is this: How many different platforms do you now or will you later need to navigate with Virtual Health Hub? One of the things we heard from the Department of Health yesterday was that processes for permissions will universalize data sharing, so data-sharing agreements will no longer be required. I’m interested in hearing feedback on that, because I’ve also been a part of creating data-sharing agreements — many of them — to be able to share information across databases. I’m wondering how that might impact folks.
Also, in terms of serving vulnerable populations in the North, I am also interested in hearing about broadband issues or, if it’s Starlink, issues of reliability. If we have secure and reliable access, how will that benefit the most vulnerable populations as it relates to access to records and, ultimately, patient care?
Ms. Snowdon: In terms of how many platforms, it would be in the thousands. Much of health data infrastructure is rapidly evolving. The platforms today will not be the same type, number or structure five weeks from now. So the complexity, as Ali has suggested, is something that you won’t solve and can’t predict, and AI is a great example of how quickly it is evolving.
Much of that is responding to data in the cloud. So the cloud is a whole different version in terms of structure.
Senator Muggli: May I interject? Do you know how many of those platforms would be U.S. platforms?
Ms. Snowdon: There are at least five major EMRs in the U.S. Epic, Oracle, MEDITECH and Allscripts are the most common ones. They are U.S.-based companies, but they are globally implemented. Those would just be the EMR platforms. There are pharmacy platforms, labs, diagnostics, images — and I could go on. So the complexity is very high, and the number of platforms is going to evolve very quickly.
On the processes for permissions, what’s really an opportunity but also a critical factor is authentication of who has access to data. We do that in banking. You get those texts and those passwords and those numbers — the double authentication. Health care is not quite there yet. The technology is there. It’s the system that is not there yet. That will be important, and those permissions are very easily managed in every other business sector. It’s simply implementing them at scale in health care.
Broadband is definitely an issue. I just completed a measure of digital maturity across an entire state in the U.S. Broadband does not exist, so digital data also does not exist until you fix the broadband and internet access issues. That’s a foundational infrastructure piece as well.
And data-sharing agreements are always hard. I’m a researcher. I did a COVID study on whether we have the products to deliver care during a pandemic. The answer is, “No idea,” because none of the provinces or territories were able to share any data.
That’s another provincial and territorial decision-making role that will have to come together; otherwise, all the advantages you’ve heard about will be very difficult to achieve.
Ms. McGill: I’ll add on what this looks like in practice for a clinician. I counted the number of platforms I need to log into in order to care for patients and to be able to access all of the information. There are nine, and each has a different username and password. This is important, because it does keep the patient’s data safe; we are custodians and stewards of private health information, but in terms of the cognitive load it places upon a clinician, it’s very challenging.
To be able to access these systems, some of which I don’t have access to — and would love to have access to — I have to ask for special permission. Thinking about the clinician, the parent, the relationship and the interactions they have, this is in the way; this keeps us from giving the care that patients deserve and that clinicians are trained to give.
The administrative burden is very high, and this is in the way.
Any way that allows us to take the first steps with this bill to get this going and improve interoperability will make a truly meaningful difference.
Senator Arnold: Thank you for being here today. I think this is the first time we’ve had such a patient-focused discussion. That’s what nursing brings. Thank you; I really appreciate that.
I like this idea of giving the burden to the system and removing it from the patient and provider.
I am thinking about Moncton, New Brunswick, and we have a lot of homeless people on the streets with so many complex needs. They are never going to remember a password. So if we want equitable access to be possible for any Canadian, what could that look like in situations like theirs?
Ms. McGill: I’m happy you asked, because this is the population that I care for. I work with a clinical team that is trying to lower barriers for people experiencing homelessness.
One way that we’re trying to navigate this is by bringing the care to them through mobile access, which is by bringing a van that’s equipped with medical supplies and carrying clinicians who are trained and able to provide this level of care. It is also by understanding the challenges in navigating a system as someone who is homeless, fighting to survive every night, trying to find their way and trying to get people to listen.
So, in terms of the people coming to the patients, we need to change the way we expect patients to access and navigate the system. We need to provide support and system navigation to them.
Many Canadians will be able to access digital information. This particular population requires additional support and funding, as well as training for our clinicians to realize this and know we have to change the way we deliver care and support them in accessing this information.
This would need to be supported by clinicians accessing the information, printing it, reading it or handing it to them, creating pamphlets and creating ways for them to understand their health history and results.
You’re right: They can’t go online to look at it. We can help them and teach them in different ways. That’s part of health innovation. For instance, can there be central areas where they can access information or central hubs where they can be supported in accessing this information?
I’m really glad you’re thinking about this, because it will be a really important part of the bill in the future, namely, how we ensure all Canadians have access to digital information about their health.
Ms. Snowdon: To add to that, I have seen two models: one in Louisiana with a very impoverished population and one in Ontario. They give the individual the digital tool preloaded and connected to their provider teams. It was profoundly impactful and effective because it gave every one of those individuals the chance to connect to their teams. In the Ontario case, these were exceptionally complex mental-health challenges with youth on the street. They elected to use cellphones. They strapped that cellphone to their chest, but they had a lifeline, connected to their social worker and team. The results were impressive as to how they were able to proactively know when they were going to get into crisis, let their provider know and they worked together to prevent that crisis.
I’ve seen that same model in Louisiana. I have not seen it anywhere else in the world, and I work extensively in Europe and Southeast Asia. However, it does work to give them the tools and engage them as people, as we would expect for any patient, but to do so in a way that meets their needs and starts with them, who they are and what they want to achieve.
Senator Kingston: I would like to shift focus a little bit. It has been said that with the publicly funded health care system in Canada, one probably unintended consequence is that there is a lot of data that could be available for the purposes of health research if, indeed, we had better interoperability between provinces and jurisdictions.
I’d like each of you, including Dr. Mendez online, to comment on that particular subject.
Ms. Snowdon: Canada is a very rare country. We are one of the very few I have found in the developed world in which every individual Canadian has a unique identifier in terms of their health card number. That opens up phenomenal opportunities, not only for research but for economic value. Imagine testing a new product, procedure or care delivery model when you can individually identify every patient in the country.
We are also a culturally diverse population that represents much of the world.
So, this is an opportunity that I have long hoped we could advance and leverage. We haven’t, but we are holding the keys to an incredibly impressive opportunity to much better understand what care delivery models work best for whom and under what circumstances best outcomes happen so that we can flexibly adapt those care models so every Canadian has the opportunity.
The economic value in new therapies, medications and procedures is in the billions of dollars, and that’s really where I see Canada’s opportunity for significant progress.
Ms. McGill: In terms of clinical practice, quality improvement and improving patient outcomes, right now, there is an electronic medical record that exists in the clinic where I do my research and clinical practice. I cannot extract data from that electronic medical record to make meaningful, quality improvement initiatives happen. We pay research assistants to manually extract data.
When we think about the research know-do gap, we can know a lot more and do a lot more if we have access to this data. Also, we can do it a lot more quickly, but, right now, it’s slow and expensive.
The data exists; it’s there, but being able to extract it is a problem. This is unintentional data blocking. This is data that could make meaningful differences in how we deliver and track care. We know, with our individual patient encounters, how they’re doing because we’re seeing them and we have their data right in front of us. When we think about our patient rosters or the cohorts of patients we’re taking care of, do we know how we’re doing with diabetes care with this particular patient cohort — someone’s family practice? How well is it doing? How well are they doing with hypertension management? What more could I be doing for these patients? What implementations could I initiate to improve their health care?
Having that data would be incredibly meaningful, but it’s very challenging to access.
Senator Hay: Apologies for showing up late. I’m really interested in this conversation. I’m going to pull a thread on what you were just speaking about. It made me quite uncomfortable; maybe you can shed some light.
I’m worried about consent, first of all, as you speak about data. Then you moved to identifiable data and the richness of being able to use identifiable data for research.
Of course, consent is everything, and informed consent is more what I mean, versus aggregate, non-identifiable data, which is also very valuable in research.
Maybe talk about the difference between the two, because I would not want a researcher to say, “I wonder if Katherine Hay’s health data would tell us about X, Y and Z,” without me being informed on that. And that’s one data set on one person. I’m not a researcher. When you talk about extracting data, again, around identifiable versus aggregate non-identifiable, I’m sure that AI technology could assist. For my follow-up, I do want to get back to U.S. companies, but perhaps you can answer that question — if there is one in there.
Ms. Snowdon: There are many questions there, and between Ali and me, I’m sure we’ll get to a number of them.
There are very specific privacy policy frameworks in this country for accessing any identifiable data. That’s why it takes researchers years to conduct their work — but for good reason.
The critical piece is transparency. Does every Canadian have the opportunity, and is it transparent to them that they have a choice in what data is being accessed and for what purpose?
Here is one small example, and there are 3,000 of these every year: If, tomorrow, we had a major drug shortage that affected you as a Canadian patient, would you want to know? That’s a choice to make because if you don’t know — and the only way you’d know that is if you showed up at the pharmacy and they told you it was back-ordered. Most patients ask, “What do I do now?” They drive to pharmacies all over their province to find some.
The question is the context and the decisions, but confidence builds when you have transparency and you are informed. That’s what informed consent is about. We would be much better served by asking and engaging our populations on what data they would like shared. That’s how you proceed. It will never be “Yes, it’s wide open.” AI will manufacture that data, by the way. It will give you an answer, but it will hallucinate and create the answers for you, and that’s what makes it even harder to know what’s real and what’s not. The most common large language model today has a 67% error rate that we know of.
It’s a complicated question, but my experience in multiple countries regards transparency. Do I know what my data is going to be used for? How do I ensure that it is used in the way I want it to be? Many countries have proceeded with a number of models to ask those questions.
Senator Hay: That is overseen by a privacy commissioner and the General Data Protection Regulation, or GDPR, and so on in Europe.
Ms. Snowdon: Yes.
Senator Hay: AI is a reality; the hallucination bit isn’t necessarily always consistent. We can’t assume all AI is hallucinating as well, and that is the job of researchers to determine. Did you have something to add?
Ms. McGill: I think your question is excellent, and I second Ms. Snowdon and her response.
I’ll speak a little more about this aggregate non-identifiable data that is incredibly meaningful and hard to get.
Senator Hay: Even with aggregate non-identifiable data, how you capture it will be different in each scenario.
Ms. McGill: Absolutely. Within individual clinical practices across Canada, gathering that data about our own patient cohorts is very challenging — getting that data and extracting it from the systems that we have now. We have researchers who do larger-scale studies who can inform clinicians.
For us to know that changes we’re making in the evidence-informed practice that we’re implementing are working, as well as what more we could be doing and what more we could learn? That’s where that data is incredibly helpful.
I agree in terms of privacy. When we do research, we certainly go through research ethics boards, applications, reviews and peer reviews. They’re very meaningful processes to go through to ensure that we protect participants in our studies and that they’re aware and informed — they’re giving informed consent around what they’re participating in.
Senator Hay: That is very helpful. And you see connected care as the first step in the right direction.
Ms. McGill: Yes. It is foundational.
Senator Senior: Thank you. Your response to Senator Arnold made me want to explore a little bit more. You mentioned the future should be hybrid, Ms. McGill. As you responded to Senator Hay, I wanted to pull on that thread a little more in terms of informed consent and what it looks like. When I think of updating my phone and informed consent, I just scroll to the bottom and click because I won’t even understand it, let alone how long it’s going to take me.
As we get more digital, I worry that’s what informed consent is going to look like because, in order to get service, in order to download an app or whatever, I have to consent.
If you can, please talk about that a little bit more. I’m also thinking about community health centres, or CHCs, and the critical work they do for the unhoused, for mental health and for those who have the least access and probably need the most service. If you can, please talk about what the hybrid model looks like but also that consent piece.
Ms. McGill: I agree. Having to do a consent form online about your health, I would be very cautious in proceeding to that. I believe that we have a duty as researchers and clinicians to ensure our patients understand what we’re going to be doing or what we’re proposing in terms of research or clinical practice. It is our duty to ensure that. So if we’re talking about a hybrid model, that needs to be done with the presence of somebody gathering consent, being able to determine that person is informed enough to be able to consent to this going forward. That is necessary.
There are opportunities in research and community-based practices for patients to enter practices knowing that this is a research-based practice, getting that information ahead of time and agreeing or not agreeing. As Ms. Snowdon said, it is them being able to make that decision themselves, and that should be the way forward.
I haven’t done that yet myself. I plan to learn more about it. How can we make it the norm that parents are given this opportunity when they’re entering a practice or in practice already and are approached and asked how they would like their data used? Can I explain to them what we’re going to be doing and what studies and programs we’ll be working on, then give them a choice?
I believe this needs to be done in person. There needs to be eye contact. There needs to be an understanding that this person is well informed and able to make the decision.
Senator Senior: Thank you. Ms. Snowdon, in terms of the work CHCs are doing, and you kind of alluded to that in your response to Senator Arnold, how do you see CHCs tying into this?
Ms. Snowdon: Any facility, long-term care, primary care — there is a very wide range here. I study and measure digital maturity in health systems globally, and hospitals have fairly advanced digital maturity, meaning they have data from pharmacies, labs and EMR systems in the community. It’s entirely paper-based. I’m doing a study on rural Canada. We can track the moose meat and the hunter who culled the moose. We can’t track whether someone has access to their insulin to manage diabetes. So it’s entirely manual and paper-based. The connectivity between clinics and providers, if they’re on any digital systems — and that’s a significant “if” — those are completely unconnected. So, in the community, we have nowhere to go but up.
The Deputy Chair: Given this bill is enabling legislation as a first step, is there anything that we need to do in terms of improving the bill or do you think that all the bases are covered at this time?
Ms. Snowdon: The bill requires data sharing among the vendor community. It will advance standards that remain to be identified because they change very quickly.
The next piece that would be helpful is that interprovincial and interterritorial collaboration on movement of data across regions and systems. Until we get to that — and that’s a challenge in a federated system — it will be harder and perhaps longer to advance. It’s not impossible, of course, but that FPT sort of collaboration will be very central to achieve what this bill is setting out to.
The Deputy Chair: Thank you.
Ms. McGill, do you have a short answer?
Ms. McGill: I will build on what Ms. Snowdon said. Whenever we make a change in a complex system, there is the potential for significant changes elsewhere in the system, which could be positive or negative. I believe that the bill, as it stands right now, is an important and foundational first step in order for us to understand, when we make this change, what this will look like and how it will impact the system elsewhere. I believe, at this time, this is the right foundational first step.
The Deputy Chair: Senators, this brings us to the end of the first panel. I thank our witnesses for their expertise, for being here in person and to Dr. Mendez for already committing to submitting answers. Thank you so much for your testimony today.
For our second panel, we welcome, from INOVAIT, Philip Boyer, Program Manager, Health Data Innovation; from Digital Governance Council, Keith Jansa, Chief Executive Officer; by video conference, from QHR Technologies, Mike Checkley, President; and from the Ontario Medical Association, Dr. Zainab Abdurrahman, President, and Robert Fox, Chief Executive Officer, OntarioMD. Thank you for joining us today.
For your opening statement, you each have five minutes, which will be followed by questions from the committee members.
Mr. Boyer, the floor is yours.
Philip Boyer, Program Manager, Health Data Innovation, INOVAIT: Thank you, Madam Chair and committee members, for the opportunity to appear before you today.
INOVAIT supports Bill S-5. An interoperable health care system is foundational to the health and well-being of Canadians and is critically important to our AI innovation ecosystem. INOVAIT is Canada’s national network for image-guided therapy and artificial intelligence, hosted by Sunnybrook Research Institute and funded and supported by Innovation, Science and Economic Development Canada’s Strategic Response Fund.
INOVAIT has directly supported 103 multi-partner, image-guided therapy AI projects involving 41 academic and clinical institutions and 95 companies across Canada, the vast majority of which are Canadian small- and medium-sized enterprises developing technologies on the forefront of medical innovation.
These are technologies like MIMOSA Diagnostics’ handheld device, which was used within the homes of high-risk diabetic foot patients by community nurses in rural New Brunswick during the COVID-19 pandemic to accurately determine which patients needed urgent attention, resulting in no amputations or deaths at a time when amputations were escalating. However, as we’ve heard from other witnesses, the connectivity to support remote and virtual health care technologies does not exist for a large proportion of rural and remote communities in Canada.
These are technologies like Altis Labs, an AI solution that analyzes the CT scans that Canadian cancer patients already receive so that drug companies developing new treatments have an earlier and more accurate picture of whether a therapy is working on a patient. The adoption of the Altis Labs technology has been greatly slowed by non-standardized data and customized integrations across our care system, meaning more Canadian cancer patients remain on ineffective drugs longer than they need to be.
And these are technologies like 16 Bit’s device, which uses routinely collected X-rays to screen patients for an elevated risk of osteoporosis and has already screened more than half a million Canadian patients. But 16 Bit has been prevented from being adopted into some Canadian health care settings due to insurmountable vendor integration fees and gatekeeping, even though doctors want to adopt their technology.
The development of artificial intelligence technologies like these and many others like them requires access to high-quality, standardized data so they are safe, accurate and effective when deployed in health care settings. By prohibiting vendor data blocking and requiring the use of common data standards, Bill S-5 would level the playing field for domestic research and innovation by simplifying market entry and accelerating the growth and adoption of technologies at scale.
The Networked Health harm framework identifies nine forms of data-related harm, including breaches of privacy and security, but also failure to support health innovation, failure to use data for the public good and harm to workforce well-being. Our health care system is overburdened, clinicians are burning out and people are dying with their privacy intact. We have a moral obligation to use our data because data saves lives.
This legislation marks an important opportunity to evolve from a culture of risk-averse data custodianship to data stewardship and patient-centric care. AI and innovation are already helping to address our capacity challenges, as we’ve heard with the example of AI scribes. Data, AI and innovation are how we build our economy, make Canadians healthier and save more lives.
We have three recommendations: First, data blocking should be carefully defined to ensure that we support the legitimate data access needs of Canadian researchers and innovators.
Second, regulations should place reasonable and necessary guardrails on data access and integration fees.
Third, common data standards and regulations should facilitate the ready adoption of compliant third-party technologies into health information systems.
Health information technology vendors are partners that perform essential functions in our health care system. We must ensure they are enabled and required to share data for the public good, and we need to work with them to ensure regulations are fair and effective.
In closing, data is Canada’s competitive advantage. The estimated $9.4-billion cost from a lack of interoperability does not capture the scale of the economic opportunity to support Canadian innovation. The window is closing. If we are to leverage our incredible research talent and AI expertise into a globally leading health care technology industry and ecosystem for the benefit of Canadians and Canadian health care, we need to support the data, interoperability and adoption needs of innovators.
The connected care for Canadians act marks an important step toward that vision.
Thank you, and I welcome your questions.
The Deputy Chair: Thank you, Mr. Boyer.
Keith Jansa, Chief Executive Officer, Digital Governance Council: Madam Chair and honourable senators, thank you for the opportunity to appear before you today on Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking.
I commend the sponsor of this bill and the senators of this committee for recognizing the importance of addressing a persistent structural failure in our health system. Without interoperability, there is no continuity of care, no reliable access to patient information, no ability for systems to function as intended and no meaningful opportunity for patients to fully participate in their care.
Bill S-5 rightly identifies the consequences when health information does not follow the patient, is inaccessible at the point of care or is unavailable to individuals. These gaps undermine patient safety, community care and public trust. The act sets a clear policy direction; however, as written, this bill does not solve the problems it correctly identifies.
As an expert in digital governance and standards, my two fundamental concerns are as follows: First, the act cedes legislative control by deferring essential matters to regulation. The act sets out an important objective but does not fully define the rules, obligations and limits that should be established in statute.
Second, the bill applies to health information technology vendors, but the barriers it seeks to address extend across the entire health system, from system design and institutional practices to contractual obligations and system operators. If the law does not clearly define what is required or prohibited across the spectrum of care, those barriers will persist regardless of vendor compliance.
To enumerate these concerns, consider the following examples: In clause 2, the definition of “data blocking” leaves the core concept to regulation rather than clearly establishing in statute the conduct it is meant to capture. This is reflected again in clause 6. In clause 8, the act confers broad regulation-making powers without clear statutory limits that could fundamentally change the law in ways that do not meet its purpose.
As such, I have three recommendations for your consideration.
First, amend the scope of the act to extend across the whole health system and be grounded in outcomes. It should apply not only to health information technology vendors, but also to providers, institutions, system operators and those establishing policies or contractual terms that affect access to health information.
Second, amend the act to constrain its own regulation-making powers. Regulations should not be able to redefine core terms or alter the law after it has been passed. The prohibition on data blocking must apply to any practice that prevents, restricts, delays or discourages access to or exchange of that information.
Third, address the governance of standards. Interoperability depends on standards, but without safeguards, those standards can be co-opted and used as tools of exclusion. The act must require that standards be based on internationally recognized, consensus-based processes, including those reflected in Annex 3 of the World Trade Organization’s Technical Barriers to Trade Agreement. This ensures openness, transparency and non-discrimination.
Honourable senators, this bill identifies the right problem, but as written, it does not solve it. I have provided proposed legislative text in the materials I have shared with the committee to address these issues directly.
Thank you. I look forward to your questions.
The Deputy Chair: Thank you, Mr. Jansa.
Mike Checkley, President, QHR Technologies: Thank you, honourable committee members and Madam Chair, for the opportunity to speak to you today.
My name is Mike Checkley. I am President of QHR Technologies. We’re more commonly known as Accuro to Canadian clinics and physicians. We are an electronic medical record vendor. We are widely adopted across the country with over 20,000 physician subscribers. We exist within medical clinics, so not hospitals but community clinics, both in urban and suburban areas. We also operate a patient portal app, or a patient access-to-care app, with 4 million Canadian patients subscribed.
I’m here to vocalize our organization’s support for Bill S-5 and to offer a perspective on its components. These are, of course, interoperability and data blocking as two distinct and positive advancements.
Regarding interoperability, in my 20 years of building this EMR system, I have seen clinics go from fully paper charts to digital, data-driven workflows. As part of this EMR build-out, we have experience establishing interoperability with over 100 different systems across the country operated by provinces, labs, hospitals and others.
I’m not here to declare complete victory on this. I know that health data does not flow to all places at all times when needed. I simply want to point out that provinces and vendors have worked together for years on interoperability, and there are many successful implementations, such as lab results that flow nearly instantly to physician EMR inboxes and patient portals.
Bill S-5, as written, in my view, is about accelerating these. We’re supportive of the language of the bill, but its impact will depend on the execution of next steps. It will be critical that federal efforts do not duplicate ongoing federal and provincial engagement, adding layers of complexity, cost and, potentially, administrative burden to clinicians. Bridging to existing project standards and, importantly, clinician workflow is critical.
Simply put, if you want to compete with the fax machine, simplicity and ease of use must be a key design driver. If we slow them down, they will not use it.
On the second topic, data blocking, I want to clearly state that we strongly support legislative measures to ban this practice.
Data blocking is the practice of putting in place barriers when a customer chooses to move to another vendor, and we are opposed to such practices. Two clear examples are: first, fee structures charged to physicians and clinics that scale up with the volume of data as opposed to reasonable flat service fees; and, second, refusal to provide raw database files.
For our part, our customer agreement has a termination clause that commits to providing raw database extracts for a flat fee, which covers the cost of packaging and encrypting the data. I would like to see similar requirements for all vendors: raw databases, not translated exports, and reasonable fees to clinics. Thank you.
The Deputy Chair: Thank you, Mr. Checkley, for your presentation.
Dr. Zainab Abdurrahman, President, Ontario Medical Association: Thank you and good morning. My name is Dr. Zainab Abdurrahman. I’m the President of the Ontario Medical Association, or OMA, and a practising allergist and clinical immunologist. Joining me today is Robert Fox, the CEO of OntarioMD. OntarioMD is a leading organization that facilitates the implementation of technology in health care.
Thank you for the opportunity to contribute our views to your review of Bill S-5. We’re happy to be here today in support of the bill. I recently had the pleasure of meeting with Minister Michel and Deputy Minister Curtis-Micallef to discuss digital health interoperability, and we’re pleased to see the federal government bring forward this legislation.
Safe and secure standards for health data are long overdue, and we support your efforts to move in this direction. Right now, Canada’s electronic health records are disconnected, which blocks timely access to personal health information.
You can travel around the world and have access to your banking information quite easily, but for Canadians, you cannot do the same, even just moving from your home within your province, let alone outside that province.
Health information is not readily accessible or available to share between doctors, which leads to impacts on patient care. It is time to modernize our health care system with secure and interoperable access to data for clinicians and patients.
Access to the right information at the right time will help family doctors, consultant specialists and other health care providers. It allows us to see the full picture and actually deliver the care that patients need. Pan-Canadian standards for secure data sharing will improve care, reduce administrative burden and ensure that patient data moves safely within the circle of care for patients.
Importantly, this bill also places responsibility on those best positioned to implement these changes. Physician consultation and input are necessary to ensure that digital interoperability is practical and user-friendly. OMA is proud to be a working partner of the government and our fellow associations to ensure that the implementation of Bill S-5 is beneficial for patients and physicians nationwide.
I will turn it over to Robert Fox.
Robert Fox, Chief Executive Officer, Ontario Medical Association: Honourable chair and members of the committee, thank you for the opportunity to appear today. OntarioMD is a subsidiary of the OMA, funded through Ontario Health and the Ontario Ministry of Health. Our mandate is to accelerate the adoption of digital technologies for physicians, and we work closely with the digital health vendor community.
I want to begin by commending the Government of Canada for advancing Bill S-5. Interoperability is not a technical enhancement. It is foundational to improving patient care, clinician experience and system sustainability. The testimony you’ve heard reflects a consistent reality: Fragmentation in our digital health systems remains a significant barrier. This legislation is an important first step.
Bill S-5 will drive change in two critical ways. First, it establishes clear expectations and accountability, moving interoperability from voluntary alignment to a system requirement. Second, it reinforces the importance of national standards. Work led by Canada Health Infoway on a pan-Canadian trust framework, alongside efforts from the Canadian Institute for Health Information and OntarioMD on standards, such as a core data interoperability standard, is essential. Interoperability depends not just on connectivity but also on consistent, high-quality and usable data.
However, a key challenge remains vendor alignment. Today, electronic medical records, or EMR, and digital solution vendors largely control integration and product entry. The resulting road maps are often driven by commercial considerations rather than clinical workflows, system priorities or interoperability needs. There is limited leverage to achieve alignment.
For over 15 years, OntarioMD has addressed this through a certification and compliance program that ensures EMRs meet standards for usability, privacy and security. This model should now be expanded nationally to include enforceable interoperability requirements.
Equally important is procurement. By embedding interoperability, functionality and clinician value into centralized procurement processes, governments can better align vendor incentives with system needs. Ontario is beginning to move in this direction through its Primary Care Action Team.
In closing, Bill S-5 is a critical step, but success will depend on thoughtful, coordinated implementation with jurisdictions, standards bodies and industry. We have learned from initiatives that alignment and execution matter as much as policy. If implemented well, this legislation can meaningfully transform how care is delivered across Canada.
Thank you.
The Deputy Chair: Thank you so much. I jumped the gun, but you did it right on time. Thank you to Dr. Abdurrahman and Mr. Fox.
We will now proceed to questions from committee members. For this panel, senators, you will each have four minutes for your questions, and that includes the answers. Please indicate if your question is directed at a particular witness or all witnesses.
Senator Hay: Thank you so much for being here in the room. Mr. Checkley, wherever you are in Canada, nice to see you.
The first half of my four minutes, if we can get it under that, will be for you, Mr. Checkley. You said a couple things. You support Bill S-5. It is not necessarily the full victory, but it is a great starting line, and Bill S-5 is about accelerating — I heard that word — and the implementation will be the success factor if I have that correctly.
My question is this: With so many different systems and vendors across Canada, from hospitals to medical clinics to diagnostic companies, like LifeLabs and so forth, are you confident that implementation will not uncover, perhaps, unknown costs that we don’t see, potential fracturing or inability of these systems to work together or speak together and perhaps disruption — training issues, adoption? Can you just speak about that a bit? Because that’s the success quotient, I think.
Mr. Checkley: I agree. I think that’s well said. If we don’t have the full workflow consideration with the utility of data exchange, it can result in more costs and more administrative burdens for clinicians. As an example, imagine if we just started sharing all patient records with every provider across the country. The physician inboxes would be loaded up with information to review and collate. That’s not necessarily the goal. We need the right information to get to the right place at the right time.
In my view, you must break those priorities down by use case and then start building solutions around those, deciding the most appropriate standard or existing integration to extend, and approach it incrementally with real-world, witnessed workflows in mind. That way, we don’t end up taking a big swing with a bat at a long shot. That’s not how we build software. We build iteratively to ensure it works well for customers and then go from there. I think that approach can be used for interoperability. It is not one thing. It is many things.
Senator Hay: Thank you for that. Maybe I will move to another question. I heard a lot of worry about reasonable regulation or, potentially, overregulation. When you think about it, it can inhibit innovation and interoperability if you have too many regulations. How do you balance that? What advice would you give the government or us as you think of balancing regulation and innovation?
Mr. Boyer: Regulation is helpful when determined in advance. Companies and innovators know what to expect when building devices, especially with shared standards. They only need to develop for specific use-case scenarios. Regulation is helpful in that respect.
I think I mentioned that one of our recommendations is to consider data blocking with respect to innovation and research, is we don’t inadvertently block access to data for those essential reasons as well through whatever definitions are put in place. We just need to be conscious of the fact that there are all these reasons that we may want to share data for research and innovation as well, and we want to make sure that we can still do so.
Senator Hay: Thank you. Mr. Jansa, do you have thoughts?
Mr. Jansa: I think, for me, there is a very specific cabinet directive for lawmaking, and it speaks directly to essential matters or matters of importance that are structured in bills themselves versus regulation. Right now, you have a variety of regulations and regulatory powers that are being proposed in this context with no limits or guardrails with respect to those regulations.
In other words, I’ll give you the example of standards. It says that you can effectively make standards, though it doesn’t say in which way or what guardrails are associated with those standards. As I said in my testimony, that can be co-opted by multinational or U.S. organizations that are, in many ways, jeopardizing Canadian sovereignty at the moment.
It’s important that we structure in the statute very specific requirements around that. Standards need to be open, transparent, consensus-based, multi-stakeholder driven and, again, aligned with the World Trade Organization around technical barriers to trade.
Senator Osler: Thank you to all the witnesses for being here today.
Bill S-5 has been described as a foundational first step and enabling legislation. My question will be for all of you, and we’ll need to be brief because I’m hoping for four answers.
I’d like you to frame your response with consideration of the to-be-developed regulations.
My question is the same one I asked in the first panel. It’s based on a brief that we have received from Dr. Ewan Affleck and Mr. David Helliwell. Their brief talks about why Bill S-5 will only help Canadians to gain access to their health data if it applies to all parts of Canada’s health ecosystem and not exclusively tech companies:
All parties handling health data, not just technology companies, must be compliant with the same nationally established health data and exchange standards.
So, they’re asking us to consider that the regulations flowing from Bill S-5 could and would apply to more parts of the health care systems, not just electronic health records.
I’d appreciate your thoughts on that. I’d like to start with Digital Governance Council, then OMA, then INOVAIT and then QHR.
Mr. Jansa: The short answer is yes. We need to ensure that the scope and application of this particular bill extend beyond technology vendors.
Interoperability is not simply a technology issue. It is, as well, with respect to the providers and the culture within the health system, et cetera, that are preventing this and, in many ways, data blocking. As such, it needs to be scoped into this legislation.
Senator Osler: Thank you.
Mr. Fox: Patient care needs to be comprehensive. Patients move between different providers in our health care system, and that’s the basis of our structure. So there needs to be inclusivity across all these providers to have accountability for that data interoperability and sharing. Somebody once told me that health care is a team sport, and that’s exactly what this bill will have to support.
Mr. Boyer: Yes, I agree with Dr. Affleck and David Helliwell’s brief. There needs to be a duty to share information for the benefit of patients and health care in Canada. I think this bill is a good first step toward that through establishing regulations around the vendor side.
We can get there, I think, on the custodian side as well.
Senator Osler: Mr. Checkley?
Mr. Checkley: I also agree. I think it’s important to mention that, you’re right, the EMR vendors, we work for our customers. If they don’t have these goals and priorities in place, then it’s very difficult to push those upon them. I agree with other statements mentioned by the other witnesses. It’s a team sport. We have to work together and have our priorities aligned so that we can make movement on these important initiatives.
Senator Osler: Thank you, all, very much.
Senator Muggli: Thanks, everyone, for being here. I think I’m going to continue on with the regulation piece.
Mr. Boyer, you talked about guardrails. Could you give a couple of examples of what you think would be the top three guardrails that need to be in regulations — unless you think those need to be articulated in the actual legislation?
Mr. Boyer: I think the regulation is reasonable because it allows the flexibility to develop. As technology is constantly changing, we’re understanding new needs around regulation that may happen in the future.
We’ve seen this through companies as well. We’ve heard from them about data access fees being used as a kind of anti-competitive behaviour to prevent companies from succeeding in certain health care settings, similar to the integration fee as well, in adoption of third-party technologies we see developing with SMEs in Canada, preventing them from competing with incumbent vendors. Those are the major ones.
Also, on the imaging side, because those are the companies that we represent, standards also have to elaborate on shared standards on imaging as well as on EHRs and structured and unstructured data. We want to make sure that all the data we have in the system can be shared.
Senator Muggli: Do you think there are things that will end up in regulations that actually should be in the legislation?
Mr. Boyer: I’m not sure. I think the way that the legislation has been structured allows for regulation to account for what would be needed to address those questions, yes.
Senator Muggli: Thank you. I have a quick question for Mr. Checkley.
As a vendor, do you anticipate costs to your company in order to open the lines for full interoperability? What does that look like for you?
Mr. Checkley: Yes, that’s a good question. Thank you for that.
The answer is yes. We will have to continue to invest in what we’ll call interoperability capability.
We have approximately 12 dev teams right now, of which anywhere between 2 and 3 are focused on what I will call data-exchange-type projects operating in many different provinces. We have, at any one time, up to 20 being asked of us, and they’re all different for different use cases.
I think that one of the key messages here is this: If we want to accelerate this, we should also look at the scope of these standards because fax machines are so simple. If we can simplify the scope of these specifications, balancing utility with data, I think that would be helpful, from the vendor perspective, to allow more people to participate.
As one of the larger vendors, we’re perhaps better positioned to do this. I remember when we were smaller, faced with this with only a handful of developers. It was impossible. I think we should balance utility and speed to market with the data requirements and find that way as a goal to accelerate.
Senator Muggli: I imagine there are training costs as well, to provide training for users.
Mr. Checkley: Yes, exactly. That is a big part of it too, with as many customers as we have.
Rolling out these integrations is maybe 30% technical. The rest of it is rollout, launch, training, change management, support and configuration. Even though our customers use the same software, they all have it configured very differently.
A urology clinic, a plastic surgery clinic and a primary care walk-in clinic will have configured this system very differently. Each of those things must be looked at right down to the workflow level to ensure it’s mapped and safely interpreted through the data exchange.
Senator Arnold: Thank you all for being here. Mr. Boyer said two lines that I want to repeat because they were both really good: This is an opportunity to level the playing field for Canadian innovation. Clearly, this sector is attracting and nurturing a lot of Canadian innovation. Second, which I think was so good, he said that people are dying with their privacy intact. Thank you for that.
But my question is going to go to Mr. Checkley. First, thank you for being here. We haven’t had a lot of vendors here, so this is a great opportunity.
I don’t know if you can answer these questions, but you did mention one of the things that you wanted to ensure did not happen was the federal government duplicating or triplicating effort here. Can you give us a tangible example of your fear around that?
Mr. Checkley: For many of the provinces in Canada — we’ll say almost all because I can’t think of an example where this doesn’t happen — we pull lab results down from hospital labs, community labs and sometimes provincial lab systems. Over more than a decade, we’ve built the technical coding, if you will, to interpret that information. If a new layer comes across on top of it, we must consider whether we are looking to rebuild all of them. That would be a cost not only for the vendor community but also for the provinces. That needs to be taken into consideration.
The standards, as they come into place, have to understand that we are some of the way there with interoperability conceptually. We have to acknowledge the difference in systems and existing connections and see if it can be built off those. I don’t think there is one simple answer. That is oversimplified by the word “standard.”
Senator Arnold: Thank you for that. If you’re allowed to say, where is your data stored?
Mr. Checkley: In Canada.
Senator Arnold: Thank you. Can you tell us via whom?
Mr. Checkley: It’s our own data centre that we operate. We co-load at a secure location with a backup to Microsoft Canada for disaster recovery.
Senator Arnold: Terrific. Thank you very much.
Senator Petitclerc: Thank you all. This is very helpful for us in the study of this bill.
I had a question on regulation as well, but it’s been covered so well. Thank you for that.
Mr. Fox, you talked about the importance of optimal vendor alignment. I was trying to get a practical picture of what that looks like. What is non-optimal alignment? What is it that we’re looking for? Through this bill, who will make it happen? Is it in the regulation? I’m trying to get an idea of how that will work on the ground. What will it look like?
Mr. Fox: Great question, senator. It will be a challenge, for sure. We’ve struggled over the years to get standards moving. We have a Canadian standard; we have provincial standards. That alignment will be really important for us, to have those standards, and then we can get into how we work with the vendors.
Vendor relationship is critical because we’re a team. A team will be able to take the innovation, the road map for the system, and decide how we will implement that to invoke change.
Mr. Checkley talked about labs, for example. Just to implement a lab alignment with QHR, we work in terms of building interfaces and alignment with goals and objectives for the province, in terms of rollout to physicians and getting them trained and adapted to the systems. That’s a heavy lift. That will require strong leadership and governance.
I also suggested two ways of aligning for optimal adoption of interoperability and integration. The first one is around the certification process that OntarioMD leads. We do that in Ontario and New Brunswick. We clearly identify the rules, regulations, requirements, functionality, privacy, security and other elements that an EMR must have in order to be used in those two provinces.
That can be expanded to include more interoperability, data blocking and data governance components, as a rollout opportunity for this. That is just one suggestion of what OntarioMD did. Canada Health Infoway, or CHI, we work closely with them. I’m sure we can identify proper strategies for that.
The second component I want to highlight is around procurement. As we buy these systems, it’s important, whether it’s an EMR or AI solutions or even, as was referenced earlier, applications, that we scroll through — that we accept all the terms and conditions. There is a better way of doing that, to be negotiating centrally or to control some of those contract terms so that they align better with the system and protect clinicians and patients better. That should be top of the list for implementation as well.
Senator Petitclerc: I think I know this answer, but there were consultations before the bill, so, when it comes to regulations and standards, who should be at the table? Anyone can answer. Is it your view that, for it to be efficient and to work well for Canadians, there needs to be some sort of a co-creation, more than just consultation? I see nodding, but I don’t know if someone has a little more to say on that.
Dr. Abdurrahman: Absolutely. Actually, the co-creation and co-development are essential for success here. When we talk about the workflow, you need to have all the different people wherever it touches, whether it’s those who are actually creating the applications, the vendors, the actual clinicians, the physicians, the other health care providers as well as the patients. Also, when we’re talking about certain vulnerable populations, their voices should also be at the table. When we’re talking about things like Indigenous data sovereignty, we want those voices also at the table to talk about this. That’s how you gain success: by having all of these voices in the room to create and co-create. Then you also have the buy-in. You have the voices there. We’ve had the concerns raised and addressed. That’s actually where you will get the buy-in and the success in Bill S-5.
Mr. Jansa: I would add that it must be multi-stakeholder driven, as mentioned, and consensus-based. As written, the bill does not guarantee that.
Senator Petitclerc: Thank you.
Mr. Checkley: Also, gathering the digital health leaders who represent different provinces, like OntarioMD does in Ontario — there is an equivalent to OntarioMD in every province. Bringing them together to help align priorities could allow us to take advantage of their great work that has been done in different provinces and to leverage that to accelerate and create more practical standards.
Senator Petitclerc: Thank you for this.
The Deputy Chair: Colleagues and witnesses, this concludes the witness testimony scheduled under the work plan for this bill.
The committee’s next meeting, on Wednesday, April 29, at 4:15 p.m., will be dedicated to clause-by-clause consideration of the bill. Senators wishing to move amendments or append observations to the report are kindly asked to submit them to the committee clerk in advance of next week’s meeting.
Finally, Health Canada has provided the committee with binders for the clause-by-clause consideration of Bill S-5. Physical copies are available in the room today. Please see the clerk after the meeting to obtain your copy. Digital versions will be circulated shortly by email.
I thank all the witnesses for their time, their expertise and their candour and for being with us today.
(The committee adjourned.)