Exploiting big data in health care and promoting precision medicine are two of Quebec’s priorities. The 100 participants who met virtually in the fall for the Bases de données clinico-administratives des établissements de santé (healthcare facilities’ clinical-administrative databases) project were certainly on track in this regard.
Research directors, scientists, managers and policymakers from the Ministère de la Santé et des Services sociaux, the Ministère de l’Économie et de l’Innovation and the Fonds de recherche du Québec worked together during this second phase of the project around a common vision: increasing research capacity and generating new knowledge by organizing and facilitating the querying and analysis of health data.
Originating from the Table nationale des directeurs de recherche, this project is co-led by CRCHUM director Vincent Poitout and FRQS scientific director Carole Jabet. Presentations during the two half-day sessions provided participants with information concerning the project’s progress.
On September 18th, the topic of organizing clinical-administrative and research data was covered through a presentation concerning health data exploitation strategies (Renald Lemieux, CIUSSS de l’Estrie-CHUS, Vincent Ferretti, CHUSJ, David Buckeridge, CUSM and Alexis Turgeon and Philippe Lachappelle, CHU de Québec – Université Laval), a concrete decentralized data analysis project (Michael Chassé and Louis-Antoine Mullie, CHUM) and an example of an application in a clinical genomics project (Brent Richards, McGill).
Aligning clinical-administrative data and genomics data to improve disease management was the special theme for November 26th: initiatives in genomics (Vincent Mooser, McGill, Marie-Pierre Dubé, MHI, Jacques Michaud, CHUSJ, Guillaume Bourque, McGill) and in governance for the alignment of these data (Alexandra Obadia, CARTaGENE). A discussion panel revealed promising avenues for maximizing the use of health data in disease management and precision medicine.
Three working subgroups are currently active. The first is looking into the structuring of data warehouses/lakes and offers support to healthcare facilities wanting to implement data access infrastructures.
The second is focusing on inter-institutional projects and is documenting the technological feasibility of working in a distributed way with several data warehouses/lakes, without having to move the data itself.
Lastly, the Governance and Management Framework subgroup drafted a guide entitled Principes directeurs pour assurer le fonctionnement et la gestion optimale d’un centre d’accès aux données de santé (General guidelines to ensure the optimal operation and management of a health data access centre).
This document provides a list of general guidelines that should provide guidance for the development and operationalization of organizational frameworks for access to healthcare facilities’ clinical-administrative data for research purposes.