The future of stillbirth research and education in Australia
Stillbirth affects more than 2000 Australian families each year, and the
economic and social costs are having significant effects on families,
communities, the health system, and the Australian economy. The Centre for
Research Excellence in Stillbirth (Stillbirth CRE) summarised the case for making
stillbirth research and education a national priority.
Many stillbirths are preventable, and Australia is
underperforming in the challenge to reduce deaths and improve care and support
for those who experience stillbirth...Stillbirth is an issue of national
significance that requires coordinated leadership and action across all levels
of Australian government to improve the current and future wellbeing of
Australian women, their families and our wider society.
This chapter considers the future of stillbirth research and education
in the context of international and national policy frameworks, and strategies
that could be implemented to reduce the rate of stillbirth in Australia.
International policy context
Stillbirth has not been high on the international health agenda, and was
not listed as a priority area in either the United Nations' (UN) Millennium
Development Goals (MDG) (covering the period 2000 to 2015), nor the Sustainable
Development Goals (SDG) (covering the period 2016 to 2030) which have focused
on other areas of maternal and child health.
However, evidence suggests that inclusion in high-level international
agenda is having a significant impact on country level outcomes. For example,
neonatal deaths and maternal deaths, both of which were targeted under the
MDGs, have reduced significantly, while the stillbirth rate has not reduced by
the same amount.
The lack of progress in reducing stillbirth rates internationally has
led to calls for its inclusion in international policy frameworks. The UN released
its Global Strategy for Women’s and Children’s Health in 2010 and, in 2014, the
World Health Organisation (WHO) launched Every Newborn: An Action Plan to End
Preventable Deaths, providing a strategic framework aimed at ending
preventable newborn deaths and stillbirths worldwide by 2035.
In addition, the WHO Global Reference List of 100 Core Health Indicators
was recently updated to include the rate of stillbirths (based on the WHO
definition) as a core indicator for countries to measure the quality of health
Australia's policy framework
A range of national, state and territory governments, hospitals,
research institutions and advocacy groups are engaged in research into the
causes of stillbirth and education about the risk factors. However, there is no
coordinated national policy framework that sets national targets for reducing
stillbirth, nor consistent national standards for stillbirth reporting,
research and education.
State and territory governments are largely responsible for implementing
laws and policies in relation to stillbirth, including health care services,
registration of stillbirths, investigations, data collection, health and
related policy and law.
As a result, stillbirth data collections, research initiatives and
education strategies tend to be piecemeal, subject to different jurisdictional
policies and clinical approaches and fragmented, short-term funding
Whilst there have been attempts to coordinate policy at the national
level, progress has been intermittent and there is still no coherent national
policy framework that seeks to reduce the incidence of stillbirth in Australia.
National Strategic Approach to
The National Maternity Services Plan 2010−2015,
developed under Commonwealth leadership, concluded on 30 June 2016.
In April 2016, the Australian Health Ministers' Advisory Council (AHMAC) agreed
to develop a National Framework for Maternity Services. This was discontinued
and, in September 2017, the AHMAC agreed to start a new process to develop a
National Strategic Approach to Maternity Services (NSAMS).
The final NSAMS is intended to provide an overarching national policy
framework for maintaining Australia’s high-quality maternity care system, and
working towards further improvements in line with contemporary practice,
research and international developments. The deadline for submissions in the
first round of consultation on the NSAMS closed on 18 June 2018.
A second round of face-to-face consultations was conducted in October−November 2018, with
a deadline for submissions of 19 November 2018. The NSAMS is expected to be
completed by July 2019.
A second consultation paper outlined a set of draft strategic directions
to 'provide an overarching national approach to maintaining Australia's
high-quality maternity care system', and included a strategic direction that
'Service providers implement measure to reduce the rates of stillbirth', based
on the success of the United Kingdom (UK) Saving Babies Lives Care
Bundle and research being conducted by Stillbirth CRE. It also recommended access
to bereavement care for women who experience stillbirth, neonatal death or
whose babies have major congenital anomalies.
Towards a National Stillbirth Action Plan
A number of submitters and witnesses called for the Council of
Australian Governments (COAG) to make stillbirth research and education a
Stillbirth CRE proposed a number of recommendations, developed in
partnership with a number of institutions and organisations with expertise in research,
policy and healthcare practice in Australia and internationally. It recommended
that COAG provide coordinated leadership and action to use data to drive
change; improve clinical practice; invest in research; increase public
awareness; and improve perinatal pathology services.
Similarly, Stillbirth Foundation Australia called for a comprehensive
and coordinated policy response led by the Commonwealth that is properly
funded, sets clear targets and includes meaningful evaluation of implementation
Together, data, research and education, both at a community
level and a medical practitioner level, and moving support and advice from a
piecemeal approach to a coordinated strategy, holds the key to ensuring more
healthy births and fewer stillbirth tragedies. If we can get the policy
settings right, we believe we are on the cusp of dramatically reducing the rate
of stillbirth in Australia...we need a plan that is developed by government,
after consultation with many stakeholders, with measureable targets, a built-in
review process and supported by a significant funding package that is
proportionate, in line with precedent and will work.
Stillbirth Foundation Australia suggested that it could be modelled on the
recently-released National Action Plan for Endometriosis with strategies
- public education about preventing stillbirth;
a dedicated research fund administered with clear priorities as
part of a broader strategy;
the harmonisation of data collection and management across
jurisdictions, with regular public reporting periods; and
improving the understanding and awareness of stillbirth among
health professionals working at every stage of the clinical pathway.
Professor Craig Pennell, Senior Researcher, Hunter Medical Research Institute
(HMRI), similarly emphasised the need for national leadership to drive the
establishment of a national reporting system and prevention initiatives, as
well as a commitment to longer-term funding for stillbirth research.
This is not a short-term solution. This needs to be a
long-term commitment over 10 years, to say, 'We can achieve this.' I think we
can achieve a whole lot more than 25 per cent in certain pockets of Australia,
but I think that there are going to be other pockets in Australia where it will
be extremely difficult to bring about change.
Professor Susan Walker, Department of Obstetrics and Gynaecology; and
Chair, Women's and Newborn Health Network, Melbourne Academic Centre for
Health, The University of Melbourne, emphasised the importance of coordinated
and collaborative approaches to research, education and care, and the need to
focus on reducing preventable stillbirth.
Our focus is on reducing preventable stillbirth. We suggest
that reducing preventable stillbirth requires strong connections of women with
high-quality and accessible pre-pregnancy, pregnancy and intrapartum care; of
health services with research institutes; of policymakers with timely access to
reliable data; of government, philanthropic and industry backers with leaders
in research; and of those researchers with their national and international
Red Nose Stillbirth Prevention
Red Nose stated that the organisation has set a goal of reducing the
incidence of stillbirth in Australia, having achieved an 85 per cent reduction
in Sudden Infant Death Syndrome (SIDS) through its public health campaign by
adopting a simple formula:
...drive research and turn breakthroughs into education and
advocacy, whilst continuing to provide bereavement support to families who have
lost children, regardless of gestation or age, as they navigate the horrendous road
of grief in front of them.
Red Nose reported on the development of its Stillbirth Prevention
Program, in collaboration with the Stillbirth CRE and the team that developed
and implemented the successful Scottish Maternity Care Quality Improvement
The program aims to reduce the rate of stillbirth in Australia by 20 per cent
in five years and contains five modules:
patient education campaign about stillbirth;
implementation of a new package to reducing smoking in pregnancy;
raising awareness for reduced fetal movement;
- risk assessment and fetal surveillance for fetal growth restriction; and
- implementing a new Perinatal Mortality Review Tool.
Red Nose advised that it had secured matching funds from three partners
(University of Newcastle, $100 000; HMRI, $100 000; and John Hunter
Hospital, $100 000), and is seeking to partner with government ($300 000) to
enable the modules to be developed, implemented (in the John Hunter Hospital)
In addition, Red Nose has been offered the new Perinatal Mortality
Review Tool, utilised in Scotland for several years and recently adopted in the
UK, and will evaluate the tool in a clinical setting for potential application
in Australian hospitals as part of its vision to develop 'Red Nose Hospitals'.
The committee considered suggestions from submitters and witnesses for a
range of possible actions on stillbirth reporting and data collection, research
and education. It also considered suggestions for improved models of maternity
care that may contribute to reducing the rate of stillbirth and providing
culturally-appropriate care for families who have experienced stillbirth.
Strategy 1: Stillbirth reporting
and data collection
Whilst Australia has the necessary expertise and a collaborative
research environment, there is a lack of incentive for collecting agencies to
link their data into a national system. As a result, there is a very long
lead-time in collecting data, undertaking research and implementing the results
of research. As Professor Pennell stated:
Until there is a unified approach to complex health issues
across Australia, we're not going to achieve the solution, whether it be
stillbirth or whether it be Indigenous health. Whilst we have meetings with
seven groups coming together arguing about who's paying for what, where and
how, there needs to be some degree of central control over elements of health.
Consideration could be given to linking national perinatal data
collection to healthcare funding agreements, in order to provide an incentive
to jurisdictions to increase the number of mandatory reporting items.
Strategy 2: Stillbirth research
As discussed in Chapter 3, the lack of a nationally consistent set of
research priorities is hampering stillbirth researchers.
The idea of a roundtable of relevant stakeholders to consider and advise
on collaborative research partnerships and funding has merit.
It would enable the government to draw on a range of expertise and perspectives
on stillbirth, and provide a valuable vehicle for consultation between
government, the philanthropic sector and the corporate sector, as well as
experts, clinicians, academics, parents and stillbirth advocates.
A roundtable approach could also explore opportunities for longer-term
funding arrangements that would enable the implementation of large-scale,
multifaceted research projects into stillbirth causes and prevention.
Strategy 3: Stillbirth education
The committee acknowledges that the risk of stillbirth is not widely
known or discussed, and that a stillbirth education and awareness campaign is
required to help overcome the stigma, misinformation and silence that currently
surrounds stillbirth in Australia.
Stillbirth education programs are largely undertaken by voluntary and
non-government organisations, who argued that it should be considered a
national policy priority. As Ms Natasha Donnolley noted:
In summary, stillbirth needs to be a COAG-endorsed,
high-priority research area. There needs to be a government funded public
awareness campaign, and multidisciplinary education in how clinicians need to
broach the subject of stillbirth during women's antenatal education. There needs
to be better support for NGOs who provide care for families in this area. Our
organisations, both in stillbirth prevention and bereavement support, are
saving the government millions of dollars, and it's not much to ask for some of
The committee commends the development of the Red Nose Stillbirth
Prevention Program and the concept of Red Nose Hospitals as an important
initiative aimed at reducing stillbirth in Australia. The committee notes that,
by drawing on international models and collaborations, Red Nose has succeeded
in reducing the costs of developing the program in Australia.
The committee considers that the Australian government should conduct a
national stillbirth public awareness campaign, drawing inspiration from
successful public health campaigns such as SIDS, Quit Smoking, and the Heart
Foundation, aimed at:
- helping to raise awareness amongst pregnant women and their
families about the known causes and risks of stillbirth, regardless of whether
their pregnancy is considered high-risk;
assisting clinicians and other health professionals to overcome
the culture of silence surrounding stillbirth, and making it easier for them to
have conversations about the causes and risks with pregnant women and their
enabling employers and work colleagues to be better informed
about stillbirth and equip them with the necessary skills to support bereaved
parents returning to work following a stillbirth;
increasing awareness of stillbirth amongst the broader Australian
providing flow-on effects for stillbirth research and education
in the form of increased funding and opportunities to establish public-private
Strategy 4: Models of care
The committee heard ample evidence about the merits of a continuity of
maternity care model that can be adopted by hospitals, clinicians and other
Professor Caroline Homer, Distinguished Professor of Midwifery, University
of Technology Sydney, considered that the National Maternity Services Plan 2011
had understated the importance of continuity of care, and argued that a new
national strategy was required to ensure consistency and continuity in
maternity services for all Australian women.
Maternity services in hospitals are generally not on the top
list of things to worry about, and so the impetus for change is not really
there. Hospitals funded by the state governments are generally worried about
their emergency room and their waiting lists. With maternity services,
generally everything goes well and nicely and it just doesn't get political
push and it doesn't get hospital mandate—'Actually it's terrible that 300 of
our 6,000 women get what we consider evidence based practice but the rest just
get ordinary care.' It sort of gets put on the side.
There has never been a national target or federal government commitment
to reducing the rate of stillbirth in Australia. However, the evidence suggests
that, in countries like Scotland where such a commitment has been made,
policies and practices have been changed and stillbirth rates have declined
significantly as a result.
The committee acknowledges that the AHMAC is currently consulting
stakeholders on the development of a National Strategic Approach to Maternity
Services (NSAMS), with the aim of guiding national maternity services policy,
aligning delivery of services with available evidence, and monitoring
performance and outcomes so that progress can be measured and improvements
The committee notes that submissions in the first consultation phase closed
on 18 June 2018, and that a second round of face-to-face consultations is underway
2018 with the NSAMS due to be completed by July 2019.
Recognising that the outcomes of the NSAMS development process will not
be available within the timeframe for this inquiry, the committee urges the
Australian government to consider the information and recommendations arising from
this inquiry when considering how stillbirth research and education will be
addressed in the NSAMS.
In addition, whilst acknowledging the current process to develop a national
strategic approach for Australian maternity services, the committee strongly
recommends that a National Stillbirth Action Plan should also be developed for
specific consideration and endorsement by the AHMAC.
The committee recognises that a National Stillbirth Action Plan requires
partnerships between governments, philanthropic organisations, academic institutions
and health services, and that such partnerships should inform the development
of the National Stillbirth Action Plan.
The committee considers that the Action Plan should form part of the
NSAMS, and include the following elements:
- a national target of 20 per cent reduction in the rate of
stillbirth in Australia over the next three years;
guidelines for establishing nationally-coordinated and consistent
stillbirth reporting standards and dataset;
an online register of current research and data relating to
stillbirth designed for researchers and health professionals and available to
the general public;
a set of national research priorities focused on reducing
stillbirth, especially in relation to unexplained stillbirth; and
an public education campaign drawing on successful public health
campaigns such as SIDS and Quit Smoking.
The committee recommends that, through the Australian Health
Ministers' Advisory Council, the Australian government leads a process to
develop and implement a National Stillbirth Action Plan aimed at reducing the
rate of stillbirth in Australia by 20 per cent over the next three years
(Budget forward estimates), and including:
- a nationally-coordinated and consistent framework for stillbirth
reporting and data collection;
an online register of stillbirth research and data;
national research priorities; and
a public education campaign.
In addition, the committee considers that the Australian government
should develop continuity of maternity care guidelines that encourage
hospitals, clinicians and other health professionals to provide consistency and
continuity in maternity services for all Australian women.
Details of each of these elements are discussed in previous chapters,
but the committee considers that they represent the key strategic areas to be
addressed in the National Stillbirth Action Plan.
The committee considers that annual progress reports on the development
and implementation of the National Stillbirth Action Plan to reduce the rate of
stillbirth in Australia should be provided to COAG's Health Council and made
The committee recommends that annual progress reports on the
development and implementation of the National Stillbirth Action Plan to reduce
the rate of stillbirth in Australia are provided to the Council of Australian
Governments Health Council and made publicly available.
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