CPHIN is working with experts in privacy and security to ensure patient data is secure and privacy is protected. At the same time, CPHIN will also de-identify and aggregate data to protect the individual patient’s data. This plan will ensure that health data is striking the right balance: not too guarded so as to prevent information transfer, and not too open so as to jeopardize the patient’s privacy. 

CPHIN understands that the best way to achieve this balance is by building a data trust. Data trusts involve data subjects pooling their information together with conditions for data to be accessed and controlled. Patients whose data has been de-identified will be included in the data trust. Data trusts allow data to be responsibly shared and used for medical research and product commercialization. 

A first in Canadian healthcare, all stakeholders must be brought together to successfully construct a durable data trust framework that ensures legal compliance. 

Ensuring patient privacy and control is at the heart of this data trust’s design. CPHIN has enlisted international experts on privacy to help ensure this important issue is properly addressed. CPHIN’s privacy experts are:

• Dr. Ann Cavoukian, recognized as one of the world’s leading privacy experts and Distinguished Expert-in-Residence leading Ryerson University’s Privacy by Design Centre of Excellence

• Dr. Khaled El Emam, founder of Privacy Analytics Inc., Professor in the Faculty of Medicine, University of Ottawa, as well as senior experts on the Privacy Analytics team

• Carole Piovesan, Co-Founder and Partner at INQ Data Law and appointed ISED Innovation Expert