Discussion · Government Orders
Abdelhaq Sari Liberal
“I want the House to pass this bill quickly. It requires health computer systems to share information securely and stops companies from locking patient records. This will save doctors and nurses time and help patients get better care.”
“Madam Speaker, I am pleased to have the opportunity to speak to Bill S-5. I want to begin by having members imagine the following scene: A mother from Montreal North arrives at the emergency room with her son in the middle of the night. She knows his allergies, medications and most recent visits by heart, but the doctor on duty does not see any of that information on the patient’s record. His record exists, but it is somewhere else, in another system, not in the system of this clinic, this CLSC or this hospital. It is in a different software program or sitting on a fax machine somewhere. As a result, his mother has to repeat the information over and over again. While she is doing that, time is being wasted, and sometimes much more than just time is lost. Today, information can travel around the globe in a second, but it is still difficult for a patient’s health records to make it across the street. Bill S-5 seeks to remedy that issue. We are talking here about what I would describe as the cost of working in silos, which can be explained in numbers, and those numbers speak for themselves. Four out of five patients want to be able to access their health care records digitally online. However, only 39% are able to do that, and often they can access only some of the information. In 2023, 42% of Canadians reported gaps in the coordination of their care because of systems that do not communicate with one another. Behind those numbers are tests that had to be redone, delayed diagnoses and doctors who are searching for information instead of providing care. There are also families that carry their own health records around in an envelope or even a plastic bag—I have seen it happen—because the systems do not communicate or share data. Consider the people who provide care. Our doctors, nurses and pharmacists already work under tremendous pressure. Every hour spent filling out forms, waiting for a fax—yes, I did say a fax—or calling another clinic is an hour less spent with a patient. That is really the important thing. That is the service that we want to provide to our citizens. In a system low on resources, unnecessary paperwork is not just a detail; it is health care time wasted. I would also call this compartmentalization an “opportunity cost”. It is a collective cost. It prevents us from fully understanding which policies work and which performance indicators are best for the work at hand. It prevents us from knowing where shortfalls exist, where to look for the best impact indicator, or how to locate the best efficiency indicator, simply because the systems do not communicate; they exist in silos, with less integration. When systems operate in silos, information is not only less integrated, but the lack of interoperability prevents us from attaining the global perspective we need to measure them properly. Without seeing a situation clearly, it cannot be corrected. Without a global view, improvement is impossible. What cannot be measured is difficult to quantify or even to improve. Of course, inequalities still remain. Bill S‑5 does two simple but essential things. First, it requires interoperability. Health information technology vendors will need to ensure that the systems they sell, license or supply as a service can talk to each other and communicate according to common Canada-wide standards, including information security standards. Second, it prohibits data blocking. A vendor will no longer be able to lock a patient’s information to keep its clients captive. Health data belongs to a patient’s continuum of care, not to a vendor’s business model. Let us consider a simple example. When people switch phone providers, they get to keep their phone number. No one would consider that revolutionary today. It is taken for granted. It is simply the way things work. Why, then, should we accept that a person’s medical history remains trapped in a particular software platform or IT solution? If we demand number portability for our phone service, then we certainly can, and should, demand the same for the health of our families. I have spent a good deal of my career in IT governance and in business and corporate architecture. To be honest, technology is rarely the problem. More often than not, the problem and the challenge are cultural, including the absence of common rules. People build islands and then act surprised when there are no bridges connecting them. Bill S-5 represents an obligation and an opportunity to build those bridges. Building bridges involves creating connections. However, connecting systems does not mean we want to expose our data. Some people will ask where Bill S‑5 stands on privacy. The answer is clear: It makes no amendment to any federal, provincial or territorial privacy law. The current rules on the collection, use and disclosure of data continue to apply as they always have. Only authorized users will have access to records. Bill S‑5 does not mandate the sharing of data. It allows for the secure transfer of information where such transfers are already permitted by law. To reiterate, connecting systems does not mean data will be exposed. On the contrary, data will be better protected. Experts also see data integration as a way to enhance data security. When data is distributed, or even scattered, across multiple siloed systems, redundancy can result in inaccurate information being shared without the knowledge of the individual concerned. We need to stop relying on a patchwork of systems that, in Quebec and elsewhere, are unfortunately quite outdated. The government is not trying to take control; it is proposing a partnership. I want to speak directly to my colleagues from Quebec: Health care falls under provincial and territorial jurisdiction, and this bill respects that. It acts as a safety net where similar legislative measures do not exist. Quebec already has a well-developed interoperability regime, and common standards will be clarified in consultation with the provinces and territories. We are not starting from scratch on this. Federal, provincial and territorial governments are already working together to develop a pan-Canadian interoperability road map, and Bill S‑5 does not seek to supplant that. Its purpose is to support, assist and accelerate the process. There is also a real economic benefit. Adopting common standards reduces barriers to entry and enables Canadian digital health companies to grow, innovate and compete. Greater competition can foster more modern and potentially less costly solutions for our public health systems. As for my Conservative colleagues, I know they share our commitment to improving the quality of data in order to make better-informed decisions. Bill S-5 is an essential step toward that objective. Let us be clear: The bill does not require anyone to adopt a single system, nor does it replace the tools that are already in use. It requires them to communicate and exchange information with one another. That approach is simpler, more flexible and more respectful of what each province has already built. For me, this is a matter of fairness, first and foremost. When information does not follow the patient, it is always the same people who bear the consequences: seniors who are seeing multiple specialists; families living in rural and remote communities; and newcomers, including many in my own community. For a family in a rural or remote community, an electronic prescription, a referral to a specialist sent in a matter of seconds or a remote consultation with the correct medical records to hand can save them hours of driving, days of waiting and a great deal of worry. In closing, let me go back to the mother from Montreal North who went to the emergency room in the middle of the night. Thanks to Bill S‑5, she will no longer have to be the system’s memory. The doctor will have the information they need and her son will receive safer, faster and better coordinated care. Data saves lives and so does integration. The Senate has carefully studied this bill. In the House, all the parties are saying that they want modern care. We need to ensure that we have the means to achieve our ambitions. Let us work together to pass Bill S‑5 quickly.”
Madam Speaker, I am pleased to have the opportunity to speak to Bill S-5. I want to begin by having members imagine the following scene: A mother from Montreal North arrives at the emergency room with her son in the middle of the night. She knows his allergies, medications and most recent visits by heart, but the doctor on duty does not see any of that information on the patient’s record. His record exists, but it is somewhere else, in another system, not in the system of this clinic, this CLSC or this hospital. It is in a different software program or sitting on a fax machine somewhere. As a result, his mother has to repeat the information over and over again. While she is doing that, time is being wasted, and sometimes much more than just time is lost. Today, information can travel around the globe in a second, but it is still difficult for a patient’s health records to make it across the street. Bill S-5 seeks to remedy that issue. We are talking here about what I would describe as the cost of working in silos, which can be explained in numbers, and those numbers speak for themselves. Four out of five patients want to be able to access their health care records digitally online. However, only 39% are able to do that, and often they can access only some of the information. In 2023, 42% of Canadians reported gaps in the coordination of their care because of systems that do not communicate with one another. Behind those numbers are tests that had to be redone, delayed diagnoses and doctors who are searching for information instead of providing care. There are also families that carry their own health records around in an envelope or even a plastic bag—I have seen it happen—because the systems do not communicate or share data. Consider the people who provide care. Our doctors, nurses and pharmacists already work under tremendous pressure. Every hour spent filling out forms, waiting for a fax—yes, I did say a fax—or calling another clinic is an hour less spent with a patient. That is really the important thing. That is the service that we want to provide to our citizens. In a system low on resources, unnecessary paperwork is not just a detail; it is health care time wasted. I would also call this compartmentalization an “opportunity cost”. It is a collective cost. It prevents us from fully understanding which policies work and which performance indicators are best for the work at hand. It prevents us from knowing where shortfalls exist, where to look for the best impact indicator, or how to locate the best efficiency indicator, simply because the systems do not communicate; they exist in silos, with less integration. When systems operate in silos, information is not only less integrated, but the lack of interoperability prevents us from attaining the global perspective we need to measure them properly. Without seeing a situation clearly, it cannot be corrected. Without a global view, improvement is impossible. What cannot be measured is difficult to quantify or even to improve. Of course, inequalities still remain. Bill S‑5 does two simple but essential things. First, it requires interoperability. Health information technology vendors will need to ensure that the systems they sell, license or supply as a service can talk to each other and communicate according to common Canada-wide standards, including information security standards. Second, it prohibits data blocking. A vendor will no longer be able to lock a patient’s information to keep its clients captive. Health data belongs to a patient’s continuum of care, not to a vendor’s business model. Let us consider a simple example. When people switch phone providers, they get to keep their phone number. No one would consider that revolutionary today. It is taken for granted. It is simply the way things work. Why, then, should we accept that a person’s medical history remains trapped in a particular software platform or IT solution? If we demand number portability for our phone service, then we certainly can, and should, demand the same for the health of our families. I have spent a good deal of my career in IT governance and in business and corporate architecture. To be honest, technology is rarely the problem. More often than not, the problem and the challenge are cultural, including the absence of common rules. People build islands and then act surprised when there are no bridges connecting them. Bill S-5 represents an obligation and an opportunity to build those bridges. Building bridges involves creating connections. However, connecting systems does not mean we want to expose our data. Some people will ask where Bill S‑5 stands on privacy. The answer is clear: It makes no amendment to any federal, provincial or territorial privacy law. The current rules on the collection, use and disclosure of data continue to apply as they always have. Only authorized users will have access to records. Bill S‑5 does not mandate the sharing of data. It allows for the secure transfer of information where such transfers are already permitted by law. To reiterate, connecting systems does not mean data will be exposed. On the contrary, data will be better protected. Experts also see data integration as a way to enhance data security. When data is distributed, or even scattered, across multiple siloed systems, redundancy can result in inaccurate information being shared without the knowledge of the individual concerned. We need to stop relying on a patchwork of systems that, in Quebec and elsewhere, are unfortunately quite outdated. The government is not trying to take control; it is proposing a partnership. I want to speak directly to my colleagues from Quebec: Health care falls under provincial and territorial jurisdiction, and this bill respects that. It acts as a safety net where similar legislative measures do not exist. Quebec already has a well-developed interoperability regime, and common standards will be clarified in consultation with the provinces and territories. We are not starting from scratch on this. Federal, provincial and territorial governments are already working together to develop a pan-Canadian interoperability road map, and Bill S‑5 does not seek to supplant that. Its purpose is to support, assist and accelerate the process. There is also a real economic benefit. Adopting common standards reduces barriers to entry and enables Canadian digital health companies to grow, innovate and compete. Greater competition can foster more modern and potentially less costly solutions for our public health systems. As for my Conservative colleagues, I know they share our commitment to improving the quality of data in order to make better-informed decisions. Bill S-5 is an essential step toward that objective. Let us be clear: The bill does not require anyone to adopt a single system, nor does it replace the tools that are already in use. It requires them to communicate and exchange information with one another. That approach is simpler, more flexible and more respectful of what each province has already built. For me, this is a matter of fairness, first and foremost. When information does not follow the patient, it is always the same people who bear the consequences: seniors who are seeing multiple specialists; families living in rural and remote communities; and newcomers, including many in my own community. For a family in a rural or remote community, an electronic prescription, a referral to a specialist sent in a matter of seconds or a remote consultation with the correct medical records to hand can save them hours of driving, days of waiting and a great deal of worry. In closing, let me go back to the mother from Montreal North who went to the emergency room in the middle of the night. Thanks to Bill S‑5, she will no longer have to be the system’s memory. The doctor will have the information they need and her son will receive safer, faster and better coordinated care. Data saves lives and so does integration. The Senate has carefully studied this bill. In the House, all the parties are saying that they want modern care. We need to ensure that we have the means to achieve our ambitions. Let us work together to pass Bill S‑5 quickly.