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School of Women’s and Children Health 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 Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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Page 1: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

School of Women’s and Children Health

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

Page 2: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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)

Page 3: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

NMDDP governance

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)

AIHW

DoHA

DoHA

NPESU

NMDDP Advisory Group

Page 4: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Project aim

To develop the collection and availability of nationally

consistent and comprehensive maternal and perinatal

morbidity and mortality data in Australia

Page 5: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 6: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 7: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

National Maternity Services Plan

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.

Priority 2 – Service delivery:

Action 2.1 Ensure Australian maternity services provide high-quality, evidence-based maternity care

Page 8: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

National Maternity Services Plan

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.

4.2.4AHMAC 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.

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

Page 9: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Governance structure of AHMC & NHISSCAHMC

Australian Health Ministers’ Conference

AHMACAustralian Health Ministers’ Advisory Council

NEHIPCNational E-Health & Information Principal

Committee

Ministers Conference/Advisory Council/Principal Committee

Standing Committee

Other entities/advisory groups

HWPCHealth Workforce

Principal Committee

HPPPCHealth Policy Priorities Principal Committee

APHDPCAustralian Population Health Development Principal Committee

AHPPCAustralian Health

Protection Principal Committee

CTEPCClinical, Technical and

Ethical Principal Committee

PHIDGPopulation Health

Information Development Group

MHISSMental Health

Information Strategy Subcommittee

Sub Committee/Working Groups

MHSCMental Health

Standing CommitteeNHCIOFNational Health

Chief Information Officers Forum

National E-Health Strategy Project Steering

Committee

NAGATSIHIDNational Advisory

Group on Aboriginal & Torres Strait Islander Health

Information Development

NHISSCNational Health

Information Standards &

Statistics Committee

National Health Information Regulatory

Framework (NHIRF) Working Group

NEHTANational E-Health

Transition Authority

AHICAustralian Health

Information CouncilCurrently under

review; term expired April 2008

Page 10: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 11: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

NMDDP components

Maternity Information Matrix Scoping and mapping national information

needs; addressing identified needs Nomenclature – maternity models of care Maternal mortality

Page 12: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 13: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 14: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

MIM version 2

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/

Page 15: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 16: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 17: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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:

1. private maternity care

2. public hospital care

3. combined maternity care, with both private and public components

4. 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

Page 18: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 19: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 20: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 21: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Maternal mortality – project components

Two components and deliverables:

1. Maternal mortality report: Maternal Deaths In Australia 2006-2010 and prospective national data collection form

2. 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

Page 22: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Classification of maternal deathMaternal 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)

Page 23: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 24: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Re-classification of maternal suicide

World Health OrganisationClassify 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 directionConsultation with WHO, UK, NZ, NMMAC to develop most appropriate classification system for the Australian setting whilst still enabling benchmarking internationally. Work continuing

Page 25: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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)

Page 26: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Ratios of maternal mortality

1982-1984

1985-1987

1988-1990

1991-1993

1994-1996

1997-1999

2000-2002

2003-2005

0

2

4

6

8

10

12

Total deaths

Direct deaths

Indirect deaths

Australia, 1982-1984 to 2003-2005

Page 27: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Maternal mortality - reportMaternal 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

Page 28: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 29: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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)

Page 30: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 31: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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)

Page 32: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

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

Page 33: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

ReferencesAHMC (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#

Page 34: School of Womens and Children Health Overview of National Maternity Data Development Project AIHW National Perinatal Epidemiology and Statistics Unit Michelle

Thank you

Questions ?

[email protected]