With Indigenous partners, BORN is developing an Indigenous engagement strategy to better inform and support the submission, use, and governance of Indigenous people’s data in a respectful, culturally safe, accessible way that ensures individual privacy and confidentiality and is responsive to the needs of individuals and communities. BORN recognizes that addressing inequity, improving outcomes and facilitating care for Indigenous people starts with data.

In this regard, BORN endeavors to consider the interests of Indigenous communities and organizations in exercising authority, control, and shared decision making in the collection, management, use and disclosure of information regarding Indigenous people and communities.  BORN recognizes that Indigenous data governance considerations vary between First Nations, Métis, and Inuit communities and organizations. BORN further recognizes there are common goals, including emphasis on the importance of engagement, transparency, and Indigenous ownership and control of information.  This includes how it is collected, used, managed, analyzed, interpreted, and reported publicly.

As such, BORN is concurrently developing an Indigenous data governance policy that aims to ensure that information collected from Indigenous communities is used to empower communities with knowledge and tools to work towards positive outcomes for mothers and babies. Data sharing agreements between BORN and Indigenous communities and their representatives and partners will be an effective way to respect Indigenous interests in data governance.  In all cases, such agreements will be undertaken in accordance with the requirements established by the Personal Health Information Protection Act, 2004 (PHIPA) and its regulation, together with the requirements established by the Information Privacy Commissioner that are applicable to BORN as a prescribed registry.