Data Resource Profile: Seeding Success: a cross-sectoral data resource for early childhood health and development research in Australian Aboriginal and non-Aboriginal children

In common with other indigenous populations worldwide,1 Aboriginal and Torres Strait Islander Australians experience worse health, development and later life outcomes than non-Indigenous Australians across most routinely reported population measures throughout the life course.2–5 These inequalities are founded in a history of colonization and discriminatory legislation, policy and practices.6 Despite the Australian Government’s commitment in 2008 to ‘Closing the Gap’ in outcomes between Indigenous and non-Indigenous people, progress towards the majority of targets has been largely disappointing to date.7 It is well recognized that the social conditions of children and their families are an important determinant of their health and development, and the early childhood years represent an opportunity for interventions that may improve health and development trajectories.8,9 Accordingly, a number of longitudinal cohort studies have been established in recent years to better understand the child, family and community factors that promote positive and negative health and development outcomes in Aboriginal and Torres Strait Islander children.10–13 Large-scale, population-level epidemiological research is also required to identify policy-sensitive targets for intervention, and to assess their impact. To conduct this research, longitudinal data resources with large-scale population coverage are needed. The Seeding Success data resource was established to conduct child health and health equity research in Australia’s most populous state, New South Wales (NSW), with a focus on Aboriginal and Torres Strait Islander children and scope to investigate multiple dimensions of disadvantage. It is a unique resource comprising individual-level administrative data with comprehensive population coverage, routinely collected by several sectors (including health, education and community services), that have been linked together to construct the health and development trajectories of a large, population-based cohort of children from birth to school age. More details about the rationale, aims and methodological plan are available elsewhere.14 In brief, the Seeding Success data resource capitalizes on recently available data from the Australian Early Development Census (AEDC; formerly the Australian Early Development Index15), a population-level measure of child development at school entry, linked to other administrative data sources to enable investigation of: (i) early life characteristics that promote positive and negative early childhood development; (ii) how early childhood outcomes vary geographically and how features of local communities contribute to this variation; and (iii) the relation of child outcomes to programme and service delivery. Australia is divided into five state and two territory jurisdictions (Figure 1). The state of NSW is home to almost one-third of Australia’s population (7.2 million of 22.3 million people) and nearly one-third of Australia’s Aboriginal and Torres Strait Islander population (209 000 of 670 000 people).16 Aboriginal and Torres Strait Islander people comprise 2.9% of the total NSW population; of these, 95% identify as Aboriginal, 3% as Torres Strait Islander and 2% as Aboriginal and Torres Strait Islander.16 Because Aboriginal people are the original inhabitants of NSW17 and account for 95% of the NSW Indigenous population, the term ‘Aboriginal’ will be used throughout this paper.18 The majority of the NSW population lives in major cities (74%), followed by regional (26%) and remote (< 1%) areas. In contrast, 44% of Aboriginal people in NSW live in major cities, 51% in regional areas and 5% in remote areas.19 Map of Australia with the state of New South Wales highlighted in grey. The Seeding Success data resource includes a population-based cohort of children who were born in NSW and started school in 2009 (N = 79 432) or 2012 (N = 86 846) (Table 1). Births were identified from the NSW Register of Births, Deaths and Marriages and the NSW Perinatal Data Collection; birth dates ranged from 1 January 2002 to 31 December 2008. School starters were identified from the 2009 and 2012 AEDC, which has high population coverage in NSW (99.1% in 2009 and 97.3% in 2012).2,20 Number and percentage of children in the Seeding Success data resource (n = 166 278) who have records from each data source, by AEDC collection year aIncludes 1352 children from the 2010 Australian Early Development Census (AEDC) top-up collection. bPDC records contain information on both mothers and babies. cBecause there are only ever 5 years of RoCC data available for linkage, fewer children in the 2009 AEDC collection year linked to the RoCC. dChildren may have one or more linked records from this data source. eOnly available for children enrolled in a NSW public school. fParent must have linked data in the PDC, APDC or MH-AMB and child must have RBDM birth record. gThe second parent reported on the RBDM birth registration, includes 63 228 (99.73%) males, 156 (0.25%) females and 16 (0.3%) with missing data for sex. hOther children born to the same mother, identified via linkage to the RBDM, who had a 2009 or 2012 AEDC record. iFor children born 2002–08, the full PDC record is available. jParents may have one or more linked records from this data source, for the 5 years preceding the child’s birth (where available). Number and percentage of children in the Seeding Success data resource (n = 166 278) who have records from each data source, by AEDC collection year aIncludes 1352 children from the 2010 Australian Early Development Census (AEDC) top-up collection. bPDC records contain information on both mothers and babies. cBecause there are only ever 5 years of RoCC data available for linkage, fewer children in the 2009 AEDC collection year linked to the RoCC. dChildren may have one or more linked records from this data source. eOnly available for children enrolled in a NSW public school. fParent must have linked data in the PDC, APDC or MH-AMB and child must have RBDM birth record. gThe second parent reported on the RBDM birth registration, includes 63 228 (99.73%) males, 156 (0.25%) females and 16 (0.3%) with missing data for sex. hOther children born to the same mother, identified via linkage to the RBDM, who had a 2009 or 2012 AEDC record. iFor children born 2002–08, the full PDC record is available. jParents may have one or more linked records from this data source, for the 5 years preceding the child’s birth (where available). In total, data are available for 166 278 children. Data on children’s parents are also available. For 163 590 children, data are available for their mother and for 38 878 children, data are also available for their ‘second’ parent, of whom 99.7% are fathers (Table 1). Of the total 166 278 children in the cohort, 154 935 children (93.2%) were born and started school in NSW, and 11 343 children (6.8%) were born in NSW and started school in another jurisdiction (Figure 2). Process for assembling the Seeding Success data resource population from birth and school age administrative data sources / Legend: AEDC, Australian Early Development Census; NSW, New South Wales; 1. Number of children after excluding 269 non-unique birth and/or AEDC records from source data; 2. Birth records from Perinatal Data Collection and/or Register of Births, Deaths and Marriages, 2002-2008. Data were provided by national and state government agencies. Table 1 summarises the individual-level measures available in the Seeding Success data resource for children and their parents, from the administrative data sources described below. Figure 3 illustrates the time coverage of the measures available from each data source. For children in the data resource, data were obtained from all sources. Where data were obtained for the parents, this is indicated below. Time coverage of data available from each source, for children and their parents within the Seeding Success data resource, by AEDC collection year†. Legend: †Excludes children who participated in the 2009 AEDC top-up collection in 2010 (n=1,352; 0.8%). For each data source, the horizontal box plot represents the following descriptive statistics: circle, mean; line inside the box, median; upper edge of box, 75th percentile value; lower edge of box, 25th percentile value; endpoint of upper whisker, maximum value; endpoint of lower whisker, minimum value. The NSW Perinatal Data Collection (PDC) includes records for all children born at ≥ 20 weeks of gestation or weighing ≥ 400 g in NSW public or private hospitals, as well as planned home births. It includes demographic variables and information on maternal health, the pregnancy, labour, birth, and perinatal outcomes. For the mothers of the children in the resource, the month and year of birth from each of her previous birth records in the PDC were obtained to enable calculation of the mother’s age at first motherhood. The NSW Registry of Births, Deaths and Marriages compiles birth registrations for NSW. Birth registrations include month and year of birth and Aboriginal status for mothers and other parents (mostly fathers). The NSW Register of Congenital Conditions includes records of congenital conditions identified during pregnancy, at birth or during the first year of life, as well as the date of diagnosis. Because identifiers are removed from the register after 5 years, data were only available for linkage for pregnancy outcomes recorded in the period 2004–08. The NSW Admitted Patients Data Collection includes records of all public and private hospital separations (discharges, transfers and deaths) in NSW since 1 July 2001. It includes patient demographics, and diagnoses and procedures coded according to the Australian Modification of the International Statistical Classification of Diseases and Related Problems, 10th revision (ICD-10-AM).21 For parents of children in the resource, hospitalization records for the 5 years preceding the child’s birth were obtained, where available. The NSW Emergency Department Data Collection includes records of all presentations to metropolitan, and the majority of regional, emergency departments in NSW since 1 January 2005. It includes patient demographics, mode of arrival, triage category, mode of separation, diagnoses, and procedures coded according to ICD-10-AM21, ICD-9-CM22, or Systematized Nomenclature of Medicine, Clinical Terms (SNOMED CT). or Systematized Nomenclature of Medicine, Clinical Terms (SNOMED CT®). The NSW Mental Health Ambulatory Data Collection (MH-AMB) includes the assessment, treatment, rehabilitation or care of non-admitted patients since January 2000, although there was significant undercounting of contacts until 2005/6. The MH-AMB data collection includes patient demographics, diagnosis codes coded according to the ICD-10-AM,21 and other characteristics of the service provided for each ‘contact’ between a clinician and a patient. For parents of children in the resource, MH-AMB records for the 5 years preceding the child’s birth were obtained, where available. The Key Information Directory System (KiDS) includes records of all child protection contacts with the NSW Department of Family and Community Services (FACS) since 2003, including information about whether a child has: (i) been assessed by a caseworker as being at actual harm/risk of harm; (ii) had a legal decision made in relation to them; (iii) been placed in out-of-home care; or (iv) been referred to and participated in a FACS early intervention programme. The Australian Early Development Census is a population measure of child development that has been collected nationwide every 3 years since 2009 for children enrolled in their first year of formal full-time school.15 In Australia, the school year starts in late January/early February and the majority of children start school at the age of 5 years. The AEDC is a teacher-completed checklist, collected between May and August, and includes items about the child’s development on five domains: (i) physical health and well-being; (ii) social competence; (iii) emotional maturity; (iv) language and cognitive skills; and (v) communication skills and general knowledge. At the time when data were linked for Seeding Success, AEDC data for 2009 and 2012 were available. NSW Public School Enrolment data include demographic information about the child and his or her family, including parent education and occupation, for children enrolled in NSW Public Schools (i.e. government-funded schools). In NSW in 2009 and 2012, 70% of children in their first year of school were enrolled in a public school, 20% in a Catholic school and 10% in an independent school.23 For children in the data resource, approval has also been obtained to link to: (i) Medicare Benefits Schedule data, which consist of records for claims for medical and diagnostic services; and (ii) Centrelink income assistance data, consisting of records of receipt of Australian Government payments for families with low incomes. Details of these linkages have been described elsewhere;14 they have not yet commenced. Where standard units of geography for areas of residence are available in the resource (e.g. PDC birth or AEDC record), publicly available area-level information, such as geographical remoteness24 or socioeconomic indices,25 have been attached to child and parent records. The NSW Centre for Health Record Linkage [http://www.cherel.org.au/] linked the individual-level data from the sources described above to create the Seeding Success data resource. The Australian Institute of Health and Welfare (AIHW) will undertake the planned linkages of Medicare and Centrelink data. The majority of data sources currently in the resource, with the exception of the KiDS and the school enrolment data, are routinely linked within the Centre for Health Record Linkage Master Linkage Key, which includes a set of regularly updated links within and between core population data sources in NSW. Custodians of each data source provide the Centre for Health Record Linkage with an encrypted source record number and demographic details (including full name, address, date of birth, sex) for each record in the source data; in the case of data sources not in the Master Linkage Key, this is done on an ad hoc basis. Records for each individual are then linked within and between data sources using probabilistic methods based on demographic details.26 For each individual identified in the linkage process for this resource, a project person-specific number (PPN) was created; this PPN was then assigned to all records that belonged to that individual in each data source. Following linkage, the PPN and associated source record numbers for each data source were returned to the relevant data custodians. The data custodians then extracted and supplied the approved variables and relevant PPNs to the In this the was such that one with the data had to both information and the Because Aboriginal people are to be in administrative and of multiple sources of linked data has been to Aboriginal in population the child’s from multiple data sources available for children at birth and school age. The of the child may be from the Aboriginal status recorded for the mother, second parent (mostly or child, on the source data, or a from multiple data sources. Table summarises the number of children recorded as Aboriginal in the birth and school age source data, and the of Aboriginal children when is from multiple linked data sources. Of the child cohort, children were as Aboriginal using the (i.e. the child or their parents were recorded as Aboriginal on of the available birth or the (Table which was for the descriptive in Table and number of children identified as Aboriginal using one or more birth and school age data sources in the Seeding Success data resource second parent, reported on the RBDM birth registration, includes 63 228 (99.73%) males, 156 (0.25%) females and 16 (0.3%) with missing data for sex. based on of used and of missing data in source data. and number of children identified as Aboriginal using one or more birth and school age data sources in the Seeding Success data resource second parent, reported on the RBDM birth registration, includes 63 228 (99.73%) males, 156 (0.25%) females and 16 (0.3%) with missing data for sex. based on of used and of missing data in source data. demographic and school characteristics of children in the Seeding Success data resource (n = 166 278) as child or parent identified as Aboriginal on of PDC, RBDM or APDC birth or AEDC school record. from date of birth on RBDM birth record or PDC record where RBDM date of birth second parent reported on the RBDM birth registration, includes 63 228 (99.73%) males, 156 (0.25%) females and 16 (0.3%) with missing data for sex. on APDC birth record. on of parent from the school enrolment record. on mother’s local of residence from PDC birth record. is first year of school at the time of the as high assistance to physical or not as status who have or emotional or demographic and school characteristics of children in the Seeding Success data resource (n = 166 278) as child or parent identified as Aboriginal on of PDC, RBDM or APDC birth or AEDC school record. from date of birth on RBDM birth record or PDC record where RBDM date of birth second parent reported on the RBDM birth registration, includes 63 228 (99.73%) males, 156 (0.25%) females and 16 (0.3%) with missing data for sex. on APDC birth record. on of parent from the school enrolment record. on mother’s local of residence from PDC birth record. is first year of school at the time of the as high assistance to physical or not as status who have or emotional or Table 3 characteristics for Aboriginal and children in the cohort and their parents, available from one or more of the linked data sources. Aboriginal children were more to be born to mothers who were not have private health in more areas and were than mothers of children. the majority of mothers of Aboriginal children in major cities or regional areas at the time of their child’s birth, mothers of Aboriginal children were more to live in regional and remote areas with mothers of children and on on the AEDC, of Aboriginal children were their first year of school with of children in the cohort, and were more common Aboriginal children with children The has approval from the NSW and Health Services Institute NSW the NSW Aboriginal Health and the Australian Institute of Health and Welfare and the Australian consisting of Aboriginal community service and their has been established to provide the with on the aims and and of the to on community and to with relevant and to of into policy and The Seeding Success data resource is currently being to investigate the between child development outcomes and maternal age at age at birth, and school age to NSW school enrolment in Aboriginal and children. The resource is also being used to emergency and during early and child development at age 5 years, for children in with the child protection in NSW, including children families participated in an early intervention programme that aims to families from or within the child protection families were to the early intervention programme have been identified in the data resource, as well as a of children who were on available will be for in and/or to relevant policy agencies. significant of this resource is the of population data with high coverage and numbers of children. has been and these data will enable the experience of Aboriginal children, a and population to be made The of linked population data will also enable of geographical in outcomes across metropolitan, regional and remote The linkage of data about programme to this resource is another and will enable the of to assess the of programme on early childhood outcomes. and of the measure in the development, by the also be major is the of the AEDC for an almost population of school starters in years. the AEDC about individual children, is not as a diagnostic the AEDC is a population measure of child development that be used to identify of children, or that may from and early intervention to improve child including school of the AEDC as an measure includes that be via of the checklist, which be by the characteristics of the the child or the school, or a of is the of the for with and of children. the AEDC and the Early Development have been the of studies that measures of and and of the in In Australia, there have also been studies the and of the AEDC with Indigenous and and important of this resource is that Aboriginal people are to have a birth are to be in administrative and that the of Aboriginal status has time in data of multiple linked data sources has been to of Aboriginal which is an available in this resource. is that emergency and congenital conditions data were not available for the period for all children with an AEDC record in 2009 or emergency presentations in regional and remote areas were not in 2012, was that of all presentations to public hospital emergency departments in NSW were (e.g. may be for children who live in areas to the state these children may in the It is also not to from the data currently in the resource or cohort children NSW for period between birth and school age. linkage to national Medicare data may provide information about child between jurisdictions during the The Seeding Success to project and for data resource are a conditions of data that must be the project to to the programme of The will project and whether be using the data resource and within the scope of data and the data resource is currently within the which is a encrypted and Australian and Because of the of the data, all data and must be within the project where are in to the and of the data. to the data, who will the data must the and a account including of and the of must be to the for The Seeding Success data resource was established to conduct child health and health equity research in New South Wales (NSW), Australia, with a focus on Aboriginal and Torres Strait Islander children and with scope to investigate multiple dimensions of disadvantage. Data are available for all children who were born in NSW, were enrolled in their first year of full-time school and had an Australian Early Development Census record in 2009 or 2012 (N = 166 Health data on children’s parents preceding the child’s birth are also available on mothers for 163 590 children, data on fathers for 38 878 data linkage was used to individual and longitudinal administrative data with comprehensive population coverage from several including health, education and community child health and development trajectories to be followed from birth to school age. The of multiple data sources linked at an individual of Aboriginal and Torres Strait Islander children who are in administrative data sources and to in cohort or are to the project and to the data, which are in a was by an Australian Health and was by an Early and an was by an was by an Development was by the for Health Health was by an Development of The to the Australian Government Department of the NSW of the NSW Register of Births, Deaths and Marriages, the NSW Department of and the NSW Department of Family and Community Services for to the data. also the Australian Institute of Health and Welfare Data Services Medicare Australia and the Australian Government of Services and Services for data and linkage for the The the NSW Centre for Health Record Linkage for the linkage of data sources in this The on the from in to the The Seeding Success and and had for the of this with from the the first of this with from and of the with from all and and the data. approved the

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