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

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)

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

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

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 (1990-2015) 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

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

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.

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.

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

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 2008-09) 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

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

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

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

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 188 unique visitors for 320 visits and in March there were 176 unique visitors for 247 visits MIMv2 facilitated the scoping and mapping component of the NMDDP http://www.npesu.com.au/maternityinformation/

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

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

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 2004) 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

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 4.2.4 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

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

Maternal mortality Contributes directly to the Plan Priority Action 2.1.2 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

Maternal mortality – project components Two components and deliverables: Maternal mortality report: Maternal Deaths In Australia 2006-2010 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

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)

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

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 1997-99 Confidential Enquiries into Maternal Deaths in the UK (National Institute for Clinical Excellence (NICE) report) Australia has classified these deaths as indirect since the 1997-99 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

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 2011) Advances in medical technology keeping patients alive for longer (late maternal death) Between 2000-02 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)

Ratios of maternal mortality Australia, 1982-1984 to 2003-2005

Maternal mortality - report Maternal Deaths in Australia 2006-2010 report Quantitative Qualitative: inclusion of perturbated vignettes, case studies (UK, NZ) to facilitate learning outcomes Retrospective NMDR 2006-2010 Historically AIHW published 3 triennial reports on maternal deaths in Australia on adhoc basis subject to funding (last report 2008 (2003-2005)) 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 - 2012

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

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 1997-2002 – 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)

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

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)

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

References AHMC (Australian Health Ministers’ Conference) National Maternity Services Plan 2011. 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): 255-60, 2008 Council of Australian Governments Reform Council 2010, National Indigenous Reform Agreement: Baseline performance report for 2008-09, 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 2007. 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 2009. Assisted reproductive technology in Australia and New Zealand 2007. 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;87:734-734. http://www.who.int/bulletin/volumes/87/10/09-071001/en/index.html#

Thank you Questions ? michelle.bonello@unsw.edu.au