BORN: Privacy & Confidentiality
Midwives and all other obstetrical care providers in Ontario enter client data into the Better Outcomes Registry Network (BORN). BORN is a prescribed registry under Ontario’s Personal Health Information Protection Act, which safeguards data while making information available to facilitate and improve the provision of healthcare. Midwives can use BORN data to track interventions or some outcomes, with either internal or provincial comparators.
BORN and other registries such as the Ontario Cancer Screening Registry do not require consent before data is entered because they fall under an exemption as an approved registry that accesses this information for the purpose of “facilitating or improving the provision of health care." Generally, PHIPA requires healthcare providers or organizations (i.e., health information custodians) to have an individual’s consent before disclosing that information (such as entering it in BORN). However, because BORN is a registry, consent is not required.
Nonetheless, BORN has strong responsibilities to protect client privacy. The Information and Privacy Commissioner (IPC) is directly responsible for reviewing registries such as BORN and monitoring client confidentiality.
Before approving BORN as a registry, the IPC reviewed BORN’s policies, procedures and agreements, including those on:
- the collection, use, de-identification, retention and destruction of personal health information;
- privacy audits, breaches and complaints;
- technological and physical security measures;
- training, confidentiality agreements, service-providers, discipline and termination of employees;
- risk management; and
- business continuity and disaster planning.
BORN describes its privacy protections, its complaints process and how concerns can be shared.
BORN enters into Data Sharing Agreements with all obstetrical care providers who enter data. HIROC has a risk note on the standard clauses in these agreements which may be useful for midwives.
Discussing BORN with Clients
Since the client’s consent is not required to enter their information into the BORN registry, midwives are not required to talk to their clients about BORN though some choose to do so. If discussing BORN with clients and anticipating that some clients might object, midwives may wish to review the many policies and procedures on the BORN website. For example, it may be useful to discuss what type of information is being collected, for what purposes, how privacy is protected, as well as who can access the information.
Midwives or clients with specific questions can direct them to BORN.