The Women’s Health Research Institute (WHRI) is pleased to announce the launch of a pilot project in partnership with Perinatal Services BC that will provide streamlined and efficient access to data within the BC Perinatal Data Registry (BCPDR).

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 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.

Over the last several months, 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 is that the WHRI, in partnership with PSBC, will be piloting a project to facilitate a streamlined process for data access requests to the PDR for  research data requests received from WHRI members.

The WHRI is now able to accept, review and approve data access requests for BCPDR data from WHRI members. We are able to offer co-ordination of the data access request process, including guidance, support, and advice to WHRI researchers who are preparing an application for BCPDR data.

All requests for data are in alignment with WHRI and PSBC’s commitment and vigilance towards the protection individuals in accordance with the requirements of the Freedom of Information and Protection of Privacy Act (FIPPA) of British Columbia and other applicable legislation, ethical considerations, and best practices as outlined in WHRI data access policies and guidelines. Please note that the WHRI reserves the right to decide the acceptability of data requests in its sole and absolute discretion.


Data Disclosure Policy

Please review the WHRI Data Disclosure Policy, which identifies the parameters required when WHRI releases and discloses data.

Peer review

We encourage all residents and trainees to obtain an internal peer review of their research protocol. At the discretion of WHRI, peer review may be required to approve the data access request.

Turnaround time

Every effort is made to process data requests in a timely manner. Turnaround time of data requests is dependent on the complexity and volume of data requests.

Data available

Here is a list of the fields available through the BCPDR facilitated by the WHRI.

Types of requests

Data application process is dependent on the type of data requested:

  • Aggregate Data Requests
  • Research Requests
Aggregate Requests

You are able to apply for aggregate data from the BCPDR facilitated by the WHRI if:

  • You are a WHRI member, or under the supervision of WHRI member.
  • You are requesting data for provincial or sub-provincial (e.g. Health Authority) summary data that do not include personal information or potential identifiers.
  • You have contacted the WHRI Data Analyst prior to submission of the Data Access Request.

Aggregate data are for the purposes of research planning only. Before submitting your request, please check the PSBC Indicators Index to see if the data you want are already published.

Research Requests

You are able to apply for data from the BCPDR facilitated by the WHRI for research purposes if:

  • You are a WHRI member, or under the supervision of WHRI member.
  • You require access to an unlinked set of data from the BCPDR. You cannot link BCPDR data with any other data.
  • Your project has been approved by a Research Ethics Board.
  • You have contacted the WHRI Data Analyst prior to submission of the Data Access Request.

 

For any questions, further information or to apply, please contact the WHRI Data Analyst:

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