collage of photos: smiling woman wearing hijab; smiling woman holding small child; man in wheelchair taking a photo of another man; two men smiling at a baby     

BORN’s role is to improve outcomes and facilitate care for Ontario’s pregnant and birthing individuals and their families. This includes marginalized, racialized, and vulnerable communities. We know that sociodemographic factors have an impact on health – this has been well researched (see references below).

The COVID-19 pandemic shone a light on this and highlighted the lack of robust Canadian data that could be used to assess impact and improve care. Pregnancy and birth is where population health begins, and where BORN can have an incredible impact.

A health equity approach recognizes that health is not distributed equally. Making positive change and addressing systemic health inequities starts with data. We are focused on ensuring that this data is collected, analyzed, stored and interpreted safely to ensure that marginalized and racialized communities are not further stigmatized or harmed.

In alignment with ON Health’s Equity, Diversity, and Anti-Racism Framework, BORN has invested in forming an external committee to advise BORN on how we could play a role in enabling the safe collection, storage, and use of sociodemographic data, including race, to improve outcomes and facilitate care for marginalized communities across Ontario. We have begun the work to build our internal foundation with cultural humility and safety. We are collaborating with subject matter experts and partners in this space to ensure we are aligned and following best practices for this critically important work.

Work 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.

References

  Health Equity Advisory Group

April 2022 Meeting Update

The External Health Equity Advisory Group (HEAG) met in April 2022 to review the personas, that were developed from the previous meeting, regarding social determinants of health data collection challenges from multiple viewpoints, including the patient, health-care provider, and researcher. One challenge discussed was around training/education gaps and the need for researchers/clinical staff to have reputable training to reduce the risk of stigmatization and harm. Another challenge highlighted was gaps in community governance and mechanisms to engage with community members. This is key when it comes to research requests and how it will be used to advance the needs of the community that it seeks to gather this information from. There was also discussion around capturing self-reported data, as BORN obtains information collected from health information custodians, for the purpose of facilitating or improving the provision of care.

The next part of the meeting involved an environmental scan of some of the social determinants of health data elements collected by other Canadian organizations (e.g., CIHI data standards, Stats Canada, City of Toronto Data for Equity Initiative, Toronto Public Health (COVID-19 Data Collection). The External HEAG table discussed the advantages and limitations to this data.

The main purpose of these conversations is to help guide the Internal Health Equity Advisory Group on developing internal policies when considering our current and future organizational practices over the summer of 2022.

The next External HEAG meeting will take place in Fall of 2022.

February 2022 Meeting Update

The External Health Equity Advisory Group (HEAG) met in February 2022 to discuss social determinants of health data (e.g., race-based data, language, ethnicity, immigration status, disability, sexual orientation, gender, and others). BORN presented the current social determinants of health data elements that are used in the BORN Information System (BIS). The External HEAG table discussed advantages and limitations to this data.

The main conversation was on the importance of data collection while also ensuring safeguards are in place to ensure that data collected in the BIS is used to provide safe care to patients across Ontario. The expertise and lived experience of the External HEAG members are at the root of these recommendations and will guide BORN on best practices for social determinants of health data collection moving forward.

External HEAG members discussed social determinants of health data collection challenges from multiple viewpoints, including the patient, health-care provider and researcher. Some of the challenges discussed were a lack of standard procedures when collecting social determinants of health data from different health-care organizations. We also highlighted the importance of the HEAG group liaising with community health centres and public health organizations to help review outcomes, to prevent stigmatization and harm, and ensure data is being used effectively and safely for equity-seeking groups.

The next External HEAG meeting will take place in April 2022.

November 2021 Meeting Update

In November 2021, we launched our inaugural External Health Equity Advisory Group (HEAG) meeting where participants met to discuss their backgrounds and what drove them to apply to be a part of the External HEAG.

The External HEAG is made up of 23 participants with very diverse experiences and perspectives; the group consists of individuals with expertise in midwifery, prenatal screening, Indigenous health, and research. We also have members from the Maternal Newborn Outcomes Committee as well as ex-officio members from various partner agencies (e.g., Canadian Institute for Health Information, Provincial Council for Maternal and Child Health, and Ontario Health).

It was important in the selection process to seek out expertise from those who have lived experience and belong to equity-seeking groups. This group will provide guidance, recommendations, and support to BORN with a lens on equity and help us to improve and facilitate care for all Ontarians.  

The next meeting (February 2022) will consist of approving our terms of reference and collecting feedback from External HEAG members on how we can improve social determinants of health data collection at BORN. Check back here for future updates on how this group is progressing.

Group Members
Members are from equity-seeking groups with lived experience. Equity-seeking groups are communities that face significant collective challenges participating in society. This marginalization can be created by attitudinal, historic, social, institutional, and environmental barriers based on age, ethnicity, disability, economic status, gender, nationality, race, religion, sexual orientation, transgender status, etc.

 

The Health Equity Advisory Group (HEAG) is critical table that will provide guidance and recommendations to BORN with a lens on equity.

Objectives

The HEAG has the following two objectives:

  • Review the collection of race-based data and other social determinants of health data in the BORN Information System (BIS) and provide guidance on appropriate collection, use, storage and governance of race-based data and other social determinants of health data to facilitate and improve care.
  • Provide recommendations to leadership on how BORN can align or implement equity-guiding and anti-racism principles to all work and operations.

Time Commitment 
HEAG members meet a minimum of three times a year via teleconference, with potential for additional meetings called ad-hoc by the chair.  Initial appointments for members of the HEAG were made for a one-year term, with potential for renewal to a maximum of three terms.

Terms of Reference
To learn more, please see the HEAG Terms of Reference

Contact Us
If you have questions about HEAG or this application process, please email Alana Esty, Health Equity Advisory Group Chair at equity@bornontario.ca.