Data Requests

Data Requests

All requests made to BORN Ontario for data access will be managed in accordance with the privacy legislation (PHIPA). Requests will be considered for purposes of performance measurement, quality improvement, health policy work, and research. Prior to completing the request form, please email the BORN Ontario Data Request/Research Coordinator (Science@BORNOntario.ca) to discuss your project. We can advise on the differences between aggregate and record-level data requests and in the case of record level discuss timelines associated with data requests; risk of re-identification assessments and the Research Ethics Board requirements.

The application process varies depending on the type of information you are requesting.

Datasets

BORN Ontario has historical birth record data (fiscal 2006-2011) and then combined BORN maternal child data (fiscal 2012 onwards). When making a data request, you will need to specify which dataset you require. Please account for the differences described below when planning your study/project and submitting your data request. BORN can provide either aggregate or record level data:

  • The new combined maternal child data (screening, pregnancy, complex pregnancy, birth, NICU, newborn screening), began data collection on April 1, 2012. BORN will only be able to provide meaningful information from these data after the close of the 2012-13 fiscal year. The BORN data dictionary outlining these updated and new data elements is available in the encounters & alphabetical list menu.
  • For historical birth record data (formerly the Niday perinatal database) and the legacy Ontario Midwifery Program Maternal Newborn Reporting System, the data elements in the dictionary differ from above (see legacy datasets). New data elements and updated terminology were added in 2012 which are not available in this historical data. Also please note that it will not always be possible to link some of the older data elements and names to the new data dictionary.
  1. An Aggregated data request form should be used if you are requesting a custom report to be generated using aggregated, de-identified information to answer a specific question. The initial review of the data request will take 6-8 weeks to process. The turnaround time for the release of the data depends on the complexity of the request but can be estimated once the request is reviewed.
  2. A Record level data request should be used if you are requesting individual-level data for analysis and research purposes. This application process is a bit more complex than aggregate data requests and can require a number of months from start to finish as this involves submission of a research and analysis plan, a research ethics board approval, an iterative process of risk assessment of re-identification, and execution of confidentiality agreements and a data sharing/research agreement between BORN Ontario and your institution.
  3. In some cases, researchers need access to record level data to answer their research question but prefer that BORN conduct the analysis internally and provide results in aggregate tables. Please contact BORN for cost and further information Science@BORNOntario.ca.

BORN Ontario recently compared the number of hospital births captured in the BORN Information System (BIS) with those in the Canadian Institute for Health Information– Discharge Abstract Database (CIHI–DAD) for the time period 2005-2013. Table 1 below shows the number of hospital births recorded by the BIS, expressed as a percentage of the total number of hospital births captured in the CIHI–DAD over fiscal years.

Table 1: Ontario Total Live Hospital Birth Comparison (CIHI DAD vs BORN Ontario)

Ontario in-hospital live births ≥ 20 weeks' gestation to Ontario residents


Analysis Details                                                                                                                         

Niday                                                                                                                            

All live Ontario hospital births in the fiscal year, with gestational age ≥ 20 weeks' gestation (excluding 99) 

BIS                                                                                                                                

All live Ontario births in the fiscal year, with gestational age ≥ 20 weeks, index_hospital_name ne 'Unknown' and birth location type ne 'Home', and province=Ontario (infants record)                    

CIHI                                                                                                                              

All live Ontario births, gestational age ≥ 20 weeks (exluding 98, 99), with postal code in Ontario & Ontario HCN

Both datasets include births by infants date of birth

*Note that the CIHI DAD is based on discharge date, not birth date, and there are likely to be births missing from those available in the FY2013-14 DAD data available at this time. For previous years, the number of births from a given fiscal year that we find recorded in the subsequent fiscal year of data is approximately 1,000.     

The differences in total birth numbers between the BORN databases and CIHI DAD are impacted by a variety of factors including: the abstracting style used in each database, differences in the capture of live born infants near the borderline of viability (especially in the total count of live births for 20-24 weeks), and the specific criteria used to query each databases. We chose to define live births in CIHI DAD broadly, using those defined as hospital births and those where it is unclear.


BORN Ontario Data Costing Policy - Aggregate and Record Level Data

BORN Ontario recovers costs associated with preparing aggregated data for external requestors and for preparing datasets for researchers. Costs for data depend on the nature and complexity of the request and the amount of time required by the analyst to prepare the tables/dataset. We can provide cost estimates for grant applications or funded research projects and other QI/Policy work following an assessment of the data request needs, usually following an initial consultation.

The cost estimate includes: opening of file and consultation, de-identification process, data analyst’s time for file preparation and verification, and BORN Ontario admin fee. BORN Ontario can offer reduced fees for students where no grant funding is available. 

Health Equity

BORN Data Requestors – Have you considered Health Equity as a key component of your quality improvement or research project? Use this decision support tool to assess how your program, policy or project will affect different population groups. http://www.health.gov.on.ca/en/pro/programs/heia/