THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Wednesday, April 22, 2026
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:15 p.m. [ET] to consider 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: I call to order this meeting of the Standing Senate Committee on Social Affairs, Science and Technology.
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.
My name is Senator Sharon Burey. I’m a senator from Ontario and the deputy chair of this committee. Now I would like to do a round table and have senators introduce themselves.
Senator Kingston: Joan Kingston, senator from New Brunswick.
Senator Senior: Paulette Senior from Ontario.
Senator Manning: Fabian Manning, Newfoundland and Labrador.
Senator Hay: Katherine Hay, Ontario.
[Translation]
Senator Arnold: Dawn Arnold, New Brunswick.
Senator Petitclerc: Chantal Petitclerc, Quebec.
[English]
Senator Cuzner: Rodger Cuzner, Nova Scotia.
Senator Osler: Flordeliz (Gigi) Osler, Manitoba.
Senator Muggli: Tracy Muggli, Saskatchewan, Treaty 6 territory.
The Deputy Chair: Thank you, senators.
Today, the committee continues 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. The short title is Connected Care for Canadians Act.
[Translation]
For our first panel, we’re pleased to welcome the Honourable Marjorie Michel, Minister of Health. The minister is accompanied by Elizabeth Toller, Director General, Health Care Strategies Directorate, Health Policy Branch, Health Canada.
Welcome, Minister Michel, and thank you for taking time out of your busy schedule to be with us today.
Minister, you may now proceed with your opening remarks, after which we will go to a question period.
The Honourable Marjorie Michel, P.C., M.P., Minister of Health: Thank you very much, senator.
Honourable members of the committee, thank you for having me here today to speak to you about Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking by health information technology vendors.
[English]
This act is part of Canada’s plan to improve access to care. It also aligns with the government’s priority to build one Canadian economy by breaking down barriers between provinces and territories.
[Translation]
We also need to ensure that the health care system is working as efficiently as possible for all Canadians. To do so, we need to improve the way we use new technologies so that we can manage information more effectively.
[English]
You know there is a problem when, in 2026, we are still using fax machines to share health information. Access to health information is not a matter of convenience; it is a necessity. Data saves lives, especially when a full medical history is needed in an emergency.
[Translation]
The time that health care professionals waste printing and sorting documents is time that they’re not spending on what they should be doing, and more importantly, what they want to do: helping people. While 95% of physicians use electronic medical records, this information is often not shared among health care institutions, both within and across provincial and territorial borders.
[English]
As it stands, Canadian health data systems are fragmented, and the digital tools we use in health care cannot talk to each other. This is because we lack common standards and consistent rules for securely sharing health data.
[Translation]
This compromises patient safety and public health. This approach is inefficient and it places an unnecessary burden on health care providers, not to mention patients who are forced to repeat their medical history over and over again every time they see a doctor.
[English]
Lack of connected care can increase the risk of misdiagnosis, medication errors, treatment delays and unsafe treatments. With Bill S-5, we are building the health data infrastructure Canadians need and deserve.
[Translation]
The Connected Health Care Act in Canada will strengthen our health care system by requiring companies that provide digital health services to adopt common health data standards. This is critical to breaking down barriers, improving connectivity between systems and enabling better research.
[English]
The proposed Connected Care for Canadians Act is also about safety. By adopting common standards, including security standards, we will ensure health care serves patients and not the profits of shareholders.
I am already collaborating with my provincial and territorial counterparts to develop the regulations.
[Translation]
I applaud our shared commitment to interoperable digital solutions that improve the connectivity of our health care system.
[English]
Canadians strongly support change and want better access to their own health data.
[Translation]
This bill is part of our government’s plan to strengthen and protect the public health care system and give Canadians more control over their health. This is great news for Canadians.
I look forward to working with this committee to move forward with the implementation of this bill.
Thank you very much.
[English]
The Deputy Chair: Thank you, minister. 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.
Senator Hay: Thank you for being here, both of you. Thank you, minister, for your constant work on behalf of Canadians.
I will just do a broad question first, and then I will drill deeper in my second question.
We heard from you what is so promising about Bill S-5, and it’s definitely welcome to the system. What would worry you the most, let’s say in the first two years, of the rollout of Bill S-5?
Ms. Michel: I would say that I don’t think anything worries me about the bill right now because I am most worried about the state of our overall health system. I am in favour of everything that can improve the health care system. I am not saying that we will not face problems. Maybe, along the way, we will realize we forgot this or that, which I would be surprised because we have so many strong stakeholders working in the field. We are also looking at what is being done in other countries because we are late to this.
I feel that the risk is very low in finding something that doesn’t work, but I think the value is greater than any problem that I could speak to.
Senator Hay: I want to drill down a bit. I remember when working in the health care system — Women’s College, specifically, as an example — IT issues were a top frustration. We heard through your remarks about the burden on health care professionals.
What I am wondering about are the many different health record systems that are across all the PNTs spending millions of dollars. The University Health Network has a customized system. Epic is used at many others. Some may not have a particularly robust system.
Bill S-5 is a great solution, but I am curious about whether the government has factored in potential unknown costs on the connectivity and the potential system incompatibility, which I’m not sure would exist, and then even potential disruptions.
Ms. Michel: No, I don’t have that fear. Why? First of all, because all those companies that have tools to unlock data, there is a cost.
Second, I would say that the value of having to share data will save money at some point. Let’s say, to put all of this in place, it would have a cost, but the value of it is so great.
People are talking a lot about artificial intelligence. Great. We can do it. But until we get connected, there will be no value. It will be in this hospital, in this region — not even the region but the hospital and this clinic, and you cannot expand it.
When I speak with provinces and territories, this is why they are so keen. Right now, provinces and territories ask us to share best practices. For example, if I stay on artificial intelligence, sometimes they can’t use it because the systems are not connected, so it’s very practical for them.
Senator Muggli: Thank you for being here. So far, I have only heard great things from providers who want this bill.
As an example, I used to work in the home care sector, and because our hospital system and the home care system did not match, we repeatedly had home care workers go visit a client who had passed away that they did not know had passed away because those systems do not talk. If it had, the hospital system would have told the home care system, “Don’t go. This client has passed.” It was really complicated and difficult for those workers to repeatedly find themselves in this situation.
I am going to keep going on the financial considerations. It does cost money for vendors to get their IT departments to remove data blocking, and I am wondering if money will be provided to the provinces to support health authorities to build those integration pathways that are needed. It is not easy to connect. You have to find common identifiers and figure out how those systems can talk. That costs money.
Is there a commitment to provide funding to the provinces and then to the health authorities to be able to make the systems integrated?
Elizabeth Toller, Director General, Health Care Strategies Directorate, Health Policy Branch, Health Canada: Thank you for that question. Just to start off, in terms of the cost, I do agree with the minister that the cost of inaction is likely greater than the cost that will come to upgrade systems.
Senator Muggli: I do not disagree.
Ms. Toller: The cost of disconnectivity right now is up to $9.4 billion annually.
In terms of the first part of your question on vendors and the costs they may bear, I think standards, in a way, are quite welcomed by the vendor community, because right now they have to customize their solutions over and over again according to different jurisdictional requirements. For them, it is in their business interest to have a unified set of standards that can help them better compete and grow on a national stage, but also internationally because those types of standards are already required by law in other parts of the world.
We would see this as part of the regular business of upgrading their software —
Senator Muggli: Who will create the standards?
Ms. Toller: We will work closely with Canada Health Infoway, or Infoway, and the Canadian Institute for Health Information, or CIHI, which are the organizations that we rely on to develop the standards. The standards are heavily based on international standards that exist, so there is a harmonization effect.
The other thing that is really important is that we will not turn on the system overnight. We will consider a phased approach. There will be a lot of engagement with the vendor community to ensure that what we’re doing is done in an appropriate and collaborative manner.
Senator Muggli: Do you know how long that will take?
Ms. Toller: When you asked about risks, that is one of the things — to be able to feel the immediate benefits, we do have to go through the regulatory process, but that is actually a great process for us to, very transparently, consult with the community to make sure that we can co-design the requirements. They are based on requirements that largely already exist through the existing work of Infoway and CIHI through our Pan-Canadian Interoperability Roadmap. The legislation just aims to reinforce the work that we are already doing. We will make progress along the way.
Senator Muggli: Will we commit to broadband for all the communities that told us that this will not help if they do not have broadband?
Ms. Michel: The good news is now everybody is looking to the North, for example. If we are developing the North, you need to have connectivity. And you need to know, actually, it is one of my priorities to make sure — I am pushing our system to get to the communities that do not have it. Because not having connectivity is a big challenge.
What I would say, though, is how long it will take — it has to go fast. Why? Because, as you can see now, technology is moving very fast, and the longer we take, we will be behind. We are already behind. So we need to ramp up, but we need to do it in a safe way and by engaging with all parties, and this is what we are already doing with stakeholder communities and provinces and territories.
Ms. Toller: To answer your question —
The Deputy Chair: Thank you. I’m sure we will get back to you, Ms. Toller.
Senator Osler: Thank you, Ms. Toller and minister, for being here today. The preamble of Bill S-5 acknowledges that the health information of Canadians is not easily accessible to them and that patients need their health information to make informed decisions. As you know, Canada has a custodial model of health information where designated individuals or institutions — for example, a doctor, a hospital or a pharmacy — are the custodians. The custodian maintains ownership and control of the health record. Patients do not own their health record but have a right to access it. Some health information custodians have patient portals where patients can access their health information, but right now, these portals are separate and siloed.
At last week’s meeting, I asked about when these separate electronic health records are connected and what else would be needed to improve patient access to health information? Canada Health Infoway, the Executive Vice President of Connected Care, stated that:
Once those systems are connected, 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.
Minister or Ms. Toller, can you please elaborate on that and tell us more about how this bill will improve patients’ safe and secure access to all of their electronic health records?
Ms. Toller: Thank you for the question. That is a very important question to ask. Right now, in Canada, less than 13% of Canadians can access their complete records online. It is very challenging. I know that probably every one of us has experienced challenges in accessing our records.
What the EVP from Infoway said is right. Having common standards will help break down the barriers that patients face to access their data. I can give some practical examples. One is the example that you would have heard from Nova Scotia, where they have advanced the One Patient One Record, or OPOR, initiative. They have chosen a provincially centralized approach, where they have taken it on and tried to map and bring all sectors together, and provided patients access on their phones through a portal. New Brunswick has a similar one, where patients can use a bar code, and they have control over where the data goes and follows them. But a decentralized approach could also work, and it is actually already starting to work. You can go to your Google health app right now, and you can authorize access to other hospitals. There are some hospitals in Ottawa already that are participating in that network.
As the network of standardized solutions grows, the easier it will be for patients to choose the app of their choice where they wish to aggregate their data.
Senator Osler: This bill should enable health information sharing not just within your city or your region or your province, but across provincial and territorial boundaries. Would you mind — just for anybody listening — to know that is true. Correct?
Ms. Michel: Yes.
Ms. Toller: Yes, absolutely. The inherent goal of Bill S-5 is to improve patient safety and reduce the risks of harm from disconnected care. That can happen at the local level, within a province, but also across provinces and territories. Sometimes it is those vulnerable and marginalized communities who are the ones that are at most risk, especially those that live in rural, remote and Indigenous communities that have to see many specialists or travel across four or five jurisdictions to receive their care using medical travel. So it is imperative that their data follow them, and today it is not happening.
Even for people with complex conditions — I would say many of us have complex conditions that require seeing specialists in many different sectors —
The Deputy Chair: Thank you so much. I’m sorry to cut you off, but we have to get the other senators involved.
Senator Senior: Thank you. Welcome, minister. A few of my questions were asked already, so I have had to move on.
The Canadian Bar Association had some concerns around several definitions, including data blocking, and what that means in terms of agreement on that particular term, but also what is personal health information and electronic health information. Could you comment on those terms and whether or not those definitions are in place, or is there a process to put those in place?
Ms. Toller: If I may, the definitions in the bill are purposefully written broadly so that we did not inadvertently exclude anything. We do have the potential to restrict further if we need to do so in the regulations and through the regulations. This gives us the nimbleness and the flexibility to be able to consult widely with all different sectors of stakeholders to be able to make sure that the definitions work. So that would be our best advice is to not constrain them in the bill.
Senator Senior: I’m just trying to imagine, at the table with provinces and territories, the kind of negotiation that would need to happen at that level but also at the multiple-vendor levels, and how decisions are made, particularly around privacy protection and how you are able to make sure that everyone gets on the same page and how long that process is going to take.
Ms. Michel: On privacy protections, we have a law. It is under the same law that we are moving this bill forward. It is the privacy law. That’s very clear.
On working with provinces and stakeholders, as we have been working on that bill for a long time now, provinces and territories are aware, and we are engaging with them already. We are not sitting on our hands, waiting for the bill to pass. We know we need to move faster than previously.
This is why we are engaging in conversation already with provinces and territories and also with vendors to know where the irritants are because we will have to draft the regulation. By working with them up front, we are decreasing all these challenges.
Senator Senior: Thank you. Are all provinces and territories on board, including Quebec?
Ms. Michel: Quebec: yes and no. Quebec sent me a letter, and they said, “Minister, we are Quebec, so we are sending a letter saying that we have our own thing, but we do understand, and we will not fight.” When Quebec will not fight with you, it means that they are on board. What I am trying to say is also that Quebec has their own system already. They have their legislation in place. They are out front. Quebec is ahead of other provinces.
Senator Senior: Thank you both.
Senator Kingston: Thank you for being here. I’m going to ask a question that I do not think has been asked before, and I have only been made aware of it in the last couple of days as an issue. It is near and dear to my heart because I come from —
[Translation]
— New Brunswick, the only bilingual province in Canada.
[English]
Some members of the Standing Senate Committee on Official Languages have asked if there will be a linguistic requirement for the development of national interoperability standards. The reason why they are concerned is because they feel there could be issues if it is not taken into consideration in terms of legibility, use of accents and, in some cases, some of these things can even lead to corruption of files. Is that being taken into consideration? That is what they are asking.
Ms. Michel: It has to. You can be assured that it is on my radar, personally, because it is true. You need to address bilingualism if you are doing interoperability. You need to address it. You can assure them, yes.
Ms. Toller: Just to reassure you, both the organizations have released specifications in both official languages, and we are working collaboratively with New Brunswick now to support the adoption of bilingual digital tools.
[Translation]
Senator Kingston: Okay. Thank you for that.
[English]
This is a general question, and maybe I will speak to the department later about it. I am the sponsor of the bill. There have been some recommendations coming from places like the Canadian Medical Association regarding possible amendments to the bill, and then there have been others who have said, well, maybe these could be dealt with in regulations. My question is this: You have done some consultation and have been at this for a long time, so have you looked at the bill in terms of whether there are things that are missing according to some of your stakeholders, and if so, what are you thinking about that for the bill at this stage?
Ms. Toller: We have been at this for some time, and we had previously tabled this legislation in 2024. We have continued to engage extensively since then.
By and large, we feel that the bill is best served as a high-level bill that is aspirational and enabling, and the regulations should be the tool by which we can actively and transparently consult with stakeholders to address the details in the regulations.
This is the place where we can actually make the action happen. By and large, from my consultations, there are no significant gaps in the bill. The regulations are where we need to flush out the actions.
Senator Kingston: Thank you.
Senator Arnold: Thank you both for being here. We have certainly heard from a wide variety of witnesses, and I would say that there is great support for the bill. I have talked to many citizens who say, “Oh, yeah, that should have happened a long time ago.” So that’s terrific.
Senator Kingston stole my question because I live in Moncton —
[Translation]
— the first bilingual city in Canada.
[English]
We have two hospitals: French and English ones right beside each other, and there is not really good operability between the two of them, with 40% of the patients, approximately, going to both hospitals. It is really important. But also, in the summer time, in Shediac, have half of Quebec in our province. If they are still buying in, could you reassure that all of this will be working between the two?
Ms. Michel: Of course, because if they have access to personal data and they move to New Brunswick for one or two months, and something happened and they need medical care, it will be available, but they will also have access directly to their own record.
Senator Arnold: The other question that seems to have come up a number of times is in regard to data sovereignty. When Minister Solomon came to the Senate, he spoke about the importance of data sovereignty around things like health in particular. What kinds of reassurances do we have as far as the data that it will all be collected and stored somewhere safely in Canada?
Ms. Michel: Well, I will turn to Ms. Toller, but I will answer first by saying that we can only move with this if we can secure our data and have sovereign data. Of course, Mr. Solomon is the one leading — very passionately, I would say — this file, and we won’t move there if our data is not secure, now more than ever.
Ms. Toller: If I could complement that answer, it is true. In our health care sector, we rely on many companies from the U.S. Our entire acute care sector is dependent on U.S. vendors, but we have many Canadian vendors as well. Interoperability rules can build in security, sovereignty and privacy standards by design. What can be done is reinforcing things like data residency, for example, and these rules can apply regardless of where businesses are headquartered and whether they are in a cloud environment or not. There is also the flexibility to use contracts as a way to specify the need to have data residency and to ensure that the data is held here in Canada. There are some practical tools to help preserve data sovereignty.
Senator Manning: Welcome, minister. We are glad to have you with us.
Clause 7 allows the Governor-in-Council to apply the act in a province or territory if it determines that jurisdiction does have substantially similar requirements. While this appears to set a national floor, there was a concern raised that it could operate as a ceiling if jurisdictions feel pressure to align with the minimum federal standard. Could you explain what the government understands by the term “substantially similar” as a broad term, and could you outline specific criteria and safeguards both in regulation and federal and provincial discussions that will ensure that this provision drives standards upwards?
Ms. Toller: “Substantially similar” is not a new concept in federal legislation. When you hear from my colleagues from Innovation, Science and Economic Development Canada in the next panel, they also have legislation that has similar provisions in place.
The idea is to create a backstop that provides the minimum requirements. Then, the provinces and territories can adapt their laws to align with it, or they can choose to have it apply in their province. It’s basically an alignment tool to make sure there is national consistency, but it still gives flexibility in implementation. That was our goal with substantial similarity: to not be so prescriptive to impose on the provinces but to drive to alignment. The way the criteria will work is that they will be outlined in regulation, and we will consult with the provinces and territories on that to make sure they are comfortable with the criteria.
This is not something that is new. As I said, we tabled this bill before in 2024, and the provinces were broadly comfortable with the approach.
Ms. Michel: I would also add that we will help the provinces and territories who would need assistance in aligning their legislation because we know there’s a capacity challenge. They are completely on board with this exercise.
Senator Manning: Do you have a time limit in regard to the regulations and the consultations with the provinces and when you hope to have it all in place? Do you have any goals for that, or is it really just open-ended?
Ms. Toller: Generally speaking, regulations take 18 months to two years to take place.
Ms. Michel: Sorry.
Ms. Toller: But my minister says we have to move faster, so we will move as fast as humanly possible.
Ms. Michel: This is what I’m talking about with my provincial and territorial counterparts. We know we have to move faster. We can’t do things carelessly, but we need to move faster. This is why our departments are already working up front just to make sure that when the bill passes — well, we hope it will pass — that we can move very fast because it is an imperative right now.
My big worry — and why I’m pushing this bill now more than ever — is because I see a lot of new technology on the ground right now, and I don’t want Canada to miss our opportunity.
Ms. Toller: We’re not starting from scratch. That’s the other part. There is already progress happening through voluntary collaboration with the provinces and with Infoway and CIHI. We have an interoperability roadmap that has the specifications and standards already. As I said earlier, the goal of the bill is to reinforce them and make them an enforceable requirement for vendors. Progress is going to continue as we go through the regulatory process.
Senator Manning: Earlier, the minister touched on the issue of Quebec. I hear many provinces are positive about the bill. Is there any province or territory that has any concerns about the bill, or have you received broad support?
Ms. Toller: Broad support.
Ms. Michel: They all knew I was tabling the bill in the Senate and are very supportive. Depending on their own priorities and pressures, this is either a top priority or a lower priority. This is why it is my role to push on that side and support those with more challenges, but everyone is in favour of the bill.
[Translation]
Senator Petitclerc: Thank you, Minister and Ms. Toller, for being with us.
We have heard from witnesses about the potential dangers of this lack of connectivity. We have also heard witnesses tell us — I don’t have the exact figure — the number of hours per day that health care professionals can spend on administrative tasks and all that. We’ve seen that there is support from a large number of organizations. However, when this is up and running, we can imagine that there will still be an adaptation and learning curve in the field for health care professionals. So here is my somewhat broad question: Who will take care of that? How do we approach this support, this training and the tools to make it work well?
Ms. Michel: I think it was touched on earlier, the providers are the ones who have the expertise and will do the work. Even within the same province, you can have different providers, so those providers will work with provinces, hospitals and clinics. They’re already in the sphere of interoperability, but it’s the service providers. I don’t think there will be a learning curve. It will save time for health care professionals. It can be as much as six hours a day of administrative paperwork of all kinds. When they save that, the half-hour they spend learning the new system won’t seem like much.
Ms. Toller: It’s very important that we start thinking right away about change management with clinicians. That’s a lesson we learned as we went along. We already have a committee, with the Canadian Medical Association, with Canada Health Infoway and Healthcare Excellence Canada. We think about it from the outset. We want to make sure that we engage and consult the clinical community, because that’s very important.
Senator Petitclerc: So it’s not a concern on the ground, that aspect?
Ms. Michel: I’ll quickly explain. I saw it with my own eyes in Val-d’Or. There was a doctor who was ready and waiting for me in Val-d’Or with a pile of files. He took me downstairs to the pharmacy. He explained to me that this was how things were for them. He showed me the various screens he had in front of him, how many screens he had to open and close to input patient data. Just imagine: For him, it will be wonderful to have a single screen. So there’s no push-back from the community of health practitioners. We just need to support them.
[English]
Senator Cuzner: Thanks very much, minister and Ms. Toller. Thank you so much for being here today. My questions were more about data sovereignty, but I appreciate your responses to Senator Arnold’s questions. Maybe I’ll go with this one.
You said earlier that Canada isn’t really a leader in this area. The U.K., the EU and Australia have all embarked on this, and they’re further down the road. Are there models that you’re seeing that can be more readily applied here in Canada? Are there lessons learned from those jurisdictions, or pitfalls that they’ve pursued? What are we learning from the studies of these other jurisdictions? I think the department did a fairly extensive study outside the borders.
Ms. Toller: Yes, we’ve been looking closely at international models in the U.S., the EU and Australia. I would say that the U.S. is probably the closest working model to what we’re aligned with. The 21st Century Cures Act has clear rules around interoperability and prohibitions around data blocking, as well as exceptions for legitimate issues, such as privacy risks or cybersecurity concerns. That’s the model that we’re most closely looking at. We are engaging directly with them for advice, as they have applied several versions of interoperability rules, since their bill has been in place.
The one lesson learned we do need to think of from the U.S. perspective is that they were much where we were maybe 20 years ago. Their first step was to incentivize providers to use certified and interoperable tools, but they did so without interoperability rules. Those came out later with legislation that required the vendors to have interoperability standards in place, so we’re taking the reverse approach. They also told us to start small and build incrementally, so we’re also doing that. We’re starting with a small core data set required to move across sectors, like a patient summary.
Senator Cuzner: Is that the approach you will adopt?
Ms. Toller: Yes, absolutely. We’re considering how to incentivize and organize change management for clinicians right from the get-go.
Ms. Michel: I will add, when we are trying — now we are doing that a lot, comparing what is happening in other countries, et cetera.
I think the challenge we face sometimes in our own health care system is because we are a federation. So sometimes, oh, you know, in Belgium, in France, they are doing this. Yes, but they are not 13 entities with their own realities, I would say. And you have to work within these parameters.
I think this is one of the reasons why the U.S. and it’s — and we have a good relationship; I have to say that. On many fronts I think Health Canada has — not at the political level, but on the bureaucrat level — a strong partnership with the U.S.
The Deputy Chair: Minister, the strength of your collaboration is truly showing up today. Thank you.
We only have four minutes; you may want to just ask your questions and ask for a response in writing.
Senator Hay: I was curious about the lessons learned, and we had a conversation about this, Ms. Toller, from the prescribed infrastructure bill. And I know that connected care is not infrastructure, but what are the lessons learned from that so that we know the connected care, Bill S-5, will thrive and not thrive?
Senator Senior: I want to get back to the sovereignty question but more from the perspective of Indigenous sovereignty. If Senator Greenwood were here, she would ask that question. Could you share with us how you are dealing with that?
I also had a question around accountability and where accountability will lie — I’m thinking about a data breach, but I’m also thinking about any other kind of thing, because doctors have their insurance coverage. Will this bill change any of that in any way?
Senator Muggli: I’m curious how many vendors exist or are in use in Canada? And I was curious around — because many of those vendors are not Canadian; in fact, they’re American. Do you anticipate or are having any difficulty dealing with vendors that are not Canadian?
Senator Osler: My question comes from Senator Muggli’s question about cost, because there will be a cost for the software patch, or whatever technical update may be needed to connect the systems.
I’d be interested to know if you’ve had any forecasts or discussions about what those costs could be and who, potentially, could be responsible for paying for those costs? Would they be passed on from the vendor to the doctor’s clinic or to the pharmacy or to the hospital? Any information or discussions on costs would be appreciated.
The Deputy Chair: Thank you. Using the chair’s prerogative, I do get to ask one question with a written response. This refers to the definitions section in section 2. There is no definition of “health service.” Can you comment on this and what definition would you be using? I’m thinking, would a chatbot’s advice constitute a health service? That’s just for you to think about.
Senators, this brings us to the end of our first panel. I would like to wholeheartedly thank the minister for being with us and for your testimony today. It was very informative.
Ms. Toller will be continuing with us so we will have more questions for you.
Joining us today for the second panel, from Health Canada, Elizabeth Toller, Director General, Health Care Strategies Directorate, Health Policy Branch; from Innovation, Science and Economic Development Canada, Runa Angus, Senior Director, Marketplace Framework Policy Branch; from the Office of the Privacy Commissioner of Canada, Marc Chénier, Deputy Commissioner and Senior General Counsel; from the Competition Bureau Canada, Bradley Callaghan, Associate Deputy Commissioner, Policy, Planning and Advocacy Directorate; and from the Department of National Defence and the Canadian Armed Forces, Major-General Scott Malcolm, Surgeon General.
Thank you for joining us today. For your opening statements, you will have five minutes each, followed by questions from committee members. Ms. Toller, the floor is yours.
[Translation]
Ms. Toller: Madam Chair, honourable senators, thank you for giving me the opportunity to share my perspective during this second panel.
I also wish to acknowledge that I am speaking to you from the unceded territory of the Algonquin Anishinaabe Nation.
Let me get right to the point: the tangible impact on patients and care teams.
Theresa lost her son Dan, who was only 17, after two visits to the emergency department. She believes that real-time access to his file would have enabled the family to more effectively flag certain elements in his file.
A patient required an urgent surgical procedure outside her home province but was negatively affected because the care team could not access her medical record, which was located in her province of origin; this information was essential to performing the procedure safely.
According to earlier testimony from members of organizations such as the Society of Rural Physicians of Canada, the consequences are often worse for people who are vulnerable or underserved — particularly in rural, remote and Indigenous communities — and for those with complex needs requiring the involvement of multiple providers and sectors, or even, as is quite often the case, another province or territory. We still see families having to bring in the information themselves, sometimes on a compact disc. Why are we still using obsolete technology like compact discs and faxes in 2026?
That is why we say that connected care saves lives: When information follows the patient securely — especially from one provider or sector to another, including from one province or territory to another — the risk of negative outcomes is reduced. We are making progress through voluntary pan-Canadian collaboration, but it remains uneven. International experience shows that without clearer expectations, adopting voluntary approaches will not ensure consistent access across the country. Bill S-5 establishes a national foundation for safer access to, and better sharing of, health information, by improving interoperability and prohibiting data blocking when access or exchange is permitted and protected.
[English]
At its core, the bill improves patient safety by reducing harm from disconnected care and enabling the seamless exchange of information across sectors and provincial and territorial borders. It helps people access their own health information and have it follow them wherever they receive care across Canada, within the rules and with appropriate consent.
It helps providers deliver coordinated, high-quality care with more complete and timely information, and it supports, overtime, better system insights. It focuses on health IT vendors operating across Canada and sets common expectations in two key ways.
First, it advances interoperability standards so systems can connect and exchange information consistently. Second, it prohibits data-blocking practices that interfere with lawful, privacy-protected access, exchange or use of health information, including by patients, with exceptions for risks like privacy and cybersecurity.
This reduces delays in access to critical health information, sets clear expectations across a patchwork of requirements and supports a more predictable market for vendors and for provinces and territories.
I would also like to be clear about what the bill does not do. Bill S-5 does not create new authorities to collect or disclose personal health information. It does not compel sharing or override consent. Federal, provincial, territorial and Indigenous privacy and governance rules continue to apply. The bill simply ensures interoperability isn’t the barrier when sharing is permitted and consented to. It respects Indigenous data sovereignty by focusing on vendor behaviour, not data custodianship. Regulations will be informed through distinctions-based engagement.
On cybersecurity, no law eliminates risk, but standardized digital exchange is safer than fax, paper or unsecured email, and standards can build insecurity by design.
In closing, Bill S-5 is a targeted, foundational step toward connected care, so when the rules allow information to move, technology can enable it safely and in the public interest. It will help unlock health data to support better health care, better decisions and better outcomes, while supporting innovation in Canada’s digital health sector.
Thank you. I welcome your questions.
The Deputy Chair: Thank you, Ms. Toller.
Mr. Chénier, you have five minutes.
Marc Chénier, Deputy Commissioner and Senior General Counsel, Office of the Privacy Commissioner of Canada: Madam Chair and members of the committee, thank you for the invitation to speak on the subject of Bill S-5, the proposed Connected Care for Canadians Act.
Commissioner Dufresne sends his regrets for not being able to be here himself, but I am pleased to represent him today to discuss the privacy implications of the bill with you.
The mission of the Office of the Privacy Commissioner of Canada is to protect and promote Canadians’ fundamental right to privacy. Its mandate is to oversee compliance with Canada’s federal, public and private sector privacy laws, which set the ground rules for how federal government institutions and businesses handle personal information.
Data access and mobility are persistent challenges in the health sector due to technical incompatibilities between systems, which can result in incomplete records, duplication of medical histories and tests and delays in care.
Bill S-5 aims to address these issues and to support responsible innovation by accelerating the adoption of common standards to enable secure information sharing across health platforms and to improve interoperability.
[Translation]
A system that is connected, secure, and that allows health information to be used efficiently will help governments, health care administrators and researchers make evidence-based decisions that will improve health care delivery. This bill would help to operationalize a modern, secure and interoperable digital health communication infrastructure.
This objective was one that was endorsed by the OPC and its provincial and territorial counterparts in a 2022 resolution on securing public trust in digital health care.
Health information is one of the most sensitive types of personal information. Harms resulting from data breaches in the health sector can include potential discrimination and stigmatization, as well as financial and psychological distress.
Reasonable safeguards around digital health care can support Canadians’ trust in the health system and also mitigate financial and reputational costs that accompany data breaches.
[English]
By promoting interoperability between health information systems, Bill S-5 would help to ensure that personal health data can flow more easily across systems, giving patients greater access to their health records and more control over their information.
The OPC supports a more interoperable digital health system that includes measures to ensure that privacy is properly protected. To that end, the OPC is pleased that the bill’s interoperability provisions specify that the access, use and exchange of personal health information are not required where it would be prohibited by privacy laws. We recommend that the proposed data-blocking prohibition also be subject to a similar exception.
Under Bill S-5, many requirements and standards, including any privacy and security requirements, are left to regulations. It will be important for the OPC to be consulted on the development of any regulations that pertain to privacy and security.
It will also be important for the OPC to continue to collaborate with provincial and territorial counterparts to facilitate regulatory alignment in an increasingly interconnected and digitized health sector.
Moreover, health information technology vendors will already be subject to applicable private and public sector privacy laws across the country, such as the Personal Information Protection and Electronic Documents Act, or PIPEDA. This highlights the importance of modernizing PIPEDA to ensure that Canadians are protected in all sectors, including health.
[Translation]
Thank you.
I would now be pleased to take your questions.
[English]
The Deputy Chair: Thank you, Mr. Chénier.
Mr. Callaghan, the floor is yours.
Bradley Callaghan, Associate Deputy Commissioner, Policy, Planning and Advocacy Directorate, Competition Bureau Canada: Good afternoon, Madam Chair and honourable senators. Thank you for the invitation to appear before you today.
[Translation]
My name is Brad Callaghan and I’m the Associate Deputy Commissioner of the Competition Bureau’s Policy, Planning and Advocacy Directorate.
The bureau is an independent law enforcement agency that protects and promotes competition for the benefit of Canadian consumers and businesses. We administer and enforce Canada’s Competition Act, a law of general application that applies to every sector of the economy.
The Competition Bureau has long been active in promoting the importance of data portability to competition. We know that more competition pushes companies to innovate, invest and deliver the best solutions to customers. Data portability makes switching easier, ensuring that companies have to compete for customers on the merits of their products.
[English]
Our most recent study on data portability suggests that the ability to easily and securely transfer data has huge potential for our economy, saving consumers both time and money. But getting the data out from one provider is only one part of more competitive digital markets. For switching to be meaningful, digital systems need to be able to interact with one another. This is interoperability, an idea that is central to this committee’s study.
In Part 1 of the bureau’s Digital Health Care Market Study, released in 2022, we looked at how to unlock the power of personal health information so that Canada’s digital health care sector could fully benefit from competition. We found that the majority of health care providers in Canada used a primary health care electronic medical record, or EMR, system owned by one of three companies. Accessing and sharing information within those systems could be difficult, meaning much of Canadians’ personal health information was locked within the system of very few companies.
We made three recommendations to Canada’s policy-makers to improve competition. First, harmonize privacy and data governance rules across Canada. Second, require primary health care EMR companies to comply with anti-blocking rules. Third, establish interoperability standards for primary health care EMR systems.
Our recommendations are an effort to not only ensure that health care providers can easily switch between companies but also to incentivize entry from other players in order to increase competition. I’d be happy to discuss these recommendations in more detail during our question and answer session.
In closing, the bureau is encouraged by the initiative proposed in Bill S-5 to put these ideas into practice. We see them as a positive step toward implementing our recommendations on interoperability and compliance with anti-blocking rules.
Before answering your questions, I would note that the Competition Act requires that the bureau conduct its investigations in private and protect the confidentiality of the information we obtain. This obligation could prevent us from discussing some of our current or previous investigations.
Thank you.
The Deputy Chair: Thank you, Mr. Callaghan.
We will now proceed to questions from committee members. For this panel, senators, we 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 Osler: Thank you to all the witnesses for being here today. My question is for our Surgeon General. My question is on cybersecurity and how the Canadian Armed Forces secures the electronic medical records of its patients.
As you know, the military’s health services operate independently from Canada’s 13 provincial and territorial health systems because regular force members are explicitly excluded as insured persons under the Canada Health Act, such that the military’s health system is often referred to as Canada’s fourteenth health system.
Canada’s health sector is a frequent target for cyberattacks. When it comes to cybersecurity, this committee is learning of the inherent vulnerability of centralized systems, whereby an attacker who compromises a centralized repository can then have access to millions of health records and the private health information held within.
Major-General Malcolm, can you tell us more about how the Canadian Armed Forces’ health system protects its patients’ electronic health records whilst harmonizing the varying federal, provincial, territorial, privacy and cybersecurity laws and regulations? Just a little question.
Major-General Scott Malcolm, Surgeon General, Department of National Defence and the Canadian Armed Forces: Madam Chair, thank you for the question.
The answer to this is a bit of a double-edged sword. First, our pan-Canadian and, arguably, international medical record, because it is the same one that is used on deployments overseas, is housed within the defence-wide area network, so within the military’s network, and therefore has all of the protections that are associated with that network, which is protecting all of the rest of our data.
In many ways, we’re blessed with that, but the double-edged sword of it is that it makes connecting with other systems, at this point, not possible. Effectively, we are not connected with any provincial or territorial health system. This bill has a foundational effort in correcting some of that but, regrettably, will only be the beginning of other changes, in our estimation, that would need to occur, which fall into some of the notes on privacy and security, which tend to be interlinked.
For us, I would say that centralized records have the benefit that you can see, perhaps an easier way to protect them from the cybersecurity perspective, but you have to be careful that you do not make them so secure that you then cannot connect to any other system.
Senator Osler: Major-General Malcolm, you mentioned a bit about the CAF’s health system. It would not be able to be connected, but how could this connected care act improve health care for CAF regular members?
MGen. Malcolm: Madam Chair, thank you for the follow-up question.
In this way, for us, it is not only about improving CAF member delivery of care in Canada, it is really internationally as well. I think some of you are aware, we are working diligently with our NATO partners to figure out, in the event of, say, a large-scale combat operation, how we may seamlessly move patients from the point of injury on a battlefield all the way back to Canada. For us, again, this data standard will help ensure that we have the ability to be connected, not only in Canada but abroad, aiding in the seamless delivery of care to our members.
Again, the bill, for us, is the beginning of other things that need to occur because if the privacy and the security aspects are not addressed, it will still be a bridge too far for us to achieve the interoperability that we will require.
Senator Osler: Thank you.
The Deputy Chair: Following on that, talking about privacy, Mr. Chénier, I saw you nodding your head. Did you have something to add?
Mr. Chénier: No. I agree that it is important to have appropriate safeguards in place when we are increasing access to health information. I agree with Major-General Malcolm’s statement that that’s key in any system, especially where access is made easier. That’s why I think it will be extremely important in the development of the standards, specifications and requirements through regulation that we have safeguards and requirements that meet the importance of maintaining the safety of that data.
The Deputy Chair: Thank you very much.
Senator Muggli: Thank you for being with us again. I think my question might also be for you, but it may also be for Mr. Chénier. It is about patients’ desire to block data, or a client.
I was thinking of an example. Because we were talking about core datasets, I am making an assumption that gender will be part of a core dataset — basic demographics. If a patient wishes to block part of the core dataset, such as gender, from one provider but maybe they are okay if other providers have it, is that even possible?
Ms. Toller: Thank you for the question. I think it is important that we have standards for sex and gender-based identity, and we do that through the Canadian Institute for Health Information to ensure that there is consistency in the way it is collected across the country. That is something that will be considered in our standards.
The issue of being able to control your health data is very important, and I would point to the example of Nova Scotia that you heard about. They have an ability to say “no” in terms of who they want their data to be shared with. That is just a practical example of how that can happen.
In terms of whether or not they can prescribe specific areas, I think I will have to reflect on that, and maybe I can come back to you in writing if that’s okay?
Senator Muggli: I feel like that’s going to come up one day.
Ms. Toller: And maybe my colleagues may have some reinforcement.
Senator Muggli: Have you developed a core data set yet?
Ms. Toller: Yes. It is actively —
Senator Muggli: Is that something you can share?
Ms. Toller: Yes. It is a public, Canadian core data set that we’re developing with CIHI and Infoway. Absolutely. It is publicly online.
Senator Muggli: Yes, it would be great to receive that. If you could send it along to us, that would be great.
I have one more question. I am trying to understand the role of ISED in this.
Ms. Toller: I can start. The one thing that I keep reemphasizing is that our bill works within the guardrails of existing legislation, and one of those pieces of legislation is federal privacy legislation, PIPEDA, which my friend here is responsible for overseeing.
We work very closely together, and they are also seeking to modernize privacy legislation, which is part of the broader picture of what we need to do in driving health data interoperability.
Senator Muggli: Yes, I do recall Minister Solomon making a commitment on that recently.
Ms. Toller: Maybe Ms. Angus can share more.
Runa Angus, Senior Director, Marketplace Framework Policy Branch, Innovation, Science and Economic Development Canada: I will just add that PIPEDA is the law that governs the sharing of information. While Bill S-5 will increase interoperability, all vendors will still be subject to the applicable privacy legislation, which, in some cases, may be PIPEDA, in others may be provincial health or privacy laws. We all have a role to play in this.
Ms. Toller: Their law applies to all sectors of the economy; our law is to apply to the health sector, and you need that to be able to define the requirements for how data is transferable and the mobility of the data.
Senator Muggli: Okay. Thank you for that.
Senator Arnold: On PIPEDA, it seems to come up in a lot of different contexts. Do we have any time frame on when a first version is coming?
Ms. Angus: As you know, we’ve tried twice to modernize PIPEDA in 2020 and 2022. The minister has made a very public commitment to modernize PIPEDA. It will also dovetail with the AI strategy, which is coming soon; so watch this space.
Senator Arnold: My next question has come up a lot as well, and I have not gotten a clear answer yet. How would you answer the question of who owns my data — me being a patient?
Ms. Toller: We have a right to it, but our system — as Senator Osler has eloquently explained, our system is — the physicians, the clinicians are the ones who are the custodians, the ones accountable for taking care of our data. So we have a right to it, but we have a custodial model.
Senator Arnold: So the patient still owns their data?
Ms. Toller: Well, they have a right to it, but, as Senator Osler was saying, the custodians are the physicians. So we don’t own it.
Mr. Chénier: Maybe I can just — we don’t own the data physically, but we have rights under PIPEDA and under provincial legislation that applies, that gives us access and control of our own personal information, and that includes health information.
I have to consent to them collecting and using the data and to disclose it under the privacy legislation that is applicable. I don’t necessarily own it in terms of owning it, but I do have rights over it, and I can control it, and that can include, in some cases, ceasing to give consent for them to have that data.
Ms. Toller: Which is the answer to the other question about gender. And I do have a quick precision on that question. Each privacy law in the provinces and territories does specify practices for how patients can choose to withhold data, including on gender, I would assume.
[Translation]
Senator Petitclerc: Thank you for being with us today.
I think my question will be for you again, Ms. Toller, but perhaps for the other witnesses as well.
I’m trying to get a sense of the limitations or at least some of the limitations of Bill S-5. We hear so many good comments about how this could have a positive impact, in a meaningful way, for patients. That said, we live in a country where connectivity and internet access are uneven. When you think about the whole regulatory process, once this is set up, there will still be a fair number of Canadians, including those in remote and rural areas, who may not have the same access as everyone else.
Is that something that’s being considered? Is any work being done to ensure that, when we get to that stage, there will be that equity in terms of the connectivity we want for everyone?
Ms. Toller: That’s a very good question. As we mentioned before, those are often the people who will benefit the most.
Senator Petitclerc: That’s right.
Ms. Toller: So it’s very important. I can say that we will engage with them to find concrete strategies to ensure that we can support them. We will work with our partners to prioritize them. It’s true that we see real benefits for them, especially those who can benefit from virtual care, for example. We need connectivity and interoperability to make it work. Maybe that’s a question you can ask Dr. Mendez tomorrow. He has some good insights on this.
Senator Petitclerc: Thank you very much.
A lot of questions have been answered.
One witness told us that we have to make sure that the standards are not such that they will discourage provider innovation. You’ve heard that as well. Is that something that worries you?
Ms. Toller: No. I’ll start, and maybe my colleague Bradley Callaghan can help as well.
Senator Petitclerc: Yes, please.
Ms. Toller: Providers want consistency. They want a pan‑Canadian market, not 13 or 14 different markets. They want international harmonization as well, so standards that are aligned with the requirements already set out in legislation in the United States and Europe. It costs them a lot of money to have to tailor their solutions to the various requirements of the provinces and territories. We’ve heard a lot of support from providers. This will encourage competition and innovation in Canada instead of putting too much pressure.
Bradley, would you like to add anything?
Mr. Callaghan: Yes. Thank you.
As the Competition Bureau, we support the approach of this bill. I’ll say a few words in English, since it’s a bit technical for me.
[English]
We did have one recommendation, as a part of our market study, in terms of thinking about how to set an interoperability standard, that did say, try not to be too rigid in the sense that it could get in the way of innovation.
I think there are a lot of opportunities that Health Canada would have in terms of setting the regulations that would flow from this. Our view is the important thing at this stage is to get interoperability working. But, yes, this is common in all areas of regulation.
We certainly want to ensure that innovations that can happen within markets are going to occur because the idea is to incentivize entry. Competition can really only work if companies do not need to meet a standard that is so high that it could limit what they can actually bring to the market.
But first and foremost, we want to address the harm, and here the harm is, from our view, obviously, a lack of competition. So we’re going to get that from this legislation. From the point of view of Health Canada, obviously, the issue of the day is better care for patients.
Ms. Toller: If I could add one thing, if there is time? It also levels the playing field for players big and small. You hear a lot about vendor lock in with the larger players. By having a level playing field of common standards and clear data blocking rules, it allows some of the smaller innovators to better integrate with the big players. You hear a lot about excessive fees that are imposed by the big players on third-party innovators, and it cripples them in terms of being able to integrate. That’s an example of data blocking that we would consider.
[Translation]
Senator Petitclerc: Thank you.
[English]
Senator Senior: Ms. Toller, I said I may not have any more questions. I think I may have lied, for you particularly. I am thinking about consent based on something you said, and I am wondering how consent will be enacted compared to how it is currently. You talked about what is happening in New Brunswick and that people — I think you mentioned to someone that people have the right to block a particular type of access or grant that access. Is that how you are imagining we will all be able to do it, to be able to give consent and not give consent?
Ms. Toller: Our legislation will not change the rules for consent. The way it works today will continue to operate within the guardrails that exist. What standards can do, though, is create consistent requirements for consent, aligned with the rules that exist already. It can help standardize the approach.
Senator Senior: Maybe I will give a personal example from my mom when she was hospitalized. I just assumed I had a right to her file because we had responsibility for her, and I was able to see notes in her file that were not complimentary of us who were advocating on her behalf. I’m wondering if I would be able to see such things on my phone, based on the notes that health providers would make. Do you expect the same kind of information to be in these files? Are there cases where it would be left out?
Ms. Toller: The example of Nova Scotia is a good one, where your mom could give permission to share her record with you as a caregiver, or she could share it with other people. She is the one who has control.
Senator Senior: Yes. I am thinking of the physical file and translating that to what the system will be. I am just wondering if there would be a difference with the information moving from one system to the digital system.
Ms. Toller: The standards will help ensure the data that is collected is consistent so that when it does share, it can be interpreted and have a shared meaning.
Senator Senior: Thank you.
Mr. Chénier, you spoke about privacy implications, and you used the words “reasonable safeguards.” I’m curious about that. Do you get reasonable safeguards through regulations or standards, or both?
Mr. Chénier: Thank you for that question, senator. In terms of safeguards —
Senator Senior: I’m sorry. And what do you mean by reasonable compared to not reasonable?
Mr. Chénier: Okay. The safeguards that are in place have to be reasonable in light of the sensitivity of the information that we’re dealing with. In the case of health information, we’re talking about very sensitive information because of the harms that can occur if it is disclosed or breached. Like I mentioned in my opening statement, we are talking about potential financial consequences, discrimination, stigmatization and emotional distress. There are a lot of potential harms that can result. What would be reasonable in the case of very sensitive information is something at a high level in terms of safeguards.
We have not seen the regulations, but I am presuming that they will mandate different safeguards that will be required. That could include, for example, up-to-date antivirus programs, encryption, multifactor identification and strong passwords.
Ms. Toller: Exactly. That’s what I mean by saying we will bake in privacy and security by design. We will refer to the existing rules to ensure that there are strong safeguards and consent protocols, and the technical standards can help you verify consent throughout the system.
Senator Kingston: Thank you again. There are a couple of things that I would like to touch on. The first is to go back to you speaking about the custodial framework in terms of the data, and there was a witness from the Canadian Bar Association who talked about moving toward more of a stewardship model, which, of course, then also brings the patient closer to their data, if you will. Is there movement toward that? Is there a wish to do that?
Ms. Toller: I like to be humble when I speak about this legislation in that it is one important piece of a broader tool kit, and there are so many different efforts under way, with our provincial and territorial colleagues and with CIHI and Infoway, to advance the broader agenda around improving access to health data.
One of the things that the provinces and territories agreed was to better align their policies and regulations related to health data; and one of the first areas that they agreed to focus on was health data stewardship. They tasked the Canadian Institute for Health Information to come up with a pan-Canadian framework for health data stewardship. The essence behind that is trying to shift the culture toward a culture of better data sharing and stewardship that is in support of the public good and that balances the need to protect privacy, which is incredibly important, but does not focus only on the consequences of privacy breaches. It focuses on the real risk of not sharing data.
So CIHI is leading the way in that way. They are providing sorts of tool kits to the provinces and territories on how they can adapt their privacy rules to build a stewardship mindset into their work, and to create a community of stewards across the provinces and territories that can share best practices.
This is a complementary effort that is a harder one — because changing culture is tough — that is meant to complement our legislative effort on interoperability.
Senator Kingston: I am going to tag on to what my colleague, Senator Senior, was speaking about. We have a lot of narrative going on in our charting in health care — if I can call it that — and there is a move two ways. One, I would like your ideas on the use of the International Classification of Diseases, or ICD, codes more generally, because that’s good not only for capturing what you need to, in terms of patient history, but also for research purposes when you de-identify it. But the second part of that is more and more use of the scripts. For example, I go to see my nurse practitioner, and our conversation is recorded, and then AI helps to summarize that conversation. I do not understand how that gets transmitted or would be part of the interoperability, but if you could just comment on those two pieces.
Ms. Toller: Could you clarify the second piece, Senator Kingston? I missed that part.
Senator Kingston: I am just forgetting what it is called.
Ms. Toller: So, yes, ICD codes are one of the many standards that we will be considering. It is a terminology standard. It is the International Classification of Diseases, so it is standardized coding for reporting, analytics and billing. It is already baked into CIHI’s national data set, so it will be a part of the standards that we will consider.
In terms of AI Scribe, yes, it is a bit of a game changer in primary care. In fact, Canada Health Infoway has launched a very successful program, and we are world leading in the adoption of AI Scribes in primary care. They can have a really huge impact not only in reducing the amount of charting and time that it takes for providers, but it can help with the structuring of the data and supporting our interoperability. Having consistent standards actually does support AI Scribe use as well.
MGen. Malcolm: If I could just add one point, Madam Chair, it is just a caution on the use of ICD. We use them presently within our health medical record. The challenge is that the language is not the common language used by the clinician, so it can impede coding.
I will just give an example: low back pain. If you are not conversant in ICD-10, you may not find dorsalgia in there. There has to be a happy medium between coding and the ease with which the codes can be used in common parlance. There is a way to do it, but we have noted that if you strictly go with ICD-10, you could risk using “other” as the diagnosis all too frequently.
Ms. Toller: There are many standards. There is a large variety of them, and what CIHI and Infoway do is create a Canadian implementation that takes all of those into account and works with the Canadian context. That’s one of the mitigations.
Senator Osler: Ms. Toller, my question is for you. Senator Kingston and I are on the same wavelength because it was on the model that we have: stewardship versus a custodial model. This bill does not change the custodial model, where it is the hospital, the health clinic, the doctor’s office or the pharmacy that will continue to be the custodian of our health information. It’s not changing to a stewardship model, where we would own our health information data.
We have heard about it, and we did hear about it from witnesses last week. There was more than one who talked about going to a stewardship or a decentralized model because that would provide patient sovereignty. You would own your data distributed storage, so there would be a smaller target for cybersecurity attacks, a smaller blast radius and a good audit trail so that you know who is accessing your data because you have to give permission for this. I think you cleared that up with Senator Kingston’s question.
My new question is this: I believe that doctors’ offices, hospitals, health systems, pharmacies and all of those that use electronic health records would be captured, but what about some of the other health care professionals, like audiologists, speech therapists or psychologists, who may stand alone, not in a hospital? Would their electronic health records be captured under this legislation as well?
Ms. Toller: Technically, yes. We want this to apply to all health care delivery, but we will likely start small, in phases and build incrementally over time. That’s the lesson we’ve learned internationally. If we try and do it all at once, we won’t succeed. We want to start with that key patient summary, for example, and in those key sectors — primary care, acute care and long‑term care — to make sure that happens, and we will then build over time.
Yes, you’re right. We’re not, by law, changing the custodianship within this bill, but I believe it supports the shift to stewardship because it enables the ability of patients to access their own record, and it is patient-mediated access. If I choose to use my Google app to connect it to the Ottawa Hospital and my primary care clinic, that is me being a steward of my health data.
It’s helping us get to that point and making sure that the technical foundation is there for stewardship to happen as we go.
Senator Osler: Since Bill S-5 targets information vendors, wouldn’t this also capture electronic medical records, or EMRs, in use in private surgical centres and clinics?
Ms. Toller: Especially if they are private clinics that are publicly covered, yes. I’m just making that distinction because I think sometimes in health care, we make an assumption that private means that it’s private. We have a lot of private delivery within our public health care system.
Senator Osler: I’m asking about private paid, private admin and delivery.
Ms. Toller: At this time, we want to start small. That is my response.
Senator Osler: It’s an aspiration that it will be done one day.
Senator Muggli: I was just imagining 10 different databases that have 10 different providers with 10 different ICD codes, and you’re the eleventh provider that comes in and sees 10 different ICD codes. Is that even helpful? Then you are starting from scratch. There could be some problems as well with merging all this data.
Ms. Toller: There would be one Canadian core data set that they have to follow that brings in all these different kinds of standards.
Senator Muggli: Right, but what if, among the databases, that one has an ICD code assigned by one particular physician and that one has a different ICD code assigned by another physician? I imagine there will be some complexities.
Ms. Toller: Yes, but all the other countries that have done this have figured it out.
Senator Muggli: That’s actually not my question. I have been involved in health care for a long time in leadership roles and have signed a lot of data-sharing agreements so that we could share platforms, and I’m just wondering if there is still going to be a requirement then to sign data-sharing agreements between platforms.
Ms. Toller: I appreciate that question. One of the foundational pieces that is going to be very helpful for our legislation is what Canada Health Infoway is leading. It’s called a trusted age change framework. My simplest way of explaining it is that it is kind of like a Yellow Pages of certified people in a network. It can be vendors or organizations who conform to a common agreement. They don’t have individual agreements between each organization, but instead have a common legal agreement and a certification that they meet the right security and privacy protocols, and that they are eligible to be within that work. This is how it works in the U.S.
Senator Muggli: This is great for administrators.
Ms. Toller: It’s called the Trusted Exchange Framework and Common Agreement, or TEFCA, and we’re trying to build a similar model here in Canada, and it is how to operationalize the interoperability.
Senator Senior: I’m going to try to be aspirational because I think that’s the intent of much of what you’re saying in terms of beyond the technical, but to think about what is possible the day that this becomes reality. One of the things that several communities, including Indigenous, Black and other racialized SLGBTQ2S communities, who have experienced discrimination in health care, sometimes at the risk of their lives, I’m wondering about the possibility or the ability for disaggregated data to be part of what is possible as a result of moving to this digital system. Could you speak to that?
Ms. Toller: We’re already moving toward a stronger emphasis on disaggregated data. This is something Statistics Canada takes very seriously and has had a program under way since 2021, where they are focusing on disaggregation of data, whether it is sex and gender, race-based data or Indigenous. The Canadian Institute for Health Information, as well, especially in respect to the data that they’re collecting against the common indicators we’re using to measure progress against the funding that we provide to provinces and territories.
There are over 40 indicators that we use to measure progress, whether access to your regular care provider or, in our case, access to your own health record and access for clinicians. There is a big emphasis on the collection of disaggregated data, so it’s already under way.
Mr. Chénier: As we mentioned earlier, I think everybody agrees that there is a need to modernize PIPEDA, and one thing that is missing right now in our privacy legislation is rules around the de-identification of data. It’s important for our organizations to have a clear set of rules of what they need to do in order for information to be de-identified so it can be disaggregated and used as a secondary use in a safe manner.
Senator Senior: Okay. Thank you.
Senator Hay: My apologies for missing the first part of this. If this has been asked and answered, just ignore me. I think we have a bit of a race to the start line for Bill S-5 and the AI strategy. I want to get back to data sovereignty just to put a clarification on the table. When you’re talking about data sovereignty in U.S.-based companies, like Epic, where data will travel and boomerang through the states, maybe even into Wisconsin and land there for a bit and come back into Canada, and then land in AWS in, for example, Montreal. Those are both U.S. mega-companies governed by the U.S. CLOUD Act, which enables the U.S. government to request and mandate the turnover of data, no matter if it’s sitting on sovereign soil like Canada, France or anywhere else in the world. That is the race to the start line because we won’t have sovereign health data until it travels in Canada and lands in an end-to-end Canadian data centre.
I’m curious about the race to the start line and the timing on that in comparison to the AI strategy, and this might be a question that you can come back to us on. I’m fully supportive of Bill S-5, so this is not a hurdle, but it is something I’m putting in play. Minister Solomon said full stop that critical data like health data would be under Canadian sovereignty.
How do you see the timing of this in conjunction with Canadian data sovereignty strategies?
Ms. Toller: As I mentioned earlier, within the context of the U.S. companies that we already depend on heavily, especially in acute care, the contracts that the provinces and territories have with them specify that data storage has to be in Canada. And cloud companies —
Senator Hay: Even if it’s in Canada, with a U.S. company like Amazon Web Services, or AWS, the U.S. government can overrule any guardrail.
Ms. Toller: I hear that. Part one to my response was we can do what we can to create requirements that the data stay in Canada. That’s the approach we can take, and I think the broader policy work is happening within ISED.
We can get back to you in terms of the timing. I would say we are very involved with ISED on that strategy, and I do hope it will be released soon.
Ms. Angus: Maybe I can add to that. ISED and Minister Solomon are working on the strategy, and we hope to announce it soon. I will clarify how the cloud and PIPEDA apply to sovereignty writ large and some of the other things that the government is doing on sovereignty on a large scale. I won’t speak specifically to health, but the CLOUD Act, you’re absolutely right, it allows the U.S. government to get access. To be clear, it’s not a law that permits surveillance or mass data collection. It is, essentially, for law enforcement purposes in the context of serious crimes to help law enforcement to find people. That’s not to say that that’s —
Senator Hay: — not declaring some crisis.
Ms. Angus: Exactly. That’s not to say there isn’t a vulnerability.
Current legislation does require safeguards to be put in place. Those safeguards can be technical. Something like encryption would help with that, to the extent that, legally, you can’t do anything because there is a law that says that there are technical measures that can counter that. That’s something that we will also look at as part of PIPEDA modernization and whether there needs to be more.
The other thing I will add is that the government has been investing in sovereign infrastructure. We have a sovereign compute strategy. Investment in data centres is part of that strategy, so part of our broader plan for sovereignty, as Minister Solomon has said on a few occasions, is that we are investing in domestic infrastructure as well so that there are — because it’s not going to happen tomorrow, but in time that there are Canadian alternatives.
Senator Hay: That’s the race to the start line, but this was incredibly helpful. Thank you. The encryption piece was important.
The Deputy Chair: I’m going to ask a question. This is for Ms. Toller. This is in regard to the coming into force and compliance of Bill S-5. Could you just tell us a little bit about the rationale? We understand the need for flexibility, but can you give us some more rationale? When do you expect this bill to come into force, and when will the compliance regulations also come into force?
Ms. Toller: The way it is designed it will come into force when the Governor-in-Council has made an order that it apply in a province and territory that does not have similar legislation in place. They could also choose bits and pieces of the legislation. If one province has good interoperability rules but no data blocking, they could choose to put just the data-blocking provisions.
It will happen once we have the regulations in place and the criteria are spelled out, and we will have to have a reasonable amount of time to do the assessment, but it shouldn’t happen too far down the road. We just need to make sure we are reasonable in consulting with the provinces and territories through the regulatory development process on what those criteria are and the process for the determination.
The Deputy Chair: Thank you for that answer.
Colleagues and witnesses, this brings us to the end of this meeting. I would like to thank all the witnesses for their time and for being with us today and for sharing your expertise.
(The committee adjourned.)