Updates on the BC Perinatal Data Registry

WHRI

The BCPDR contains maternal, fetal, and neonatal health information for an estimated 99% of all deliveries and births that occur in British Columbia. From the year 2000, the BCPDR has captured approximately 45,000 births per year, including data on maternal postpartum readmissions up to 42 days post-delivery and baby transfers and readmissions up to 28 days after birth. Access to unlinked person specific (record level) de-identified data from the BCPDR can be provided for addressing a specific set of research questions. Aggregate data without personal information that are expressed in summary form (i.e. total births, average age of mother at delivery, total cesarean sections, etc.) are also available to assist with research planning.

For several months leading up to September 2018, Executive Director of the WHRI, Dr. Lori Brotto, engaged in meetings with a larger group of stakeholders, including representatives from Perinatal Services BC (PSBC); Research and Privacy at PHSA; Population Data BC; and the scientific and trainee communities in order to explore ways of facilitating data access for researchers to better serve the public good, while ensuring confidentiality and privacy of the data. The result of that process was that the WHRI, in partnership with PSBC, will pilot a project to facilitate a streamlined process for data access requests to the PDR for research data requests received from WHRI members.

Two years later, the WHRI has provided data for 14 aggregate data requests, which help inform research planning. Our average turnaround time for this type of request is just 3 working days. We have also approved 7 projects requesting deidentified record level data for research purposes. Of these 7 requests, 3 have been submitted by trainees. Our average turnaround time for these requests is 6 working days, from receiving signed agreements from the researcher to sending the BCPDR data.

For any questions, further information or to apply for aggregate or research data, please see our website, or contact the WHRI Data Analyst:

Emma Branch, 604-875-2424 ext. 4796, emma.branch@cw.bc.ca

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