Integrating maternal-child data for all births in Ontario

On the campus of the Children’s Hospital of Eastern Ontario (CHEO), recent privacy software innovations have been united with a clinical database to create one of the most comprehensive, secure, and coveted mother-child registries in Canada. BORN (Better Outcomes Registry and Network) Ontario has joined forces with the Electronic Health Information Laboratory to protect personal privacy while guaranteeing the optimal data release. Now health care providers, public health professionals, governments and researchers are all eager to access the registry to inform their work in facilitating care, policy development, quality assurance initiatives and health services utilization research.

Headquartered within secure offices inside the Centre for Practice Changing Research with satellite offices in other Ontario locations, BORN integrates maternal-child data for all hospital and home births in the province (approximately 140,000 babies each year) as well as prenatal and newborn screening. Health research can provide vital information on disease trends, risk factors, outcomes of treatment, and patterns of care but the access relies on the handling and sharing of the sensitive personal information.

The risk of a breach of personal information is very real: recall a new mom and baby met at a park, forget names, discard unique health card numbers and erase knowledge of a home address. If, like a nosey neighbour, the baby’s date of birth can be obtained along with the mother’s age and her postal code, then 95 per cent of mothers and babies can potentially be identified in Canada’s most populous province, giving rise to the need for privacy software if the benefits of the data are to be realized.

“From the perspective of a researcher, I think it is BORN’s responsibility to educate people about our data – how it has to be kept secure, used and people’s privacy respected, and how we need to be careful about destruction. It’s part of our responsibility to educate the people using BORN data or requesting BORN data,” says Dr. Ann Sprague, BORN’s Scientific Manager.

The privacy software tool that protects and permits access to the most personal of data emerged from the work of  Dr. Khaled El Emam and the team at  the Electronic Health Information Laboratory (EHIL) at the Research Institute of the Children’s Hospital of Eastern Ontario. The EHIL team is composed of computer scientists, software engineers, mathematicians, statisticians and privacy experts and the lab’s work is internationally recognized for conducting research on risk assessment methods for handling health data.

BORN’s “prescribed registry” status was granted under Ontario’s privacy legislation and allows BORN to use and disclose personal health information for the purpose of facilitating or improving the provision of health care, and the information can also be used for secondary purposes, such as research. BORN’s leadership team is committed to meeting all industry best practices to protect against unauthorized accidental or intentional release of information.

“I like this tool because it’s an objective measure. It tells me what the risk is and I know that there’s a methodology and sound rationale to back it up,” says Dr. Sprague, acknowledging that word has spread through the various communities that this rich data set is accessible.

The risk assessments consider the security measures of data handlers and data recipients to set the appropriate release thresholds, dramatically changing the interactions between BORN and researchers. Dr. Sprague describes the process as far more collaborative while streamlining decision making.

Dr. Sprague and the other leaders of BORN Ontario are determined to take every possible step to maintain a registry that meets and exceeds all current and future security and privacy requirements, making it worthy as “one of the world’s safest and largest” maternal-child registries.

In 2011, a version of this privacy software was shared with the medical research communities in Canada and the U.S when Dr. El Emam released the free, online Wizards for Research Ethics Boards and Institutional Review Boards.

Located in many of the research hospitals and medical universities throughout North America, the boards are the oversight bodies entrusted with reviewing investigative medical research proposals and assessing and managing the risks associated with those proposals.

“Reducing the decision-making time for research ethics boards is critical,” adds Dr. El Emam, emphasizing that the time to approve research proposals can be reduced from months down to days — or even a few hours — when the software is implemented to ensure compliance with government standards.