Billions of dollars have been poured into Quebec’s health-care system in an effort to improve the capacity of its information technology. The results leave a lot to be desired, though. For instance, when health authorities urgently needed real-time data on the number of COVID cases in the province’s facilities or the population in general, they realized information was still being communicated between institutions and departments via fax. That such an inefficient method of data sharing would still be in use in 2022 is simply unacceptable.
From the patient’s perspective, the situation can be just as infuriating. Information held within a medical record cannot easily be shared between hospitals due to the lack of interoperability of our existing electronic health systems, requiring patients to repeat their medical history multiple times, or even bring their own scans with them to an appointment. Not only does this burden both patients and care providers, but it introduces a risk of vital information being lost along the way in the treatment process.
What’s more, Quebec’s existing electronic health records are not even complete; they lack vital information such as past or recent vaccinations, allergies, and the hospitalization summary sheet written by the attending physician after a hospital stay. The physician hours (and taxpayer dollars!) spent trying to play detective to find all the missing pieces are a shameful waste. Not to mention the risk that patients face should certain information not be transmitted to all providers, such as harmful drug interactions or allergic reactions.
Beyond the obvious utility of an accessible medical history for patients and clinicians, routinely collected and detailed health data is also needed to conduct research, yet Quebec’s outdated and inefficient systems make it needlessly difficult for researchers to access data. Therefore, in addition to the current costs, Quebecers are surely losing out on future home-grown health innovations.
Clearly, the collection and accessibility of health data in the province are in dire need of reform. Fortunately, it appears the health minister agrees since one of the first orders of business in his most recent reform plan is to finally address the obvious technological issues in the health system. He need not look very far to find examples of best practices when it comes to the collection of health data and the sharing of data for research purposes, as there are a few promising examples right here in Canada.
Alberta has developed a world-renowned electronic health record system called Netcare, which acts as a portal that retrieves all of the available clinical information from the various provincial systems and presents it as a unified patient record. Alberta’s system has been emulated as far away as Abu Dhabi, which introduced a similar system in 2019.
Once there is such a unified and interoperable electronic health record, information can more easily be utilized for research purposes. In Ontario, ICES (formerly known as the Institute for Clinical Evaluative Sciences) has been collaborating with data custodians, government, policy-makers, and health system stakeholders to analyze anonymous administrative health data since 1992.
The information held by ICES is gathered during visits to doctor’s offices, emergency departments, and hospitalizations, and can include drug prescriptions. By sharing this health data, multiple aspects pertaining to health care in Ontario can be studied, including specific health conditions, the outcomes of medical procedures, or measures of health system performance. This model of safely sharing anonymized health data for research purposes with both public and private institutions is one Quebec can learn from.
Quebec has a long way to go to modernize and standardize information in its health-care system. First, health data must be systematically, carefully, and accurately collected. The cataloging and storing of handwritten information must also become a thing of the past. Next, the electronic systems used to gather health information must communicate. Finally, the safe and secure sharing of anonymized health data must be made possible for research purposes.
Quebec desperately needs to implement a modern and robust digital health ecosystem. Doing so will both maximize patient health today and encourage innovation for even better care tomorrow.
Maria Lily Shaw is an Economist at the MEI and Krystle Wittevrongel is a Public Policy Analyst at the MEI. They are the authors of “Improving Access to Health Data in Quebec” and the views reflected in this opinion piece are their own.