Description
The National Maternal Mortality Data Collection (NMMDC) has been established within the Australian Institute of Health and Welfare (AIHW) and collates data from state and territory sources to be used in the preparation of national maternal death reports. The AIHW only receives such jurisdictional data and does not source, compile, validate or review data regarding maternal deaths independently.

The NMMDC contains information on the deaths of women reported to have died while pregnant or within 42 days of the end of pregnancy, irrespective of the duration or outcome of the pregnancy. The state and territory health authorities and other jurisdictional bodies responsible for primary data collection and review regarding maternal deaths receive clinical data on the women who died from patient administrative and clinical records, as well as from the State and Territory Maternal Mortality Committees where death reviews are undertaken. This information is usually collected through a variety of sources, including notifications from health professionals, coronial reports and notifications from related data collections, including the jurisdictional register of births, deaths and marriages. Data are entered into the NMMDC via an electronic data collection system (electronic National Maternal Death Reporting tool or e-NMDR). Data in the NMMDC includes data collected retrospectively and specifically by some states and territories.

Summary of key data quality issues

• The NMMDC provides national information for use in preparing a national report on women who died while pregnant or within 42 days of termination of pregnancy, irrespective of the duration or outcome of the pregnancy, from 2006–2018.
• Data sources, supply and quality varied considerably by state and territory.
• Legislative privacy restrictions and data approval processes differed by state and territory, and in some jurisdictions precluded full supply of maternal death data. Due to their health and privacy legislation, only limited summary data on maternal deaths are supplied by Western Australia.
• Not all states and territories had active maternal mortality committees or subcommittees for the period of deaths. This has limited the quality and completeness of data supplied.
• Data collection for some jurisdictions is retrospective and not from existing collections. Retrospective data collection limits the quality and completeness of data supplied.
• Methodology, definitions, classifications and reference periods for maternal death data collections differ significantly across states and territories, and comparisons between collections should be made with caution.

The AIHW is a national agency set up by the Australian Government under the Australian Institute of Health and Welfare Act 1987 to provide reliable, regular and relevant information and statistics on Australia's health and welfare. It is an independent corporate Commonwealth entity established in 1987, governed by a management board, and accountable to the Australian Government through the Health Portfolio.

The AIHW aims to improve the health and wellbeing of Australians through better health and welfare information and statistics. It collects and reports information on a wide range of topics and issues, from health and welfare expenditure, hospitals, disease and injury, and mental health, to ageing, homelessness, disability and child protection.

The AIHW also plays a role in developing and maintaining national metadata standards. This work contributes to improving the quality and consistency of national health and welfare statistics. The AIHW works closely with governments and non-government organisations to achieve greater adherence to these standards in administrative data collections to promote national consistency and comparability of data and reporting.

One of the main functions of the AIHW is to work with the states and territories to improve the quality of administrative data and, where possible, to compile national data sets based on data from each jurisdiction, to analyse these data sets and disseminate information and statistics.

TheAustralian Institute of Health and Welfare Act 1987, in conjunction with the Privacy Act 1988 (Cwlth), ensures that the data collections managed by the AIHW are kept securely and under the strictest conditions with respect to privacy and confidentiality. For further information see the AIHW website www.aihw.gov.au.

Under a Memorandum of Understanding with the Department of Health, the AIHW is responsible for the management of the NPMDC. The AIHW maintains a coordinating role in the collection, including providing secretariat duties to the National Maternal and Perinatal Mortality Advisory Group, undertaking data development and highlighting implementation and collection issues.

Australian state and territory health authorities supply data to the AIHW under individual data agreements between AIHW and each state and territory. The AIHW is the data custodian of the NMMDC and receives, compiles, edits and verifies the NMMDC data in collaboration with the state or territory health authority that supplied the data. State and territory health authorities retain ownership of the jurisdictional level data and must approve any jurisdictional level output before it is released.

NMMDC data are collected annually. Most jurisdictions need at least 12–18 months lead time to undertake post-mortem investigations, data entry and validation as required after the end of the data collection period. Deaths subject to coronial inquiry may take longer to finalise. Maternal deaths data for 2018 were requested on the 26 June 2020 for submission to the AIHW by 14 August 2020. Three jurisdictions supplied completed data by this date. Final and useable 2018 data were received from all jurisdictions by 15 October 2020.

Maternal deaths in Australia 2018 is a web-based report published available on the AIHW website.

Requests for unpublished data can be made by contacting the AIHW on (02) 6244 1000, by email to [email protected] or through the AIHW’s custom Data on request service.

A cost-recovery charge may apply to requests that require substantial resources. Depending on the nature of the request, requests for access to unpublished data may require additional approval from jurisdictional data custodians or the AIHW Ethics Committee.

For Maternal deaths in Australia reporting, all statistical methods and concepts applied to NMMDC can be found in report online at https://www.aihw.gov.au/reports/mothers-babies/maternal-deaths-in-australia/contents/definitions-of-maternal-deaths.

The NMMDC data are compiled primarily from state and territory maternal death data collections or, where not available, other state and territory data sources. Data are requested on the death of all women reported to have died while pregnant or within 42 days of the end of pregnancy in Australia from 2006–2018. Specifications for data items in the NMMDC were developed using nationally standardised data as entered into the National Health Data Dictionary. It includes data items relating to the mother, including demographic characteristics and factors relating to the pregnancy, labour and birth; details of death; classification of death and data items relating to the baby, including birth status; and any additional case summaries.

A National Maternal and Perinatal Mortality Advisory Group was convened in 2015 to oversee the process of data collection for the maternal and perinatal death reports and has taken over the responsibilities of the previous National Maternal Mortality Advisory Committee. Following a restructure in July 2019, the National Maternal and Perinatal Mortality Advisory Group was re-named the National Maternal and Perinatal Mortality Clinical Expert Group.

Inaccurate responses may occur in all data provided to the AIHW. The AIHW does not have direct access to maternal mortality committee records to determine the accuracy of the data provided. However, the AIHW undertakes validation on receipt of data. Data received from states and territories are checked for completeness, validity and logical errors. Potential errors are queried with jurisdictions, and corrections and resubmissions are made in response to these edit queries. The AIHW does not adjust data to account for possible data errors without the permission of the state or territory that supplied the data.

Errors may occur during the processing of data by the states and territories or at the AIHW. Processing errors prior to data supply may be found through the validation checks applied by the AIHW. The data are corrected when verification of an error is supplied. The AIHW does not adjust the data to correct for missing values.

Prior to publication, state/territory-level data are referred back to jurisdictions for checking and review. Note that because of data editing and subsequent updates of state/territory information, numbers reported may differ from those in reports published by the states and territories.

Due to small numbers contained in the NMMDC, caution should be taken when interpreting these data.

Due to their health and privacy legislation, only limited summary data on maternal deaths were supplied by Western Australia for 2006–2018.

The NMMDC is an ongoing data set collected specifically, in the first instance, for use in the Maternal deaths in Australia reporting; it is a continuing collection and will be available as it expands for future reports in that series.

State and territory health authorities compile statistics and publish reports on maternal deaths. Methodology, definitions, classifications and reference periods for these collections differ significantly across states and territories, and comparisons between states and territories should be made with caution.