Over the course of their appointments in the health system and in daily life, users generate all sorts of health-related information, including medical records and number of steps. Gathered by clinics, exercise bracelets and even biobanks, these data are invaluable. They also facilitate the work of health care professionals (e.g., through decision-support apps) and fuel medical research projects when the required authorizations are obtained.
But the information is scattered in all directions by separate computer systems, and that takes a toll on the delivery of effective patient care. Dr Jean-François Éthier, professor in the Faculty of Medicine and Health Sciences at Université de Sherbrooke, is working to place the patient back at the core of the data through the learning health systems approach. The aim is to ensure patients receive the right care from the right people at the right time and in the right place by better understanding the patient through his data and without blind spots.
Dr. Éthier, who is also the co-director of the Interdisciplinary Research Group in Health Informatics (GRIIS), has co-directed the development of the Learning Platform in Health Research and Social Services (PARS3)—a virtual infrastructure that pools primary care data and which is rooted in scientific literature reviews, citizen surveys and discussion groups with users. At the end, technology is not enough, citizens must be well informed about the use of their data and participate in the decisions around it.
This decentralized and certified open source solution provides access to health data where they are found, in compliance with legal frameworks and ethical standards. It facilitates the flow of varied information and breaks down health silos to benefit patients, who receive better care. PARS3 will be considered as part of the Dossier santé numérique digital health record project initiated by the Ministère de la Santé et des Services sociaux.