THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Wednesday, April 15, 2026
The Standing Senate Committee on Social Affairs, Science and Technology met with videoconference this day at 4:14 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 Rosemary Moodie (Chair) in the chair.
[English]
The Chair: 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 for Ontario.
Senator Senior: Paulette Senior, senator for Ontario.
[Translation]
Senator Boudreau: Victor Boudreau, New Brunswick.
Senator Arnold: Dawn Arnold, New Brunswick.
Senator Petitclerc: Chantal Petitclerc, Quebec.
[English]
Senator Cuzner: Rodger Cuzner, senator for Nova Scotia.
Senator Osler: Flordeliz (Gigi) Osler, senator for Manitoba.
The Chair: Thank you, senators.
Today, the committee begins 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.”
For the first panel today, we welcome, from the Canadian Medical Association, Dr. Margot Burnell, President; from the Canadian Nurses Association, Dr. Tracie Risling, RN, President‑elect; from the Canadian Association of Social Workers, joining by video conference, Dr. Sarah Pennisi, Senior Advisor, Policy and Public Affairs; and from the Canadian Bar Association, Tory Hibbitt, Member, Health Law Section. Thank you all for joining us today.
For your opening statements, you will each have five minutes, followed by questions from our committee members. Dr. Burnell, the floor is yours.
Dr. Margot Burnell, President, Canadian Medical Association: Thank you very much, Madam Chair, for the invitation to appear today. I acknowledge with gratitude that we gather here today on the traditional and unceded territory of the Anishinaabe Algonquin Nation and appreciate their stewardship of the land over generations.
My name is Dr. Margot Burnell, and I am the President of the Canadian Medical Association, or CMA. The CMA represents physicians and medical learners across the country and advocates for the patients we serve.
We have been talking about a connected health system in Canada for more than 25 years. Long before smartphones, experts were calling for what they described as a health information highway. We are now closer than we have ever been to building it. The connected care for Canadians act marks an important and long-anticipated step forward.
Today, fewer than half of people living in Canada, 47%, have accessed their own health data. Patients repeat their medical histories again and again. Families wait for lab results that already exist somewhere else.
Only 29% of physicians can share patient information outside their practice. Physicians spend hours each week locating, collecting and re-entering health data across incompatible systems. Time is spent searching for information instead of using it.
In a recent CMA survey of physicians, we learned that 90% believe that extra paperwork is a serious burden. It contributes to burnout and reduces time available with patients. Without access to complete information, clinicians may order duplicate tests. They may lack critical context, and that increases risk and wastes precious system capacity. We lack capacity. Too often, we also lack connection.
While Canada uses digital records, and most hospitals and clinics keep electronic medical records, the information is stored in thousands of separate systems. Often, they cannot communicate. Sometimes they are not designed to.
With this bill, we can look forward to patients being better able to manage their own health in partnership with their care teams. With this bill, eventually, doctors will have more time to focus on care. A national commitment to connectivity will transform and improve our health care system.
We are pleased to see Bill S-5 focusing on common national standards. By requiring digital health technology developers and vendors to adopt them and by prohibiting data blocking, we can create the conditions for secure information sharing across the country. When personal health information can travel freely and securely among patients, clinics, hospitals and labs, people will have better health outcomes.
Driving national interoperability forward further paves the road for tools that support physicians’ modern practice to operate at their full potential. Forty-five per cent of doctors have identified artificial intelligence tools, such as ambient scribes, as a high-priority way to reduce the administrative burden. Those already using AI scribes report saving about an hour of work per day. We can all do the math on that. These advanced tools depend on reliable, interoperable data. Without shared standards, their potential is limited.
Every patient and every health care provider should be able to access health information simply and securely. When information moves, capacity appears.
The CMA stands ready to support the implementation and to work with governments to ensure Canadians experience the improvements this legislation makes possible. Standards turn good intentions into working systems. Canadians should not have to carry their medical history in their memories.
Thank you. I look forward to your questions. Meegwetch.
The Chair: Thank you, Dr. Burnell. Dr. Risling, you have the floor.
Tracie Risling RN, President-elect, Canadian Nurses Association: Thank you. Good afternoon, Madam Chair and members of the committee. Thank you for the opportunity to appear before you today. I am Dr. Tracie Risling, the President‑elect of the Canadian Nurses Association, or CNA.
I am happy to be in Ottawa today on the unceded and unsurrendered territory of the Algonquin Anishinaabe Nation. I live and work in Calgary, on the traditional territories of the peoples of Treaty 7 as well as Districts 5 and 6 of the Métis Nation within Alberta. I am privileged and deeply grateful for the opportunity to live, work and gather on those lands, just as I am to be here today.
The CNA is the national professional voice of Canada’s almost half a million nurses, representing all nursing categories, as well as nursing students and retired nurses. For over a century, the CNA has worked to advance nursing practice, shape health policy and improve the health and well-being of people here at home and around the world.
Nurses are deeply committed to ensuring that every person in Canada has timely and equitable access to high-quality care. Increasingly, in our digital age, that kind of care depends on the availability of accurate, complete and real-time health information. So, today’s discussion on Bill S-5 and the future of connected health care in Canada is both timely and critical.
Despite having world-class clinicians and significant investments made in pursuit of pan-Canadian electronic health records, Canada’s digital health infrastructure remains fragmented. Health data is largely digitized, but it is not sufficiently standardized or connected, meaning information does not flow seamlessly across care settings and is often unavailable when and where it is needed.
For nurses and nurse practitioners, this is a daily reality. We see first-hand how disconnected systems create risks for patients, delay decisions, increase duplication and often painful testing and contribute to gaps in care and critical team connectivity.
Bill S-5 represents an important step forward to address these challenges. It establishes the foundation for secure, interoperable access to health information across jurisdictions and care settings, moving us away from siloed systems toward a more integrated and patient-centred approach. The CNA strongly supports this legislation as a critical step in modernizing Canada’s health system.
Connected care has a direct and meaningful impact on patients, something I have had the opportunity to witness not only in practice but in my years of research with patients on being able to access and use their digital health records.
We know that interoperability improves the patient experience by reducing the need and burden of repeating health histories and enabling more timely diagnoses and treatment decisions. It also supports smoother transitions between care settings, whether that’s from hospital to home or from primary care to specialist services. And when that connected data is also shared with patients, they report that knowing more and seeing what they, the practitioners, see contributes to improved active, informed and engaged care collaboration.
This kind of connectivity is essential for nurses to be able to work to their full scope of practice as well. It aids in expediting care delivery and coordination, for example, a nurse practitioner in a rural or remote community being able to access hospital discharge summaries, lab results and imaging in real time. That is how this bill can significantly improve clinical decision making, reduce delays and enhance continuity of care.
More broadly, interoperability strengthens overall system performance, improving patient safety, reducing inefficiencies and supporting better health outcomes.
Without interoperability, nurses spend valuable time searching for or even recreating information. This reduces our time to provide direct patient care, increases the risk of errors and contributes to workforce burden and strain. Connected systems will allow nurses to prioritize their own care demands and trade in repetitive administrative tasks for more time with patients and their health care team members to provide collaborative care supported by shared real-time data.
Improved interoperability can also enable the accelerated evolution of care delivery. Virtual care, remote monitoring, telehealth and the integration of artificial intelligence solutions all depend on a strong digital infrastructure united by data standardization and equitable connectivity across systems.
In closing, Bill S-5 is not simply about technology. It is about patient safety, quality of care and system transformation. It is about much more than connected data. It is about building connectivity between the people that data represents. Thank you.
The Chair: Thank you, Dr. Risling. Dr. Pennisi, you have the floor.
Sarah Pennisi, Senior Advisor, Policy and Public Affairs, Canadian Association of Social Workers: Thank you, chair and honourable senators. My name is Dr. Sarah Pennisi. I’m the Senior Advisor of Policy and Public Affairs for the Canadian Association of Social Workers, or CASW.
CASW represents over 20,500 social workers in every province and territory, and this year, we’re celebrating 100 years as the national voice of the profession.
We welcome the opportunity to speak in support of Bill S-5. From a social work perspective, interoperability has the potential to support more coordinated, person-centred and safer care.
As a policy analyst, I often return to Black feminist scholar Patricia Hill Collins’ question, “Who benefits?” That question is especially powerful in public policy because it forces us to look beyond technical language and ask whether a reform will actually improve people’s lives.
In the case of Bill S-5, the answer should be clear. Patients, families and front-line providers should benefit from safer, more connected, person-centred care. But we also have to ask whether those benefits will reach marginalized communities, or whether these communities will continue to bear the costs of fragmented systems.
Social workers know what fragmentation looks like in real life. We work across health and mental health, child welfare, housing, income assistance, corrections and community-based care. When systems do not communicate well, people are forced to repeat painful histories, fill out the same forms again and again and wait while their needs become more urgent. That can lead to delays in care, loss of trust and real harm.
Bill S-5 has the potential to improve intake, triage, referrals, discharge planning, continuity of care, case management and crisis response. That is especially important for people with multiple service needs. But interoperability cannot be treated as a purely technical project. It must be built with privacy, informed consent, professional judgment and harm reduction at its core.
That matters because social workers often support people whose information is especially sensitive, such as survivors of violence, children and families involved in protection systems, people experiencing homelessness and individuals accessing mental health or substance use services. For these groups, broader data sharing can create real risks if safeguards are weak. Interoperability should never mean indiscriminate access. It should mean appropriate access, with strong consent controls and protection for confidential records.
The question “Who benefits?” also requires us to look at equity. If interoperability is designed without attention to systemic barriers, then the people who are already over‑surveilled, underserved or misunderstood may face new harms. That includes racialized communities, people with disabilities, newcomers, 2SLGBTQIA+ communities, people experiencing homelessness and people involved in child welfare, corrections or income assistance systems.
We also need to be explicit about Indigenous data sovereignty. First Nations, Inuit and Métis communities must retain authority over how their data is collected, accessed, shared and used. Respect for principles of ownership, control, access and possession, OCAP for short, is essential if connected care is going to advance trust rather than reproduce colonial patterns in new digital forms.
CASW has four recommendations. First, explicitly protect sensitive records. Second, embed equity requirements for marginalized communities. Third, respect Indigenous data sovereignty. Fourth, require privacy and equity impact assessments before regulations are finalized.
These recommendations are not intended as obstacles to interoperability. They are the conditions that will make interoperability ethical, trustworthy and effective.
This bill represents an important opportunity to strengthen connected, efficient and person-centred care across Canada. Bill S-5 can reduce harms, improve continuity of care and support better outcomes for the people who most rely on these systems.
Thank you for the honour of presenting today, and I would be pleased to answer any of your questions.
The Chair: Thank you. Ms. Hibbitt, you have the floor.
Tory Hibbitt, Member, National Health Law Section, Canadian Bar Association: Good afternoon, Madam Chair and honourable senators. Thank you for the opportunity to appear before you today on Bill S-5, the connected care for Canadians act.
I am appearing on behalf of several sections of the Canadian Bar Association, or CBA, including the Health Law Section and the Privacy and Access Section.
The CBA represents over 40,000 members across Canada and advocates for effective law reform.
We support the objective of Bill S-5. Enabling better sharing of health data has the potential to improve continuity of care, enhance patient safety and reduce administrative burden in a strained health care system.
The central point I want to leave with you today is this: For interoperability to achieve these outcomes, it must be clearly aligned with existing privacy laws and the legal realities of how health information is governed in Canada.
Bill S-5 focuses on technology vendors, but in Canada health information is mainly governed by provincial and territorial laws, with custodians or trustees acting as gatekeepers over how that information is collected, used, disclosed and protected.
While the bill enables systems to communicate, it does not authorize or mandate the sharing of health information itself. As a result, achieving its objectives will depend not only on technical interoperability requirements imposed on vendors; it will also depend on alignment with the legal and operational frameworks within which custodians make disclosure decisions.
In short, interoperability is necessary but not sufficient to achieve its intended outcomes.
Certain definitions in this bill would benefit from greater precision because they will drive how the bill operates in practice.
First, the definition of “data blocking” is very broad. As drafted, it could capture legitimate, legally required privacy practices, such as masking of sensitive information or limiting uses or disclosures in accordance with provincial obligations. This creates a risk that organizations could face liability for complying with existing privacy laws. The CBA recommends clarifying that lawful, privacy-compliant practices do not constitute data blocking.
Second, the definition of “personal health information” does not include a definition of “health service.” We recommend defining “health service” and including health service providers’ information within this definition.
Third, the scope of “electronic health information” should be clarified to ensure the bill applies to systems supporting clinical care and not to platforms used exclusively for authorized research or secondary uses.
Privacy and security should be explicitly embedded in this framework. While the bill emphasizes secure data exchange, it does not define safeguards or reference existing privacy regimes. For greater clarity and legal coherence, we recommend express reference to applicable privacy laws and the establishment of baseline enforceable protections.
Enforcement and accountability will determine whether this framework functions effectively. Key questions include who has jurisdiction over interconnected systems operating in different provinces and allocation of responsibility across those systems. Otherwise, there is a risk of fragmented oversight. Effective implementation will require clear jurisdictional rules, meaningful penalties and adequate resourcing for consistent monitoring and enforcement.
In conclusion, the CBA supports the goal of modernizing Canada’s health data systems, and it views Bill S-5 as an important step toward that objective. Its success will depend on ensuring that interoperability and anti-data-blocking obligations are implemented in a way that is legally coherent, privacy‑compliant and operationally workable across jurisdictions. This requires precise definitions, alignment with existing legal frameworks, appropriate safeguards, as well as clear, enforceable accountability mechanisms.
Thank you. I welcome any questions.
The Chair: Thank you, Ms. Hibbitt.
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 witnesses. I will be keeping a tight ship today, and there likely will not be time for a second round, so we’re going to ask both the witnesses and the senators asking questions to please be succinct.
Senator Burey: Thank you so much for being here. I don’t want to waste a minute of my time.
I am so impressed by all this testimony. I’m really excited, and I won’t have enough time, so let me get going. I’m going to ask about the data blocking and interoperability. I was struck by the lack of definitions. I’m sure everyone will jump in.
The submission from the Digital Health Interoperability Task Force to Health Canada, which was released in February 2026 — I think the CMA, the College of Family Physicians of Canada and a number of you were involved — states:
While defining data blocking by its outcomes and impact is critical, providing illustrative examples of data-blocking practices would be useful to clarify the legislators’ intent. . . .
This now speaks to some of the discussion that we’ve had here.
So, in clause 2, under the definitions, how would you propose that the “data blocking” definition — is it sufficient and what would you propose? For clarification, could you give some examples that we could have in the testimony that could give some direction to the regulations? This is for everyone, but I think Ms. Hibbitt is ready to get started, and then maybe just jump in.
Ms. Hibbitt: Certainly. Just as a general observation, there are a lot of nuances missing from Bill S-5. I think the intention — my impression is that this is to be fleshed out in regulation through a consultative process as well. One way to do it would be to expand in regulation. That allows some flexibility as well if new practices emerge. That can be addressed by way of regulation that amends and supplements that definition.
One way that the CBA might recommend doing that would be to specify, for example, that masking, which is a common practice in medicine, is not a data-blocking practice. To the extent that there are other features that emerge in programs, we’d recommend that once they become interoperable, built-in mechanisms that were meant to be built-in technological safeguards to protect information and access controls, again, would not constitute data blocking. Those are just some ideas, but there may be others.
Senator Burey: Any other comments? Some of the recommendations were like charging for access to electronic health information and charging to connect the health information. I was just trying to get some of that on the record in terms of the regulations would need to make sure that that is specified, not just giving a broad definition.
I want to quickly go into the application by order, clause 4 in Bill S-5. It states that the proposed connected care for Canadians act would apply only in provinces and territories subject to an order made by the Governor-in-Council. Clause 7 would give the Governor-in-Council the power to make the application order if that province or territory does not have the requirements. The definition, again, is substantially similar. Do you have any comments on that in terms of the definition?
Dr. Burnell: I think what we heard from Health Canada when they had their briefing session with us was that if the provinces had sufficiently similar legislation already in place, then they would assess that against their template. If it passed, that legislation would be recognized.
Senator Hay: Thank you all for being here. If I remember correctly, Ms. Hibbitt, you talked about Bill S-5 being focused mostly on vendors and system. My thoughts went to how patients will actually be part of this new digital health environment. I was thinking more along the lines of from consent to access, to data protection and data sharing, and especially, as Dr. Pennisi said, across various services and health care needs across provinces and territories. I’m wondering how patients are part of this journey.
I will let anyone jump right in.
Dr. Burnell: Thank you for your question.
Patients have to be involved at every step of the implementation plan. We would propose that this legislation is critically important to move forward but also would recommend as an amendment affirming the patient’s ownership of his or her own health information, and also embedding strong rights-based mechanisms to ensure Indigenous data sovereignty is there. That may be encompassed in the rules and regulations, but I would also like to see that as an amendment to the bill.
Senator Hay: Just to follow up on that, they’re going to be along for the journey every step of the way, but what if they aren’t? What if they say no? What if a patient says no?
I don’t mean to be argumentative at all. I’m just concerned about the rollout. Only 29% of providers right now, currently, share information seamlessly. I think I have that right. I want to know how the patients will be part of this.
Dr. Burnell: I think patients will need to be able to define what they are consenting to and which information they are consenting to be released. Currently, we consent in what we call the circle of care, so those individuals who are directly involved on our health care teams.
I would say there is an advantage to having anonymized de‑identified data that is also available to inform health policy and health resource management, but the patient should give their consent.
When patients have been surveyed, as long as they understand what they’re consenting to, they actually are very generous in allowing their information to be used for other purposes than their direct care, as long as there are safeguards around that with anonymized, de-identified data.
Senator Hay: Thank you. Dr. Pennisi, how do you see that between multiple services and health care needs from a social work perspective to community-based care, through to acute care, tertiary care environments?
Ms. Pennisi: I think building in right from the very beginning privacy and equity impact assessments will help us to understand whether the system infrastructure truly is patient-centred, person‑centred. I think that step will help us understand what informed consent looks like and how that is moved from theory into action.
Senator McPhedran: Thank you to all of you for being here with us today. I’m going to begin my questions by directing them to Tory Hibbitt, please. I have a sense that, perhaps, Dr. Pennisi may want to jump in on this.
I’m going to pick up on previous questions and stay with the area of privacy law, but I’m going to observe, as often happens in the legislative process, that we might possibly be dealing here with a largely aspirational bill. That’s not a bad thing. It’s an important step. But I would welcome comments from anyone on the panel, beginning with Ms. Hibbitt, about custodians and what happens to custodians who are facing barriers and have to balance often competing needs and sometimes even requirements. If that’s a clear enough question, may I invite you to respond?
Ms. Hibbitt: Certainly. Thank you for that question. I think there are a couple of elements to it.
Currently, custodians do bear the brunt of the protection of health information. That’s at the provincial or territorial level. I think what integrating some safeguards into the federal-level bill could do is help even the playing field a bit where there is more certainty around requirements for the vendors. I understand why this bill doesn’t speak directly to privacy. It is not a privacy bill, and it can’t be at the moment. That would lead to a whole slew of conflicts from a jurisdictional standpoint.
I think building in some regulations around safeguards and protections would be really helpful to allow custodians to have something concrete to refer to when they are assessing within their jurisdictions whether those technological safeguards are met.
What was the other part of your question?
Senator McPhedran: The competing needs. And this bill — as specific as you can be, to anyone on the panel — if I’m correct that it’s largely aspirational at this point, what are the practical amendments that should be considered?
Ms. Hibbitt: Ultimately, as a general observation, this is a first step. It’s a starting point. We’re not going to get anywhere with the continuity of care, connected care, enhancing health outcomes and safety without the custodians facilitating that and enabling that flow of information through the systems that make it a technological capability. We still have fax machines in use when electronic medical records, or EMRs, exist.
Senator McPhedran: Thank you. I want to give Dr. Pennisi a chance as well. Thank you so much.
I think you touched on this in your association’s brief, so I wonder if there’s anything you wanted to say on this, Dr. Pennisi.
Ms. Pennisi: I would agree with ensuring that custodians are involved in the process. My experience providing social work in the field is that it’s not a lack of willingness between providers to share information. It’s really the tension between that role as the custodian and patient-centred care.
From a patient’s perspective, I’ve heard from patients that they do not understand the roadblocks when it comes to the urgency of their care and life situations that require immediate attention. I think building practitioner perspectives all the way through the process to make sure that there are clear guidelines and safeguards would be my recommendation.
Senator McPhedran: I’m picking directly from the bill: “. . . personal health information . . .” and “. . . any information that is collected in the course of providing health services . . . .” I’m focusing on that because that may be a potential area that we have to understand better in terms of how broad it is and what kinds of human rights issues might be raised.
Senator Osler: Thank you to all the witnesses. My question is for the Canadian Bar Association and Ms. Hibbitt. It’s on cybersecurity and safeguards.
Bill S-5 aims to promote a connected, secure and person-centred health system. We’ve heard the benefits, but creating a larger connected system of electronic health records also creates a larger cybersecurity risk. Personal health data is a high-value target for financial gain, espionage or disruption. Your brief states that including a reference to existing privacy and security requirements would reinforce the importance of privacy and security as foundational elements.
We know that Canadian labs, hospitals and health systems are already frequent targets of cyberattacks, and Bill S-5 would create an even larger target of connected health records, but it doesn’t reference or address cybersecurity risk.
In your opening statement, you mentioned baseline enforceable protections. Can you elaborate on those protections, the jurisdictional level, and whether those protections need to be achieved through regulations or legislation?
Ms. Hibbitt: There are a few components to that question as well, so I’ll do my best to remember those and tackle each of them.
I would like to take this back to consult with the CBA and the cyber experts, but my impression is that at the provincial level there is already a requirement for safeguards. In Alberta, for example, there are privacy impact assessments, or PIAs, and information management agreements. It falls to the custodian to ensure that they are in place.
For that reason, I think there is an opportunity to flesh that out at a federal level and have that adopted at the provincial level. I think that’s best done in regulation. I would confirm that with my colleagues at the CBA, but I think that regulation allows for some flexibility, because there are threats that we may not be able to anticipate years on. I think that regulation allows for that, but something in here in terms of technological safeguards would allow some certainty that can then be adopted consistently across the provinces.
Right now, provincial legislation — again, I’ll refer to the Health Information Act — is very lean of terms of safeguards and speaks to “reasonableness,” which is quite broad and increasingly more complex for custodians to assess in a digital age. Some more parameters in regulations as fleshed out by experts in this space, technology experts in particular, would be helpful.
Senator Osler: A written answer would be most helpful for us as we consider this bill at clause by clause and for the record as well. Thank you.
Ms. Hibbitt: Certainly.
Dr. Burnell: I think that this bill does need to have strong mandatory cybersecurity safeguards. Some examples, which may be in the regulations, would be encryption in transit and at rest, strong identity and access management, audit logs and continuous monitoring for breaches. The other component is accountability, and, as that data flows through custodians or vendors, responsibility for cybersecurity cannot rest with the clinician. That has been expressed in provinces recently, so regulations should assign security obligations and liabilities to the organizations and technology providers that design these systems.
Senator Osler: Thank you very much.
Senator Senior: Thank you to our witnesses today. Ms. Pennisi, I was taken with the question you asked in terms of “Who benefits?” I’d like you to elaborate a little bit more on that, primarily in terms of the current state of affairs and what we should put in place to ensure that the beneficiaries would be patients or Canadians.
Ms. Pennisi: Thank you very much for the question. I do love Patricia Hill Collins’ work. The question “Who benefits?” is a fundamental one when designing legislation and regulations because if legislation centres on the intended primary beneficiary, the structure falls from there. My experience with health data and with private health data system builders is that it’s not always the patient who is at the centre, and you see that because of the lack of flexibility, the lack of patient ownership when it comes to their data, so I don’t believe that, currently, the primary beneficiary behind the design of the system is the client.
I think the way to mitigate that is through ongoing conversation with the intended primary beneficiaries, which are front-line providers, patients and clients who would be using the system, who want access to the system and who want the system to work. That interoperability for patients, clinicians and practitioners means that people are getting the service when they need it, without having to continually go through hoops.
I think representation is one of the strongest tools that we have to ensure that systems are built with the intended beneficiary at the centre.
Senator Senior: I’m wondering if Dr. Risling would have anything to share on that.
Ms. Risling: Thank you very much for the opportunity. In an aspirational sense, when we think about this opportunity for connectivity and interoperability, we can never have it stop between the system and the clinicians. It must include the patients. The patients’ data drives these systems. It drives some of these advances that we’re thinking about in artificial intelligence and other ways. Yet, probably the largest digital divide in this system remains between that data and the patients themselves. What we need to think about is how we support Canadians, all Canadians, to be prepared and have what they need not only to access but also to understand and use the data.
Much of that falls parallel to or outside of the scope of this work, but I really want to encourage all Canadians to think about interoperability as inclusive of patients.
Senator Boudreau: Thank you to our witnesses for being here today, particularly Dr. Burnell, who is from my home province. It’s nice to see you again.
My first question is for the CMA. I’m following up a little bit on my colleague Senator Burey’s question. Knowing that Bill S-5 applies to provinces and territories that do not already have substantially similar legislation, I’m curious as to how the CMA would define “substantially similar.” What are the must‑haves that provinces and territories would need to have in place, and would there be a list from the CMA of the provinces and territories that already meet those criteria?
Dr. Burnell: We would be willing to provide the provinces that may have similar legislation. I think what we need to define is a standardized template of what the key functions and mandatory requirements are going to be for vendors looking at this: Where is the data held? Where is the governance for the data? Who has access to the data? How is that data shared amongst other individuals?
I think those are all key components. We don’t want fragmented systems or legislation. That’s why we need that oversight to ensure it’s standardized. Otherwise, vendors will find the weakest link.
Senator Boudreau: Ms. Hibbitt, what do you think of administrative monetary penalties being used as a compliance tool for vendors that contravene the regulation? Is it adequate, or would you suggest additional measures to ensure that the vendors follow suit?
Ms. Hibbitt: My understanding is that those too are to be fleshed out in regulation, but I think they could be sufficient. I think that there needs to be a close look at something harsh enough to ensure that commercial interests aren’t prioritized over patient care and the intentions of the bill. There might be something more creative there that could be added in regulation, but I think they would need to be fairly significant to be sufficient to deter things like data blocking where there are commercial gains to be had through that practice.
Senator Boudreau: Thank you.
Senator Cuzner: As representatives of national organizations, you have a view of the landscape and how it plays out from coast to coast to coast. As you indicated, Ms. Hibbitt, so much of this lies within the realm of the provinces. They’re collecting data, managing data and storing information.
Is there a province that’s doing really well? Are they more advanced than others as far as where they are with legislation or regulation? You mentioned Alberta in particular. As far as security of information and that, they seem to be ahead. You’ve been able to get your head around where the provinces are with that. Is there a province that we see that’s doing a real good job with this and would help us along with this process?
Ms. Hibbitt: Frankly, I’m not sure any of them are doing it particularly well. Alberta certainly does have some measures in place with privacy impact assessments and information manager agreements, which are built in. This relates to a previous question about cybersecurity and that the platforms themselves that are designed to be interoperable through Bill S-5 are already intended to have met those requirements. They are, presumably, already information managers operating within this framework, or will be.
So there is a framework where those are governed. The privacy commissioners might be under-resourced to deal with the explosion of innovation that may ensue to review those PIAs. That could be difficult and comes down to the enforcement issue as well. I would say they could all do with work, and it might actually funnel downward from this legislation to move more towards a stewardship model rather than a custodian model, which has some inherent issues.
[Translation]
Senator Petitclerc: Thank you very much for being here today. I have a question that’s probably for you, Ms. Hibbitt, but I’ll give you a moment for the translation. I’d also like to hear the others’ opinions.
You mentioned it earlier, and others have said it; we often hear, and we also saw in an article in The Globe and Mail — one that’s a bit older — that this wouldn’t be sufficient to constitute a comprehensive health data sharing system.
[English]
You were talking about how this is a good first step. So I’m trying to understand how far Bill S-5 will take us and what the limits or the gaps are. What is it that it won’t do that it should do? I know I’m going a bit outside of the piece of legislation itself, but I’m trying to see it through a bit of a patient-centred lens, like this will take us there. That’s why I would also like the input of our other witnesses on that.
Ms. Hibbitt: I’m happy to comment on that. It’s a starting point in the sense that it’s technologically enabling the flow of health information for continuity of care and the portability of health data, these things that are contemplated in our Pan‑Canadian Health Data Charter. Those principles are not being implemented currently, although endorsed across Canada, except for Quebec.
It is a move to create the infrastructure to enable an environment where health information can be securely shared, but we have provincial legislation, such as the Alberta Health Information Act. In that model, the focus is really on privacy. What happens in these privacy legislation pieces is that custodians bear consequences for breaching if they share the information. It’s shared on a discretionary basis, in a lot of senses. So rather than risk breaching the Health Information Act, there is this emphasis on privacy as being a harm as opposed to patient care and the harm that might flow from not sharing the information.
So, this bill is a starting point to create the environment where it can be shared, but there are ultimately going to be more layers to that, even a culture and literacy shift around the need to share health information. Adding some safeguards to give custodians the security — no pun intended — and the sense of knowing that the systems they’re working with won’t end up having them found in breach of their provincial legislation — because they carry a lot of ownership and responsibility, all of it actually, under provincial legislation — could really help in that regard.
Dr. Burnell: The other issue is we need to update our privacy legislation because it is outdated in the modern technology era and doesn’t deal with some of the new technology that we have available to us.
Ms. Risling: With the establishment of this infrastructure comes an examination of the existing disconnect. Today, our CNA president, just a few blocks away from here, is providing wound care. A client, right before I arrived, told me they had a client arrive back to long-term care from acute care, both institutions having electronic medical records, both thinking there was a connection between the two of them that there was not. So our president began to try to provide care to this gentleman upon his return, not understanding what antibiotics he was on and what kind of pain medication had most recently been delivered, again, through no poor intent of the clinicians involved, but through a misunderstood disconnect between systems that I truly hope Bill S-5 begins to step us toward eliminating.
Senator Greenwood: Thank you to our guests. My name is Margo Greenwood. My apologies for coming late into the room.
I have a couple of questions I’ll ask. I was in some meetings earlier this week and last week, and one of the most fundamental questions was who actually owns the medical record. Do I own it, as I give my data? Or does the person who is collecting it own it? That’s a fundamental question that I think is a really important one to contemplate.
I also have questions around interprovincial data sharing and cross-sectoral data sharing and how that works. You just gave an example of very individual care on the ground where that shouldn’t be happening, and, in fact, oftentimes I think it’s the norm where these records aren’t talking to each other.
I think we can all point to a lot of challenges. I’m trying to get to what would be some of the solutions.
Another reality of this is the Indigenous data sovereignty. That adds a whole other dimension on top of the legal frameworks we’ve discussed today. There is a whole other dimension there, which I think is just a complex wicked problem.
Please comment on any of those, but I was very interested in the notions of custodian versus stewardship. How do we define those? And would how those are defined lead us to some different pathways for addressing some of these much larger issues? Honestly, I would invite all of you to respond to what I have said because I think any one of these is part of our conversation.
Ms. Hibbitt: Yes, stewardship is about the notion of “we’re stewarding health information.” Custodian, as opposed to being this gatekeeper of the information — I need to keep it, protect it and not share it. Some would argue it’s a deterrent even by the use of that terminology.
So this notion of stewardship is about benefiting from interoperable systems to safeguard and securely transfer the information, but do it in a way that ensures the continuity of care that our technologies now enable. So we have that possibility now. All of our legislation is pretty outdated, so moving towards that stewardship model is about a reframing of an understanding of the harms that can flow from not sharing the information, as opposed to the emphasis that’s placed on the privacy statutes and the consequences that come from privacy breaches. There are more harms.
There are studies on that which I would be happy to share as well about a harm framework in terms of different forms of harm that ensue from not sharing information, as opposed to a hyper focus on just privacy breaches.
Dr. Burnell: I would suggest that the patient should own their data in 2026 and that the data should be identical between what the patient can access and what their circle of care and health care team can access. Because it’s using that information and basically agreeing that’s the information they’re dealing with to then deal with their issues and plan their journey and address their issues. It should be the patient who owns their data, which is a little bit different than who the custodian is.
With respect to First Nations’ data sovereignty, we need to elaborate. It really has a minimal context in the preamble, but we need to really explicitly affirm that First Nations, Métis and Inuit have inherent rights to govern their health data and that this application to Indigenous health data is subject to the free, prior and informed consent of the relevant nation or community. And recognizing point 35 of the Constitution, the United Nations Declaration on the Rights of Indigenous People, OCAP and nation-specific frameworks as the governing standards, we don’t need to reinvent the wheel. Those standards are clearly identified. They need to be part of the mandatory requirements.
The other issue I would say on Indigenous Peoples is they’re often in communities that do not have broadband. We need to ensure that it’s available and that this legislation doesn’t cause further inequities in care but narrows those gaps.
Ms. Pennisi: If I might also add?
Senator Greenwood: Yes, please.
Ms. Pennisi: I agree the patient must own their data. I think the risk we run sometimes in operationalizing programs like health care and others is we abstract client data so it is disconnected from the person we serve — not in any intentional way, but that’s what happens in the day-to-day practice of collecting and using information.
I think we need to go back to the design to make sure the person is at the centre of the design, to make sure the questions we’re asking result in a record that is usable for the patient and usable in ways they see helpful in their journey.
Senator Greenwood: Co-stewardship, where you have the individual, the person, as well — are there concepts like that? It could certainly have the custodial elements. Many of them are very important; they’re the guardrails. But the co-stewardship idea, has anyone explored or thought about that? Any comment on that?
Ms. Hibbitt: My understanding is that in the stewardship model there is recognition — per the Supreme Court’s decision in McInerney — that it is the patient’s information and that the stewards are stewarding the patient’s information. My interpretation of that was it was built into the stewardship model. Even spanning into innovation, the use of that is for public and patient good.
That steward notion — as opposed to the custodial, which focuses on strict protections of it and which can deter sharing — can facilitate more positive outcomes for health care.
The Chair: Great question. Does the patient own their record?
Ms. Hibbitt: The patient has the right to access their record.
The Chair: Access, but do they own it? I know the answer; I want it on the record.
Ms. Hibbitt: The record itself as in, dare I say, paper, but the electronic record, I suppose not, technically.
The Chair: Thank you very much. Senators, that brings us to the end of this first panel. I’d like to thank our witnesses for their testimony today.
Senators, this brings us to the next panel. Joining us today, we welcome, from the Women’s Health Coalition of Canada, Danika Kelly, Vice-Chair, Canada West; from the Society of Rural Physicians of Canada, joining by video conference, Dr. Sarah Giles, President-elect; from the Black Physicians’ Association of Ontario, joining by video conference, Dr. Joel Brown, Vice-President and family physician; and from the Canadian Association of Retired Persons, Anthony Quinn, President. Thank you all for joining us today.
For your opening statements, you will have five minutes each, followed by questions from committee members. I will ask you to try to stay within your five minutes, please. With so many witnesses, we need to be careful of time. Thank you very much. Ms. Kelly, the floor is yours.
Danika Kelly, Vice-Chair, Canada West, Women’s Health Coalition of Canada: Thank you very much, Madam Chair, members of the committee and honourable senators. It’s a pleasure to be here. Thank you for inviting me to speak on Bill S-5.
My name is Danika Kelly, as mentioned before, and I am the Vice-Chair, Canada West, for the Women’s Health Coalition of Canada, or WHC. For the purposes of disclosure, I also sit as the Digital Health Chair for the Commonwealth Businesswomen’s Network, and I also co-founded a small company called My Normative, which is focused on closing the sex and gender data gap. Those two positions are part of what informed my being here today.
The Women’s Health Coalition of Canada broadly supports Bill S-5, and we believe that interoperability is an important tool for the advancement of women’s health equity, including the work being done under Bill S-243, also referred to this committee.
I will highlight three priorities where Bill S-5 can make a measurable difference as it pertains to women’s health, the first of which is interoperability as a mechanism for standardization. A national health mandate creates the conditions required to facilitate the standardization of health information and data and endpoints that are currently woefully missing in the women’s health and female health space. Second, standardized data collection is essential to accurately capture sex- and gender-specific health information and close current evidence and care gaps in women’s health.
For priority number 2, standardization is a way to improve diagnosis and treatment in the women’s health field and is important to the process of interoperability. Consistent, comparable data across systems improves clinical decision support and health monitoring capacity, and improves health research capacity and innovation as well. Better data and insight generation can shorten the long diagnostic delays that many women face — known in my field as the seven-year gap — and can facilitate the acceleration of appropriate interventions.
The third point to bring forward today by the Women’s Health Coalition is that interoperability is a means to increasing agency and access. When systems speak the same language, patients, especially women and other underserved groups, can navigate care more effectively, efficiently and receive care tailored to their unique needs. Improved access and continuity of information help reduce inequities and support greater participation in work and community life.
The recommendations that the Women’s Health Coalition of Canada would like to bring forward with Bill S-5 are to ensure the engagement of advocates and representatives from diverse and historically excluded populations in standard setting and policy implementation so that interoperability benefits everyone, not just the status quo. Prioritization of the inclusion of sex, gender and related socio-demographic variables in national data standards and requiring the alignment of endpoints relevant to women’s health will be meaningful in unlocking the potential health impacts of interoperability. Last, we recommend building accountability and transparency into the implementation plans, including timelines, measurable outcomes and reporting on equity impacts.
In closing, the Women’s Health Coalition of Canada supports the adoption of Bill S-5 as an important step toward better health outcomes for women. We urge the committee to ensure that implementation explicitly addresses sex, gender and equity considerations from the outset.
Thank you very much for your time.
The Chair: Thank you, Ms. Kelly. Dr. Giles, you have the floor.
Dr. Sarah Giles, President-elect, Society of Rural Physicians of Canada: Honourable senators, thank you for the invitation to appear today. My name is Dr. Sarah Giles, and I’m the incoming President of the Society of Rural Physicians of Canada, or SRPC. We represent 3,000 physicians and learners who provide care for the 20% of Canadians living in rural, remote and Indigenous communities.
I’m a rural generalist in Kenora. This means I’m the doctor who might round on in-patients in the morning, work in the clinic in the afternoon and be in the ER at night. My hospital provides critical medical care to a town of 15,000 people and to the members of 12 First Nations communities.
The lack of connected care isn’t a minor inconvenience. It’s a barrier to safe and effective patient care that we see every day. Across Canada, rural community clinics and hospital systems often don’t communicate with one another, let alone with regional hospitals or tertiary care centres, which may be in the next province over. The system is effectively disconnected.
When I can’t see a patient’s medical history and information, my ability to provide critical care is impeded, and their life might be at risk while we wait for a fax — yes, a fax.
Consider a patient living in Wabaseemoong Independent Nations — that’s one and a half hours north of Kenora — who arrives at the on-reserve nursing station with a medical emergency. Let’s call her Audrey. Audrey’s day-to-day care is provided by a network of non-integrated providers: federal nursing station staff in her community, three different local primary care agencies and specialists in the nearest tertiary care centre in Winnipeg, Manitoba. When Audrey arrives at my ER in Kenora, Ontario, I can’t see the nursing notes from Wabaseemoong because their federally managed electronic chart doesn’t communicate with the software at my hospital. I can’t see the critical lab results because they are physically back in Wabaseemoong on thermal paper taped to paper charts because they cannot be uploaded into the provincial laboratory database. If there was a doctor in clinic that day — that’s a big “if” — I can’t see their notes because of a lack of local high-speed internet access in Wabaseemoong, and I can’t see any specialist notes or images from Winnipeg because that data stays in Manitoba. Without all that critical information, I have to make the call on how to provide immediate life-saving care to Audrey.
Let’s say her condition worsens as I wait for this fax to come in. I make the call. We’re going to fly her to Thunder Bay, 550 kilometres away. In Thunder Bay, those doctors can see the tests I’ve ordered if I do a special manœuvre with the computer, but again, they can’t see anything that’s been done in Wabaseemoong or Manitoba, so investigations and consultations are repeated.
When Audrey is discharged, maybe she will be okay, or maybe her prescriptions and follow-ups will be missed because the systems don’t talk to each other. In a month, Audrey might be back at the nursing station but in worse shape. That is because our systems can’t communicate. The lives of people like Audrey are at risk every day.
Imagine, instead, if health care worked like banking. If Audrey had a card that allowed her electronic chart to be updated in real time anywhere in Canada and be visible to any authorized provider anywhere in the world. We have the technology to move money; now we need it to move medical data.
Rural physicians don’t want just new software. We need an interoperable system that can quickly give us access to patients’ correct medical histories, which eliminates expensive, time‑consuming duplication of our work for things like consultations, tests and imaging and ensures patient follow-up.
Let me be clear: The federal government is the only entity with the power to fix this problem. This needs to be an evidence‑based, coordinated and well-resourced effort across the country. The push for interoperability must be sustained and maintained, with improvements benchmarked against the level of patient information sharing now and progress assessed every two years thereafter.
It’s also critical that the money for telecommunications infrastructure, like basic high-speed internet, be included. The lack of high-speed internet in the North threatens the fundamental goals and potential of this bill. Forty per cent of rural and remote communities lack access to high-speed internet, and the workaround in medicine is to use the fax machine. Yes, I’m back to talking about fax machines.
We can design the best programs and software in history, but they won’t make a difference if rural and remote patients can’t connect them to patients’ data.
Senators, you have an opportunity to improve the health outcomes of rural patients and, to be blunt, save lives. We encourage you to pass Bill S-5 and ensure that the government builds an effective system that will ensure that a patient’s medical history follows them wherever and whenever they seek care, and that high-speed internet access is also there. Without that integration, we are setting both physicians and patients up for failure.
Thank you.
The Chair: Thank you very much, Dr. Giles. Dr. Brown, you have five minutes.
Dr. Joel Brown, Vice-President and Family Physician, Black Physicians’ Association of Ontario: Chair and honourable senators, thank you for the opportunity to speak with you today.
My name is Dr. Joel Brown. I’m a family physician, and I serve as Vice-President of the Black Physicians’ Association of Ontario, or BPAO. We are a provincial organization with national reach. Our members are Black physicians and medical trainees committed to improving health outcomes, increasing representation in medicine and advancing health equity for Black communities across Canada. Although we are based in Ontario, our work speaks to a national reality. Ontario is home to just over half of Canada’s Black population, at about 52%. That makes it a critical place to focus, but the issues we are addressing exist across this country.
At BPAO, we focus on three things: representation, advocacy and community engagement. We support Black students on the path to medicine. We push for change within health care systems. We work directly with communities to rebuild trust because trust shapes whether care is accessed early and whether plans are followed.
The disparities we are talking about are real: higher rates of chronic disease, barriers to access and experiences of bias within the system. These are not abstract problems; they show up in exam rooms, in delayed diagnoses and in poorer outcomes.
This committee’s work on Bill S-5 matters because a more connected health care system can improve care across the country. Right now, the system is fragmented, as we have heard; information does not move the way it should; patients fall through the cracks. Connection needs equity safeguards to deliver benefits fairly. A faster, more connected system that ignores inequity will widen gaps.
There are a few things we need to get right.
The first is data. The bill talks about data sharing. Canada also needs race-based and disaggregated data to see where gaps exist and whether solutions are working. That work needs clear governance and community involvement so it strengthens trust rather than undermine it.
The second is accountability. Many of the details will come through regulation. Equity must be explicitly embedded in those regulations from the beginning, with Black-led organizations meaningfully involved in shaping them.
The third is technology. Digital systems shape care. Without intentional design and oversight, they can reproduce the same inequities we are trying to address.
Consistency is fourth. A national framework must lead to consistent outcomes. Equity cannot depend on where someone lives.
The final element is investment. Technology needs investment in community-based care and trusted organizations to close health gaps.
Let me be clear about what we are asking: We are asking that this work include a clear commitment to race-based and disaggregated data collection, with appropriate safeguards. We are asking for formal mechanisms that ensure Black-led and equity-focused organizations are part of the regulatory and implementation process. We are also asking for dedicated, sustained funding to support equitable implementation across provinces and communities.
Those are practical steps, which are achievable, and they will determine whether this bill delivers on its promise.
Honourable senators, this is a moment of opportunity. We can build a system that is more connected. We can also build one that is more connected and more just for the most vulnerable in our communities. The difference will come down to the decisions made in rooms like this. If this system does not work well for those most impacted, then it does not work as well as we say it does. So let us get this right the first time.
Thank you. I look forward to your questions.
The Chair: Thank you, Dr. Brown. Mr. Quinn, the floor is yours.
Anthony Quinn, President, Canadian Association of Retired Persons: Chair and honourable senators, thank you for the opportunity to appear before you today on behalf of over 250,000 members of the Canadian Association of Retired Persons, or CARP.
CARP is a national not-for-profit, non-partisan membership association, representing primarily Canadian seniors and their interests. I am honoured to serve as the president.
For many years, CARP members have raised concerns about access to their own medical records. This issue did not begin with digital systems; it goes back decades, to paper files that did not follow patients when they changed physicians or moved between communities. Information was lost, delayed, sometimes withheld or unavailable when it was needed most.
Today, that problem has evolved, but it has not been solved.
As a caregiver to my own aging parents living in urban Ontario, I have a number of health record apps on my phone and computer serving them. There is MyCareCompass from LifeLabs, MyChart from Trillium Health Partners, PocketHealth for Halton Healthcare imaging and another MyChart instance for the Halton hospital. Each one has a clear, descriptive name. Each one holds useful information to both the patient and health care professionals. None of them are connected.
If I want a complete picture, I have to move between systems, piece information together and fill in the gaps myself. None of our family doctors offer patient access to their health records at this time.
That is the current state of the system for seniors and caregivers in Canada. This is not a task that should be put on the backs of Canadian patients, particularly older Canadians, especially when they are dealing with health issues. Right now, the system expects patients to act as their own care coordinators and record-keepers. That is not a reasonable expectation.
At the same time, in the absence of that information, they may be subjected to repeated tests and trying to recount their own medical histories, often with omissions and errors, which is not the best practice for the patient or our system.
There is broad agreement on the objective of this legislation. Patients are not asking for more fragmentation. Clinicians are not asking for disconnected systems. A more connected system serves everyone, and CARP supports that objective.
But improving the flow of health information will not resolve the most visible pressures in the system. It will not address physician shortages, reduce emergency room overcrowding or correct the systemic lack of preparation for an aging population. Those challenges require separate and sustained policy action.
Bill S-5 should be understood in that context. It is not a solution to the system’s capacity challenges, but it is a great step towards a system that functions more effectively. The federal government is taking its rightful role in what is often considered a provincial matter. Canadians are not tied to one province and neither should our health records be.
At the same time, experience tells us to proceed with discipline. Canada has invested heavily in digital health over the years. In too many cases, these investments have not produced clear improvements for patients, and taxpayers have seen little or no return on their substantial investments.
Systems have been built, but fragmentation remains. That history does not argue against interoperability. It argues for accountability. This legislation should be accompanied by clear expectations, measurable outcomes, transparent reporting and accountability if results fall short. Without these elements, there is a risk that investment will outpace improvement.
CARP would like to highlight four areas where the Senate can strengthen this bill.
First, patient access must be real. Older Canadians need clear, usable access to their own health information. If patients cannot easily access and understand their records, the objective has not been met.
Second, data blocking must be addressed with enforcement. Systems that restrict access or limit sharing undermine the purpose of this legislation. Compliance must be monitored, and there must be consequences where standards are not met.
Third, privacy protections must be strong and credible. Health information is deeply personal. Trust will determine whether Canadians accept greater data sharing.
Fourth, if a system is truly unified and transportable, it must remain accessible without cost as part of the promise of Canada’s universal health care system.
There is also the growing discussion about the use of health data for research and artificial intelligence. CARP supports responsible innovation. The potential is significant, but the use of personal health data must be governed with care. Consent must be meaningful. Use must be transparent. Oversight must be independent. Without those conditions, public confidence will erode.
This legislation moves us in the right direction. It addresses a problem that our members experience every day.
One caveat I want to add after listening to the presentations and questions raised in the first session of this committee is that if we put too much demand on the innovators who could provide the kind of system we’re all looking for, they could walk away, leaving us in the same or worse situation than we find ourselves in now.
Thank you, and I look forward to your questions.
The Chair: Thank you, Mr. Quinn. 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 witnesses.
Senator Burey: Thank you to all our witnesses. The testimony has been compelling.
Now, we have heard from the other witnesses as well about the promise of interoperability and some of the concerns regarding guardrails. I’m just going to cut to the important thing, since we know there is a big benefit.
What are your big concerns about this legislation? And do you have any specific amendments that you would like to have us put into this bill that could improve it? We could have a round table. I will start with Dr. Giles.
Dr. Giles: Thank you. We don’t have any specific recommendations for changes. My one concern is that rural and remote Canada gets left behind by a lack of infrastructure. Thank you.
Dr. Brown: In practice, the notion of interoperability can sound and feel very abstract, and it’s just to ensure that its scope, whether in primary care or hospitals or specialists or home care — that we certainly see an interoperability that works in practice.
Also, going to the equity-relevant aspect, we need to be able to ensure that however we approach this, we’re able to see the high‑quality race-based data and disaggregated data collection is used with clear governance and transparency so any gaps can be identified and progress is measured appropriately.
Senator Burey: Mr. Quinn, can you elaborate? You had some recommendations.
Mr. Quinn: Sure. When it comes to the specifics, I think the previous committee presenter Tory Hibbitt had many important legal aspects to share. But from the patient’s point of view, I think the four points we made included access.
So whatever comes of this legislation, we have to ensure that the final product is something that is really accessible to older Canadians and that technology is not outpacing their ability to take advantage of those records.
Data blocking has to be addressed with enforcement, and we’d like to see strong regulations in there so that the data is clearly and freely shared, as well as privacy protections, again, ensuring that privacy is strong and credible. That will ensure trust amongst users.
Senator Burey: Thank you.
Ms. Kelly: Similar to my co-witnesses, we don’t have any specific recommendations as to amendments to the bill as it stands today. Our particular interest would be on the regulatory and legal side after the fact, as well as potentially the integration of the standards association so that we can ensure that equity opportunities are addressed in the unification of standards that will be used to inform the capacity and process of interoperability.
Senator Hay: Thank you all for the work you’re doing and for being here today to help us work this through.
I have two very different questions, so if I have time for the second one, great.
First, I’m still hooked in my mind on the health record. Let’s say it’s my health record. What if I don’t want my full medical health record shared? For example, what if, in my medical history, I had an abortion that I didn’t want to share across multiple services? Or I was now in a hospital or an environment that still remains faith-based, like St. Mike’s or St. Joe’s or something like that? How would I be able to control that?
Thinking about what Dr. Giles said about the fact that we need the medical records to move, something like that, how do we do it based on what a patient might want, potentially a vulnerable woman or equity-based environment?
Ms. Kelly: You’re looking at me, so I’m assuming I have a role to play here.
I was warned not to bring up some of what I’m going to say, but I think it’s meaningful. There is a difference between portability and transposability. Does anyone in this room play an instrument? Because we’re going to get really nerdy for a second. No? I’ll give you the best example I can.
If you were to give a flute player a score or a musical piece that was meant for someone who plays the trombone, it would sound terrible. You can’t just take one set of data, items or definitions and place them in another environment. You must transpose them. You must change them and adapt them for a suitable environment so the people who receive those notes can use them appropriately.
I think within this work there is a level of transposability that has not been addressed that will be really important to acknowledging the rights of women, in particular, and protecting minorities and more vulnerable populations.
Senator Hay: And to the question of what if I only wanted part of my medical record shared? I think anyone could answer that. Will the patient be able to decide what gets shared and what moves with their record?
Dr. Giles: Right now, there is the ability within a given EMR to lock specific documents, and it can be locked by providers or it can be locked by patients.
If we go back to the world of banking, let’s say I deal with two different banks and I’m trying to get a mortgage out of one, and they want data from the second bank. They have to get my okay before certain things are shared. You don’t get access carte blanche. I think, in an ideal world, there would be an element of patient control, which I understand could be hard for people who aren’t particularly savvy with documents, but I think we have an element of what you’re suggesting that already exists within electronic medical records.
Senator Hay: I think I’m going to go down a rabbit hole that we don’t need to.
Senator McPhedran: As we’re having this discussion, it’s triggering the lawyer in me. I’m thinking what if I were to decide to withhold information that was desperately needed for my health in another situation in the future. It’s really inviting a kind of Russian roulette with one’s health. And what kind of waiver would a medical facility, a health facility, a health professional require of me so my decision to withhold health information remained my liability?
I’m raising it because I can see all kinds of ways this notion, which I think is a very legitimate notion of ownership over crucial information about oneself, is not as straightforward as it seems.
I had a specific question for Dr. Brown, but I invite anyone else to answer after he does, and that is this: Do you think in this bill we should allow for the collection of race-based data?
Dr. Brown: I think it would be helpful if, for instance — what we don’t measure we’re not able to understand the impact of. Perhaps, within the bill, if there was something instructive to capture that data to understand, we could get a much better understanding about the impact of some of these inequities, especially as they affect the most vulnerable of our population.
I recognize there could be some concerns with that. For instance, patients should be given the opportunity to opt out. In many ways that already exists. If someone doesn’t want to share racialized information about their background, they should have the right to withhold that information too. But again, if someone does opt in, then perhaps it contributes to giving us this broader view of what is really happening, what trends we can identify to help address and close some of these gaps.
Senator McPhedran: Dr. Brown, if I could expand that question a little bit to the time available, any responses from panellists on the whole idea of disaggregated data as part of this process?
Did I just steal your question, Senator Greenwood? I saw this look on your face.
Disaggregated data — does anyone want to comment on that in the context of the legislation we’re addressing here?
Ms. Kelly: I’m happy to comment in that I don’t know that it’s something that necessarily needs to be spelled out within the bill itself, but it certainly needs to be addressed in regulatory and standards processes as an outcome of this work.
In particular, we know the disaggregation of data allows for insights to be generated that we need to be able to, at a systems level, more effectively serve traditionally under-represented or marginalized populations within a health care context. As it pertains to sex and gender, the ability to disaggregate that allows us to understand when there are differences occurring within a population that can be addressed if we understand some of those pieces.
What may be important is that they are still, if seen in aggregate at a scale that is de-identifiable — so just because something would be disaggregated doesn’t mean there’s an intent to de-identify, and that would be something really meaningful from a standards perspective on how that data gets shown.
Senator McPhedran: Does anyone else want to answer?
The Chair: With four seconds, I’m afraid not.
Senator Senior: Thank you to our witnesses. I too find your testimonies quite compelling.
I’m thinking back to a long time ago when I was changing doctors because the one I had was not serving me well. And I wanted my file — my file was as thick as anything because I had been seeing him since I was a child — and he wanted $5 per page. So I left my file and went to a new doctor without that record. To this day, I don’t know what happened to my file.
So that system that we had clearly needed to be addressed in a number of ways. One would be that it should be my file. I should be able to take my file. But the other part of it is, as Senator Hay asked, what are the implications of my care as a result of not having that information? And what if I don’t want my information shared in this new digital world?
I understand not wanting to put amendments forth because it may delay the bill; I get that. We’ve had lots of practice around here with that. But I’m concerned around what that means in a new world. I’m a former chair of a hospital board for women, so Epic and other things are issues we dealt with, but I’m concerned about that. I’m concerned about what happens.
I’m concerned about what if some institutions decide disaggregated data is not what they want to do and, therefore, don’t do it and opt out of it. Because it’s important for the health, particularly, of Indigenous, Black, racialized and women’s groups.
I wonder if any of you could comment on any of what I’ve just said.
Mr. Quinn: I think your experience with your personal medical records is typical of what CARP members have shared with us over many years — the paper files not being transferable between physicians and specialists, particularly without cost.
So I think perhaps the past can inform the future on this and we ensure the records actually do belong to the patients themselves and that they not be held financially at ransom to access those records.
Dr. Brown: I think the point you made about whether or not the benefit of it being within the amendment stage, giving perhaps more momentum and force to ensuring there is recognition of the equity piece and being able to monitor and understand what’s happening as it relates to these marginalized groups, I share your concern about the point. If we leave it to the regulatory stage, that is not as optimum, but it’s a thought.
Dr. Giles: I think you sort of tangentially touched on an important topic, which is the definition of interoperability. Because you didn’t want 500 pages of your medical history; you didn’t care about when you had a cough or a cold or something small. You wanted precise — maybe consultations from specialists or imaging, et cetera. If we don’t define interoperability, companies can make it so that, “Oh, we followed the letter of this bill. We just gave you so much that you can’t make sense of it.”
The Chair: Thank you, Dr. Giles. Thank you very much.
Senator Petitclerc: Thank you all for being here with us. I’m not too sure who will want to answer the question. I would like to hear all of you.
Continuing a little bit on what Senator Senior was saying, I’m trying to understand the frame of this and how far this legislation goes.
Taking the example of data collection, you mentioned it, and others mentioned it. So on data collection, the way I see the bill, it’s not prescriptive on data collection, but it’s enabling. So my question is this: What are the risks of this enabling, non‑prescriptive nature in terms of if you want to have some sort of standardization, and maybe in some contexts it’s done, and in some contexts it’s not done. Is that a possibility or is that a problem?
I’m not sure who, if anyone, wants to tackle that. Maybe it’s not an issue. I’m just trying to understand.
Mr. Quinn: From the patient’s point of view, senator, I’d want to make sure that the physicians who were collecting that information of their patients didn’t feel hamstrung that what they put into records may be somewhat throttled in the digitization of it and would not be beneficial to the patient’s future assessments. I’d want to make sure that we’re not hamstringing the physicians and those collecting the information at the source, that their concern about how these are being entered into the data in the future and perhaps not getting down all of the information that they would typically get during their assessments.
Ms. Kelly: As somebody who works on a day-to-day basis with data and health data, in particular, my assumption is the process of interoperability is only possible based on a process of standardization. Although the bill in and of itself is not prescriptive in terms of what must be collected, in order for interoperability to occur, it has to be standardized. Those two things are very much related.
I think within the standardization process — which is why I’ve deferred so much to the regulatory process, which, to the points made earlier, may need to come earlier and be contended with in the bill process — there are multiple steps to get to interoperability that will confine and add structure to that. Interoperability cannot happen before any of those other steps, which will standardize the data types collected and the way by which they are defined.
Senator Petitclerc: That helps me understand. Any other comments on that?
I think I heard you also say that placing too many demands on innovators will make them walk away. I wanted to hear a bit more about that.
Mr. Quinn: That was a concern I expressed that while we’re expressing the best interests of patients and of our regulations, if we put too much demand on the private providers of these systems, they may not find it to be a project that they want to take on and provide to Canadians. That could leave us without the progress that we’re all seeking here today.
Senator Petitclerc: Maybe in the second round we can hear what kind of demands.
Senator Osler: Thank you to all the witnesses for being here today.
My question is for Dr. Giles. Congratulations on being President-elect of SRPC, and thank you for your service to the patients of northwestern Ontario. In a past life, I was an ENT surgeon in Winnipeg, and you were one of the most highly regarded physicians, and patients spoke highly of you.
My question is on access to the use of and exchange of electronic health information across jurisdictional boundaries. In your opening remarks, you talked about the challenges of referring patients from Ontario to see clinicians in Manitoba. At a very practical level, in order to provide the best possible care, what do clinicians want and need in a connected health information system, especially when patients are referred across provincial and territorial boundaries?
Dr. Giles: Thank you for the question. I think it shows a lot of insight into the problems that we have.
Right now, I print things off the clinic chart that I have available to me from the ER, and then I send them physically with the patient. That is the only way I get information to Winnipeg. I understand each province wants to do its own thing, but if there were alignment between the provinces, that would be great — at the very least, having border communities have an ability to have both sets of information available to them.
I can’t work within the clinic chart that I see in the ER, but I have a read-only version of it, and that is rich and full of data that is so important to me every day. I have patients who forget to tell you the most key parts of their medical history. We have a problem of maybe having too much information available to us in the future, but right now, it’s too little, and costly and dangerous errors happen. Even if it has to be a duplication of services between provinces and borders, we just need to be able to see the chart, at the very least.
Senator Osler: I asked this because there are different electronic medical records that are formatted differently, things are filed differently, and then you’ve got provinces and territories with different privacy legislation and different standards for different things. You’ve mentioned some common things, but what is the baseline? This bill is going to try to harmonize between provinces and territories so that we can get better information sharing across the country.
Dr. Giles and then Dr. Brown, what are some baseline things that you would want to have in interconnected health information records?
Dr. Giles: My number one would be a completely unfancy spreadsheet of lab values that can go from jurisdiction to jurisdiction and it just populates. Right now, some provinces have that, and it needs to incorporate private health interactions as well because we’re seeing in Alberta that people are having surgery, but nothing is uploaded to the provincial record. They come in with complications to the public ER, and my colleagues are blind.
Imaging reports, it’s right now very hard to — these are big files. In the future, it would be great to see the actual images, but we need imaging reports and what we call the CPP, the Cumulative Patient Profile, which could include things like medications and past medical history, that a patient agrees to. It doesn’t have to be fancy. I just need the highlights to help me save lives.
The Chair: You’ve run out of time, but go ahead, Dr. Brown.
Dr. Brown: I was just going to add a quick thought. There are times when innovators find innovating in Canada sometimes a bit off-putting, because there are times when they want to be able to bring an innovation that might be able to help a doctor, but the electronic medical record they’re using isn’t open or compatible to integrate with their software because of the data blocking that we speak of. Just being able to find ways to dissolve some of this difficulty so that innovation can thrive, with safeguards to ensure that patient data is respected and so on, would help. Also, if a doctor wants to move from one EMR to another, there’s a little bit of that transposition that can happen of the patient’s medical record so they’re not locked into one provider of an EMR. These are some of the things that I think would be great to see happen.
The Chair: Dr. Giles and Dr. Brown, what are your expectations of an open system in which you would be able to look at patients’ records across the health care system? Are you looking for a transposed record that harmonizes an existing patient record into something new? Or are you looking just to look at existing records in whatever shape or form they’re in?
Dr. Giles: I would say the transposed record that you speak of would be the dream, but I would take the second one in an instant. I just need something. Honestly, this would do so much to retain physicians because we would stop hating our jobs where we have to chase down faxes all day.
The Chair: Thank you. Dr. Brown, any thoughts?
Dr. Brown: Yes, I would add to that. There is a sense in which the kind of data you want to be able to have at your fingertips about any patient — and as physicians, we can think of immediate ones, like allergy status or any significant medical or surgical history that could be relevant — wherever that patient is seen anywhere across Canada, you can have confidence that essential information that directly determines your clinical decision making is available to you clearly.
As has been mentioned before, there are going to be some aspects of someone’s medical history that may not be necessary to be immediately available in an emergency situation, so I would love to see that there is a basic record that has — as I said — some of the things I’ve mentioned available to be seen by any clinician who is seeing that patient wherever in Canada.
The Chair: Thank you.
Senator Arnold: Thank you all for being here today.
Dr. Giles, I really appreciated what you described so articulately. That happens in my city of 150,000 people between two hospitals in the same city. When I speak to citizens about what’s happening, they’re like, “How has this not been fixed yet?” I thought your analogy to banking was really appropriate as well. Clearly, there are ways to fix some of these things.
I guess my question to all of you is who is doing this well. This is a big, complex, thorny issue, but someone must have figured it out somewhere. Do you have any examples of places where they’ve figured it out?
Dr. Giles: I have two examples. When we spoke to our colleagues across the nation, northern Saskatchewan was a beacon of bright light. Everything funnels down in a logical way, where one person can see the next facility and can see the next facility.
Alberta has some advantages with a common chart throughout the province. I said that certain things don’t show up in that, like private care, but it is very helpful.
ConnectingOntario, in a very minor form, is a way that gives us helpful information, but it’s not enough.
Ms. Kelly: Purely selfishly, as a researcher with access to patient information to inform that process, I think France has done an incredible job with their national process, and Finland, in particular, for women’s health, has done a really great job. Those would be the two that I would point to.
Senator Arnold: Thank you.
Dr. Brown: I would add — and you can probably tell from my accent that I’m from the United Kingdom originally — the example of the National Health Service and the model of the patient record being fairly unified. Patients can be seen in London or in different parts of England, and there will be an available record with things like their drug history and allergy status. That was an example of it done well, in my experience.
Senator Arnold: Thank you.
The Chair: We have essentially run out of time. We are supposed to end at 6:14, and it’s 6:13. I think we have ended in good time.
Senator Senior: May I ask a question for follow-up?
The Chair: Why don’t we suggest this: There are senators who have put their names down for follow-ups. Can you ask your questions, and can we ask the witnesses to respond in writing, please?
Senator McPhedran: My question is quite short, and it is about choice. We’ve done a lot today, exploring what one might call “optimal” or “ideal.” A lot of that is not in this bill. The question is this: Is there enough in this bill that if it goes forward without amendments, is it still going to be helpful for what you need to see done and what you believe needs to be done?
We’re happy to take written answers, but that’s my question.
Senator Senior: I don’t ask this to be provocative; I’m just asking in terms of how it would work in terms of free, prior and informed consent by patients: How would it work with interoperability?
Dr. Giles, I think of the scenarios that you’ve painted for us, particularly in terms of emergency situations. I don’t know if that’s even possible, but I’m curious about where it fits into interoperability.
Senator Greenwood: My question is two-pronged, and it follows up on Senator McPhedran’s as well. It’s that overall question: Is there enough in here?
I’m very interested, Dr. Giles, in the practicality of your responses. What is it that you need?
And for all of you, what are the essential pieces of information that need to be shared? We’re not going to get everything, but if there were three or four things that you think are critical that should be shared, could you respond that way?
The other question that I have is that we know that health care is the responsibility of the provinces and territories, and there’s a relationship. We’re talking about a federated country here. It’s no surprise that there is a challenge in sharing information. Any comments you could make around that would be helpful, including any suggestions on how we might address that as senators. This bill focuses on vendors, which is a little bit different than what we’ve been talking about when you look at the bill itself. Anything that you could add to it to help us with that would be great.
The Chair: This brings us to the end of this meeting.
I’d like to thank the witnesses for your time and for being with us today and for helping us understand your situation and the needs of this bill.
(The committee adjourned.)