The commercialization of patient data in Canada: ethics, privacy and policy

摘要

In Canada, commercial data brokers are currently able to use deidentified patient data from pharmacies, private drug insurers, the federal government and medical clinics without patient consent. They are able to do this because of a lack of privacy protections for deidentified data. A proposed federal privacy bill, the Consumer Privacy Protection Act (Bill C-11) would have halted disclosure of deidentified data to commercial entities, although the bill left some important issues unresolved. However, the bill died when parliament was dissolved in August 2021. Updated legislation should be strengthened to protect patient data and support appropriate uses. We discuss how deidentified patient data are currently being used, potential harms of their use, views of patients and the public about the use of their deidentified data and how legislation can be strengthened to better protect people in Canada.