Facilitating multi-site studies across Canada
The difficulty around navigating provincial privacy requirements for multi-site data driven studies across Canada is well documented.
The Pan Canadian Research Privacy Network was formed to support these efforts. This is the first network of its kind in Canada. Members of the network have expert knowledge in the privacy landscape of their province as it relates to REB-approved research and can speak to the privacy requirements within their region.
The intention of the network is not to modify provincial practices or centralize reviews, but instead to foster more efficient privacy reviews by becoming a key Canadian resource for multi-site studies. Monthly network meetings are chaired by the PHSA Research Privacy office.
We are pleased to announce that the VPR Committee of
HealthCareCAN endorses the Research Privacy Network and supports its efforts to facilitate efficient privacy reviews for Canadian multi-site research projects. We are also a sub-committee of the
Health Data Research Network (HDRN) Canada Privacy Working Group. So far, the network has assisted with a number of national projects including the HDRN Canada's linking consent text, the Terry Fox Research Institute's Marathon of Hope Project's consent materials, and more.
If you are planning to launch a multi-site data driven study across Canada, please contact PHSA's Research Privacy office (holly.longstaff@phsa.ca) for support.
Membership (Chair-Holly Longstaff, PHSA Research Privacy Director):
- Jacquelyn Legere, BN, CIPP/C HRPP-Director Research Services Horizon Health Network / Réseau de santé Horizon
- Stacey Page, PhD- Chair, Conjoint Health Research Ethics Board Associate Professor, Department of Community Health Sciences Cumming School of Medicine, University of Calgary
- Susan Marlin President and CEO, Clinical Trials Ontario Principal Investigator, CHEER Project
- Lisa J. LaBine B.A., MSc., Research Facilitator Department of Family Medicine Rady Faculty of Health Sciences, University of Manitoba
- Sharon Newman Ethics Director Health Research Ethics Authority 95 Bonaventure Avenue St. John’s, NL
- Madelaine Saginur Manager, Policy, Privacy Management Division Health Canada and the Public Health Agency of Canada
- Lindsay Green-Noble Program Lead, Informatics Governance Ontario Brain Institute/ Institut ontarien du cerveau
- Rashmi (Gogo) Pandya, PhD-Chair SHA Research Ethics Board, Saskatchewan Health Authority