Colloque: Towards a Reform of Access to Health Information for Research Purposes in Quebec: Preliminary Reactions to Bill 19
On December 3, 2021, the Quebec Minister of Health and Social Services tabled Bill 19, An Act respecting health and social services information and amending various legislative provisions. This bill intends to establish a specific legal regime for health information that would facilitate and accelerate access to this information for research purposes, while ensuring a high level of privacy protection for the patients who are the source of this information. The objective of this conference is twofold. First, to present Bill 19 to the scientific community and explain the main mechanisms that the bill would put in place to facilitate access to health information. Second, it is to seek input from researchers and clinicians whose practice will be affected by the bill, as well as from patients whose information may be used for research purposes.
Preliminary Program
12:30 p.m.: Introductory Remarks
Carole Jabet, Scientific Director, Fonds de recherche du Québec – Santé (FRQS)
12:40 p.m. to 2:10 p.m.
Panel 1 – Presentation of Bill 19
Moderator: Catherine Régis, Professor, Faculty of Law, University of Montreal and co-leader of the H-pod
Interventions:
- Overview of Bill 19
Pier Tremblay, Director of Data Governance, Ministère de la Santé et des Services sociaux
Me Olivia Tremblay-Toussaint, Legal Strategy Advisor, Ministère de la Santé et des services sociaux - Privacy issues raised by PL19
Pierre-Luc Déziel, Professor, Faculty of Law, Université Laval and co-head researcher of OBVIA’s Law, Cyberjustice and Cybersecurity axis - Consent models in PL19
Jean-Frédéric Ménard, Professor, Faculty of Law, Université Sherbrooke
2:10 p.m.: Pause
2:15-3:00 p.m.
Panel 2 – The perspective of researchers
Moderator: Lyse Langlois, General Director, OBVIA
Panelists:
- Anick Bérard, Full Professor, Faculté de pharmacie, Université de Montréal
- Philippe Després, medical physicist, Department of Radiation Oncology, CHU de Québec – Université Laval and co-head researcher of OBVIA’s Sustainable Health axis
- Jean-Francois Éthier, Professor, Service de médecine interne, Université de Sherbrooke, CIUSSS de l’Estrie – CHUS
- Dr Antoine Groulx, Scientific Director, SSA Quebec Support Unit and professor in the Faculty of Medicine, Université Laval
- Alexandre Le Bouthillier, Ph.D., Co-founder of Imagia
3:15-4:15 p.m.
Panel 3 – The perspective of patients
Moderator: Vincent Dumez, co-director of the Centre of Excellence on Patient and Public Partnership (CEPPP) at the University of Montreal
Panelists:
- Cédric Baudinet, Project Manager, Investments and Health Promotion, Fondation cancer du sein du Québec
- Sylvain Bédard, patient-partner
- René Lortie, patient-partner
- Guy Poulin, patient-partner
- Eva Villalba, Excutive Director, Coalition Priorité Cancer au Québec
- Raymond Vles, President, CCL Canada
4:15 – 4:30 pm: Conclusion and Closing Remarks
Cécile Petitgand, Data Access Advisor, Fonds de recherche du Québec – Santé (FRQS)
Partners
- Health Hub – Policy, Organizations, and Law (H-pod)
- Institute Intelligence and Data (IID), Université Laval
CONTINUING EDUCATION – CERTIFICATE OF ATTENDANCE
Participants who wish to obtain a certificate of attendance of this event can indicate it in the registration form. It will be sent by e-mail by the OBVIA in the days following the event. Each participant is then responsible for taking the necessary steps to have their attendance recognized as a continuing education activity by their educational institution, their employer or their professional order.
This event will be held in French only.
OBVIA member researchers participating in the event:
