The consequences of the lack of access to information for the health of the population during a pandemic
A presentation of the effects and potential issues associated with Bill 64 on research in Quebec will be followed by a round table with patients, researchers and decision-makers discussing the consequences of the lack of access to information for the health of the population.
Context of the activity
Due to the necessity of rapid and numerous decisions while several scientific uncertainties remain, the current context of COVID-19 highlights the harmful consequences of the difficulty of accessing relevant data in real time, and therefore the importance of timely access to data for researchers and various organizations concerned with the health of the population. Although health-related data exist in Quebec and are considered to be among the most complete in the world, their compartmentalization in the various silos of government agencies complicates access, their use, their analysis and their cross-referencing and leads to delays which are incompatible with informed decision making. The current crisis leads us to reflect on the following questions: What are the consequences on the health of patients and the population in this situation? Could rapid, simplified and decompartmentalized access to data from organizations and ministries have helped us to understand the impacts more broadly, to follow the evolution of the situation more quickly and to act accordingly, while respecting the confidentiality of personal information?
Can society afford to do without the compelling benefits of timely access to data to support empirically informed decisions while theoretically avoiding any breach of confidentiality and information security? It should be recalled here that breaches of confidentiality exist in the economic and administrative sectors, but have not been observed in the field of research in Quebec.
In June 2020, the Coalition Avenir Québec (CAQ) presented Bill 64, which deals with the modernization of legislative provisions on the protection of personal information, thereby integrating aspects intended for research as well as citizen access. It is not by further limiting access to decision-makers and researchers that Quebec can protect itself against malicious use of data. The valorization of existing data requires a real partnership between patients, data providers, data managers, data protection organizations, researchers and decision-makers.
Presentation of the event
Part 1, from 12:00 to 12:30 p.m.
Presentation of the potential effects and issues in connection with Bill 64 on research in Quebec, with lawyers Aya Barbach and William Deneault-Rouillard from the Fasken law firm.
Part 2, from 12:30 to 1:30 p.m.
Patients, researchers and decision-makers discuss the consequences of the lack of access to information for the health of the population in a round table discussion involving Alain Vanasse, Scientific Director of the Quebec SRAP Support Unit, Alexandre Grégoire, patient coordinator at the Center of Excellence on the Partnership with Patients and the Public, Philippe Després, Co-head of the Sustainable Health axis, OBVIA, Richard Lessard, Interim Director of Public Health of the CISSS de Lanaudière and Associate Clinic Professor of the School of Public Health of Université de Montréal (ESPUM) and Roxane Borgès Da Silva, Associate Professor of ESPUM and researcher and head of the Healthcare and Public Health Systems axis of the CRESP.
For more information on the event
A presentation of the Association pour la santé publique du Québec (ASPQ, Quebec Public Health Association), the Quebec SRAP Support Unit, the International Observatory on the Societal Impacts of AI and Digital Technology (OBVIA) and the FASKEN law firm.
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