WHRI and the BC Perinatal Data Registry: Information Hub
The 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 BCPDR.
The BC Perinatal Data Registry (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
- Link BCPDR Data to neighborhood-level socioeconomic status (SES) data and deprivation indexes
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 Senior Research Manager 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.
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.
The WHRI is now able to link BCPDR data to neighborhood-level socioeconomic status (SES) data and deprivation indexes. Through the WHRI, researchers can now access publicly available relevant data, including deprivation indexes like residential instability or ethno-cultural composition. This publicly available data will be linked to the BCPDR by the WHRI Data Analyst and requesting researchers will receive a de-identified, linked dataset.
Linking the BC PDR Data with SES data
The neighbourhood-level SES data can be linked using 6 digits postal code available in the BC PDR data. In the request form available here, please indicate you intend to link the data by postal code with publicly available data Hospital Separations File (Discharge Abstracts Database). Please note that your ethics application must indicate that 6 digits postal code will be collected in order to enable the data linkage.
The BC PDR data analyst will link the BCPDR data to publicly available 2021 Canadian data using postal codes. The final PDR data will have all necessarily neighbourhood related information for further data linkage. In the data de-identification process, the postal code will be removed from the final analytical file. Neighbourhood-level information will be appended to the analytical file based on Census Subdivision aggregated data (Dictionary, Census of Population, 2021 – Census subdivision (CSD)) by the WHRI Senior Statistician or the researcher working on the data. Detailed instructions will be available for both linkage and usage of the neighbourhood indicators data.
Social-demographic variables and indicators available (neighbourhood level)
Example of variables and indicators that can be used in the analysis and available in the Canada 2021 publicly use dataset.
Size of locality – calculated based on the population size in each CSD (small 1,000-29,999, medium 30,000-99,999, large 100,000+)
Population density per square kilometer for each CSD
Urban and Rural and Remote areas Urban and rural areas – ‘Urban’ versus ‘rural’ variant – Definition of classes – 8.1 – Urban
Metropolitan Influenced Zone (MIZ) Dictionary, Census of Population, 2021 – Census metropolitan influenced zone (MIZ)
Age groups of the population (in incrementation 5 years). For example, you can calculate proportion of children under the age of 15 in the neighborhood.
Median Income (Median total income in 2020 among recipients\Median after-tax income in 2020 among recipients ($))
Education (No postsecondary certificate, diploma or degree\Postsecondary certificate, diploma or degree)
Indigenous ancestry for the population in private households – 25% sample data (Indigenous ancestry (only)\ Multiple Indigenous ancestries (only)\Indigenous and non-Indigenous ancestries\Multiple Indigenous and non-Indigenous ancestries\Non-Indigenous ancestry only)
Indicators created from the publicly available data
British Columbia Index of Multiple Deprivation (BCIMD)
Detailed information about those indexes can be found here (Index of Multiple Deprivation for Community Health Service Areas)
- Residential instability
- Economic dependency
- Ethno-cultural composition
- Situational vulnerability
Social and economic deprivation indexes
Methodology for the indexes can be found here (Material social deprivation index guide 2021).
If you need information about additional indicators, please contact our Senior Statistician Sabina Dobrer at Sabina.Dobrer@cw.bc.ca.
For any questions, further information or to apply, please contact the WHRI Senior Research Manager:
Kathryn Dewar, 604-875-2424 ext. 4909, KDewar@cw.bc.ca
