Discussing about the access to health data – Québec’s Bill 19 and the future discussions

The Consortium Santé Numérique and the Université de Montréal have submitted a brief regarding Bill 19 which has been the object of discussion over the last months amongst the digital health community and with the representatives of the Government of Québec (health is a provincial jurisdiction in Canada). PL19 was presented as an Act in full respect of health information and social services but that would amend some of the legislative provisions. This Act represents a unique opportunity to modernize the framework and to set the course for access to health data in order to support the improving health of the population by mobilizing university researchers.

In the Consortium brief, the Consortium and the Université de Montréal did recognize the major evolution for access to health data that this bill could allow. The brief qualifies the advances in PL19 were underlined as necessary, but not necessarily sufficient, to support research based on secondary use of health data. The Consortium’s brief recommends equivalent access to all university researchers as well as the inclusion of modern and open science for the benefit of the community. The anticipated impact is to allow Quebec research teams to make a greater contribution with the respect of fundamental rights for the health of the population. 

PL19 died on the order paper because of the end of the legislature and the current provincial election planned this autumn.  It is expected and hoped that the discussion should be reinstated after the elections.

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The Consortium Santé Numérique strengthens research and training in digital health in the Université de Montréal ecosystem.