Privacy FAQs
- Can I access my personal health information in BORN?
- How does BORN Ontario protect personal health information?
- What kinds of information does BORN collect?
- Why does BORN collect personal health information?
- Who can use the personal health information collected by BORN Ontario?
- How does BORN support external research?
- Who can I contact if I have questions, complaints or concerns about BORN privacy practices?
Can I access my personal health information in BORN?
PHIPA does not require BORN to provide individuals with access to records of their own personal health information. However, as a privacy best practice, when BORN receives written requests for access, subject to confirmation of identity, BORN will inform individuals of the existence of his or her personal health information in the Registry, such as:
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Whether or not it holds personal health information about the individual
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The source of the personal health information.
BORN will then refer the individual to the health care providers who submitted the information to the Registry, in order that the individual obtains the best possible information about their health.
If individuals request changes or corrections to their personal health information, they will be referred to the organization providing the information to the Registry where issues of accuracy and completeness can be addressed, and that organization can request modifications to the record as necessary.
How does BORN Ontario protect personal health information?
BORN’s special Registry status under PHIPA comes with certain obligations that BORN takes very seriously. To ensure personal health information is protected, BORN has put in place strong privacy protections for all the personal health information it receives.
Personal health information within BORN is protected by administrative, physical and technological controls that conform to industry best practices for security and safeguards against unauthorized accidental or intentional release of information.
Examples of these protections include:
- All staff complete mandatory privacy training and annually sign a confidentiality agreement;
- Staff access to data is limited by specific authorization on a need-to-know basis
- Facilities have controlled access and secure areas for computer storage;
- All data access is tracked
- Systems employ firewalls, passwords, and encryption to ensure electronic information is secure
The BORN information practices and procedures are approved by the Ontario Information and Privacy Commissioner every three years. BORN also conducts audits and investigations to monitor and manage our privacy compliance.
What kinds of information does BORN collect?
The information BORN collects includes, for example:
- Information about hospital births in the province, including interventions and outcomes in labour and birth
- Results and follow-up from prenatal screening provided to pregnant women for Down Syndrome, Trisomy 18 and Neural Tube Defects
- Information about services provided to women whose babies have suspected or confirmed birth defects
- Information about pregnancies and births attended by midwives
- Newborn screening test results indicating whether a baby might be at risk a rare but treatable disease
Why does BORN collect personal health information?
BORN collects personal health information to facilitate or improve the provision of health care and conduct research. More specifically, BORN uses the information for purposes of:
- Supporting evidence-based decisions in maternal and infant care;
- Monitoring maternal and perinatal system performance, including analyzing and identifying gaps in the delivery of maternal or perinatal services;
- Facilitating access to specialized care and treatment for women who have screened positive during their pregnancy for congenital anomalies and metabolic disorders.
- Ensuring screening for these anomalies and metabolic disorders are offered to all women and babies.
- Providing advice to LHINs, hospitals, health care providers and the Ministry of Health and Long-Term Care on effective management and planning.
Who can use the personal health information collected by BORN Ontario?
- BORN staff who are trained in privacy, have a need to use personal health information in their specific role and have signed confidentiality agreements are authorized by BORN to access and use personal health information to carry out required BORN functions.
- Hospitals and other health care organizations that provide information to BORN can, where specifically authorized by BORN and the organization, access and use only the personal health information that organization provided to BORN.
- Researchers who have a research plan in place, obtained research ethics board approval and signed agreements with BORN, in compliance with the strict requirements of PHIPA, can obtain BORN information for specific research purposes.
How does BORN support external research?
BORN is committed to supporting research that improves the quality, access, and integration of services for mothers infants and children in Ontario. BORN considers applications from researchers that require BORN information to conduct research. BORN undertakes a rigorous process of review for all requests from researchers, including ensuring that only the minimum amount of personal health information is provided.
Where possible, BORN approves the use of de-identified or aggregate information for the research. If personal health information is required, the researchers must have research ethics board approval and have complied with the requirements set out in PHIPA.
Who can I contact if I have questions, complaints or concerns about BORN privacy practices?
Any questions or concerns about BORN privacy practices, policies or procedures should be addressed to the BORN Privacy Officer by telephone, email or in person. Click here to download the BORN Ontario complaint form to document your concerns.
BORN Ontario Privacy Officer
1785 Alta Vista Drive
Ottawa Ontario, Canada K1G 3Y6
613-523-3781
