Supporting Better Health Outcomes for Black Birthing People, Infants, and Families

BORN Ontario holds one of the most comprehensive sources of maternal, perinatal, and early childhood health data in the province. Nearly every pregnancy and birth in Ontario is reflected in its registry. This position creates both a significant opportunity and a responsibility to ensure that data practices contribute to equity rather than harm. 

BORN’s role extends beyond data collection. It includes stewardship over how data are defined, collected, interpreted, shared, and acted upon across clinical, programmatic, and policy contexts. Within this framework, BORN commits to:

• Identifying and illuminating structural barriers within care structures that contribute to inequitable experiences and outcomes for Black families;
• Implementing safeguards to prevent misinterpretation, misuse, or stigmatizing application of race-based data;
• Supporting improvements in clinical practice, programs, and policies. 

Through its partnership with Provincial Screening Ontario (PSO), BORN also plays a role in shaping prenatal screening programs across the province. This includes co‑developing screening tools, site scripts, referral and follow-up processes, benchmarks, and communication strategies that are responsive to the needs and realities of Black communities. Equity considerations are embedded into quality assurance processes, performance indicators, and feedback mechanisms so that screening programs support equitable access and outcomes.

BORN Ontario operates as a prescribed registry under the Personal Health Information Protection Act (PHIPA), with oversight by the Information and Privacy Commissioner of Ontario. These legislative requirements define how personal health information may be collected, used, and shared and reinforce the importance of data minimization, appropriate safeguards, and transparency.

The framework aims to advance Black health equity and address anti-black racism by embedding BORN’s work with culturally safe, anti-racist practices in the governances, collection and sharing of sociodemographic and social determinants of health data, supporting organizational systems and ingraining a better understanding of Black populations.

This framework provides a clear, ethical, and community-informed approach for how BORN collects, analyzes, interprets, shares, and uses race-based and equity-relevant data, with specific attention to Black maternal, perinatal, and infant health. It aims to ensure that data practices: 

• Contribute to equity rather than harm;

• Build trust and shared stewardship with Black communities; and

• Support meaningful improvements in care experiences and outcomes for Black birthing people and their families.

This framework is grounded in the Engagement, Governance, Access, and Protection (EGAP) principles developed by the Black Health Equity Working Group*. EGAP provides an evidence‑informed governance model rooted in data sovereignty, community leadership, and protection from harm:

• Engagement: Genuine, cyclical, accessible, consultation with communities regarding data collection, management, analysis, and use.
• Governance: Community decision‑making about engagement processes and data collection, management, analysis and use, achieved through the establishment of Community Governance Tables.
• Access: The right of communities to access their collective data and to determine who else can access it, along with the capacity building required to enable this right.
• Protection: The safeguarding of all individual rights and types of data, including identifiable, de‑identified, and anonymized data.
  
  

BORN Ontario’s Black Health Equity Framework is organized around four interconnected pillars that span the full data journey:

1. Protect – With Community
2. Learn – With Context
3. Reconnect – With Care
4. Act – With Purpose
   
   

The pillars function as a continuous equity cycle. Protective data practices enable: meaningful learning; learning informs transparent and respectful reconnection; reconnection grounds purposeful action; and, action reshapes how data are collected, interpreted, shared, and used over time. Together, they embed ethical stewardship, shared accountability, and community partnership across all aspects of BORN Ontario’s work.

• raise awareness and share information about how to prevent, spot, and treat health problems during pregnancy.  
• support care providers in helping Black pregnant people make informed choices and have control over their care⁶. 
• implement and normalize race-based data collection* to better track and respond to inequities.