Ms. Christine Sham
Director, IM Strategy and Policy Branch
Ministry of Health
Health System Information Management
1075 Bay Street, 13th Floor
Toronto ON M5S 2B1
Via email: firstname.lastname@example.org
Re: Proposed amendments to Ontario Regulation 329/04 made under the Personal Health Information Protection Act
The Ontario Human Rights Commission (OHRC) is responding to the notice of proposed amendments to Ontario Regulation 329/04 made under the Personal Health Information Protection Act (PHIPA). Among other things, the proposed amendments prescribe elements for collecting, using and reporting personal health information collected through the electronic health record.
Consistent with its recent public statements, the OHRC recommends the government considers making sure that current and/or proposed amendments to Regulation 329/04 do not bar collecting, using and disclosing information on vulnerable populations identified by grounds under Ontario’s Human Rights Code, collected through the electronic health record, for the purposes set out under PHIPA including section 44 on disclosure for research and section 45 on disclosure for planning and management of the health system.
On April 2, 2020, the OHRC released a policy statement and identified actions consistent with a human rights-based approach to managing the COVID-19 pandemic. Among other things, the OHRC highlighted the need for government to collect health and other human rights data on the response to the pandemic, disaggregated by the grounds of Indigenous ancestry, race, ethnic origin, place of origin, citizenship status, age, disability, sexual orientation, gender identity, social condition, etc.
As the Ontario Federation of Indigenous Friendship Centres expressed in a recent letter to the special advisor on the new Ontario Health Data Platform, it is essential that Indigenous health data in particular be included in socio-demographic data collection for COVID-19.
Health and human rights experts agree that Ontario needs demographic data to effectively fight COVID-19. Strong data allows health-care leaders to identify populations at heightened risk of infection or transmission, to efficiently deploy scarce health resources, and to ensure all Ontarians have equal access to public health protections.
The OHRC urges the collection of socio-demographic human rights data through the public health information system as soon as possible, including potentially through the electronic patient record. In its April 30 public statement, the OHRC also recognized the need for a longer-term solution to collect human rights information through the OHIP registration form.
cc: Hon. Christine Elliot, Minister of Health
Hon. Merrilee Fullerton, Minister of Long-Term Care
Dr. David Williams, Chief Medical Officer of Health
Matthew Anderson, President and CEO, Ontario Health
Dr. Jane Philpott, Special Advisor, Ministry of Health
Sylvia Maracle, Executive Director, OFIFC
Hon. Doug Downey, Attorney General
Violetta Igneski, OHRC Commissioner
Randall Arsenault, OHRC Commissioner
Dr. Jewel Amoah, OHRC Commissioner