A learning health system to better treat rare diseases

Sherbrooke, le 07 septembre 2021 – Understanding rare diseases to better diagnose and treat them is a particular challenge for medical teams due to the small number of people affected by multiple different syndromes. The solution to this challenge lies in learning health systems, an approach that combines medicine, computing and artificial intelligence that could revolutionize medicine and patient care. The Université de Sherbrooke (UdeS) will be part of this solution through the work of the Research Chair in Digital Health, which is funded by the Ministère de l’Économie et de l’Innovation (MEI).

This new “junior-senior” chair will be co-directed by Professor Anita Burgun, a French expert in biomedical informatics, who will hold a position at the Faculty of Medicine and Health Sciences (FMSS) at UdeS while retaining her duties at the Université de Paris, and a Christina Khnaisser, a young researcher in health informatics and a future professor at the FMSS and the Faculty of Science at UdeS.

These two chairholders will oversee this unique and ambitious research program based on a vast network of France-Quebec collaborations that include partnerships between pediatric hospitals and research centres.

“What we are trying to build is a system that can securely and ethically analyze the data that accumulates during the patient care trajectory. We will set up a network of databases that will cover all of Canada and that will also be transatlantic,” said chair co-holder Professor Anita Burgun. Against the backdrop of an interdisciplinary approach, this chair will combine Professor Burgun’s clinical vision with Ms. Khnaisser’s knowledge of computer science.

“Professor Burgun has a vision that is clearly geared toward medicine. She knows the needs on the ground, while I can develop robust IT solutions. By working together, we can apply these solutions to the field of health, and specifically to rare diseases” added chair co-holder Christina Khnaisser. This initiative will also help cement the existing Sherbrooke-Paris collaboration with the goal of establishing partnerships with the health sector, pharmaceutical industry, and research community.

Solving medical puzzles in a few clicks

Learning health systems will let medical teams securely analyze the clinical records, medical images and physiological information that is constantly collected throughout patients’ daily lives. Doctors can then compare medical profiles to speed up diagnostic decisions and optimize treatment without always having to meet at a specialized centre for follow-up. “We’re going to address issues of late diagnosis, which is still very common,” said Professor Burgun. “We also want to speed up access to medication for these patients.”

The two chairholders will use PARS3, a powerful digital platform resulting from a France-Quebec collaboration and developed at the UdeS by the Interdisciplinary Research Group in Health Informatics (GRIIS).

“PARS3 lets us use health data in situ so that we don’t have to move it to a shared location,” said Professor Khnaisser. This method addresses ethical and legal issues related to privacy, as moving massive amounts of personal information, especially between countries, is delicate. The chairholders and their team will also have access to the patient database at the CIUSSS de l’Estrie - CHUS and will work with many partners, including patient organizations. Using artificial intelligence tools, they will perform sophisticated analyses of large volumes of data, a task that would be daunting for a human.

Sharing expertise across the Atlantic

Although the MEI Research Chair in Digital Health is affiliated with UdeS, this work will be carried out under an ongoing collaboration with the Université de Paris. “To propel digital health forward, we need to work together. Canada and France share the same vision. This long-standing collaboration is very positive,” said Professor Anita Burgun, who believes that UdeS was an obvious choice to set up this vast network on rare diseases. “UdeS is the best in Canada when it comes to digital health,” she said. “Natural relationships may develop through other initiatives, such as the Canadian Institutes of Health Research (CIHR)’s Health Data Research Network Canada, which will also use the PARS3 platform as a technology backbone.”

For Professor Dominique Dorion, Dean of the FMSS, this project is coming at just the right time: “Over the past 30 years, health systems have accumulated incredible amounts of electronic medical data. We have lacked the technology to explore this sea of information. Artificial intelligence now gives us the tools we need, and this chair will teach us how to ‘fish’ in this sea responsibly.”

At the Faculty of Science, Dean Carole Beaulieu is pleased with the interdisciplinarity of this chair: “The collaborations between the Faculty of Science and the FMSS span multiple areas of health informatics, such as massive data processing, artificial intelligence, medical imaging and bioinformatics. The work of this new chair will let us further build our expertise in this field.”

Many positive impacts

This chair will promote knowledge sharing between universities. It will also lead to more joint training initiatives and will better prepare the next generation of digital health professionals while supporting women’s participation in this field.

Above all, it will allow Quebec, and specifically UdeS, to firmly position itself internationally in this sector. As explained by Professor Jean-Pierre Perreault, Vice-President, Research and Graduate Studies, “UdeS has a long tradition of expertise in health informatics and now aims to be the Quebec leader in developing learning health systems. This research chair will train many students who will go on to become experts in digital health.”

Pierre Fitzgibbon, Minister of Economy and Innovation and Minister Responsible for Regional Economic Development, stated that “this new research chair and its innovative program, which focuses on integrating artificial intelligence, knowledge transfer and improved patient care, will help Quebec make promising advances in the field of digital health.”

UdeS has every asset it needs to promote the development of learning health systems here and around the world. Today, the target is rare diseases; tomorrow, could it be pandemic-causing viral infections?

About Anita Burgun

Anita Burgun is a professor of biomedical informatics at the Université de Paris, France. She is also a physician and an internationally renowned researcher in digital health. Her work focuses on the reuse of computerized patient data with the development of high-throughput phenotyping methods and clinical decision support systems. She is Chair of Artificial Intelligence and Rare Diseases at the Institut Interdisciplinaire d’Intelligence Artificielle (3IA) in Paris and Director of the Research Group of Information Sciences for Personalized Medicine at the Centre de recherches des Cordeliers in Paris. Her current interests include the development of learning health systems for rare diseases with applications for diagnostic support and therapeutic decision making.

About Christina Khnaisser

Christina Khnaisser is a young emerging researcher, a postdoctoral fellow in health informatics, and a future professor at the Faculty of Science and FMSS at UdeS. A member of the Interdisciplinary Research Group in Health Informatics (GRIIS) since its inception, she did her master’s at UdeS and her doctorate as part of Professor Burgun’s team under a Cotutelle with the Université de Paris. Her doctoral research project in biomedical informatics earned her the 2019 France-Quebec Cotutelle thesis award offered jointly by the French Consulate in Quebec City and the Ministère des relations internationales et de la Francophonie. Her research focuses on developing methods for building ontological data models to manage data in learning health systems as this data evolves over time.

Artificial intelligence and quantum science

Developing artificial intelligence and quantum science holds tremendous economic potential for Quebec. However, competition in this field is fierce both in Canada and around the world. To position itself, the province must have a critical mass of researchers.

The Quebec government has therefore implemented a major strategy aimed at attracting the best talent in these fields. In 2019-2020, it invested $6.7 million in UdeS to build and develop space at the Institut Quantique, $4.5 million for the IBM-Q Hub, and $600,000 to create a research chair in quantum computing.

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Information:

Isabelle Huard, Media Relations Advisor
Communications Department | Université de Sherbrooke 
819-821-8000, ext. 63395 | medias@USherbrooke.ca