Sonia Sidhu

“Mr. Speaker, I will be sharing my time today with the member for Winnipeg North. When I was a health system and academic leader, we used to talk about having two jobs in health care. First was taking care of the patient of today. To do that work, obviously, we need access to the health data across a patient’s journey, no matter where they are in the health care system. We also talked about having a second patient, the patient of tomorrow, and that is the work of supporting research, quality improvement and health system innovation. Bill S-5 is a critical piece of legislation that would allow us to care for both the patient of today and the patient of tomorrow, and that is why I am proud to rise in the House today to speak in support of it. All over Canada today, people are going to visit their family doctors. They are going to be talking about their mental health. They are going to be talking about their diabetes and their blood pressure control. They are going to be talking about their cancer journeys. They are going to be getting immunizations, prescriptions and requisitions for medical imaging. They might be getting a referral to a specialist. They might be referred for counselling or for physiotherapy. In pretty much every one of those family doctor’s offices today, they are going to find their family doctor sitting and typing away on a computer, generating tasks for the physician or the health care worker and for the patient. If a referral is made, the doctor is going to be typing away, generating forms inside that computer, and if that patient then goes to see a specialist, they are going to find the specialist sitting at their desk taking notes on a computer. If they end up in an emergency situation and have to go to the hospital, all the notes, the test results and the imaging results are going to be stored in an electronic record. In my community of downtown Toronto, those places, the family doctor’s office, the hospital, the emergency department and the specialist’s office, might be just a few subway stops away from each other. Sometimes they are even in the same building, so one could forgive a patient for assuming those computers are talking to each other. However, it turns out that all too often, that is not the case. People could be forgiven for asking why, in a set of single-payer health systems across the country in any given province or territory, the data generated in the hospital, the data generated in the doctor’s office and the data generated in the home care interface are sitting in separate silos, not talking to each other. Bill S-5 seeks to remedy that. By requiring the vendors of the electronic systems we use in our health systems every day to meet interoperability standards and putting an end to data blocking, wherein vendors hold onto the data of Canadians under the mistaken view that they own the data about the health of our people, as opposed to the patient and the health system as a public good, we would be putting in place the necessary infrastructure for a modern health care system across the country. It used to be that in order for electronic systems to talk to each other in a health care system, they had to actually be on the same system. I am pleased that this is no longer the case. We do not need all of Canada to be using a single electronic health record for data to flow in the ways that patients need, because technology has leapfrogged that requirement. When vendors meet those interoperability standards referred to in this bill, the data would be able to move in order for us to take better care of people. The hospital and the clinic would be able to securely share information that is relevant to the care of the patient. To emphasize the importance of this bill, one need only quote the preamble: the health information of Canadians is not easily accessible to them or to their health care professionals, which puts the safety of Canadians at risk; There is broad consensus among stakeholders that the interoperability between health technologies and health information systems, as well as a prohibition of data blocking, are necessary to ensure patient health and safety, improve health outcomes and promote equitable care for Canadians. For patients to make informed decisions about their own health, they must have easy, comprehensive and secure access to their health information. Their health care professionals and researchers must also have access to it. Why does this bill matter? Why do we need health records to be interoperable, and why do we need health data to be treated as a public good? I want to speak to primary use and secondary use and begin by talking about the delivery of clinical care and access to one’s own records. We have covered well in the House today in this debate the necessity of interoperability of health records for patient safety in terms of clinicians being able to access critical information when a person comes in for care, so I want to focus my remarks on the two other critical aspects. First is the ability of Canadians to access their own health records. Second is the ability to use the data for research, quality improvement and system oversight. The pan-Canadian OurCare consultations, led by Dr. Tara Kiran and an incredible national team of researchers and experts in public engagement and primary care, had conversations with hundreds of people living across Canada to understand what Canadians wanted from a better primary care system. In their conversations, a core refrain arose again and again: People in Canada are frustrated that they do not have access to their own medical information. People shared how not having access to their own medical records made it challenging to get the care they need when they had an emergency, when they moved to a different province, when their doctor moved or retired, when they did not have a doctor or when they were just trying to advocate for themselves or for their loved ones. Through the OurCare consultations, people in Canada spoke clearly and consistently. They want access to their own health records online in a format they can share with clinicians and loved ones and where they can have confidence that the information will be kept private and secure, which is not a very radical or unusual idea. Countries around the world have already given people access to their own health records through an app, like the Nordic countries, for example, but also Estonia, Spain, Portugal, France, England and Australia, just to name a few. As we look to build national infrastructure and to become more self-reliant as a country and as we look to create the conditions for our country to thrive in the years to come, we need to invest in the most foundational of assets: the health of our people. Bill S-5 would open the door for people being able to access their own health records by ensuring that their data would be liberated from the vendors who may be holding on to it. That brings me to secondary use and the patient of tomorrow. This is an aspect of data interoperability we should not neglect, because beyond the care of individual people, we need health data to do quality improvement, to do groundbreaking research, to engage in health system oversight and to develop artificial intelligence and apply it to the biggest problems facing the health of Canadians. This is what we call secondary use of data, because health data is the raw material for improving care. Research and quality improvement teams use data to track people’s health outcomes over time, to measure the impact of our interventions and to ask important questions that will lead to the next generation of breakthroughs. Health data also contains the stories of important inequities and outcomes across the country. It helps us to understand whether people living in rural communities, people experiencing homelessness, indigenous people, Black Canadians and other groups are getting the care they deserve. This information can then drive our investments and programs as a government, but to understand the story, we need the data. Our superb Canadian researchers and health system leaders cannot do their jobs without it, and if it is being blocked sitting inside a vendor’s records, we are going to be in trouble. Finally, I want to say a few words about artificial intelligence. We are obviously at a new frontier. If we want to use AI to reduce wait times in emergency departments or wait times for specialist care, and if we want to use AI to improve the quality of care being provided to seniors in long-term care, to cancer patients in our cancer centres or to children in our family doctors’ offices, we are going to need data and the data will need to be linked in order for us to do it. Bill S-5 would regulate vendors. It would require them to play ball in ensuring that data can be shared across our health systems. Once the data is unblocked and interoperable, a lot of work still remains to be done. This bill would not replace the work ahead on sovereignty, commercialization, data export approaches and indigenous data sovereignty, all of which have been flagged by our colleagues in the Senate, but it would lay the foundation for all those things. Bill S-5 would lay the foundation for us to care for the patient of today and tomorrow. I am proud to support it.”