Use of personal health information for research purposes
Can my personal health information be used for COVID-related research purposes?
As long as certain conditions are met, the Personal Health Information Protection Act (PHIPA) allows the collection, use, or disclosure of personal health information without consent for research (which includes COVID-related research). These conditions reflect a balance between the public benefit that can result from research and the need to protect individual privacy.
Research is just one of the purposes for which PHIPA allows personal health information to be used or disclosed to improve the health care system and the public’s health outside the direct patient-provider relationship. These purposes are discussed in the IPC’s guide, Use and Disclosure of Personal Health Information for Broader Public Health Purposes.
Regarding COVID-19 in particular, from the early months of the pandemic, it became increasingly apparent that using personal health information for critical health care, research, and public health purposes, would play a crucial role in helping us understand and control the spread of the deadly coronavirus.
The province has developed the Ontario Health Data Platform (OHDP), which supports research and analysis about COVID-19 and its effects. The information in the OHDP has been gathered from a variety of datasets. In order to use the OHDP, researchers must apply for access.
Resources
- Blog: Using Health Data for the Public Good
- Guidance: Use and Disclosure of Personal Health Information for Public Health Purposes
- The Ontario Health Data Platform website
- Comments of the Information and Privacy Commissioner of Ontario on Proposed Regulation under PHIPA with respect to the Health Data Platform