Nova Scotia is now collecting race-based and linguistic identity data in healthcare through the Fair Care Project. You can share information (opt in) when you apply for or renew your health card. You can also share information (opt in) online at any time. It’s your choice.

Race-based and linguistic identity data collection uses a standard for self-identification proposed by the Canadian Institute for Health Information.

Community advocates have expressed frustration at Government’s inability to identify and report on the inequities in the healthcare system through data and evidence. Human rights commissions across Canada, including the NS Human Rights Commission, have been calling for the collection of race-based data to help identify inequities. There have been long-standing requests from the Health Association of African Canadians (HAAC) for collection of race-based data within the health system. Identified as a foundational action in Count Us In to better serve health and wellness needs of African Nova Scotians.

Through the Fair Care Project, the Primary Reference Working Group was developed to inform government on promising practices with community. The engagement with community began with refining and qualifying the various race and linguistic categories from the CIHI standards. The work continued into the development of a Risk Matrix which specifically highlighted community concerns over researchers agendas behind accessing the data. The group also created new sections in the Department of Health and Wellness Data Request Forms highlighting the importance of benefiting the community who’s data is being requested, leveraging strengths from community, demanding partnership with community. Through these last two components, Nova Scotia is not only the first in the country to collect race and linguistic data using the health card renewal process and a web portal, but it is also the only jurisdiction which has a feedback loop with community ensuring transparency, accountability and reinvestment in any research conducted using the Fair Care data.

As a member of the Department of Health and Wellness, I led the drafting of both the new Department of Health and Wellness Research Request Forms and Risk Matrix. I was also the primary point of contact with the PRWG, meeting with them monthly and incorporating their feedback into the various components that govern the Fair Care project.

Launched: October 2022

The Primary Reference Working Group (PRWG) : A model for successful collaboration between community and government.

This 12-member group was comprised of key individuals representing some of the major equity groups in Nova Scotia, including alignment with census demographic data and representations.

The PRWG was the group that elevated the Fair Care NS project. It helped shape the buy-in, marketing and data governance.

The group met regularly, contributed insight and suggested ways forward in collaboration with government.