Data Resource Profile: Better Outcomes Registry & Network (BORN) Ontario

The Better Outcomes Registry & Network (BORN) Ontario was developed to collect pregnancy, birth and newborn information and outcomes data to facilitate and improve perinatal care in Ontario, Canada. With near-complete capture of all births in Ontario, it has evolved to be an invaluable resource for performance measurement, quality improvement, surveillance and research. The BORN Information System was launched in 2012 as the amalgamation of data systems from provincial programmes servicing the maternal–newborn population. BORN Ontario also maintains the legacy data sets of its predecessors (2006–2012) and other data holdings have since been added. Data are submitted regularly by >250 hospitals, fertility clinics, birth centres, midwifery practice groups, primary care organizations, and prenatal- and newborn-screening laboratory and treatment centres. Over 1.3 million maternal–infant records have been captured to date. Data include maternal demographics, health behaviours, in vitro fertilization assistance, prenatal screening, pregnancy interventions and complications, intrapartum events, peripartum outcomes, intensive-care and newborn-screening information. Record-level data can be linked to a wide range of provincial administrative and clinical data sets to track individuals from conception to birth and across the lifespan. Aggregate and record-level data are available upon request via the Data Access Request Team. BORN Ontario data dictionaries are openly available to browse online. The Better Outcomes Registry & Network (BORN) Ontario collects pregnancy, birth and newborn information and outcomes data for nearly all births in Ontario, Canada. With nearly complete capture of the approximate 140 000 births each year in Ontario—∼40% of births in Canada—BORN Ontario is the largest perinatal registry in the country.1 The origins of BORN Ontario date to the 1980s as a system for tracking regional variation in pregnancy and childbirth outcomes across Eastern Ontario. BORN Ontario was originally named the Niday Perinatal Database in honour of its founder, Dr Patricia Niday, who, as director of one of Ontario’s regional perinatal programmes, advocated tirelessly for its provincial adoption. The regional programme gradually expanded data capture and launched the Ontario Perinatal Surveillance System (OPSS). By 2006, most of the province was contributing data to the OPSS for analysis and reporting.2 In 2009, with funding from the Ontario Ministry of Health and Long-Term Care, OPSS was designated a prescribed registry under the province’s Personal Health Information Protection Act, and rebranded as BORN Ontario. Prescribed registry status granted BORN Ontario the authorization to collect, use and disclose personal health information without consent to facilitate and improve healthcare. The new organization amalgamated the data systems of four programmes servicing the maternal–newborn population: the Prenatal Screening Program, the Fetal Alert Network (high-risk antenatal healthcare for pregnancies complicated by congenital anomalies), the Ontario Midwifery Program and the Niday Perinatal Database. These programmes worked together to normalize their data and build a robust, web-based data-collection and reporting system. In April 2012, the BORN Information System was launched to collect, manage, protect and share critical data about every pregnancy, birth and child in Ontario. Newborn screening test results from Newborn Screening Ontario were also included at launch, representing the first time such information was linked to perinatal data sets in Ontario. A reporting portal for data contributors went live in 2013. BORN Ontario has evolved to be a secure data platform with multiple data holdings that can be linked to connect individual health records from conception to birth and into early childhood. The Canadian Assisted Reproductive Technologies Registry (CARTR), which collects data on in vitro fertilization (IVF) cycles and birth-outcomes data for fertility clinics across Canada, was added in January 2013 and rebranded CARTR Plus. Other data holdings have since been added, including primary care data on young children and results of standardized screening and assessments of child development through the provincial Healthy Babies Healthy Children programme. BORN Ontario also maintains legacy data sets from the founding five partner programmes (last data entry 31 March 2012) and CARTR (January 2001—December 2012). The present-day BORN Information System collects data from >250 hospitals, fertility clinics, birth centres, midwifery practice groups, primary-care organizations, and prenatal- and newborn-screening laboratory and treatment centres spanning all levels of care from pre-pregnancy to early childhood. To date, >1.3 million maternal–infant records have been captured. The following sections will focus on the BORN Information System with reference to the Niday Perinatal Database for historical context. BORN data are collected on a voluntary basis from health-information custodians involved in the care of children, newborns and their mothers. Data are submitted through several mechanisms including manual data entry into a reporting portal by staff in birthing units and midwifery practice groups, Health Level Seven (HL7) data feeds, and automated extraction and uploads from electronic health record systems, where available. Data are submitted in close to real time, or uploaded in batches, and include maternal demographics, health behaviours, any IVF assistance, prenatal screening, pregnancy interventions and complications, intrapartum events, peripartum outcomes, neonatal intensive care unit (NICU) care and newborn-screening data, each of which is classified by the nature of the clinical encounter with the healthcare system (Figure 1). Linkage of data elements and encounters across data sources is facilitated by a robust linking and matching algorithm utilizing unique individual (mother and child), pregnancy and birth identifiers that are assigned upon the first record entry into the BORN Information System. Some data elements are common across encounters, permitting the pre-population of some data fields to reduce duplication of data-entry efforts. This model enables both programme-specific analyses by encounter and analysis of aggregated data by population and health system. A description of the data available in BORN is provided in Table 1. Better Outcomes Registry & Network (BORN) Ontario data sources and architecture. BORN Ontario data are submitted on a voluntary basis by health-information custodians from across Ontario servicing the maternal–child population. Data are classified by the nature of the healthcare encounter and are linked to create aggregate records for each woman and child. CARTR, Canadian Assisted Reproductive Technologies Registry; MFM, maternal fetal medicine; NICU, neonatal intensive care unit; NIPT, non-invasive prenatal testing; SCN, special care nursery; HBHC, Healthy Babies Healthy Children. Better Outcomes Registry & Network (BORN) Ontario data sources and architecture. BORN Ontario data are submitted on a voluntary basis by health-information custodians from across Ontario servicing the maternal–child population. Data are classified by the nature of the healthcare encounter and are linked to create aggregate records for each woman and child. CARTR, Canadian Assisted Reproductive Technologies Registry; MFM, maternal fetal medicine; NICU, neonatal intensive care unit; NIPT, non-invasive prenatal testing; SCN, special care nursery; HBHC, Healthy Babies Healthy Children. Summary of data collected by the Better Outcomes Registry & Network (BORN) information system Collects information on in vitro fertilization treatment cycles from fertility clinics across Canada collected into the Canadian Assisted Reproductive Technology Register (CARTR Plus) Also includes record-level details on any ART treatment cycles from Ontario fertility clinics that result in a pregnancy that is delivered at >20 weeks’ gestation that are automatically linked with other records within the BORN Information System Prenatal screening records for every pregnant individual who receives any form of prenatal screening in Ontario Includes information from laboratory and ultrasound testing, clinical assessment, genetic counselling and diagnostic testing from prenatal screening, as well as screening and diagnostic results Captures information relevant to the pregnant person’s spontaneous or induced labour and birth experience through to the first hour postpartum whether this occurs in hospital, at home or in a birth centre Midwifery–client specific data are also captured in the midwifery encounter Screening tests and results from the provincial newborn-screening laboratory (including hearing and congenital heart disease) Information on short-term follow-up, clinical status, diagnostic information and treatment plans for infants who received a positive newborn screen are also available Information obtained through regular assessments of a baby or child’s development Includes age, height, weight, vaccinations and documentation of developmental milestones using the standardized measures (Rourke Baby Record Ontario, Nipissing District Developmental Screen) Information collected from completion of the standardized HBHC Screening Tool, which facilitates identification of risk factors that may affect a child’s healthy development and referral to community programmes and services Screening is voluntary and consent-based BORN facilitates the transfer of this information from hospitals/homes to public-health units who provide the follow-up Collects information on in vitro fertilization treatment cycles from fertility clinics across Canada collected into the Canadian Assisted Reproductive Technology Register (CARTR Plus) Also includes record-level details on any ART treatment cycles from Ontario fertility clinics that result in a pregnancy that is delivered at >20 weeks’ gestation that are automatically linked with other records within the BORN Information System Prenatal screening records for every pregnant individual who receives any form of prenatal screening in Ontario Includes information from laboratory and ultrasound testing, clinical assessment, genetic counselling and diagnostic testing from prenatal screening, as well as screening and diagnostic results Captures information relevant to the pregnant person’s spontaneous or induced labour and birth experience through to the first hour postpartum whether this occurs in hospital, at home or in a birth centre Midwifery–client specific data are also captured in the midwifery encounter Screening tests and results from the provincial newborn-screening laboratory (including hearing and congenital heart disease) Information on short-term follow-up, clinical status, diagnostic information and treatment plans for infants who received a positive newborn screen are also available Information obtained through regular assessments of a baby or child’s development Includes age, height, weight, vaccinations and documentation of developmental milestones using the standardized measures (Rourke Baby Record Ontario, Nipissing District Developmental Screen) Information collected from completion of the standardized HBHC Screening Tool, which facilitates identification of risk factors that may affect a child’s healthy development and referral to community programmes and services Screening is voluntary and consent-based BORN facilitates the transfer of this information from hospitals/homes to public-health units who provide the follow-up Citations are provided where data elements have been previously validated or described in detail. Summary of data collected by the Better Outcomes Registry & Network (BORN) information system Collects information on in vitro fertilization treatment cycles from fertility clinics across Canada collected into the Canadian Assisted Reproductive Technology Register (CARTR Plus) Also includes record-level details on any ART treatment cycles from Ontario fertility clinics that result in a pregnancy that is delivered at >20 weeks’ gestation that are automatically linked with other records within the BORN Information System Prenatal screening records for every pregnant individual who receives any form of prenatal screening in Ontario Includes information from laboratory and ultrasound testing, clinical assessment, genetic counselling and diagnostic testing from prenatal screening, as well as screening and diagnostic results Captures information relevant to the pregnant person’s spontaneous or induced labour and birth experience through to the first hour postpartum whether this occurs in hospital, at home or in a birth centre Midwifery–client specific data are also captured in the midwifery encounter Screening tests and results from the provincial newborn-screening laboratory (including hearing and congenital heart disease) Information on short-term follow-up, clinical status, diagnostic information and treatment plans for infants who received a positive newborn screen are also available Information obtained through regular assessments of a baby or child’s development Includes age, height, weight, vaccinations and documentation of developmental milestones using the standardized measures (Rourke Baby Record Ontario, Nipissing District Developmental Screen) Information collected from completion of the standardized HBHC Screening Tool, which facilitates identification of risk factors that may affect a child’s healthy development and referral to community programmes and services Screening is voluntary and consent-based BORN facilitates the transfer of this information from hospitals/homes to public-health units who provide the follow-up Collects information on in vitro fertilization treatment cycles from fertility clinics across Canada collected into the Canadian Assisted Reproductive Technology Register (CARTR Plus) Also includes record-level details on any ART treatment cycles from Ontario fertility clinics that result in a pregnancy that is delivered at >20 weeks’ gestation that are automatically linked with other records within the BORN Information System Prenatal screening records for every pregnant individual who receives any form of prenatal screening in Ontario Includes information from laboratory and ultrasound testing, clinical assessment, genetic counselling and diagnostic testing from prenatal screening, as well as screening and diagnostic results Captures information relevant to the pregnant person’s spontaneous or induced labour and birth experience through to the first hour postpartum whether this occurs in hospital, at home or in a birth centre Midwifery–client specific data are also captured in the midwifery encounter Screening tests and results from the provincial newborn-screening laboratory (including hearing and congenital heart disease) Information on short-term follow-up, clinical status, diagnostic information and treatment plans for infants who received a positive newborn screen are also available Information obtained through regular assessments of a baby or child’s development Includes age, height, weight, vaccinations and documentation of developmental milestones using the standardized measures (Rourke Baby Record Ontario, Nipissing District Developmental Screen) Information collected from completion of the standardized HBHC Screening Tool, which facilitates identification of risk factors that may affect a child’s healthy development and referral to community programmes and services Screening is voluntary and consent-based BORN facilitates the transfer of this information from hospitals/homes to public-health units who provide the follow-up Citations are provided where data elements have been previously validated or described in detail. BORN Ontario data are used to support clinical programme management, benchmarking, evaluation and quality improvement across the province of Ontario. The data may also to be used for research. As such, BORN Ontario upholds a comprehensive framework to promote quality in all aspects of data collection, analysis, use and disclosure of information.8 Five essential dimensions of data quality are upheld (Figure 2). Better Outcomes Registry & Network (BORN) Ontario data-quality framework. The data-quality framework is based on five dimensions to ensure that user decision-making is based on current, valid, reliable and relevant data. Better Outcomes Registry & Network (BORN) Ontario data-quality framework. The data-quality framework is based on five dimensions to ensure that user decision-making is based on current, valid, reliable and relevant data. Audits of the Niday Perinatal Database and BORN Information System have demonstrated good agreement with patient charts and clinical administrative hospital databases.9–12 An external audit by Public Health Ontario concluded that the quality of BORN data exceeded that of other sources of reproductive-health information.12 A re-abstraction study of 29 variables from records submitted in 2014–2015 found >90% agreement between BORN records and patient charts for over three-quarters of the audited variables.11 The remaining variables demonstrated fair to moderate agreement. These findings have informed ongoing improvements to BORN data dictionaries, data-entry guidelines and quality-control processes. The BORN Information System applies a series of validation rules to ensure data quality. Logic rules assess the compliance of data elements collected within a given healthcare encounter. Conformance rules ensure that mandatory elements are completed. Parameter rules compare entered values against reference tables to ensure that they are within acceptable ranges before they are submitted. The system also applies aggregation rules to determine how data elements across multiple encounters (e.g. prenatal screening, general antenatal visits and delivery) are consolidated into a single birth record. Where there is discordance in data elements that are recorded in more than one encounter, aggregation rules provide guidance on which values take precedence. Thus, having some data elements captured multiple times across the pregnancy and birth continuum also helps to increase data accuracy and completeness. Support mechanisms are in place for submitting organizations to identify and resolve errors in their data entries. The data-validation rules described above facilitate the generation of reports and for records with encounters, errors or data entered for the in encounters that errors can be data be by the submitting organization each their records to ensure that there are As a in this BORN data data at the of each and are available within the data-entry system and regional are available to to data and and the of system are the province and and regularly with the data and the regional perinatal using the data to improve A is also available. BORN Ontario is a prescribed registry under the Ontario Personal Health Information Protection Act, As such, personal health information within the BORN is by and that to for and BORN Ontario has a programme to protect personal health information in its from disclosure and and are to and BORN Ontario’s information and are by the Information and of Ontario every The of Eastern Ontario the and support for BORN Ontario The BORN Ontario in with at to provide and administrative of funding is provided by the Ontario Ministry of Health and Long-Term hospitals, clinics and birth centres have to their data within the BORN Information System. These data are used for practice and to support In organizations and external may use BORN Ontario data for and of the system at provincial or other regional These have in to the quality of maternal–newborn care in Ontario through data-quality the of new health services and and The BORN Ontario registry is also an invaluable resource for maternal and child health BORN data have been used to including the developmental origins of health and of pregnancy and and and maternal and child health BORN has developed electronic audit and systems that provide newborn and care with on a basis to facilitate practice on performance The BORN Newborn was launched in 2012 with performance and has since an for variation in clinical practice and patient outcomes across the of the Newborn its demonstrated improvements across several performance These of at in before and A was also launched in with performance to support improvement for neonatal a performance on each performance to provincial as well as data from levels of maternal or neonatal care of birth with health and organizations is ongoing and helps to ensure of and practice its BORN data have been used in Canada and to nearly with and These a of prenatal screening and diagnostic and use and outcomes of in interventions and factors and factors maternal and neonatal health outcomes such as and A of using BORN data is available BORN data can be linked with other provincial data to facilitate follow-up of and their is a provincial data and clinical and administrative records nearly all that have with the healthcare system. health and registry data are also permitting evaluation of health and care as a across the In the Niday historical data was to A transfer of BORN Information System data spanning was in early a data transfer place in The new data are for in and of individual maternal and newborn records to at facilitates of BORN data to all other data sets by Thus, of a unique to study maternal and health outcomes from the fertility treatment and perinatal to of data include the of before pregnancy on maternal and newborn the between in pregnancy and outcomes in the health outcomes of children to who received the the between prenatal and to and the development the between intrapartum and postpartum and risk of following in the perinatal The of linked data include analyses and using BORN to collect data for clinical and other that BORN Ontario is a new the use of linked data will to as other provincial data holdings available. Ontario, Canada has of that can be used to provide comprehensive into population health and healthcare The BORN Ontario registry is a of the the to pregnancy and newborn health records across multiple health systems and track individuals from conception and birth across their The of data by the BORN Ontario registry it a resource for perinatal capture of all hospital births in Ontario of all births in the and all home and capture of information about maternal and newborn health and behaviours, outcomes and of multiple data holdings spanning the continuum of maternal–child healthcare and a nearly data-collection time BORN data have been validated and with other clinical administrative data The BORN Ontario birth registry is without BORN elements are to or data and The BORN Registry is on data from clinical and patient data are collected or entered into a they will be available for into the BORN Information System. In where manual entry may be by staff or in the of can affect data and or data entry and are a Data entry errors and data are of pre-pregnancy is by or patient to how this information is collected have the data quality for this Information on and is to and of variables including to and is also information at the individual or and identifiers are available in information (e.g. and can be through to other including Canadian data. Data are to contributors through the BORN Information System reporting has a designated who can for of their who have to the reporting portal or who data that are available through this may to BORN Ontario data data sets and BORN Information System data are available to external to support programme development and surveillance 2). to BORN Ontario are in with provincial data sets at Better Outcomes Registry & Network (BORN) Ontario Niday Perinatal Database the Ontario Midwifery Program Prenatal Screening Ontario and historical non-invasive and results the Canadian Assisted Reproductive Technologies Register Niday Perinatal Database the Ontario Midwifery Program Prenatal Screening Ontario and historical non-invasive and results the Canadian Assisted Reproductive Technologies Register data sets at Better Outcomes Registry & Network (BORN) Ontario Niday Perinatal Database the Ontario Midwifery Program Prenatal Screening Ontario and historical non-invasive and results the Canadian Assisted Reproductive Technologies Register Niday Perinatal Database the Ontario Midwifery Program Prenatal Screening Ontario and historical non-invasive and results the Canadian Assisted Reproductive Technologies Register Data can be to the BORN Data & Request and through of a data request form the on the of information tables or record-level and the support (Figure BORN and data with external to data data sets and BORN Ontario provide a platform through which external can with the data for data sets are and to external following completion of all of the processes. Better Outcomes Registry & Network (BORN) Ontario data. may for aggregate or record-level data. can be through of an times and data may on the nature and of the to record-level data from BORN Ontario data holdings may be to Better Outcomes Registry & Network (BORN) Ontario data. may for aggregate or record-level data. can be through of an times and data may on the nature and of the to record-level data from BORN Ontario data holdings may be to Data dictionaries for legacy data elements are available for The BORN Information System data is available as an and may also be in A data improvement is the data and data elements available from the legacy data sets and the BORN Information System data elements and were added to the BORN Information System in 2012 and may be available in the historical data. is to some of the data elements to the new BORN Information System. Data on pregnant individuals and newborns with a where the of the population with an and are available for public-health or analysis there is of and consent of the BORN Ontario has a to ensure that the information it collects is in a and and to the of and and other for to The to data in BORN is based on guidance from on the collection, and of data to their community and as a are to data to for programme and of newborn and services and information without of and consent by a community with aggregate data and record-level data sets for external on the nature and of the and an of the can be provided for for and other quality and Data include risk and data time for and and an BORN Ontario is a primary and resource for health information and data in Ontario, Canada. The BORN Information System is an and for care and health outcomes of and their can be used to support in perinatal healthcare and BORN Ontario data are to and to relevant to newborn and The to and other individuals who have to BORN Ontario since its the data and and at BORN Ontario who across the province to facilitate and improve care for children and and to provide and for Ontario’s health system. In the of the and regional who support the data platform and the contributing data. funding for BORN Ontario is provided by the Ontario Ministry of Health and Long-Term

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