THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, April 16, 2026
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 10:35 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 Rosemary Moodie (Chair) in the chair.
[English]
The Chair: Senators, I call to order this meeting of the Standing Senate Committee on Social Affairs, Science and Technology. My name is Rosemary Moodie. I’m a senator from Ontario and the chair of this committee.
Before we begin, I’d like to do a round table and have senators introduce themselves.
Senator Burey: Sharon Burey, senator from Ontario. Good morning.
Senator Senior: Paulette Senior from Ontario.
[Translation]
Senator Boudreau: Good morning. Victor Boudreau from New Brunswick.
[English]
Senator Arnold: Dawn Arnold, New Brunswick.
[Translation]
Senator Petitclerc: Chantal Petitclerc from Quebec.
[English]
Senator Hay: Katherine Hay, Ontario.
Senator Cuzner: Rodger Cuzner, Nova Scotia.
Senator Osler: Flordeliz (Gigi) Osler, Manitoba.
The Chair: Thank you, senators. Today, the committee resumes its examination 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 of Canadians Act.”
For the first panel today, we welcome, by video conference, from the Province of Nova Scotia, Dana MacKenzie, Executive Deputy Minister, Department of Health and Wellness; and Scott McKenna, Chief Information Officer, Nova Scotia Health. From the Government of Nunavut, also by video conference, we welcome Tracy MacDonald, Chief Information Officer, Department of Health. Thank you all for joining us today.
For your opening statements, you will each have five minutes, followed by questions from our committee members. Ms. MacKenzie, the floor is yours.
Dana MacKenzie, Executive Deputy Minister, Department of Health and Wellness, Government of Nova Scotia: Thank you, chair and honourable senators. I appreciate the opportunity to appear before the Standing Senate Committee on Social Affairs, Science and Technology to speak in support of Bill S-5.
I am pleased to be here on behalf of Nova Scotia to share our experience and perspectives on how this legislation better supports health outcomes for Canadians through improved access, continuity of care and collaboration across jurisdictions.
The bill supports the objectives of the Working Together to Improve Health Care for Canadians Plan by strengthening the foundations of a connected, patient-centred health system. From Nova Scotia’s perspective, this legislation addresses practical challenges that directly affect patient experience, health equity and system performance.
I’m going to speak for a moment about the Nova Scotia experience related to patient access and equity. In Nova Scotia, we have focused our digital health efforts on improving patient access to information and reducing barriers to care. Through the YourHealthNS digital platform, Nova Scotians can securely access key elements of their health record, including primary and acute care records, laboratory results and diagnostic imaging, immunization records and upcoming appointments.
Nova Scotia is a province of approximately 1.1 million citizens. We now have more than 800,000 downloads of the YourHealthNS app. This uptake demonstrates a strong public demand for transparent, accessible health information. For patients, particularly those managing chronic conditions, caring for family members or navigating multiple providers, access to their own health information supports continuity of care and informed decision making.
I’m now going to talk about the system’s challenges addressed by this bill. Despite our collective efforts at the federal-provincial-territorial, or FPT, level, significant challenges remain across Canada. Health data continues to be fragmented across care settings, organizations and jurisdictions. Interoperability remains limited, even where substantial public investments have been made.
Bill S-5 also addresses data-blocking practices that can limit innovation and restrict appropriate access to health data. Over time, those data-blocking practices can entrench vendor dependence by provinces. They can increase costs and make it more difficult for health systems to adapt to changing population and workforce needs.
These challenges have real social and clinical impacts. Patients are required to repeat their health histories because systems are not talking to each other. Providers lack timely access to complete information. Transitions between care settings are less safe and less efficient.
Maintaining the status quo poses risks to continuity of care, patient safety and quality. It also contributes to administrative burden for clinicians and care teams at a time when health human resources are under significant strain.
From a social and population health perspective, fragmented health information makes it harder to plan services, support public health and identify emerging needs. Most critically of all, we have witnessed tragic situations where a lack of access to key health information at the right time and place has had devastating consequences for patients and families.
Interoperability is an enabler of better health outcomes. It is a key enabler of a high-quality equitable health system. It supports seamless care across settings and jurisdictions; better clinical decision making; reduced administrative burden for providers; meaningful access for patients to their health information; and improved system planning, public health surveillance and research. Achieving this requires collaboration. No single jurisdiction can address these challenges in isolation. Nova Scotia does not currently have provisions similar to those in Bill S-5 in our legislation. As a smaller jurisdiction, our ability to influence vendor behaviour is more limited.
National requirements, such as those in the bill, would help create consistent expectations for vendors across jurisdictions, including smaller provinces. Bill S-5 provides a shared framework that supports federal, provincial and territorial alignment while respecting jurisdictional roles and building on existing progress.
From Nova Scotia’s perspective, Bill S-5 represents an essential step forward but not a complete solution. We support the bill and its objectives, and we recognize that sustained collaboration across federal, provincial and territorial partners will be required to realize its full potential. This is a nation-building project. Ultimately, this work is about improving health outcomes and experiences for Canadians.
Thank you for the opportunity to appear. I look forward to your questions.
The Chair: Thank you, Ms. MacKenzie. Ms. MacDonald, you have the floor.
Tracy MacDonald, Chief Information Officer, Department of Health, Government of Nunavut: Good morning, Madam Chair and honourable senators. I thank you for the opportunity to appear today.
My name is Tracy MacDonald, and I serve as the Chief Information Officer for the Government of Nunavut, Department of Health. In my role, I am responsible for the systems that ensure health information is available to support care delivery across our territory and with our external partners.
I am here today to speak in support of Bill S-5 and share why interoperability is particularly important for Nunavut.
Nunavut faces unique health care challenges. We serve 25 communities spread across a vast geography, across three time zones and with no road access between them. All of our communities are fly-in, and while some care is delivered locally through virtual and visiting specialists, access to higher levels of care often requires travel by air.
We have made important progress in expanding access to care. All 25 community health centres provide ambulatory care, primarily delivered by nurses in the communities, with physician support based mostly in Iqaluit. Nunavut has also established virtual care services, and specialists travel into the territory to provide in-person clinics. However, these services are typically available on scheduled clinic days and are not always accessible when care is needed. As a result, timely access to care and the information required to support it remain a challenge.
While digital systems are in place, they do not connect. Health information is often fragmented across different platforms, requiring providers to rely on manual processes, incomplete records or delayed information. From a system perspective, this introduces real risk into care delivery.
In Nunavut, interoperability is not just a technical improvement; it is foundational to safe and equitable care. In one case involving a Nunavut patient receiving care across jurisdictions, there were missed opportunities at multiple sites where access to a shared medical record could have supported more informed and coordinated care and potentially a better outcome.
In another instance, a lack of integration between laboratory systems and an electronic health record resulted in test results not being transmitted to the ordering provider. While no harm was ultimately reported, the risk of missed follow-up and delayed treatment was significant. These are not isolated issues. They reflect broader, systemic challenges in how health information flows across jurisdictions.
These challenges are further compounded in Nunavut by language and cultural factors. Inuktitut is widely spoken, and many clinical terms do not have direct translations. This can limit a patient’s ability to fully communicate their medical history, particularly when receiving care outside of their home community. In these situations, providers often rely on their own knowledge of the patient, which is not reliable or safe without complete, accurate records.
Bill S-5 is important because it addresses three system-level gaps. It establishes a framework to ensure health information systems can securely and consistently exchange data through common data standards. This approach allows health information to be shared securely with existing privacy laws and legislation, and it makes sure systems can support that sharing when needed. It sets a clear foundation so health information systems can work together using common standards and stops practices that block information from being shared when it should be.
For Nunavut, this has three impacts. First, it improves patient safety by ensuring that providers have access to the information they need to make informed decisions. Second, it supports continuity of care across jurisdictions so that a patient’s health information follows them throughout their care journey. And, third, it strengthens our ability to deliver care closer to home through virtual and coordinated services, which depend on timely access to accurate information.
From a system leadership perspective, the issue we face today is not a lack of digital tools; it is that those tools do not consistently work together. Bill S-5 provides an important foundation to address that gap.
In closing, interoperability is not about convenience. In Nunavut, it ensures that geography, system fragmentation and communication barriers do not compromise the safety or quality of care for Nunavummiut.
Thank you. I would be happy to answer any of your questions.
The Chair: Thank you, Ms. MacDonald.
We will now proceed to questions from committee members. For this panel, senators will have four minutes for your question, and that includes the answer. Please indicate if your question is directed to a particular witness or all witnesses.
Senator Burey: Good morning, everyone. Thank you for being here and sharing your expertise with us.
My question is for the whole panel, but maybe Nova Scotia would like to get started. I was struck by something you said, Ms. MacKenzie, and I hope I’m quoting you correctly. You said that national requirements for vendor behaviour is something that needs to be addressed. I think that speaks specifically to interoperability and data blocking.
I’m wondering, first of all, if you could share the concerns that you have raised regarding vendor behaviour and whether or not the definition of “data blocking” in the bill is sufficient, and if we have time — I’m sure my colleagues will go on, too — whether “. . . substantially similar . . .,” as referred to in the bill, needs to be further defined.
Ms. MacKenzie: Thank you, Senator Burey, for the question.
Your question asks me to detail some of the requirements of vendor behaviour that need to be addressed. I’m going to hand over the microphone to my colleague — our Chief Information Officer, Mr. McKenna — because he will be able to give you more detailed examples of the hurdles or blocks or gates that exist in the system.
Before I do that, I will talk about your second question, which was about the definition of data blocking. I think it is sufficient because the bill is basically the scaffolding on which the regulatory framework will be built. It will allow for sufficient clarity and flexibility at the same time to ensure that we’re addressing the issue squarely.
Mr. McKenna can provide an answer about examples of some of the gates that have been in place and that need to be overcome.
Scott McKenna, Chief Information Officer, Nova Scotia Health, Government of Nova Scotia: Thank you, Deputy MacKenzie, and thanks, honourable senators.
What we’ve achieved in Nova Scotia is almost against the technology and the equipment that we use in health today. We’ve done that which the bill seeks to do, based on establishing data standards that are international standards — not Nova Scotian, not Canadian, but international. That’s key as we think about this journey and as we go forward.
This comment may resonate with everybody: The financial industry is global. We’ve all moved our finances around in a global economy for decades now, any time, any place, anywhere. We must do better; Canadians demand better. Health is no different.
What we’ve been able to achieve in Nova Scotia, as Ms. MacKenzie discussed — and we are the only jurisdiction in Canada and one of the rare ones in North America to do this — is to bring all aspects of a health record from all aspects of the health system centred around the citizens. Most jurisdictions have a hospital record or a jurisdiction of hospitals. We have brought primary care, pharmacy, virtual care and hospitals together. We’ve really achieved interoperability in Nova Scotia.
This bill is still something we need in Canada. To speak to that, we’ve had to do that with various technologies. We’ve had to do a heavy lift to use established international data standards and to do the lift to map the data.
Ms. MacDonald talked about how we map data across languages. Even the mapping data, technically, from vendor system X to vendor system Y, is a heavy lift and a heavy effort. This bill will enable us to —
The Chair: Mr. McKenna, thank you. I will allow Ms. MacDonald an extra minute to respond so we can get her input on this, even though we’ve run out of time here.
Ms. MacDonald: Thank you, senator, for the question. This is a very important point that you bring up.
In Nunavut, we are connecting to four other jurisdictions at most times. That means it’s potentially four-plus different clinical systems. It is essential that this is a pan-Canadian, national effort and that we work on this together to ensure that we’re able to connect, not only for Nunavummiut who are travelling outside of the territory but for our transient population who often come into Nunavut to work.
Senator Hay: To say “thank you” to our panel is understating the leadership that you all have in the system. Nova Scotia and IWK are great examples of what Nova Scotia is doing around the integrated youth system. You really are doing things that no one else is doing in the country with regard to technology partnership. You have a nice balance around “build, partner, buy.” In Nunavut, it’s Herculean what you are doing with reduced connectivity and equitable accessibility. I just wanted to acknowledge that.
I think I heard Ms. MacKenzie say that this is a nation-building project, and it is. I may ask this question many times. When I look at the health care system in Canada, it is driven by the provinces and territories, the P&T environment. That in itself is a silo. Then, within each province and territory, there are fragmentation and silos. There are different existing technologies in each health care system and community-based environment. How do you see this connected care roll out effectively as a nation-building project?
Ms. MacKenzie: Thank you for the question, through the chair, and I’m pleased to answer.
The nation-building metaphor has struck me. I’ve been in my role for a little more than two years now. Being from Nova Scotia, we’re on the eastern end. The metaphor of the railway building is there. When you’re in health care, that digital infrastructure has an imperative to meet the moment digitally, in the system, so that patients can be treated appropriately along the continuum of care without having to remember the exact medication they’re on. Or they may have challenges where they can’t communicate effectively between their doctor’s electronic medical record and the clinical information system inside a hospital.
As a piece of infrastructure, if you will, the country has to be able to assist. As deputy ministers, we deal with people who are moving between provinces to receive care. There is the portability principle in the Canada Health Act. But our information doesn’t flow if a vendor has decided there’s a data block or if there is a tiered pricing mechanism in place for the flow of that data.
This piece of legislation is foundational to us being able to maximize our ability to allow patient information to flow because the patient is really at the centre of it all. Your question is about how we see it rolling out. The deep collaboration we’ve been able to achieve with Canada Health Infoway, which is leading a lot of this work in the AI scribe space and in the interoperability road map and the connected care work, will be key to how we connect and plug ourselves in effectively together. This piece of legislation is foundational to that.
Ms. MacDonald: I agree with Ms. MacKenzie on all of those. I would also say it’s really important to include our populations and the patients in the process to ensure that they understand and are able to see the outcome. We do have a lot of working groups under way, as Ms. MacKenzie stated, through Canada Health Infoway and Health Canada. There is a lot of collaboration with that. I would like to be able to include our Inuit partners when we’re actually starting that work together.
Senator Arnold: Thank you all for being here with us today. My question will go to the Nova Scotians. I am a New Brunswicker. So many families in New Brunswick travel to the IWK all the time. It has been a few years since my daughter was there. I’m just curious if things have improved at all. Do you have interoperability from a pediatric hospital perspective to the patients that frequent the IWK?
Ms. MacKenzie: Thank you for the question, Senator Arnold. I’ll defer to my colleague Mr. McKenna on the exact system that might exist between the two entities.
Mr. McKenna: Thanks for the question. The answer to that is no. Across our provinces right now, we’ve connected interoperability across Nova Scotia, but, to Deputy MacKenzie’s and Ms. MacDonald’s points, in Atlantic Canada, we know that New Brunswickers travel to Nova Scotia for care, not just for pediatrics but for tertiary care as well, as do citizens of P.E.I. and Newfoundland and Labrador. They regularly send people to Ontario as well.
We talked about nation building. That’s why your record needs to go with you. We need to have standards set across every jurisdiction because Nova Scotia is not an ecosystem in itself, and we cannot exchange unless every jurisdiction in Canada is on the same standards, and, of course, our multitudes of technology are using those standards.
Senator Arnold: You didn’t mention, Mr. McKenna, special care homes. Are they connected in your system right now?
Mr. McKenna: Special care homes such as long-term care?
Senator Arnold: Yes.
Mr. McKenna: They are not connected currently. They are on the ongoing journey. We will be connecting them with one of the data sets to bring in next.
Senator Arnold: Excellent. That’s it. Thank you.
Senator Senior: Good morning and welcome. Assuming that both your regions were consulted in terms of the development of this bill, for Nova Scotia in particular, but I think for both of you, I’m wondering how your experience in patient access and equity and other areas that you thought were critical — do you see those reflected in the bill as it is today?
For Ms. MacDonald, I’m wondering the same but as it would pertain to Nunavut. Would some of the critical things that you were consulted on and recommended be reflected in the bill as it is now? We’ll start with Ms. MacDonald.
Ms. MacDonald: Thank you for the question, senator. I do believe, from my understanding to this point, that we are focusing on making sure that the vendors make systems that are more compatible. In my consultations, it is my understanding that a lot of these critical points will come at a future time, but, currently, as it is and how it’s being addressed is that we’re focusing more on that connectivity and interoperability.
Senator Senior: Okay. Thank you.
Ms. MacKenzie?
Ms. MacKenzie: Thank you, senator. Yes, I feel that the consultation and the framework that has been laid out are appropriate. In Nova Scotia, for example, we are very proud and work very hard on our Health Equity Framework. We want to ensure that the data interoperability piece that underpins the work respects data sovereignty so that our First Nations partners can be as interoperable as possible with the data centre. So that’s a key piece. I know the regulatory regime that’s going to be built will contain more of the granular details, and we’ll be alive to that, and we’re, of course, very interested in ensuring that moving forward as well.
Senator Senior: Thank you. That’s it.
Senator Osler: Thank you to all the witnesses for being here this morning. My question is for Ms. MacDonald, and it’s a two-parter. The first is just for our information: Do you know how many electronic health record vendors, including pharmacies, are in use in Nunavut?
The second question relates to infrastructure challenges. You talked about how connected care is truly an opportunity to improve patient care within Nunavut and across jurisdictional boundaries, but can you share with the committee some of the challenges, such as broadband capacity, in Nunavut communities with health centres?
Ms. MacDonald: Thank you for the question, senator. I am very proud to say we are working on “one patient, one record” within Nunavut. So we do use the MEDITECH instance, and it is used in all 25 of our community health centres. We are also using it for other services, such as mental health, rehab services and public health. We do have a long-term care home that was opened in Rankin Inlet, and they are also using the electronic health record.
We do have a great instance of interoperability within the territory. Our pharmacy systems — we do have integration between two pharmacy systems down South — one in Ottawa and one in Winnipeg — and they are integrated directly into MEDITECH, so we are able to get our patients’ lab results in a much faster turnaround time.
The challenges that we face definitely are with broadband. We have satellite connections. We do not have any fibre connections within the territory. We also have challenges and issues with that. One example was a few years ago when one of the satellites in the sky was defective, and we had to figure out urgently how we were going to maintain connectivity. So there are a lot of conversations about what fibre would look like in our jurisdictions.
I know weather is an issue, especially when we’re flying patients in and out and across to all of our jurisdictional partners. On a regular basis, we are connecting to Ottawa, Winnipeg, Edmonton and Yellowknife. So with medical travel, that can definitely be an issue as well.
As well, just having a transient population and having each one coming from all different areas and trying to manage how we’re keeping up to date with the medical information and making sure we provide the best care possible.
Senator Petitclerc: Thank you to our witnesses for being here today and helping us. Yesterday, we had a witness who said — and he didn’t have time to expand on that, but I wanted to have your view from your perspective and your experience. What was said was that if there are too many demands — implying that maybe Bill S-5 could have too many demands — on vendors and innovators, it could lead them to walk away. So my question, from the angle of your expertise, is whether this is something that would worry you or something that could have an impact. How do you feel about that?
Maybe Ms. MacKenzie first, if you want to go.
Ms. MacKenzie: Thank you for the question. It’s a great question because we want to make sure that, as a system, we are able to engage with the vendors in a way that the innovation is allowed to flourish without creating undue regulatory burden. I think that the bill strikes a good balance in that respect because one thing the private sector really values when they’re creating things is regulatory certainty. This brings a certain level of that to it.
It also creates some clarity and allows Canada to have a standard that will create that certainty for vendors to know that what they have to build or connect or plug in in Nova Scotia will also work in B.C. if the minimum standards are set.
So my colleague, Mr. McKenna, will be far more articulate on this because he’s closer to the technology side. If you’re comfortable, I’ll hand the microphone to him for this piece.
Mr. McKenna: Thank you so much. We’re in common on that because I agree with you wholeheartedly that as we roll this out, as we put the regulations in place, as we adopt standards in Canada — and I say that intentionally, not “Canadian standards” but “standards in Canada” — I think it’s really imperative that we align to international health standards for that exact reason.
Some of the vendors in Canada are Canadian. Many are global. We think about the big ones — MEDITECH, Oracle, Epic — they are global, and we think about the market. That’s what we did as Nova Scotia, but Nova Scotia doesn’t have the market to drive the vendor. Canada has a market globally, but it’s not the U.S. or Europe.
As Nova Scotia adopted one of our standards, FHIR R4, which is an international standard, six months later the U.S. went there, and, later on, Europe went there. We felt pretty confident we’re going to be good. We need to be strategic like that for that exact purpose. Vendors are going to drive their product to other markets so they can sell, so Canada’s standards need to align internationally because that is the market.
Senator Petitclerc: Ms. MacDonald, do you have something to add to that?
Ms. MacDonald: No, I don’t. Thank you.
Senator Petitclerc: Thank you.
Senator Boudreau: Thank you all for being here.
My understanding is you all support the bill, as do I. One comment that was made yesterday by one of our witnesses stuck with me. She said that we’ve been talking about electronic patient records and interoperability of data for the last 25 years. Since then, I would guess, billions of dollars have been invested in platforms and infrastructure and high-speed internet and all of this, and it’s only now — 25 years later — that we’re saying, “Okay, we need to put something in place here to make sure that this data blocking doesn’t occur.”
Is it a little too late, or are you confident that we can now, 25 years later, after all these investments, be able to work with all these vendors to make sure — because it sounds like although we’ve been at this for 25 years, we’re still many years away from having full interoperability across the country and between jurisdictions. How realistic do you think it is that we can work with all these vendors and make sure that this data is able to flow freely from one jurisdiction to another?
Another witness yesterday used the term “transposability.” Did we put the cart before the horse, or can we really make this happen?
Ms. MacKenzie: I’ll begin if you’re comfortable, senator and Madam Chair, and then maybe I will ask our colleague Ms. MacDonald to take up the answer as well.
The short answer is that I feel — from Nova Scotia’s perspective and from my own time in the system — I had the same reaction you did: “Oh, dear. We’ve been trying to enter the data and do it well for many, many years now. Why are we just doing this now?”
I’m old enough to remember when we were dealing with paper most of the time in the legal system, in the health care system and in the school system, and I think we were relying on the market to innovate, plug in and solve the problem. I think the variety of tools that came forward was amazing and world-changing, but we, perhaps, didn’t regulate enough in this space.
Now, in order to, actually, meet the moment about interoperability — because the technology has advanced — I always say we have to meet this moment digitally because the health care system from a bricks-and-mortar perspective is no longer sustainable. We have to pivot to digital tools to provide care to Canadians.
Back in the day, people were building hospitals and emergency rooms, and now we have to build the digital tools, and I think our collective knowledge has progressed enough to allow us, as regulators and stewards of health care in Canada, to do that well. It will be challenging; there is no doubt. But we are committed to it because it’s so central to the delivery of health care in Canada.
I’ll hand the microphone over to my colleagues now — perhaps Mr. McKenna and then Ms. MacDonald.
Mr. McKenna: Thank you for the question.
In short, yes, it can be done. I have the same perspective as you, senator. We’ve talked about this long enough. In Nova Scotia, we’ve proven it can be done. It’s not theory. It’s real today.
This bill, I will recognize, is one step forward. It’s the bill to recognize standards that vendors need to adhere to. The next piece of that to make this real is that health systems need to adhere to standards as well.
Technology can have standards, but the health system doesn’t, and I think that is one of the challenges we have had — that there have been no national standards for health systems. There is no wrong path, but they’ve chosen where they want to go, and you can’t talk across systems.
With that, if health systems take the next step and align and adopt, it will allow us in 2026, in a digital age, to centre the health journey around the citizen, not around the —
The Chair: Sorry to cut you off, Mr. McKenna. We have to go on to give Ms. MacDonald a short moment to respond.
Ms. MacDonald: Sure. Thank you, senator, for the question.
I optimistically feel that this is realistic. I do see, with having the one record within Nunavut, the many benefits and the safety that it provides for Nunavummiut. I do believe there may be challenges, but, working together, I feel that this is realistic and that we can start on this journey to having national standards.
Senator Cuzner: Let me start by tipping my hat to the folks from Nova Scotia there first for the way that things have evolved over the last 8 to 10 years and with the progress that has been made. When you hit my age — in the late thirties or early forties — you start taking your health concerns a little bit more seriously.
Everything you get on YourHealthNS app — whether it’s results, test results or appointment reminders — and we know that one of the big efficiencies in the system is booked and missed appointments, and there is a cost there — we’ve come a long way in Nova Scotia, and I know it has been really helpful.
I have two questions, and I’ll get out of the way. The costs with the data blocking and that — Mr. McKenna, you had touched on it briefly — obviously, it provides inefficiencies within the system, but are there financial costs as well with the data blocking and the lack of interoperability? Are there costs there?
And probably to Ms. MacKenzie — and if Ms. MacDonald wanted to weigh in on it as well — the Canadian Bar Association said yesterday that they would like to see a more definitive definition of data blocking. You had indicated you’re not intimidated by the lack of definition. You referred to it as “scaffolding.” Would you like to see it go a little bit further, or are you okay with the way it is and letting it evolve? Maybe if Ms. MacDonald wants to speak to that, too, but first I’ll ask Mr. McKenna.
Mr. McKenna: Thank you, senator. Absolutely, there is some financial cost to not doing this. What we’ve done in Nova Scotia over the last two years to do this in record time is a lot of manual costs to map data from one system to another system. It’s like translating from one language to another language. What does that mean? System X may not mean the same as System Y.
We’ve had to manually do that to make data flow and exchange. If we had vendors that actually had standards that everyone aligned to, we wouldn’t have to cut that. It is a huge cost if you want to make this a reality and improve the journey for, in our case, Nova Scotians but, in this case, Canadians.
Senator Cuzner: Thank you.
Ms. MacKenzie: Thank you. I’ll pick up the second part of your question, and I’ll be brief regarding the concern from the Canadian Bar Association.
I think that there is, probably, a concern about the lack of precision with respect to privacy protective measures or an overly broad net being cast. I think that the incidence of the blocking in the industry is significant enough that it warrants the definition being the way it is, and the regulatory framework will add some more details to let it come into sharper focus for all of the players.
The definition will be what it is in the act, but we’ll get that granularity in through that consultation piece and, hopefully, hit the right note so that it’s a regulatory answer rather than a legislative answer in a piece of legislation.
I’ll hand the microphone to my colleague Ms. MacDonald.
Ms. MacDonald: Thank you. I agree with both of my colleagues on this, so I do not have anything to add.
The Chair: Thank you very much.
Senator Senior: Mr. McKenna, you mentioned international situations as well. Are there international regions that you’re aware of that are in similar circumstances to us that are dealing with this challenge that we’re trying to fix through interoperability and the whole data-blocking circumstance?
Mr. McKenna: Absolutely. This is a global issue. Everyone uses different technologies, but I mentioned the U.S. has made some progress. They declared nationally that one standard, which is international — Fast Health Interoperability Resources, called FHIR — would be their standard. Europe followed after that so they could exchange because Europeans go across countries and citizens.
Denmark, which is looked at globally as one of the leaders in exchange in health data, is struggling with that today because they’ve done it based on a Danish standard, not on an international standard. So they’re struggling to exchange with other Europeans and become compliant with that European legislation.
As we move across this great country, we need to consider that, making sure we’re aligned, because Canadians get care in their communities, in their provinces and across the country. Canadians also go elsewhere to get care.
The Chair: Thank you very much, deputy minister, Ms. MacDonald and Mr. McKenna, for your testimony today.
Senators, this brings us to the end of the first panel.
For our second panel, we welcome, from the Canadian Institute for Health Information, Dr. Anderson Chuck, President and Chief Executive Officer; from Canada Health Infoway, Abhi Kalra, Executive Vice-President, Connected Care; from First Nations Health and Social Secretariat of Manitoba, Tatenda Okoi, Director of eHealth, and Leona Star, Director of Research; from Beauceron Security Inc., joining by video conference, David Shipley, Chief Executive Officer.
Thank you all for joining us today. For your opening statements, you will each have five minutes, followed by questions from committee members.
Dr. Chuck, the floor is yours.
Anderson Chuck, President and Chief Executive Officer, Canadian Institute for Health Information: Thank you, Madam Chair and honourable senators.
First, I would like to recognize that I am joining you in Ottawa, which is the traditional, unceded territory of the Anishinaabe Algonquin Nation. It is an honour to be here speaking with you about Bill S-5 and how it addresses an issue that is critical to the transformational needs in the Canadian health care system.
My name is Anderson Chuck. I am President and CEO of the Canadian Institute for Health Information, or CIHI. CIHI was established in 1994 through a partnership of FPT governments to serve as Canada’s pan-Canadian health data organization. Our role truly is to be the stewards of health information for the country, and a core part of our mandate is to establish national data content standards to ensure that health data across the country is relevant and comparable.
Stewardship is, therefore, central. It means not only protecting data but ensuring that it is used responsibly, effectively and in ways that deliver value to Canadians.
Within this context, CIHI has a role in progressing connected care for the country. CIHI has been endorsed by the conference of deputy ministers of health to lead governance and stewardship and establish a mechanism for jurisdictions to cooperate on agreed-to priorities that address stewardship issues such as public trust and responsible data sharing and access.
CIHI is also responsible for the Pan-Canadian Health Data Content Framework. This framework is a national standards library for all health data across the continuum of care. This library was co-designed with patients, providers, Indigenous partners, researchers, vendors and provinces. From this library, the Canadian Core Data for Interoperability, or CACDI, was created. It establishes the minimal clinical data elements that are needed for high-quality patient care across the patient journey. It is, in fact, a data content standard that, when combined with Infoway’s technical standard, enables high-quality data to follow patients across their care journey and address the all-too-common grievance of patients reporting that they have to constantly repeat their medical information or from providers not having the information they need to care for their patients and burning out from having to constantly chase data.
These grievances result from the fact that information does not constantly flow with patients as they move across their journey, as they transition from primary care to community care, to hospitals, to continuing care. This is, in fact, what this bill helps address. Using the simple analogy, unconnected data is analogous to road systems where the roads don’t connect because there are blockages or where rules of the road change from neighbourhood to neighbourhood. Bill S-5 unblocks the roads and, through regulation, can help the driving rules such that they are consistent to allow people to get to where they need to go safely, securely and on time.
The Chair: I’m going to ask you to slow your pace just a bit so interpretation can capture your words.
Mr. Chuck: Sure. Not a problem. Thank you.
This issue is critical because it has grievous consequences on patient health, health system sustainability and the Canadian economy.
As a simple illustration, the most conservative estimate of how much time it takes a family doctor to search for data is about 40 minutes per day. Across 49,000 family physicians in the country, that’s 8.5 million hours per day, or about 1 million full workdays lost annually. Put another way, that is 32 million additional patient visits that could have been delivered to Canadians.
Consider for a moment that many physicians aren’t spending 40 minutes; they’re actually spending two hours. Consider for a moment there are, in fact, 100,000 physicians we have in the country, so the magnitude of harm is significant to the patients receiving care, where it is literally life and limb, but also significant for the millions of patients who are also waiting to receive care and for the longer-term sustainability of the health system to deliver the very care that Canadians depend on.
Evidence of real-life consequences and tragedies is well known. We know the story of Greg Price, who lost his life due to breakdowns and information not flowing, and of Richard Bird, who also lost his life due to lung cancer due to data being unavailable.
These patient impacts and system inefficiencies have significant consequences, as I said, for the economy. At minimum, Canada is losing about $9 billion due to limitations in data liquidity and inefficiencies in the system. Canada already spends $400 billion annually on the health care system, 12.7% of GDP, but what is even more concerning is that it’s growing at 4% per year. This means that, in five years, Canada will have spent another $80 billion on health systems. Imagine that number in 10, 15 or 20 years into the future.
Simply put, Canada cannot outspend its way out of the challenges. Canada must out-innovate, and to innovate, you need connected data so that innovation can improve care delivery for patients, strengthen system planning and unlock opportunities in research, discovery, clinical trials and life sciences opportunities for Canadians. Altogether, this is why Bill S-5 matters. Bill S-5 is a key puzzle piece to move from fragmented systems to a connected one.
Canadian health data is truly one of Canada’s other great natural resources. Canadians deserve to benefit from the full potential of this resource, balancing patient and public benefit with safeguards for privacy. Bill S-5 is an essential step toward that future for Canadians. Thank you.
The Chair: Take a breath. Thank you, Dr. Chuck.
Mr. Kalra, you have the floor.
[Translation]
Abhi Kalra, Executive Vice-President, Connected Care, Canada Health Infoway: My name is Abhi Kalra. I am the Executive Vice-President of Canada Health Infoway.
[English]
Good morning, Madam Chair and esteemed members of the committee.
I am grateful for this opportunity to outline how Bill S-5 can accelerate the ongoing, practical work to securely connect health information across our nation, ultimately transforming health care delivery for all Canadians.
I am here representing Canada Health Infoway, an independent, federally funded not-for-profit organization, governed by a board of directors and the 14 federal, provincial and territorial deputy ministers of health. Together, we are dedicated to building a health system where every Canadian can securely access their health records and authorized providers can obtain necessary information about their patients no matter where care occurs. Seamless, secure data movement leads to faster, safer and better coordinated care, which is vital during both routine and emergency situations, such as COVID.
Enhanced sharing and access to health information also bring significant social and economic advantages, helping reduce inefficiencies, support provider burnout prevention and potentially boost Canada’s GDP by improving health outcomes nationwide.
To realize this vision, we must build a fully connected health system that ensures secure and consistent data exchange across all care settings, while upholding the highest standards of privacy protection.
Think of a connected health system as the plumbing of your medical data. Just like the pipes in your house, it’s designed to move a vital resource — data in this case — from where it is created to where it is needed, without you having to carry it in buckets. Bill S-5 is a critical driver to make this happen. Bill S-5 is a major advancement, recognizing that secure interoperable health data exchange is essential, no longer optional.
While Canada’s health system has digitized rapidly over the past decade, challenges remain. Even when health information is available electronically, it is often difficult to access at points of care, especially when patients move between communities, provinces or territories. Without common standards and consistent adoption, information becomes trapped in disconnected systems, leading to familiar frustrations, including repeated tests, delays in treatment, incomplete medication histories and increased administrative burden. Most importantly, it creates preventable risks for our patients.
Canada Health Infoway’s work is directly relevant here. Through the Shared Pan-Canadian Interoperability Roadmap, endorsed by the deputy ministers of health, we are already playing a central role in convening partners and advancing a practical national strategy to improve data exchange and patient access.
This work is already producing tangible improvements on the ground, such as expanded access to digital health services for patients, the adoption of safe and compliant AI tools among physicians and more standardized digital clinical workflows.
Bill S-5 propels the national interoperability mandate by establishing clear, unified incentives for health IT vendors and stakeholders to adopt standardized practices. Consistency ensures progress across provinces and territories and prevents fragmentation.
Moreover, Bill S-5 supports responsible innovation in the health sector. High-quality standardized data, supported by the interoperability standards Canada Health Infoway advances with its partners, is a prerequisite for scaling artificial intelligence safely and effectively in health care.
Let me talk about some practical scenarios that would benefit from a connected health system. A Yukon resident visiting British Columbia can have their crucial health details accessible, promoting safe, coordinated treatment wherever they are. A Nova Scotia specialist can effectively treat a Prince Edward Island patient with full visibility of their medical history for seamless cross-provincial care. Someone in Windsor, Ontario, with a chronic illness can visit any walk-in clinic, their family doctor or any hospital without missing vital information. Seniors with chronic conditions moving between homes, hospitals and long-term care would experience less stress, smoother transitions and greater dignity.
Canada Health Infoway is prepared to help implement Bill S-5 by bringing partners together, advancing standards, conforming and scaling solutions that enhance access, coordination and quality of care.
Other nations have improved interoperability with similar laws, and Canada must act now to avoid falling behind as information increases and fragmentation risks grow. Keeping information siloed raises costs but, most importantly, threatens patient safety. Bill S-5 is a chance to define expectations for connected care in Canada, building on the work of Canada Health Infoway and partners.
Thank you again for the opportunity. I would be pleased to answer any questions.
The Chair: Thank you, Mr. Kalra.
Mr. Shipley, you have five minutes.
David Shipley, Chief Executive Officer, Beauceron Security Inc.: Thank you so much, Madam Chair and senators.
My name is David Shipley, and I am the CEO of Beauceron Security. We’re focused on the human side of cybersecurity, and our mission is to help people make good choices about technology so they can reduce their risks and thrive in a digital world. We work with more than 1,500 clients, including some of Canada’s largest banks, telecommunications and public institutions, including hospital systems.
I want to start by being clear that I support the goals of this legislation and believe strongly in the need for digitally enabled health care for Canadians. Ending vendor data locking is long overdue, but even if we accomplish that goal, if we don’t have a clear view of the growing risks to health care data and systems, the core objectives of this legislation will not materialize in the way we all need it to.
We need to talk about what happens when the more connected systems we’re talking about get hit.
Iran-linked threat actors have been systematically targeting health care infrastructure across North America. Canada’s own Communications Security Establishment, or CSE, co-signed a joint advisory with the FBI, CISA and NSA, warning that Iranian actors have been conducting brute force and multi-factor authentication push-bombing attacks against health care organizations since October 2023. Earlier this year, an Iran-linked group encrypted an entire U.S. health care provider’s network in under three hours. A separate Iranian attack wiped more than 80,000 devices at medical device maker Stryker.
Canada’s domestic record is no better. In 2019, 15 million LifeLab records were exposed. Newfoundland and Labrador’s entire health system went offline in 2021 due to a Russia-based ransomware attack. Five southwestern Ontario hospitals in 2023 had 5.6 million patient visits compromised.
In 2020, ransomware hit the University of Vermont Health’s network, the worst U.S. health care cyberattack that year. Within minutes, the hospital lost access to pharmacy, laboratory, pathology and radiology systems. Individualized chemotherapy plan templates, the records telling staff which drugs to administer and in what doses were gone. Cancer patients had treatments delayed. Some waited weeks for biopsy results. The recovery cost over $65 million and required help from the Vermont National Guard.
That is what inadequately secured centralized health IT looks like when it fails. This committee should assume it will fail again and with more frequency, given the increased capabilities of threat actors thanks to the proliferation of AI as weapons of mass cyber-disruption.
And here is the hard truth about why we are still having this conversation. Canada does not act like a nation-state when it comes to cybersecurity. When Parliament had the opportunity to designate health care as critical national infrastructure in our cybersecurity legislation, it blinked. Jurisdictional concerns between Ottawa and the provinces got in the way. Health care is provincial. Fine. But the ransomware operators in Moscow, Pyongyang and Tehran don’t care. The Iranian hackers who encrypted that hospital network in the U.S. will not pause to consider the division of powers.
Nation-states and transnational criminals do not care about our 44-year-old Constitution and how it failed to imagine the digital world we have to live in today. But we should care. This committee can start fixing that today in a meaningful way by taking the concept of ending vendor lock further by reducing the inherent vulnerability of centralized systems.
I have three recommendations.
The first is to support both centralized record systems — today’s model — and decentralized, client-held record systems, which are the future. Let me be clear about where I stand. Health care institutions are not psychologically ready for a fully decentralized patient record model, and I completely accept that. But let’s be honest about the trade-offs. Centralized systems can continue, but we must go in clear-eyed, knowing that if security safeguards fail, the consequences will be severe and the blast radius will be wide. What we cannot do is build more centralization without simultaneously building an exit ramp, a patient-held record model that means the next breach doesn’t take down care for an entire province.
We must start planning for that future now. Bill S-5 or its accompanying regulations should include provisions and a timeline for a patient-held, decentralized record storage model. Keith Lawson, the Chief Information Security Officer at London Health Sciences Centre, has submitted a brief to this committee laying out how this would work, and I support that.
What’s important to know is that an attacker who compromises a centralized repository gets millions of records. Someone compromising just one patient gets one record. When a centralized hospital system goes down, a patient who holds their own records can still receive good care. That ability would have been invaluable during the 2020 University of Vermont Health attack or the attacks on Newfoundland’s and Ontario’s hospitals.
Second —
The Chair: Can you wrap up quickly, please? Your time is up.
Mr. Shipley: Sure. In conclusion, tie health care dollars in the future to clear cybersecurity standards, give patients their own copy and give the Canadian Centre for Cyber Security a clear mandate for health care security. Thank you.
The Chair: Thank you very much, Mr. Shipley. Ms. Star, you have five minutes.
Leona Star, Director of Research, First Nations Health and Social Secretariat of Manitoba: My name is Leona Star. I come from Thunderchild First Nation, Treaty 6 territory. I work as Director of Research within the First Nations Health and Social Secretariat of Manitoba, or FNHSSM. We’re an organization that collaborates with 63 First Nations, and our mission is to assist Manitoba First Nations in achieving and maintaining total well-being by implementing effective programs protecting Indigenous values and supporting research that informs decision making.
While we support the intent of Bill S-5, we offer the following recommendations:
The first is that the committee recognize that distinction-based data collection is a requirement. Change the word “Indigenous” to “First Nations, Métis and Inuit.” We saw during the COVID-19 pandemic that the inability to see First Nations people in data systems placed our people at an increased risk of harm, since guidelines imposed by the federal health systems did not take into account the realities of First Nations, including the inability to isolate during the infection period due to a lack of housing and overcrowding.
Within Manitoba, the research team at FNHSSM negotiated an information-sharing agreement with the Province of Manitoba, which allowed First Nations leadership and health systems to understand how COVID-19 was disproportionately impacting First Nations differently due to the underlying issues mentioned above. The ability to assert governance over First Nations data from the onset of the pandemic supported a First Nations-led response. As a result, First Nations were able to access the vaccine at an earlier age category than the rest of Manitoba.
As the work was shared nationally with federal partners, First Nations across Canada also gained early access to the vaccine. This distinction-based analysis supported a First Nations-led approach in identifying our citizens through information-sharing agreements and familial linkages, which recognized and adhered to First Nations governance and sovereignty over data and was considered the gold standard for identifying First Nations by several national partners.
Our second recommendation is that, to support First Nations data sovereignty, the regional information governance centres should be included in Bill S-5 to ensure a funded pathway to protect First Nations data.
Across Canada, First Nations have been working to create a network of regional information governance centres governed by First Nations to ensure timely access to usable and reliable First Nations data. These centres will ensure the protection and security of First Nations data, as we have concerns about data being sold to third parties without consent or knowledge, which is why First Nations must provide oversight and governance of First Nations data, including the data proposed within Bill S-5.
Manitoba First Nations have one of the longest-standing information governance models across Canada, called the Health Information Research Governance Committee. It was established in the 1990s. The committee provides oversight and governance of regional research projects and regional First Nations data requests for research, surveillance and emergency response, in accordance with ethical principles endorsed by 63 First Nations through resolution. This has proven an effective model for ensuring First Nations leadership and that the provincial and federal governments have access to data to respond to health emergencies, including the COVID-19 pandemic and wildfires.
Based on community engagements over the last two years, the First Nations regional information governance centre in Manitoba identified five areas of focus, including relationship building; data governance support; training and education; research, analysis and reporting; and custom tools and infrastructure development. Data governance includes all data related to First Nations, including stories, demographic data, administrative data, language, culture, biological samples and environmental data.
First Nations data sovereignty crosses many boundaries and includes data collected by and for health care systems across Canada. For First Nations, data is more than just numbers. There’s a strong ancestral and spiritual connection to our data and about our people and a sacred responsibility to care for those stories, the spirit and the truths that exist within any data set.
As nations, we have a right to be counted and seen in any data set. We have a right to govern how our story is collected, shared and told, according to our values and world views.
The Chair: Thank you very much, Ms. Star. Ms. Okoi, you have five minutes.
Tatenda Okoi, Director of eHealth, First Nations Health and Social Secretariat of Manitoba: Thank you, chair and committee members, for the opportunity to appear before you today. I appear on behalf of the First Nations Health and Social Secretariat of Manitoba, where I serve as the Director of eHealth, overseeing a digital health mandate supporting 63 Manitoba First Nations.
We support the intent of Bill S-5 because improving interoperability across Canada’s health systems is necessary. However, without explicit recognition of First Nations’ jurisdiction and data governance rights, the bill risks entrenching existing inequities. For First Nations, interoperability is not simply a technical reform; it is fundamentally a matter of governance, jurisdiction and rights.
Broadband connectivity remains a persistent challenge for many First Nations communities across Manitoba. Health systems are also fragmented across federal, provincial and First Nations jurisdictions, and the data that defines First Nations is often incomplete, misclassified or entirely absent.
The starting point for First Nations is different. Communities cannot benefit from systems they cannot access.
The key risk for us is infrastructure gaps. Interoperability, as envisioned in this bill, assumes a level of infrastructure, integration and governance that does not yet exist for many First Nations communities. Without addressing these gaps, interoperability will not be equitable; it will be uneven.
Second, the bill places significant obligations on health technology vendors. We support the goal of reducing data blocking; however, not all vendors have equal capacity to comply. Large vendors will adapt quickly, while smaller vendors, including those serving First Nations communities, may struggle. If that happens, the outcome is not neutrality but consolidation: fewer choices, less culturally relevant solutions and a greater dependence on external systems.
The third risk is that expanded interoperability will increase the flow of health data across systems. This raises serious concerns. Without strong safeguards, there is a risk of secondary use of data without meaningful consent, the commercialization of health data and the continued exclusion of First Nations from data governance.
These risks are not theoretical. They reflect long-standing patterns of data extraction that have contributed to mistrust in health systems.
We are not asking you to slow down progress. We are asking you to get the implementation right.
First, the bill must include a statutory obligation for the federal government to support digital infrastructure and broadband connectivity in First Nations communities as a condition for equitable implementation of interoperability systems.
Second, there must be an inclusive vendor pathway. This includes phased compliance, funding and technical support to ensure smaller and community-based vendors that support First Nations are not excluded.
Third, First Nations must be included in governance. Representation is needed in standard-setting bodies, oversight mechanisms and compliance frameworks. This is essential to ensure that implementation reflects First Nations realities.
This bill speaks to a connected health system. For First Nations, connection is not only technical; it is relational, it is cultural, and it is grounded in sovereignty. First Nations are ready to participate in this future, but participation must not come at the cost of autonomy, data governance or the ability to choose solutions that reflect community priorities.
If implemented correctly, Bill S-5 can support equity, innovation and nation rebuilding. Its success will depend not only on technical design but on whether it respects First Nations rights and governance authority. We urge you to ensure that First Nations are not only included in interoperable systems but empowered to shape, govern and lead them.
Thank you.
The Chair: Thank you very much. We will proceed to questions from committee members. For this panel, senators will have four minutes for your question, and that includes the answer. Please indicate if your question is directed to a particular witness or to all witnesses.
Senator Burey: Thank you so much for being here, witnesses. I’m going to get right to my questions.
The first question is for Dr. Chuck. I’m just wondering about this Canadian core set of interoperability standards. Are they international standards? Because we heard that in the last panel. That’s the question for you.
Then, for Mr. Kalra, the question for you, for Canada Health Infoway, because you are heading this up and you have been doing this for many years — I’m a physician myself; I won’t go into the details — where are you on the road map? I’ve looked at this road map, and you know where you are, but could you tell us where you are and why Bill S-5 is important to progress on the road map?
Mr. Shipley, that cybersecurity thing is unbelievable. I’m from Windsor-Essex, so I knew what had happened. You wanted some extra time, so please expand on your recommendations.
Mr. Chuck: Thank you for the question.
The Canadian Core Data for Interoperability, CACDI, actually comes from the Pan-Canadian Health Data Content Framework, which is a national library. That national library absolutely aligns with international content standards.
Mr. Kalra: Thank you for the question.
The Shared Pan-Canadian Interoperability Roadmap, which was endorsed in 2023, had three promises, including enabling the standards for patient access and enabling the standards for data exchange. I’m proud to say that, in collaboration with the industry and the provinces and territories, we have developed those standards. It’s only in implementation in certain provinces within the country.
Bill S-5 will serve as a strong catalyst to make sure that we accelerate the adoption of those standards that we have built together.
Mr. Shipley: Thank you so much.
Just to recap, the first of the three recommendations is to be explicit in a mandate to allow for patients to hold their own records on their own smartphones, for example, which, in the event of an attack, would allow for continuity of care and for the ability to recover, which is going to happen.
The second recommendation is a pan-Canadian national cybersecurity standard for centralized patient health care systems, to be supervised by the Canadian Centre for Cyber Security, with some incentives but also, potentially, penalties to provinces to invest in this area. If we don’t start making more dedicated efforts on this, it will always be bottom of the list, given the political priorities around doctors, nurses, allied health care professionals or facilities.
The third recommendation is getting the centre to be resourced to be actively involved — not voluntarily asked, but actively involved — and recapping key lessons learned. I’ve had a lot of chief information security officers, or CISOs, for hospitals calling me in 2021, wanting to know what was going on in Newfoundland because they had no idea if there was something they should be doing to batten down the hatches.
Senator Hay: Thank you all for being here online and with us in the room. For full disclosure, I have a fair history with Canada Health Infoway and CIHI from work I did many years ago and up until last year.
I’m going to ask about provinces and territories. I recall from my work on the 988 file the building,the stakeholder engagement requirements and working with P&Ts and First Nations, Métis and Inuit governments and communities on that sort of build, pilot and launch. It was not easy, coast to coast to coast. It took a lot longer than we thought, and it was a lot bumpier than we envisioned.
How do you see that P&T engagement in all of the communities that need to be served by Bill S-5 and the adoption of Bill S-5 — I can’t reinforce enough — coast to coast to coast? What happens if a few of them don’t want in on Bill S-5? What would happen?
Then I have a cybersecurity follow-up question if there’s time.
Mr. Kalra: Thank you for the question. The standards we built together on patient summary as part of the road map were in collaboration with all the provinces, territories and the vendor market. Provinces and territories are tired of paying duplicative tax. For the last decade, they have been individually working with the same vendors that work across the country. They are tired of building those individual standards and paying that cost, which is one of the reasons they all came together.
If you look at the evidence of the work in the last three years on patient summaries, we have the first pan-Canadian patient summary as a standard. Electronic refills, we have a national standard, and we can take pride in those. Now we have the national standards for data exchange and data access that Mr. Chuck talked about. All this work has been done in collaboration because they recognize the challenge of doing this individually.
Senator Hay: Not all the systems talk to each other. For example, in health care, some build their own. Some have Epic, and some have something else. I’m just curious about how that plays out.
Mr. Kalra: All of these standards have been built on international standards. When you look at the big vendors we have in the hospital and the primary care space, they all align with it. They have upgraded their base, and that is the work Infoway has done over the last three years to mobilize the private sector to get ready for those standards. We need this bill to ensure we make it a time-bound mandate for them to implement and put in action.
Senator Hay: That’s helpful.
Mr. Chuck: The work we’re doing with vendors, if they adopt the standards themselves, it creates the fundamental base capability for countries. Whether provinces opt in now, later or at all, it creates a fundamental capability that allows for that future ability to have the connected health information systems that we need.
Senator Hay: Respecting what we heard from Ms. Star and Ms. Okoi, Mr. Shipley, can you answer this question: Is end-to-end data sovereignty in this environment truly possible? Would that make the environment safer?
Mr. Shipley: Data sovereignty in and of itself would not make it safer from the most pressing threats that we’re facing, which are the purposeful disruption or destruction of access to data. Data sovereignty helps to ensure that people who shouldn’t be accessing the data, i.e., the American government or others, aren’t doing that. More needs to be done to prevent unauthorized access and alteration of data beyond data sovereignty.
Senator Hay: A safer environment against cyberattacks and whatnot. Thank you.
Senator Boudreau: I wanted to focus on cybersecurity. I had a three-pronged question for Mr. Shipley that he answered in his opening remarks. I wanted to know if a national system would be more attractive to cyberattacks. He basically said yes. Would the fallout be greater if they were successful? Again, he said yes. What needs to be done to prevent this from happening? He gave three specific recommendations.
I will shift my question to Mr. Kalra. In the work that you do with deputy ministers across the country, I hope these issues have been raised at your table. I’d love to hear your reaction or response to the testimony that we just received from Mr. Shipley.
Mr. Kalra: The cybersecurity and security requirements are prerequisites when we build these national exchange standards. We ensure the compliance. When we look at some of the privacy regulations or the cybersecurity regulations, how do they translate into the standards that we built in practical terms? When we work with the vendors to build it, we have a conformance mechanism to ensure they are building to these standards, and these are internationally tested standards.
Senator Boudreau: Despite that, based on Mr. Shipley’s testimony, there have been successful attacks and some issues.
Mr. Shipley, would you want to expand on that? Your initial answers, I’ll admit, scared me a little bit in terms of having a national system. Maybe you want to respond again.
Mr. Shipley: The devil’s in the details. So the first point I was making is there will always be vulnerabilities in any system, and there are more vulnerabilities being found now thanks to AI. Even with these standards, we will still have attacks that find ways to potentially cause harm. We need to think about resiliency, which is more than completely shutting out the bad actors all the time. That’s impossible.
Resiliency, to me, looks like someone who is going through a cancer battle, if one of our health networks in New Brunswick were hit, they could pull up their smartphone and say, “Yes, I do know what chemo drug I was on, and here is my dosage, and I can access that.” Planning for resiliency is important. Think of this as modern civil cyberdefence. Big centralized systems are big targets. They will get taken down. There is not a vendor on the planet that can promise you today they’ve made the impervious system.
Senator Boudreau: Thank you.
The Chair: Just a quick question to Mr. Shipley. I work with a tertiary and quaternary hospital in Toronto. We go through exhaustive annual updates on bringing data on personal devices, carrying things out of the hospital in certain ways. Would it not increase cybersecurity risk to have people carry their data on personal devices?
Mr. Shipley: Mr. Lawson made this point very well in his briefing that, yes, we are adding some risk if that person gets compromised, but the blast radius, for lack of a better word, is extremely contained, and the person can make that trade-off decision. It is the patient’s own record, so they accept that risk for that benefit.
Senator Osler: Thank you to all the witnesses for being here today. My question is for Mr. Kalra. It’s interesting that the preamble of the bill acknowledges and recognizes that the health information of Canadians is not easily accessible to them and it talks about patients needing their health information to be able to make informed decisions, but the bill does not address access such that our current custodial model of health information will continue.
Some health information custodians, like hospitals, have patient portals where patients can access their health information, but right now those portals are separate and siloed. I understand that is not in this bill. This bill is about connecting health information or the electronic health records. However, once these health information systems are connected, what would be needed to improve patient access to their health information?
Mr. Kalra: Once those systems are connected, the patients will not have to go through several different portals or channels to access their information, because information would be available at their channel of choice. When that happens, we have great examples. There is an example in Nova Scotia for patient summary. Our citizens in Nova Scotia today carry a very clear, concise, simple patient summary on their device because they’ve been able to achieve that. That patient summary is not an information overload for our citizens. It is a very important piece of compartmentalized information that includes your allergies, your immunizations, your health record, your care plan. It is basic information that you as a patient, your caregiver or your care provider would need to provide you care.
Senator Osler: Just so I’m clear, once health records are connected, if I have a portal to my health information through my home hospital, through that portal I’ll be able to access my health records not only at that hospital but at the radiology clinic or the lab?
Mr. Kalra: Yes, and that is really at the heart of the interoperability road map that we’re working on. Once these standards are built, how do we connect and ensure safe access is provided to the authorized patients and their providers?
Senator Osler: Thank you.
Senator Senior: A couple of my questions were asked, in particular to Mr. Shipley. Let me take it a bit further. Are you satisfied — based on where we are now and some of the responses we’ve heard around concerns about cybersecurity — that the recommendations that you’ve made could be addressed through regulations?
Mr. Shipley: I defer to the committee in the legislative framework to the best way to deliver it. I am in favour of clear legislative intent: being very clear about what we want and then allowing for more detailed things to be in regulation. The only thing about the regulation is it can be changed, so the intent can be altered.
I prefer an explicit model, but I defer, as that’s not my area of expertise. As long as we address it more fulsomely than what we have so far, that’s the key part.
Senator Senior: Thank you. My next question is to Ms. Okoi and Ms. Star with respect to data sovereignty. It’s the same question: Are you hopeful perhaps that the concerns that you’ve raised can be addressed through regulations?
Ms. Star: I think it’s possible through establishment and support for the First Nations regional governance centres that are being proposed across Canada. There’s going to be a First Nations data governance centre in every single region. As long as that network speaks to one another, and as long as they have the proper governance structures established to be able to govern and provide oversight over First Nations’ data, those concerns will be addressed according to the nations’ understanding and protocols, as it applies to the implementation of the First Nations principles of OCAP so that First Nations have ownership, control, access and possession of their information, as well as engaging in information-sharing agreements with the data holders and also working towards a pathway of repatriating First Nations’ data at all levels.
Ms. Okoi: I would have to agree with Ms. Star. For us, it’s really about being included at the start because we are often confronted with systems that are already designed, and we are expected to conform. So I think as long as First Nations are at the table in the standardization processing and that inclusivity, then I will be hopeful. But if we are excluded and then expected to participate at the end, then I’m cautiously not confident.
Senator Senior: Thank you.
Senator Arnold: Thank you all for being here today. Many of my questions have been answered. Just in case anyone wants a great example and watches “The Pitt,” when they get cyberattacked, it’s incredible what happens. I’m just saying.
My question is for Ms. Star. You gave such a great example of the benefits of data like this from COVID, and I’m thinking larger. What do you think other outcomes could be? Well, actually, in this committee, on another bill, we were talking about the impacts of alcohol on breast cancer for young women, for example, and it seems anecdotally we’re hearing it all the time but we do not have any evidence to prove a connection. I’m just wondering what other outcomes you could see from this bill.
Ms. Star: It could be the opportunity to develop our own nation-based indicators of well-being, of what interventions could be supported to disrupt the interruptions of colonialism and disrupt the interruptions of the apprehension of our children. How do we work on pathways to return birthing back to our nations to ensure that the trajectory of their lives is supported from conception all the way throughout until they return back home to Creator, until they’re called back home.
But in order to identify what those gaps are, we need access to our own First Nations data. We need access to be able to link to existing data based on our own governance and terms. We need to be able to identify who our citizens are. We need to be able to identify how we choose to be seen within data sets, because as soon as we remain hidden, those gaps are going to continue to widen.
Going back to the Truth and Reconciliation Commission’s Calls to Action, in terms of calling on governments to provide annual reports around the health and well-being of First Nations according to some of the deficit indicators that have already been defined — and I assume will continue to be supported through some of the existing data sets — we need to begin to shift what those indicators are because we don’t want our illnesses to be measured. We want the wellness of our nations to be supported and celebrated. We want the trajectory of our children’s lives to be celebrated. And without actually investing in interventions that bring our children back home and keep our children closer to us, to our parents, to our families, to our lands and waters, that gap will continue to widen.
Without data, without governance of First Nations’ data, that gap will continue to be widened and the sovereignty of nations will continue to be undermined even with data held by federal and provincial governments.
Senator Greenwood: Welcome to our guests, and my apologies for being late. I’m Margo Greenwood from British Columbia.
I’m going to follow up. Many of the questions, like everybody else’s, have already been answered, so forgive me if I am repeating what has already been said.
I see data sovereignty as being very different from cybersecurity. I think sovereignty is one thing, and then let’s keep safe, in colloquial language. So that’s how I frame this. I know the work of the First Nations Information Governance Centre, or FNIGC, over the many years that it has been happening in this country. I’ll ask my questions first, and then you choose how you want to respond, all of you, because they are for all of you as well.
FNIGC, as I understand it, can share data between provinces and territories or between nations. Now, I could be wrong in this, but I’m not sure.
Ms. Star: They have a mandate to provide national data but not necessarily nation- or region-based. That goes through the nation or the region.
Senator Greenwood: Okay. The reason I asked that question was to see if things have been done already around the national sharing. Because we run into the FPT. We live in a federated country, so we know that data is governed at the provincial and territorial level, and it is hard to share across. I was wondering if there were lessons learned already that many of us could learn from what has already been done. I would love to hear more about that.
I was wondering what the current relationships were between the First Nations governance centres, with Canada Health Infoway and with CIHI. What are those relationships? You talk about national standards. All of us are saying, “Here we go.” How have these national standards for data — how have you incorporated the sovereignty of First Nations in this country? How is that incorporated in there so that sovereignty is guaranteed? Or do you have an outside partner relationship?
There are multiple interfaces here. At the individual level, you have to partner with the provincial government to get your data. Then, when it gets into this larger arena, again, you’re interfacing in partnership. So it’s complex. So I’m wondering what’s happening there. Sorry, I’m taking way too much time to ask questions. I know. You might have to do it in writing.
Does that partnership ensure the sovereignty and the safety of that data from multiple perspectives, with all of the cyber things we’ve talked about, but also the lifting up and recognition of the sovereignty of First Nations in this country? I don’t know who wants to tackle that. We don’t have time, so perhaps written answers could be provided.
The Chair: I think that’s wise. We will ask Dr. Chuck, Mr. Kalra and perhaps Mr. Shipley to respond in writing. It sounds like your question is directed to them. Is there anybody else you would like to ask, senator?
Senator Senior: That’s fine.
The Chair: That would be perfect in writing. Thank you very much.
Senator Petitclerc: There are so many good questions and answers.
Mr. Chuck and Mr. Kalra, in terms of consultation or input, what do you hear from health care providers on the ground, like doctors or others who will be impacted by this bill? How is it being received? I’m trying to get to the enabling aspect of it, but also the standards. Is there any feedback on, “It’s good, but ...”? I’m trying to get at what those “buts” could be.
Mr. Chuck: As it relates to providers and the kind of input that we’re hearing from them, I would say that, largely, the theme is that they support this bill very much. As I mentioned in my opening remarks, the amount of time physicians and providers are spending having to chase data is the cause of their burnout.
As far as it relates to, then, the content standard that we’re developing — which, for those who don’t know, it is to ensure that there is a signal in what is actually being connected, that the information is of high quality and that providers have been involved to ensure that, from a clinical relevancy point of view, it’s relevant and, to touch on Senator Greenwood’s question earlier, that Indigenous communities are involved as well, so there is cultural relevancy to the content standards too. That is a way to also help ensure sovereignty so the data we’re collecting that’s moving is of cultural significance and relevance to Indigenous Peoples.
Mr. Kalra: Thank you for the question.
Our providers are very important custodians of our health information, and they want to make sure they can trust the system so they can share the information. Overwhelmingly, when you look at some of the surveys, over 90% of providers want to exchange information. They recognize that to provide continuity of care, our patients go to different care settings, and they recognize the need to share and receive information.
Through Bill S-5, once we mandate certain standards, we mandate and assure safety of those standards, and these are being implemented in a harmonized manner. It will give them confidence and build trust in the system for them to be able to share information with their peers.
Senator Petitclerc: Depending on where in the country, do you get any obvious questions about needing connectivity and broadband? Do you receive input saying, “This would be good, but let’s not forget . . .”? I suppose it’s a process.
Mr. Kalra: Some of the feedback we’re hearing is let’s not create more work for our providers. Interoperability and Bill S-5 work have to happen behind the scenes. It should not impact and add more to their workflows. Build that trust behind the system and make it easy for them to use.
Senator Petitclerc: Thank you. Senator McCallum, welcome to the committee. You have the floor.
Senator McCallum: When we look at the data that is collected by health professionals, many times it needs to be decolonized. I’ll give an example.
The data collected on First Nations, Métis and Inuit is actually evidence of the limited access to care and treatment for First Nations. When you look at a child, you’re looking at the social determinants of health and how that impacts them. When I look at dentistry, bacteria cause tooth issues, but it’s social determinants that make the disease prevalent in the community. It builds an inaccurate picture, which I think is part of the problem and why you’re interested in a discrete system.
With the work you do — and I’m familiar with it — you’re looking at wellness in all areas, but the medical system is looking at illness. To me, I would rather be in the wellness model because of the healing that has been happening from colonialism. In terms of the discrete systems, how would that work?
Second, how is consent of the use of personal health information handled within a national system? What is the patient’s understanding of what is happening to their system?
The reason I got involved in personal health information is that the federal government was giving our information to outside countries without consent. When First Nations became very angry about it, the government provided a consent form that was two pages in length. If First Nations didn’t sign it, they could not access health benefits. This was in 2002, and that’s how I became a volunteer. With that threat, the group started working on this.
Consent is so important because, even with the Freedom of Information and Protection of Privacy Act, or FIPPA, and the Personal Health Information Act, or PHIA, in Manitoba, they were still selling the information. Could all of you comment on that?
Ms. Star: For us, for First Nations, the importance of free, prior and informed consent, or FPIC, is critical to any information, data, story or data element that we have as nations to be able to provide our consent for our information to be collected and to identify what those parameters of use are and also where our information is held.
One of the ways that we’re ensuring that FPIC is adhered to as it applies to data, research, surveillance and emergency response is that our Health Information Research Governance Committee — which is, as I stated earlier, one of the longest-standing First Nations research ethics boards, or REBs, across Canada. It’s the longest-standing REB across Canada because of the vision and leadership of our Chiefs in terms of being able to invest their time and energy into establishing a governance structure at that level. One of the criteria for access to information includes adherence to FPIC and OCAP, First Nations benefits and First Nations ethical principles.
The Chair: I’m afraid we have run out of time. This brings us to one more question.
Senator Senior, we’re at 12:29 p.m., which is when we should be ending this committee. Would you ask your question with a written response, please?
Senator Senior: Yes. It is to Dr. Chuck.
You mentioned in your opening remarks the cost of not being connected, and they were astronomical costs, as you projected them to be. I wonder whether or not you’re expecting a saving as a result of connectivity. Or, as Mr. Shipley has scared us a little bit around the cybersecurity, whether or not you would expect any such savings to go towards cybersecurity costs.
Mr. Chuck: You would like written feedback?
Senator Senior: Yes, please.
The Chair: For Mr. Kalra as well. Thank you very much.
This brings us to the end of this meeting. I would like to thank all our witnesses for your significant contributions today and for your time joining us here today in person and online.
(The committee adjourned.)