BORN. The power of database linkage: a new source of longitudinal maternal-child data is

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1 The power of database linkage: a new source of longitudinal maternal-child data is BORN Deshayne Fell, Steven Hawken, Robin Ducharme, Ann Sprague, Kumanan Wilson, Astrid Guttmann, Nelson Chong, Mark Walker BORN Ontario Conference February 2015

2 Learning objectives 1. To summarize the key features of the linked BORN- ICES data and the potential for longitudinal research on maternal and infant health. 2. To illustrate the value of the linked BORN-ICES data through applied clinical research examples.

3 Background BORN Information System (BIS) collects information on all hospital births and midwifery-attended home births in Ontario Over 99% of births in Ontario captured (live births and stillbirths) Linked dataset that spans the continuum of maternal-child care (from fertility treatment to 18 months)

4 Background Institute for Clinical Evaluative Sciences (ICES) is an extensive repository of provincial health administrative databases containing longitudinal information on health services utilization for all Ontario residents Health administrative databases from Ontario Ministry of Health, Canadian Institute for Health Information, and Statistics Canada, among numerous other sources Data are linked by encrypted health card number

5 Background A linkage between these two data repositories would provide a unique opportunity to study populationlevel maternal and infant health outcomes ranging from the perinatal period to many years after birth

6 Development Representatives from both organizations developed a Data Sharing Agreement to formalize processes for: Secure data transfer Record linkage Project approval Data access and appropriate data usage Privacy officers from BORN and ICES were consulted to ensure compliance with provincial privacy legislation

7 Implementation In 2014, a six-year historical dataset of BORN-Niday records ( to ) was transferred to ICES Deterministic and probabilistic techniques used to link individual maternal-newborn records to the master registration file at ICES A unique identifier was appended, facilitating linkage to all other databases held by ICES

8 Implementation 93.1% of records were linked to ICES (preliminary linkage) Stillbirths comprised ~8% of the unlinked group (despite representing only 0.5% of all BORN records) Unlinked live births more likely to be preterm and low birth weight Linkage revisions and data quality assessments ongoing

9 Implementation Two-year BIS dataset ( and ) will be transferred to ICES in early 2015 Will include data from most encounters except newborn screening (already at ICES), fertility, and new child sources (autism, 18-month well-baby assessment)

10 The possibilities are endless. Prepregnancy Pregnancy Postpartum. Periconception Embryo / Fetus Infant Child

11 Infant respiratory outcomes associated with prenatal exposure to maternal H1N1 influenza vaccination EXAMPLE 1

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13 Four year health outcomes based on levels of newborn screening metabolites from the Ontario Newborn Screening Program Database EXAMPLE 2

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15 Implications of BORN-ICES linkage Size matters....rare birth outcomes (e.g., congenital anomalies, stillbirth)..infant mortality..rare diseases (e.g., kernicterus, inborn errors of metabolism, childhood cancers) BORN-ICES linkage will enable large, population-based studies of pregnancy outcomes, maternal and infant health, with the potential for short or long-term follow-up

16 Advantages of linkage Relatively inexpensive and quick option compared with prospective studies using primary data collection Established Data Sharing Agreement and linkage infrastructure Large population Possibility of long-term follow-up of mothers and babies Addition of BORN to ICES data improves depth of clinical information about pregnancy

17 Important pitfalls of linked data Data quality (missing data, misclassification) Non-linkage of mothers or infants Outcomes ascertained from long-term follow-up are predicated on health care attendance (ascertainment biases) Lack of validation studies for most diagnostic codes Many pitfalls will be research question specific

18 How do you access the BORN-ICES linked data? Approval mechanism under development Both ICES and BORN have to approve all uses of the linked data Research Ethics Board approval will be required Access within secure ICES network environment Final project initiation requirements will be available soon at:

19 Thank you!!!