OHRC: Letter to the special advisor of the Ontario Health Data Platform about data collection

Dr. Jane Philpott
Special Advisor
Ministry of Health
College Park
5th Flr. 777 Bay St.
Toronto, ON M7A 2J3

Dear Dr. Philpott:

RE: COVID-19 data collection

On behalf of the Ontario Human Rights Commission (OHRC), we congratulate you on your appointment as special advisor of the Ontario Health Data Platform and chair of the Joint Ministers’ Roundtable. We look forward to working with you in your new capacity.

We also wanted you to be aware that the OHRC has written letters to the Minister of Health on April 9, 2020, and to Ontario Health on June 4, 2020, raising specific concerns about data collection.

In these letters, the OHRC highlighted the need for government to collect health and other human rights-based data on the response to the COVID-19 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.

While we are pleased to see the announcement on June 15, 2020, that Ontario is expanding data collection to include race, income, language and household size for individuals who have tested positive for COVID-19, in our view, these categories do not go far enough. We reiterate the importance of meaningful consultation on data collection and involving Code-protected and other vulnerable groups who are at heightened risk.

Similar to what we called for in the above-mentioned letters to the Minister of Health and Ontario Health, the OHRC urges the Ontario Health Data Platform to:

  1. Consult with human rights experts, representatives of racialized, Indigenous and vulnerable groups, and persons and communities affected by COVID-19, when developing protocols, making recommendations or decisions and taking action on managing the COVID-19 pandemic data collection
  1. Take immediate steps to clearly outline the nature and scope of the proposed collection of disaggregated socio-demographic data
  1. Provide specific information on who Ontario/Ontario Health is consulting on the collection of disaggregated socio-demographic data, including, but not limited to Indigenous, Black, racialized and other vulnerable groups
  1. Release a detailed and comprehensive data collection plan that includes collection mechanisms and timelines for the pandemic
  1. Provide specific information on how Ontario/Ontario Health will report publicly on the data collected during the pandemic
  1. Publicly commit to collecting disaggregated socio-demographic data in the health sector in a sustainable manner beyond the pandemic. This would be responsive to longstanding OHRC and stakeholder recommendations.

We also refer you to a recent letter from the Ontario Federation of Indigenous Friendship Centres (OFIFC) and reiterate that we agree that the need for appropriate disaggregation is an important element of race-based data collection, particularly relating to Indigenous peoples.

The OHRC appreciates the ever-evolving circumstances surrounding COVID-19, and understands that the government is working to address issues on many fronts. However, is it crucial that vulnerable people’s circumstances are systematically accounted for and properly addressed while accessing health services during the pandemic.

The OHRC is available to provide advice and support to ensure that the Ontario Health Data Platform is applying a human rights-based approach and taking these actions as soon as possible, to help limit the spread of the virus while continuing to meet Ontario’s human rights obligations.

Sincerely,

Raj Dhir
Executive Director

NT5

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