1. Overview of National Maternity Data Development Project
AIHW National Perinatal Epidemiology and Statistics Unit
Michelle R Bonello PhD MPH
on behalf of Professor Elizabeth A Sullivan
School of Women’s and Children Health

2. National Maternity Data Development Project (NMDDP)
Australian Government Department of Health and Ageing (DoHA)
Australian Institute of Health and Welfare (AIHW)/National Perinatal Epidemiology and Statistics Unit (NPESU)
National Maternal Data Development Project
2 year project (Phase 1: July 2011 – June 2013)

3. NMDDP governance NMDDP Advisory Group Dr Fadwa Al-Yaman(Chair)
Ms Sue Cornes
Professor Caroline Homer
Ms Ann Kinnear
Dr Michael Nicholl
Professor Jeremy Oats
Professor Michael Permezel
Ms Melinda Petrie
Ms Nicola Stansfield
Ms Masha Somi
Professor Elizabeth Sullivan
AIHW
Chair, National Perinatal Data Development Committee
Clinical expert - midwifery
Australian College of Midwives (ACM)
Clinical expert – obstetrics
Maternity Services Inter-jurisdictional Committee
Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG)
DoHA
NPESU

4. Project aim
To develop the collection and availability of nationally consistent and comprehensive maternal and perinatal morbidity and mortality data in Australia

5. Background to NMDDP
United Nations Millennium Development Goals 2000 – 2015
Goal 4: Reduce child mortality
Goal 5: Improve maternal health, 5.1: reduce by ¾ MMR ( )
Council of Australian Governments (COAG) National Indigenous Reform Agreement (NIRA) – Closing the Gap targets for overcoming Indigenous disadvantage
Improving Maternity Services in Australia: The Report of the Maternity Services Review (Commonwealth of Australia 2009) – informed the development of the National Maternity Services Plan
National Maternity Services Plan (AHMC 2011) – provides a strategic national framework to guide policy and program development over 5 years (2010 to 2015), guiding document for NMDDP

6. National Maternity Services Plan – Feb 2011
Australian Health Ministers’ Conference
Focuses on primary maternity services during the antenatal, intrapartum and six-week postnatal periods for women and babies
The Australian National Maternity Services Plan sets out a five year vision for maternity care in Australia
Five year vision
Maternity care will be woman centred, reflecting the needs of each woman within a safe and sustainable quality system. All Australian women will have access to high-quality, evidence-based, culturally competent maternity care in a range of settings close to where they live. Provision of such maternity care will contribute to closing the gap between the health outcomes of Aboriginal and Torres Strait Islander people and non-Indigenous Australians. Appropriately trained and qualified maternity health professionals will be available to provide continuous maternity care to all women

7. National Maternity Services Plan
Priority 2 – Service delivery:
Action 2.1 Ensure Australian maternity services provide high-quality, evidence-based maternity care
The initial year
The middle years
The later years
Signs of success
2.1.2 AHMAC considers the recommendations of the National Maternal Mortality and Morbidity reporting project.
AHMAC recommends a national maternal mortality and morbidity review process to ACQSHC for continuous improvement of maternity care.
ACSQHC continues to work with AHMAC on a national maternal mortality and morbidity review process for continuous improvement of maternity care.
A national maternal mortality and morbidity review process is established.
National maternal and perinatal mortality and morbidity reports are produced.
National systems and processes will drive improved performance in private and public maternity care.

8. National Maternity Services Plan
Priority 4 – Infrastructure:
Action 4.1 Ensure all maternity care is provided within a safety and quality system
Action 4.2 Ensure maternity service planning, design and implementation is woman-centred
The initial year
The middle years
The later years
Signs of success
4.1.5 The Australian Government funds the development of nationally consistent maternal and perinatal data collections.
The Australian Government facilitates standardised nationally consistent maternal and perinatal data collections.
AHMAC agrees and begins facilitating the capture of standardised nationally consistent data items for the national data collections.
AHMAC facilitates the capture of nationally consistent data items for the national data collections.
The Australian Government publishes a report on maternal and perinatal outcomes.
Nationally consistent maternal and perinatal data are collected and reported.
4.2.4
AHMAC agrees to develop nationally consistent descriptors and definitions for the range of models of maternity care.
AHMAC develops agreed nationally consistent descriptors and definitions for the range of maternity care available.
There are agreed descriptors and definitions of the range of maternity care available.

9. Governance structure of AHMC & NHISSC
Australian Health Ministers’ Conference
AHMAC
Australian Health Ministers’ Advisory Council
NEHIPC
National E-Health & Information Principal Committee
Ministers Conference/Advisory Council/Principal Committee
Standing Committee
Other entities/advisory groups
HWPC
Health Workforce Principal Committee
HPPPC
Health Policy Priorities Principal Committee
APHDPC
Australian Population Health Development Principal Committee
AHPPC
Australian Health Protection Principal Committee
CTEPC
Clinical, Technical and Ethical Principal Committee
PHIDG
Population Health Information Development Group
MHISS
Mental Health
Information Strategy Subcommittee
Sub Committee/Working Groups
MHSC
NHCIOF
National Health Chief Information Officers Forum
National E-Health Strategy Project Steering Committee
NAGATSIHID
National Advisory Group on Aboriginal & Torres Strait Islander Health Information Development
NHISSC
National Health Information Standards & Statistics Committee
National Health Information Regulatory Framework (NHIRF) Working Group
NEHTA
National E-Health Transition Authority
AHIC
Australian Health Information Council
Currently under review; term expired April 2008

10. COAG indicators: NIRA
Closing the Gap Target 2: Halve the gap in mortality rates for Indigenous children under 5 within a decade (COAG NIRA: Baseline performance report for )
Health conditions originating during pregnancy and the first month after birth are the leading causes of death for Indigenous and non-Indigenous children under five
Low birthweight doubled for Indigenous mothers (11.5%) compared to non-Indigenous mothers (4.5%)
Over half Indigenous mothers smoked tobacco during pregnancy (3x rate of non-Indigenous mothers)
Indigenous women access antenatal visits at lower rates than non-Indigenous women

11. NMDDP components Maternity Information Matrix
Scoping and mapping national information needs; addressing identified needs
Nomenclature – maternity models of care
Maternal mortality

12. NMDDP phases Three phase project Phase one has four parts (2011-2013)
Part 1 – National information requirements
Part 2 – Options to meet information needs
Part 3 – Data development
Part 4 – Project framework

13. Maternity Information Matrix (MIM)
Web-based summary of data items in Australian jurisdictional and national data collections relevant to maternity care and perinatal health (health departments, national NCIS, ABS)
The Australian Government Department of Health and Ageing identified the need for consistent, comprehensive national maternity data to monitor progress
A review of relevant Australian maternal data collections to determine the depth and breadth of data capture in Australia
Scope includes national and state and territory (jurisdictional) data collections from key health, administrative and vital statistics data collected
Information for government agencies, researchers, data managers, interested community

14. MIM version 2 http://www.npesu.com.au/maternityinformation/
MIM updated as part of the NMDDP
Project component completed
Final MIMv2 online version released beginning of February 2012
There has been consistent traffic to the site: In February there were unique visitors for 320 visits and in March there were unique visitors for 247 visits
MIMv2 facilitated the scoping and mapping component of the NMDDP

15. Scoping and mapping
National information needs in maternity care and service provision not fully scoped and documented previously (recommendation: Maternal and perinatal morbidity and mortality: a review of data collections in Australia, AIHW 2010)
WHA members contributed to consultation process (questionnaire)
Aim to map identified information needs against existing data, using the MIMv2 to identify areas of incomplete, inconsistent, inaccurate or non- existent data capture.
Designed to contribute to an improved national collection
Will assist with monitoring and evaluating maternity services and outcomes in Australia so that improvements can be made to health systems and processes to facilitate better outcomes for mothers and their babies
From scoping exercise, list of priority data items are being developed
Sets agenda for subsequent stages of the project

16. Scoping and mapping - options to meet information needs
Assessing ways of meeting the identified and prioritised information needs
changes to existing perinatal data collections
data linkage
data development
looking at service provider burden
assessing feasibility of addressing data deficiencies and gaps
prioritising items for data development
end phase 1 will develop project framework that will help build a business case for carrying the work forward

17. Nomenclature – maternity models of care
Develop a coherent system of nomenclature that will encompass the range of models of maternity care in practice throughout Australia
The Maternity Services Review (Commonwealth of Australia, 2009) estimated over 90% of women in Australia receive care through one of four overarching models:
private maternity care
public hospital care
combined maternity care, with both private and public components
shared care, in which GPs and GPs with obstetric qualifications contribute components of antenatal and intrapartum care
Maternity data in Australia: a review of sources and gaps (Walker et al ) highlighted lack of standardised terminology and definitions for identifying and differentiating models of maternity care in Australia where variations in service delivery exist between institutions and jurisdictions

18. Nomenclature – maternity models of care
Contributes directly to the Plan Priority Action 4.1 that the implementation of innovative and progressive models of maternity care around Australia is supported by a comprehensive evidence base and operates within a sound safety and quality system
Contributes directly to the Plan Priority Action that there are agreed descriptors and definitions of the range of maternity care available
Good quality maternity information is required to monitor changing practice and ensure that the outcomes for mothers and babies are maintained
Development of standard nomenclature or taxonomy for maternity models of care not previously attempted in Australia or internationally

19. Nomenclature – maternity models of care method
Preliminary stages of project component
Guided by Models of Care Working Party
Review of current and proposed policy and practice documents to delineate and describe the defining features of each model of maternity care
Develop data framework to be used as the basis for developing a classification system to provide standardised categories of maternity models of care
Consultation phase on data framework – stakeholders, content experts
Framework developed into draft Models of Care Classification System (including data values)
Models of Care Classification System distributed for wider consultation on a national basis

20. Maternal mortality
Contributes directly to the Plan Priority Action that:
maternal mortality review process is established
maternal mortality reports are produced
national systems and processes will drive improved performance in private and public maternity care
Internationally, maternal mortality used to compare maternal health outcomes between countries and is used as an indicator of society’s health care services
Detailed examination of these deaths can inform policy and improve practice in antenatal and obstetric care

21. Maternal mortality – project components
Two components and deliverables:
Maternal mortality report: Maternal Deaths In Australia and prospective national data collection form
Maternal mortality data linkage study: Mothers who die: a national population study of mothers dying in pregnancy and in the first year after birth – data linkage
National Maternal Mortality Advisory Committee to re-convened advise project

22. Classification of maternal death
The death of a women while pregnant or within 42 days of termination of pregnancy, irrespective of the duration and the site of the pregnancy, from any cause related to or aggravated by the pregnancy or its management, but not from accidental or incidental causes (WHO 1992)
Direct obstetric death
those resulting from obstetric complications of the pregnant state (pregnancy, labour and puerperium) from interventions, omissions, incorrect treatment, or from chain of events resulting from any of the above
Indirect obstetric death
those resulting from previous existing disease or disease that developed during pregnancy and which was not due to direct obstetric cause, but was aggravated by the physiologic effects of pregnancy
Obstetric death of unspecified cause (unclassified)
maternal death from unspecified or undetermined cause occurring during pregnancy, labour and delivery or the puerperium
Incidental death (coincidental: UK, Netherlands, NZ)
death from unrelated causes which happen to occur in pregnancy or the puerperium (e.g. MVA). Cases included in reports, only direct and indirect counted for statistical analysis (not ICD 10 classification)

23. Late maternal death Late maternal death (included in ICD 10)
the death of a woman from direct or indirect obstetric causes more than 42 days but less than one year after termination of pregnancy (WHO 1992)
Direct obstetric death
those resulting from obstetric complications of the pregnant state (pregnancy, labour and puerperium) from interventions, omissions, incorrect treatment, or from chain of events resulting from any of the above
Indirect obstetric death
those resulting from previous existing disease or disease that developed during pregnancy and which was not due to direct obstetric cause, but was aggravated by the physiologic effects of pregnancy

24. Re-classification of maternal suicide
World Health Organisation
Classify suicide in pregnancy, deaths from puerperal psychosis and postpartum depression in the category of direct maternal death (Pattinson et al 2009)
There is no internationally recognised standard definition or criteria for coding of maternal deaths
Psychiatric illness is one of the leading causes of maternal death in Australia
In line with recommendations from the Confidential Enquiries into Maternal Deaths in the UK (National Institute for Clinical Excellence (NICE) report) Australia has classified these deaths as indirect since the triennium
Reclassification of suicide significantly impact maternal mortality ratio in Australia
Future direction
Consultation with WHO, UK, NZ, NMMAC to develop most appropriate classification system for the Australian setting whilst still enabling benchmarking internationally. Work continuing

25. Maternal mortality in Australia
Maternity care in Australia is one of the safest in the with world with a low maternal mortality rate compared to Organisation for Economic Co-operation and Development (OECD) nations (the Plan )
Advances in medical technology keeping patients alive for longer (late maternal death)
Between one in every 8,975 women in Australia died within 6 weeks of giving birth or terminating a pregnancy
Indigenous women rate four times higher
Women giving birth at older age (Laws et al 2009) and higher rates of co-morbidities (obesity, diabetes, hypertension, ART) (Wang et al 2007)

26. Ratios of maternal mortality
Australia, to

27. Maternal mortality - report
Maternal Deaths in Australia report
Quantitative
Qualitative: inclusion of perturbated vignettes, case studies (UK, NZ) to facilitate learning outcomes
Retrospective NMDR
Historically
AIHW published 3 triennial reports on maternal deaths in Australia on adhoc basis subject to funding (last report 2008 ( ))
relied on collation of information from State and Territory Maternal Mortality Committees
many states and territories conduct confidential enquiries with varying methods and legislation – comparisons difficult
statistical analysis based on small numbers with limited statistical power
National standardisation of maternal mortality reporting
Nationally consistent confidential maternal mortality enquiry system
Prospective NMDR

28. Maternal mortality – data linkage
Mothers who die: a national population study of mothers dying in pregnancy and in the first year after birth – data linkage
Ascertainment of maternal and late maternal deaths
limited research to validate reporting maternal deaths in Australia
hospital survey found 34% under-reporting of maternal deaths (Qld) (King et al 1999)
pilot linkage study 20% under-reporting of maternal deaths (NSW) (Cliffe et al 2008)
Study will evaluate contribution of pregnancy as a risk factor for all cause mortality and specific causes of death in women at different reproductive ages
State and territory perinatal data + National Death Index + National Coroner’s Information System + STMMC

29. Maternal mortality – data linkage
Late maternal deaths not monitored and/or are missed by jurisdictions due to no efficient process to identify late maternal deaths
No agreement on value of investigating late maternal deaths
– 13 late maternal deaths reported nationally (demonstrating lack of investigation)
No national study of late maternal deaths conducted in Australia to date
Data linkage
provides a new means of maternal death ascertainment
population based
utilises routinely collected and available data
potential to be a sustainable surveillance tool for maternal deaths
Preliminary phase of project (ethics, data transfer)

30. NMDDP summary – phase 1 Project components
Maternity Information Matrix
Scoping and mapping information needs; options to meet information needs; data development work
Nomenclature – maternity models of care
Maternal mortality (report and data linkage)
Collaborative work: DoHA, AIHW, NPESU
Committees (NMDDP AG, NMMAC, MoCWP)
Phase 1, approaching the beginning of phase 2

31. NMDDP – Phase 2
Phase two – development of a business case to National Information Standards and Statistics Committee (NHISSC) for endorsement
Phase three – Implementation of revised and/or expanded maternity data collection(s)

32. Acknowledgements
Funding Australian Government Department of Health and Ageing AIHW team Dr Fadwa Al-Yaman Melinda Petrie Mary Beneforti NPESU team Professor Elizabeth Sullivan Dr Lisa Hilder Natasha Donnolley Stephanie Johnson Liz Stokes Committees NMDDP Advisory Group NMMAC MoCWP

33. References
AHMC (Australian Health Ministers’ Conference) National Maternity Services Plan Canberra: Australian Government Department of Health and Ageing Cliffe S, Black D, Bryant J, Sullivan EA. Maternal deaths in New South Wales Australia: a data linkage project. Australian and New Zealand Journal of Obstetrics and Gynaecology, 48(3): , 2008 Council of Australian Governments Reform Council 2010, National Indigenous Reform Agreement: Baseline performance report for , COAG Reform Council, Sydney King J, Flenady V. Maternal mortality, an under-reported event. Proceedings of the 6th Annual Congress of the Perinatal Society of Australia and New Zealand: Brisbane, 1999 Laws PJ, Slaytor IK, Sullivan EA. Australia’s mothers and babies Perinatal statistics series no. 23. AIHW cat. no. PER 48. Sydney: AIHW NPSU, 2009 Walker J. Maternity data in Australia: a review of sources and gaps. Bulletin no 87.Cat.no.AUS136 Canberra: AIHW Wang YA, Chambers GM, Dieng M & Sullivan EA Assisted reproductive technology in Australia and New Zealand Assisted reproduction technology series no. 13. Cat. no. PER 47. Canberra: AIHW World Health Organisation, International Statistical Classification of Disease and Related Health Problems. Tenth Revision. Volume II. Geneva: WHO1992:98-99 Pattinson R, Say L, Paulo Souza J, van den Broek N, Rooney C on behalf of the WHO Working Group on Maternal Mortality and Morbidity Classification. WHO maternal death and near-miss classifications. Bulletin of the World Health Organization 2009;87:

34. Thank you
Questions ?