IMPACT REPORT 2019 - Telethon Kids Institute
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IMPACT
REPORT
2019
IMPACT REPORT 2019 | 1
are at the CONTENTS
of everything we do
INTRODUCTION COLLABORATING FOR
4 Message from our Director
6 Our award-winning researchers
IMPACT
8 Our research at a glance 66 Early Years Initiative off to strong start
68 Bobbie brings baby’s brain to life
70 ‘Mama’ Deb’s dedication to saving
TRANSLATION children in Papua New Guinea
16 Smooth sailing for Drina thanks to burden- 73 Warajanga Marnti Warranja – together we
breaking technology walk on country
19 New focus on type 2 diabetes 76 FASD conference unites policy, science
20 Friendly Schools goes from strength to and lived experience
strength 78 Parents helping to put FASD into
22 Landmark folate research recognised as perspective
major public health achievement 79 Driving a vaccine revolution
24 Unique CliniKids a marriage of research 81 Vital role for Telethon Kids
and practice 82 Global consortium aims to protect babies
26 New friend to improve social attention of from their first week of life
kids with autism 83 Bill & Melinda Gates Foundation grant aims
27 National Guideline provides uniform to prevent deadly infections in early life
approach to autism diagnosis 84 People power takes tiny study to the next
28 Campaign pays off as alcohol labelling level
gets green light 86 Karratha family jump at chance to join
30 Banksia Hill Project’s ripple effect sleep study
32 Alcohol screening tool transforming 88 Collaboration key to wet cough
maternity practice prevention
35 Atlas maps a pathway to happy, healthy 92 Child removal data fuels case for change
childhood
36 New drug therapy provides hope for kids
with cystic fibrosis
IN THE PIPELINE
38 Game aims to alleviate depression for 96 Embracing the mental health of our
trans youth children and young people
40 Helping hand on home stretch to 100 Busting myths around stillbirth
adulthood 102 WA data crucial to key stillbirth finding
103 Helping kids get the most out of school
106 Energy drinks not OK for kids
PARADIGM SHIFT 108 Personalised analytics propel rare disease
46 Rapid response to e-cigarette findings diagnoses
49 Let the sun shine in 110 Ending the cycle of ‘not knowing’
52 Grant giving wings to a generation of 111 Big data science may help unlock simple
Indigenous leaders test for asthma
55 Horses helping healing 114 Ending deadly heart disease finally within
56 Graduation goals for community our sights
researchers 117 Finding answers for Tenaya: from a sore
58 Pioneering research could be key to throat to open-heart surgery
keeping cancer in check 119 Guidelines struggle to keep pace with
Our special thanks to those who have contributed to this report: Tamara Hunter, Amy Birch, Caroline 61 WA-first technique fast tracks urgent technology
Wise, Tammy Gibbs, Elizabeth Chester, Stacey Campbell, Amanda Lewis, Alana Buckley-Carr, vaccine policy 121 ORIGINS Project grows in leaps and
Kate Harford, Kerry Faulkner, Alison Batcheler, Kim Cousins, Tobias Schoep, Robert Duncan, Tony 62 Researchers unlock key to slowing bounds
McDonough, Ross Swanborough, and the researchers and families whose stories we have shared.
leukaemia progression in kids
2 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 3
MESSAGE
FROM OUR
DIRECTOR
Jonathan Carapetis AM
In 2012, we committed to creating a new blueprint Our Impact Report shows that this is more than
for a medical research institute – one that simply rhetoric. It highlights research that is making
judges itself by its ability to make a difference. a difference. Some of our research is already
We wanted to ensure our research was being being applied to improve real world outcomes
translated into real-life outcomes for kids, young for kids. Some is well along the impact pipeline
people, families and communities. While there is and some research is changing the way we think
still a long way to go, we have taken big strides about complex problems.
forward in delivering on that promise.
Collaboration and partnerships are integral to
Fast forward to 2019, and our new strategic plan achieving our mission so we also highlight some
has an even stronger and bolder focus on impact. of the special partnerships we have with the
community, government, service providers and
Our mission is clear: to improve the health, industry.
development and lives of children and young
people through excellence in research – and Making a difference inspires all our work
importantly, the application of that knowledge. at Telethon Kids and I am grateful to have
committed staff who are passionate about living
Impact, making a measurable difference, is the up to that promise, as you will see from the stories
first of the four strategic pillars that underpin our in this report.
work.
To find out more, visit our website at
For our research to have impact, it not only needs telethonkids.org.au
to be high quality and innovative, it must be useful
and used.
That’s why we are working closely with
community, practitioners and policy makers to
set research priorities. Research also needs to be
translated and disseminated locally, nationally
Jonathan Carapetis AM
and internationally so it can lead to meaningful
Director
changes to policy and practice.
Professor Jonathan Carapetis with Nirvana in the
Discovery Centre, supported by Lotterywest
4 | TELETHON KIDS INSTITUTE
OUR The excellence of Telethon Kids Institute researchers has
been recognised at multiple State and National awards
AWARD-WINNING ceremonies over the past year, including the Queen’s
RESEARCHERS Birthday Honours, the WA Premier’s Science Awards,
and the annual WA Business News 40under40 Awards.
Professor Jonathan Carapetis AM Dr Hannah Moore
Member of the Order of Australia (AM) TEDx Speaker
In June 2018, Institute Director Professor Infectious diseases researcher Dr Hannah Moore had a chance
Jonathan Carapetis was made a Member to share her passion for the power of data to help fight disease,
of the Order of Australia (AM). The award, when she was chosen to speak at TEDx Perth in November. Dr
made as part of the annual Queen’s Moore, who is Co-Head of Infectious Diseases Epidemiology for
Birthday Honours, recognised his significant the Wesfarmers Centre of Vaccines and Infectious Diseases,
contribution towards paediatrics and spoke to a sold-out crowd about the unmatched power of data
medicine – specifically his commitment in providing the answers we need to keep kids out of hospital.
to diagnosis, treatment and prevention of
rheumatic heart disease. Later that month,
Professor Carapetis and Head of Aboriginal Dr Shannon Simpson
Health Research, Glenn Pearson, were 2019 Business News 40under40 Awards
finalists at the 2018 Western Australian of the
Year Awards. Internationally recognised lung health researcher Dr Shannon Simpson
Professor Carapetis with WA Governor Kim Beazley
was named one of WA’s top professionals under the age of 40 at the
2019 Business News 40under40 Awards. Dr Simpson won the Community/
Dr Melissa O’Donnell Social Enterprise category in recognition of her significant findings
Woodside Early Career Scientist of the Year around the long-term lung health of babies surviving preterm birth, her
substantial contribution towards including the community’s voice in
Dr Melissa O’Donnell was named Woodside Early Career research, and her volunteer work with young people going through the
Scientist of the Year at the 2018 Premier’s Science Awards, health system.
in recognition of her internationally respected research
on child abuse and neglect. Dr O’Donnell, co-lead of the
Institute’s Linked Analytics and Social Policy Team, is one
of few researchers in Australia to have extensively utilised
linked government data to investigate factors that increase Dr Asha Bowen
vulnerability to child maltreatment, and outcomes for these L’Oréal-UNESCO Women in Science Fellowship
children (see stories on her work, pages 40 and 92) .
Telethon Kids skin researcher Dr Asha Bowen was awarded a
prestigious L’Oréal-UNESCO Women in Science fellowship. Her
dedication to ending skin infections in Aboriginal and Torres
Strait Islander children made her a clear choice as one of the
Dr Melissa O’Donnell with Minister Dave Kelly most outstanding early-career female scientific researchers in
Australia. She was later featured in the February issue of Vogue
Dr Sally Brinkman
and Woodside’s Tom Ridsdill-Smith
Australia, in a spread on talented women scientists.
NHMRC Research Excellence Award
Dr Sally Brinkman, Head of the Child Health Development and Education
team and Director of the Fraser Mustard Centre in Adelaide, was honoured Penelope Strauss
with an NHMRC Research Excellence Award for being the nation’s top- AMP Tomorrow Maker
ranked applicant in the Population Health (Level 1) category of the 2018
Career Development Fellowship scheme. The awards recognise excellence Trans Pathways researcher Penelope Strauss was named an AMP Tomorrow
in the health and medical research sector by celebrating individual Maker – the first researcher from the Telethon Kids Institute to win one of the
achievements, leadership and the exceptional contributions of Australian annual grants. She was one of 43 young innovators chosen to share in the
researchers to their fields of research. Dr Brinkman’s research is focused on $1million Tomorrow Fund. Ms Strauss’s grant will help her undertake the next
improving the health and development of young children, particularly those phase of the ground-breaking Trans Pathways project, which found that young
living in highly disadvantaged communities. trans people are at high risk for suicide, anxiety and serious depression.
6 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 7
OUR RESEARCH
AT A GLANCE 2018 BUILD RESEARCH CAPACITY BUILDING
We are committed to training the next generation of researchers and ensuring we build collaborative
The impact of research can be measured in many ways. For
BUILD networks to support child health and development research in Western Australia and beyond
us at Telethon Kids, it’s about how we make a difference for
UNDERSTAND
children, families and communities.
Here, we delve into the metrics that help define our success.
TRANSLATE
This includes traditional indicators as well as the broader We join with others in large national and international
ways our research contributes to the global understanding of collaborative networks to improve the lives of children
INVOLVE disease, influences policy and practice, builds capacity and
collaboration, and has a direct effect on the lives of children.
Tackling Tackling Brain Tackling Type 1 Tackling Tackling
Rheumatic Heart Cancer Diabetes Disease Leukaemia
Disease BRAIN ARTIFICIAL Genetics CHILDHOOD
END RHD, CANCER PANCREAS FANTOM 5 LEUKAEMIA
RHD Action DISCOVERY CONSORTIUM & FANTOM 6 INTERNATIONAL
& REACH CONSORTIUM
Tackling Autism Tackling Deep Tackling Tackling FASD Tackling Bullying
AUTISM Disadvantage Cystic FASD NATIONAL
COOPERATIVE LIFE Fibrosis RESEARCH CENTRE
RESEARCH COURSE AREST CF AUSTRALIA AGAINST
CENTRE CENTRE BULLYING
In 2018, we had
126 students Enrolled through:
Curtin University 15
12 Honours
Edith Cowan University 2
4 Masters Murdoch University 5
STUDENTS FROM AROUND The University of Western Australia 100
AUSTRALIA AND ABROAD
20 MD
CHOOSE TO STUDY AT THE
University of Notre Dame Australia 1
TELETHON KIDS INSTITUTE Other 3
90 PhD
Total 126
64 PhD
Over the
past 5
years STUDENTS
have successfully obtained their
DOCTORATE
8 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 9
UNDERSTAND
Our knowledge benefits child WE PUBLISH in the most
ADVANCING
health and development INFLUENTIAL JOURNALS
KNOWLEDGE researchers worldwide, we share around the world
and publish our findings
Publications over the past 5 years
Our researchers contribute significantly to the global bank of information on child health and development
450
400
350 Total 395
We are actively collaborating with colleagues and organisations around the 300 Journal 348 361 361
320
World Map Infographic
world in a united effort to discover more about child health and development. 250 Articles*
Some of our collaborations include: 200
150
99 106
100
NORTH AMERICA EUROPE ASIA AUSTRALIA and 50
Top 10%
Journals 78 82 85
• British Columbia
Children’s Hospital
•
•
Imperial College London
Erasmus University
• Baranas Hindu
University
NEW ZEALAND 0 in their field
• Australian National University
• Children’s National • Gustav Roussy Institute • Chinese University of 2014 2015 2016 2017 2018
• Children’s Cancer Institute
Health Center • Karolinska Institute Hong Kong
• Children’s Hospital Westmead Total Articles
• Columbia University • REACH • Hong Kong University
• Harry Perkins Institute for in journals 35 41 39
• Harvard University • University Children’s • International Vaccine 31
Medical Research TOTAL Peer-reviewed with Impact 26
• Institute for Health Metrics Hospital Zurich Institute, Seoul Korea
• Menzies School of Health publications journal articles
and Evaluation • University of Amsterdam • Papua New Guinea Factor >10
Research
• Mount Sinai School of • University of Berlin Institute for Medical
• Murdoch Children’s 2014 2015 2016 2017 2018
Medicine • University of Cambridge Research
Research Institute Other publications Books and
• McMaster University • University of Helsinki • Rett Syndrome and reports
• QIMR-Berghofer Medical book chapters *articles, letters, editorials, case reports and reviews
• St Jude Children’s • University of London Comprehensive
Research Institute
Research Hospital • University of Oxford Research Institute
• SA Health and Medical
• Stanford University • World Health Organization • RIKEN
Research Institute
• University for Systems
• Starship Children’s Hospital
Biology
• University of Washington
• The University of Auckland Scientists around the world use our work on child health and development to
• University of Otago
• Yale University advance their knowledge and research
• Walter and Eliza Hall Institute
In the last 5 years our Telethon Kids has a Normalised
2018 publications have Citation Impact (NCI) of
been cited more
17,861 than 74,000 times
2017 2.56
17,291
SOUTH AMERICA which is two and a half times
• Instituto Nacional de Cancer higher than the world average.
• Universidade Federal do Rio AFRICA 2016
Grande do Norte • Baylor College Malawi 15,530
• Universidade de Sao Paulo • Uganda Heart Institute
• University of Cape Town 2015 NCI is a valuable and unbiased
Selected collaborations named 19.8% indicator of impact irrespective of
13,298 of Telethon
age, subject focus or document
We are successful at ork with us to make a difference for children 2014 type. Therefore, it allows comparisons
securing a diverse mix of e rs w Kids papers are between entities of different sizes
rtn 10,856 categorized as and different subject mixes.
funding to do great research p a
which builds knowledge on Johnson & Johnson Citation refers to a quotation or reference of our work in a highly cited. Source: Clarivate Analytics report for
ry
Telethon Kids Institute, Sept 2018
ust
health and development scientific article written by other researchers around the world
Roche
Top ind
Other income
Government We are
$6,390,380
grants and
14
collaborating with Pfizer
contracts Our researchers are regarded as of our
Philanthropic
income $76.9M
$24,640,661
6 of the TOP 10 Novartis international leaders in their field
RESEARCHERS
international
$24,316,487
pharmaceutical GlaxoSmithKline have a
companies
Non-Government
grants and contracts
10 | TELETHON KIDS$21,635,754
INSTITUTE
worldwide Sanofi
*H-index of 40 is proposed to characterise outstanding scientists likely to be found
only at the top universities or major research laboratories (Hirsch 2005 PNAS)
Scopus H-index*
GREATER than 40
IMPACT REPORT 2019 | 11
INVOLVE INFORMING
DECISION-MAKING
TRANSLATE EFFECTING CHANGE
We are working with the most relevant people around the world We ensure our research is translated into real-life outcomes that make
to ensure we make a difference for children, families and communities a tangible difference to the lives of children, families and communities
We work closely with government
to ensure our research has an The community is involved in informing Our clinical researchers are working
impact on government policy the work that we do, ensuring it to discover and trial new interventions
remains relevant and translatable to improve the health of children. We
• Vaccines including influenza, are actively involved in intervention
We provide commissioned reports studies in the following areas:
Hib, meningococcal and
to government on topics such as: • Cystic fibrosis
fetal alcohol spectrum disorder 258 pneumococcal
• Allergic disease
• Biomarkers of obesity
47
consumers and
• Diabetes
• Asthma
early years development community • Rheumatic Heart Disease
• Skin infections
bullying In 2018 at members • Rheumatic Heart Disease
committees, • Group A streptococcal PREVENTION DIAGNOSIS
Telethon Kids involved with projects
youth health infections
we had: and programs
• Skin infections • Asthma
• Hep B infections • Bronchiolitis
• Dermatitis
We partner or collaborate with
38
UNDERSTANDING • Cystic Fibrosis
state and federal • Infections & vaccines HUMAN • Autism spectrum disorders
government agencies in the • Ear disease DEVELOPMENT THERAPY • Gastroenteritis
supported by the
areas of health, eduction, Consumer and Community
• Language development AND DISEASE • Rett syndrome
justice, mental health and communities • Newborn encephalopathy • Skin infections
Health Research Network
• Obesity • Mental and youth health
• Nutrition DEVICES • Infectious diseases
• Hypospadias • Allergy
• Asthma • Cancer
with influence at the
Our researchers 62 Committees or Councils • Developmental origins of child health • Disability
are actively
involved in
state, national and
international level 59 STATE •
•
Genetic disorders
Long-term health outcomes of young
• Diabetes
• Obesity
external decision- 16 Boards adults born preterm
• Autism
making groups that
are working towards
67 NATIONAL
25 on Advisory Groups Pregnancy
improving the lives of warning labels
children and families by
being involved in: 60 Other INTERNATIONAL 37 A national guideline
for the assessment and Australian
on packaged
alcoholic WA Youth
diagnosis of autism Immunisation beverages
spectrum disorders in Handbook Health Policy
Australia 2018-2023
Our research drives
We are asked to provide our real-world changes
expertise to inform work on
child health, wellbeing and 55 TOTAL TIMES OUR
EXPERTISE WAS PROVIDED 44 TOTAL TIMES OUR
EXPERTISE WAS INVITED
through contributions
to guidelines, policy Preschool Multiple Tools for implementing National Healthy Skin
development and practice Breath Washout rheumatic heart disease Guideline; for the Prevention,
Testing: An official control programmes - Treatment and Public Health
In 2018, we contributed to*:
ATS Technical Quick Tips - 2nd Edition Control of Impetigo, Scabies,
Independent Review of the Department of Standard Crusted Scabies and Tinea
Victorian Government
WA Human Reproductive Communities 10-Yr Strategy *Selected contributions named for Indigenous Populations
Transgender Policy
Technology Act 1991 on Homelessness NSW Anti-bullying Strategy and Communities in Australia
Royal Commission into the Senate Select Committee
WA Youth
Protection and Detention of inquiry on Stillbirth Research Our research has direct commercial relevance,
Health Policy active
Children in the NT and Education
*Selected contributions named
which we protect to ensure that the inventions
have the potential to make it to the clinic
12 patents
12 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 13
TRANSLATION This research has been actively translated into policy or practice
TRANSLATION
SMOOTH SAILING FOR DRINA
THANKS TO BURDEN-BREAKING
TECHNOLOGY
S
oon-to-be teenager Drina Bucktin loves hanging out with her friends and
making the most of her new-found independence. This freedom hasn’t
always been a given, however. Drina has type 1 diabetes, a chronic
disease which means every mouthful of food — or exercise, sleeping, stress or
puberty — can affect her blood glucose levels.
Thankfully, recent diabetes technology The study, published in the prestigious
is helping the 12-year-old keep on top Diabetes Care journal, found the
of her condition and be independent, technology reduced parents’ stress and
while significantly easing the disease anxiety and improved their sleep and
burden on her family. family functioning.
A few years ago, Drina’s family took part in “Life is a lot less stressful on everyone and I
the Children’s Diabetes Centre’s ‘CGM and have a lot more freedom since using the CGM
Everyday Diabetes Care’ trial – a study which with remote monitoring – I love it,” Drina said.
explored the effect of continuous glucose
monitoring (CGM) with remote monitoring on Drina’s mum, Heidi, said the technology had
psychosocial outcomes in parents of children been life-changing for the family.
with type 1.
“Since I can share the management of her
The system works by transmitting blood blood glucose levels (BGL) with the school
glucose readings every five minutes via nurse and coaches, it (CGM) has allowed me
Bluetooth to a mobile phone or smartwatch. to pursue my professional career as I’m not
It can also share readings with other devices hanging around the school or constantly on
and send push notification alerts of highs the phone providing advice or ready to drop
(hyperglycaemia) and lows (hypoglycaemia). everything to attend to Drina,” Heidi said.
Professor Tim Jones and Drina Bucktin Drina Bucktin
16 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 17
TRANSLATION
“This study has demonstrated
“It’s been great for my sanity, my own
professional development and contribution to
the family income.”
unequivocally that the use of CGM
with remote monitoring can improve NEW FOCUS ON TYPE 2 DIABETES
the quality of life of families living with
R
Heidi said Drina had taken on more of her own type 1 diabetes — parents sleep better,
disease management knowing she had support family stress is reduced, and anxiety esearchers at the Children’s Diabetes Centre at the Telethon Kids
from those around her, while her ‘nagging’ is reduced.” Institute have begun researching type 2 diabetes to tackle the rising
mum could monitor from a distance. - Professor Tim Jones incidence of the disease among young people in Australia.
The technology had particularly made an
impact on Drina’s competitive sailing, which Professor Jones said it was important to note
included representing Australia in a competition that at the time of the study, CGM was not
in New Zealand recently. publicly funded in Australia and usage was low Type 2 diabetes (T2D) is a serious Professor Liz Davis, Co-Director of
(CGM became fully subsidised for children in and costly disease with chronic the Children’s Diabetes Centre
“We can monitor Drina’s BGL during a race April 2017). complications including accelerated and head of type 2 diabetes
without the fear of her crashing dangerously development of heart, kidney and research, said the role of food
low, and without dosing her with sugar to make “While many families who participated in the eye complications, as well as limb insecurity — the state of being without
sure she doesn’t go low,” Heidi said. study could not have afforded to pay for it amputations. reliable access to a sufficient quantity of
(approximately $5,000 annually), almost all of affordable, nutritious food — in childhood,
“We can also share the Dexcom (CGM with the participants decided to continue once the In the past, the disease was usually only was another key research area as it had
remote monitoring) with her coach so we don’t funding came through — this is telling,” he said. diagnosed in people as they got older but been shown to play a major role in the
have to be on the water every time she trains or now, younger people, including children, development of chronic diseases in kids,
races. “Before this subsidy, only 5 per cent of our are getting it. including obesity and T2D.
patients used CGM but this has risen to 70 per
cent. Our researchers have reported the “Previous research has shown that up to
“We actually get a small part of our life
incidence of T2D in children and one in five Australian children experience
and sanity back while Drina gets to join “We’re putting our patients on CGM from adolescents in Western Australia and food insecurity,” she said.
in with the other kids without mum or diagnosis now — we are about improving found Aboriginal and Torres Strait Islander
dad hanging around all the time.” outcomes and reducing the disease burden children and adolescents aged under “In one of our research projects, we are
- Drina’s mum Heidi and this technology is doing that.” 18 years have a more than 20 times seeking to determine the prevalence of
greater risk of being diagnosed with T2D food insecurity in WA’s communities, and
Professor Jones said results from this study were compared to those of non-Indigenous how it links to dietary quality, quality of life,
influencing CGM usage globally. descent. degree of over-eating, and obesity.
Children’s Diabetes Centre Co-Director
Professor Tim Jones said this was the first CGM “We are a world-recognised centre for this Centre researcher Dr Aveni Haynes is “The primary outcome of this project will
study to assess psychosocial outcomes as a type of research so what happens here will be currently working alongside investigators help to inform clinicians across WA of the
primary outcome. published and disseminated internationally and in northern Australia to try and establish barriers faced by children and families
it will add to the evidence for CGM use,” he the number of Aboriginal and Torres Strait who struggle with food insecurity and help
“Parents of a child with type 1 diabetes live in said. Islander children, teenagers and young them devise individualised treatment plans
constant fear that they will put their child to bed adults (less than 25 years) with T2D living around weight management, both to
at night, but they won’t wake up in the morning He also predicted the technology would take across Northern Australia (WA’s Kimberley prevent T2D and manage the disease.”
because their blood glucose levels have over from finger pricking – something families region, Northern Territory and Far North
dropped to dangerously low levels overnight,” have until now had to perform on children six to Queensland).
Professor Jones said. eight times a day.
“Some diabetes technologies have the This study was performed at the Children’s
potential to make life more stressful so we Diabetes Centre, a JDRF/National Health and
wanted to find out if this technology might “By working out how many young
Medical Research Council-funded Centre of
improve glucose levels and improve quality Research Excellence based at the Telethon Kids
people there are with T2D, this can
of life. Institute. be used to plan how to prevent
more young people getting T2D
in the future and how to provide
WHAT’S health services to those who
NEXT
already have it; and to reduce
their chances of getting other
diabetes-related diseases and
complications.”
“We still need to learn who benefits the most from this technology, how we can make it - Professor Liz Davis
acceptable so we have 100 per cent uptake and how we can get the data to be more
easily interpretable for families so they can manage it themselves.” — Professor Tim Jones Professor Liz Davis
18 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 19TRANSLATION
FRIENDLY SCHOOLS GOES FROM
STRENGTH TO STRENGTH
W
hat began as a small formative research project 20 years ago
has grown into a universal bullying prevention and social skills
development program which has helped countless Australian
children and their families. Now the Friendly Schools project is evolving to
meet new challenges.
Friendly Schools, led by Professor Donna Professor Cross said that as digital
Cross and the Telethon Kids Health technology had evolved, so too had School students across Australia are benefiting from Professor Donna Cross’s Friendly Schools project
Promotion and Education Research (HPER) Friendly Schools.
Team, was first developed in 1999 after
research revealed a clear need to help and “We’re increasingly working to meet the needs A review of 80 international studies
support children who are bullied, as well as their of schools and parents in managing children’s
“When this project began in indicated that
families and teachers. safer use of digital technology, in ways that
15
improve their development and learning 1999, we never envisaged that
Focused on understanding bullying, developing opportunities, and reduce harmful outcomes, our work would have the impact % of young
people
and evaluating school strategies to reduce all including cyber bullying,” Professor Cross said. it has had on school policy and
forms of bullying, and informing national and practice and children’s social experienced
international policy and practice, the program “With children using digital technology from development not only across
is now spread across 14 large empirical trials. increasingly younger ages, urgent action is cyber bullying
Australia, but internationally.”
required to promote positive digital behaviours
- Professor Donna Cross
In 2005, significant interest from schools led to and to reduce potential risks of harm.”
resources developed by the program being
commercialised and disseminated, with training Professor Cross said that despite growing More than
and support, to schools Australia-wide. It’s research investigating children’s use of “This is due to the important work being one quarter of students
conducted by the Friendly Schools staff
estimated more than 3,000 Australian schools
have used the resources to improve their school
technology and the internet, and the
consequences of this increased engagement, here at Telethon Kids, without whose aged 8 to 14
policies and practices and the wellbeing of little research had been conducted with passion, skills and willingness to build a
reported being bullied every
their students. parents to determine their needs or effective better life for children, many of these
ways of enabling them to guide their children’s results would not have been achieved.” few weeks or more often,
The resources have also been taken up by
schools in the United States, Singapore and
digital behaviour. while
9% reported
New Zealand, with Scandinavia, “Likewise, many school staff lack bullying others every few weeks or more
Canada and the United Kingdom the confidence and skills to teach
Modecki, K.L et al (2014)
investigating whether it would “With children using digital and foster safer digital technology
transfer to their schools as well. technology from use by their students, and schools
increasingly younger ages, have indicated they need support
In their 20th year of Friendly in this regard,” she said.
urgent action is
Schools’s research, the research
WHAT’S
NEXT
team are focusing on the required to promote However, she said if previous
needs of sub-populations of positive digital behaviours results were anything to go by,
more vulnerable children and and to reduce potential the Friendly Schools research
young people. The increasing risks of harm.” would continue to make a positive
prevalence of digital technology - Professor Donna Cross difference in the lives of children T. his pipeline of research is continuing, led by The University of Western Australia and
use by children is also shaping and their families for many years to Telethon Kids, with the aim of further developing and testing interventions to improve
ongoing research efforts. come. social and emotional learning practice in schools.
Next steps will include the development of an app to deliver cyber safety advice and
coaching to parents.
20 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 21TRANSLATION
Professor Carol
LANDMARK FOLATE RESEARCH Bower with some of
the original health
promotion material
developed to promote
RECOGNISED AS MAJOR PUBLIC folate intake.
HEALTH ACHIEVEMENT
T
he Public Health Association of Australia has rated mandatory folate
fortification – which led to a dramatic decline in neural tube defects – as
one of the top 10 public health achievements of the past two decades.
The move, announced in November 2018, 14.4 per cent national decline in neural
honoured the paradigm-shifting work of tube defects (NTD) such as spina bifida
Professors Carol Bower and Fiona Stanley, from 2011 to 2016, regardless of a mother’s
who in 1989 made a landmark discovery culture, age, education or choice of hospital
about the vital role of maternal dietary folate in system.
early pregnancy in reducing the risk of neural
tube defects such as spina bifida. “This drop in neural tube defects is seen across
the country and is ‘spot on’ with our modelling
Not content to establish the science – and for the level of fortification that has been
determined to see that the whole WA introduced – so it is working as expected,”
population could have access to adequate Professor Bower said.
dietary supplementation – they followed
their research up with decades of dedicated Importantly, she said fortification reduced
campaigning and advocacy. neural tube defects in the Aboriginal population
Their efforts paid off, leading
by 68 per cent, with rates dropping from 2.43
cases per 1,000 births between
DATA KEY TO POLICY WIN
initially to a health promotion 2007 and 2009, to 0.82 cases
campaign around the “That gap has now been per 1,000 births between 2011
importance of folate. It’s and 2016 – similar to that of A key tool in the push to achieve health promotion campaigns for voluntary
closed between Aboriginal mandatory folate fortification came in maternal folic acid supplement use.
estimated that about 4,000 the non-Aboriginal population.
and non-Aboriginal rates of the form of data provided by the Western
Australian children have been
neural tube defects.” Australian Register of Developmental The register continues to enable the
saved from debilitating and “In the Aboriginal population,
deadly birth defects since - Professor Carol Bower health promotion to take folic Anomalies (WARDA) – originally ongoing monitoring of the impact
health promotion efforts acid supplements before and established by Professors Carol Bower of mandatory fortification, as well as
began in 1993. in early pregnancy had no and Fiona Stanley as the WA Congenital providing data for other kinds of research
effect. However, with mandatory fortification, Malformations Registry in 1980. and serving as an important source of
When data collection showed health the rate of neural tube defects has fallen to information for policymakers and health
promotion wasn’t having the same impact that of the general population,” The first of its kind in Australia, the Registry service providers.
in Aboriginal populations as in the wider Professor Bower said. was eventually merged with the WA
Australian population, however, the researchers Cerebral Palsy Register to become “It was established as a general birth
continued to push for changes in government “That gap has now been closed between WARDA, with the State Government defects register but the very first research
policy to address the health needs of all Aboriginal and non-Aboriginal rates of neural making it compulsory to report project that we did with the data being
prospective mothers and their babies in the tube defects. developmental anomalies. collected was a study of NTD and folate,”
community. Professor Bower said.
“One of the reasons for fortifying was that you WARDA – now seen as a national exemplar
Partly in response to their continued advocacy, reach everybody regardless of pregnancy and one of the most complete registers “It has since been an important source of
in 2009 Food Standards Australia New Zealand planning, and it’s equitable because of developmental anomalies in existence information for many, many other projects,
introduced national mandatory fortification everybody gets additional folate if they eat – provided vital, high-quality data such as our work in the area of FASD, which
of wheat flour for breadmaking. This change fortified products.” demonstrating that rates of NTD remained includes efforts to extend the age at which
had a swift impact, resulting in a significant high in the Aboriginal population despite FASD can be notified to the register from six
to 15 years of age.”
22 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 23TRANSLATION
UNIQUE CLINIKIDS A MARRIAGE OF
RESEARCH AND PRACTICE
A
utism now accounts for 47 per cent of children on the National
Disability Insurance Scheme, making it a key health priority for
Australia. A unique new model developed by the Telethon Kids autism
research team marries cutting-edge research with clinical practice to offer
families innovative, evidence-based interventions designed to help kids
reach their full potential.
Launched in January this year and CliniKids General Manager Gemma Upson in early childhood will reduce their level of disability.
located at Telethon Kids’ former home said the new service aimed to address the Early intervention could be the difference, for example,
on Roberts Road, Subiaco, CliniKids is a enormous gap between research findings between a child developing speech or remaining non-
warm and modern clinic for children with in the field and their translation into clinical verbal.
developmental delays and/or autism spectrum practice. One research paper has put the lag
disorders. between research and practice at 12 years; The Institute’s autism research, led by Professor Andrew
another a staggering 17 years. Whitehouse, is regarded as world-leading – however, Ms
The model is an Australian first, not only Upson said advances had been limited by the absence
providing families with diagnostic and clinical “That’s massive in a child’s life,” Ms Upson said. of a centre like CliniKids, dedicated to new diagnosis and
psychology, occupational and speech therapy intervention methods in young children.
services, but also giving them an important “Research is obviously conducted in a very
opportunity to be part of novel research. controlled environment and sometimes that “It’s early days yet and we are busy building our programs
can’t be easily translated into the messy real and data collection systems, however feedback from
world we live in. families so far has been very positive,” Ms Upson said.
“The CliniKids model has the ability to innately Families felt reassured that services were provided in a
feed clinical expertise into our research and judgement-free atmosphere, and in a modern, purpose-
vice versa, so that we can trial interventions in a built clinic where everyone was treated with compassion.
real-life setting and also evaluate the financial
implications.” “Our families have the confidence too, that our
interventions are backed by a skilled research team which
uses highly evidence-based interventions,” she said.
“Having interventions that are
evidence based is very important but
if the cost is prohibitive to families and
service providers, it may not be widely
accepted.
The clinic is going to bridge that
gap – trial the research in a real-life
clinical setting, communicate that to
the providers, and help educate the CliniKids is supported by
community.” many donors including
the Angela Wright Bennett
- Gemma Upson
Foundation, Rowley
Foundation and the
Australian Government.
An estimated 2 per cent of Australian children
have an autism diagnosis, and extensive
research has shown that commencing therapy
24 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 25TRANSLATION
NEW FRIEND TO IMPROVE SOCIAL NATIONAL GUIDELINE PROVIDES
ATTENTION OF KIDS WITH AUTISM UNIFORM APPROACH TO
Children with Autism Spectrum Disorder be due to difficulties in visual attention
AUTISM DIAGNOSIS
sometimes find it difficult to look at that develop very early, within the first
faces or understand what others few years of life,” she said.
may be thinking or feeling. But an One of the most important policy
attention-training game developed “The results from this research may changes ever implemented in the
by researchers at the Telethon Kids indicate that games could be used to area of autism research and practice
Institute is helping to improve social skill help aspects of social skill development came to fruition in October 2018, when
development in school-aged kids with for children on the autism spectrum, the Autism CRC released A National
autism. such as understanding faces.” Guideline for the Assessment and
Diagnosis of Autism Spectrum Disorders
Researchers, led by Dr Gail Alvares, in Australia.
designed and evaluated an app-
based game that rewarded children for Telethon Kids Autism Research Team
selecting pictures of faces and ignoring Head Professor Andrew Whitehouse –
pictures of objects, like trains or clocks. who is also Chief Research Officer of
Using a machine called an eye-tracker, the Autism CRC – and Telethon Kids
children were measured on how they autism researcher Dr Kiah Evans led the
looked at faces and objects before and development of the Guideline, sitting on
after playing the game. the executive committee responsible for
the document. – both by people in Australia and
After playing the game for 15 minutes, overseas – and is being used by major
children more frequently looked at Dr Evans said the Guideline brought diagnostic services providers around
pictures of faces first rather than objects, disparate state and territory assessment Australia,” Dr Evans said.
and this was compared to a group of and diagnostic practices together into
children who played a similar version of a coherent, streamlined benchmark In addition, an interdepartmental
the game without being rewarded for practice, with the aim of providing working committee is meeting at
selecting faces. consistency for people on the autism a Federal level to discuss wider
spectrum nationally. implementation of the Guideline, and
Although the research is still ongoing, two new research projects have kicked
Dr Alvares said the results suggested “Since being launched in October off, examining clinicians’ uptake of the
this kind of training early in a child’s life the Guideline has already been Guideline and its implementation in a
may have the potential to improve their downloaded more than 9,500 times rural setting.
social behaviours in later years.
“We believe that difficulties in social
development for kids with autism may Dr Gail Alvares
Professor Andrew Whitehouse
and Dr Kiah Evans
26 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 27TRANSLATION
CAMPAIGN PAYS OFF AS ALCOHOL
LABELLING GETS GREEN LIGHT
F
ollowing strong evidence and lobbying by Telethon Kids Institute
researchers, along with others including the Western Australian
Government, labels to warn women about the risks of drinking during
pregnancy are to become mandatory on all alcohol sold in Australia and
New Zealand within two years.
Leading Fetal Alcohol Spectrum Disorder Minister Roger Cook, agreed to introduce
(FASD) researcher Professor Carol Bower, mandatory labelling at a meeting of the
who was instrumental in presenting evidence Australian and New Zealand Ministerial Forum
to support the decision, said mandatory on Food Regulation.
labelling was part of multiple actions required
to reduce birth defects caused by prenatal Food Standards Australia and New Zealand
alcohol use. (FSANZ) are now developing consistent labels
and standardised messages, with consumer
“This is one important step in a suite of health testing and input from the researchers, industry
promotion and public health approaches and public health organisations. These are
because this is a product that actually causes expected to be ready by the end of 2019.
birth defects,” she said. “Women ought to be
given that information and there is no more “This is a major win for clarity – every alcohol
immediate place than on the product.” product will have the same message on the
bottle and packaging, with specifications to
In early 2018, the Food Regulation Standards the size, colour and wording so there will be
Committee invited Professor Bower consistency,” Professor Bower said.
to make a submission as a public
health stakeholder to the targeted Following a ‘wash-in’ period of 12
consultation regarding policy options “This is a major win for months to allow time for existing
for pregnancy warning labels on clarity – every alcohol alcohol product to leave the
packaged alcoholic beverages. shelves and industry to work to get
product will have
the new labels on, it is expected
the same message
Professor Bower, along with Dr that all alcohol will carry the new
Roslyn Giglia and Dr Martyn Symons, on the bottle and labelling by 2020.
made the submission on behalf of packaging, with
the Institute and the FASD Research specifications to “Once in place, the mandatory
Australia Centre of Research the size, colour and labelling needs to be evaluated to
Excellence, of which Professor Bower wording so there will determine if women are seeing the
is Director. Their review found a be consistency.” labels and clearly understanding
five-year trial of voluntary labelling why not drinking alcohol in
- Professor Carol Bower
since 2011 had been unsuccessful, pregnancy is the safest option,”
with testing revealing that labels Professor Bower said.
were hard to read and had unclear
messages that could be easily misinterpreted to “We are concerned to ensure there is good
mean it was okay to consume alcohol during evidence supporting what the message is and
pregnancy. then to find out how well it has been seen and
taken note of.”
In October 2018, health ministers around
Australia, with strong support from WA Health
Professor Carol Bower
28 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 29TRANSLATION
The research also found considerable
BANKSIA HILL PROJECT’S language diversity, with less than a third of the
young people assessed speaking Standard
Australian English as a first language.
RIPPLE EFFECT Ms Kippin said these communication barriers
meant many young people were going
E
through highly verbal legal and rehabilitation
ighteen months on from the publication of its findings in BMJ Open, the processes at a significant disadvantage.
game-changing Banksia Hill Project is continuing to reshape the way The findings have led to interest in the
authorities manage and support vulnerable young people within the provision of intermediaries to help respond to
justice system. language and communication needs when
young people are engaging with police and
the courts.
The two-year study, which was the first in The training resources developed, Hayley Passmore and Natalie Kippin
Australia to assess and diagnose young delivered and evaluated by Ms Passmore
people in a youth custodial setting for were a key outcome of the Banksia Hill
Fetal Alcohol Spectrum Disorder (FASD), Project, and are now in hot demand.
revealed that more than one third of young
WHAT’S
people assessed by the team had FASD – the
highest known prevalence in a justice setting
worldwide.
The Department of Justice has commissioned
further paid training sessions for staff including
newly recruited youth custodial officers and
NEXT
community youth justice officers, and other
The team, led by Professor Carol Bower, sectors, including police, child protection Professor Bower and team are now advocating for further collaborations with
also found 89 per cent of the young people and education, are also keen to receive government, community and service providers to better respond to the needs
examined had at least one form of severe the training. In addition, Ms Passmore has of young people in the justice system. This includes strengthening health and
neurodevelopmental impairment – providing received requests to access the resources from neurodevelopmental assessments, evaluating rehabilitation programs, training the
evidence that youth with neurodisability are researchers, service providers and agencies justice workforce, and reducing the over-representation of Aboriginal people in
grossly over-represented in youth detention in worldwide. custody.
WA.
. s Passmore and members from the Telethon Kids leadership team are meeting
M
The results are still rippling through government with the heads of seven WA State Government departments, to discuss a
departments, police, custodial authorities, and “These requests are increasing rapidly
cross-government approach to upskilling frontline professionals in the justice,
the Children’s Court, and have led not only to given the global interest in FASD police, health, education and child protection sectors, to better manage
changes in policy and practice, but increased and justice-involved youth. I’m now neurodevelopmental impairments.
community understanding of FASD and seeking funding to evaluate the
widespread interest in Australia and overseas effectiveness of the training with other The team will host a WA Youth Justice and Health Forum in November, to discuss
workforces, and to develop a ‘train the the intersection between the justice, health and education sectors and collate
“The delivery of training resources, pioneered trainer’ model to ensure the training priorities from community, service providers, researchers and government.
by Hayley Passmore, to more than 100 remains sustainable.”
Banksia Hill custodial staff means they are
- Hayley Passmore
now better equipped to be able to recognise
and work effectively with young people with
neurodevelopmental impairment,” Professor
Bower said. The Children’s Court is also changing the way
it responds to young people coming before it,
thanks to the study’s findings. Judicial officers
“Here in WA the findings, and the have relied on assessment reports prepared
continuing advocacy and analysis by by the team to better understand mitigating
team members, have changed the factors for sentencing; and there’s growing
way the justice workforce engages recognition of the language and other barriers
with these young people.” faced by many young people as they try to
- Professor Carol Bower
navigate the justice system.
Follow-on research led by Banksia Hill Project
team member and speech pathologist Natalie
“We’re also seeing moves to improve the way Kippin revealed significant levels of language
police and the Children’s Court interact with difficulty among young detainees, with almost
young people with a communication disorder half meeting the criteria for language disorder.
or a different language who come into the Much of that language disorder was associated Members of the Banksia Hill Project team
justice system – another important finding.” with FASD.
30 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 31TRANSLATION
ALCOHOL SCREENING TOOL
TRANSFORMING MATERNITY
PRACTICE
A
screening tool to help midwives and other health professionals
contribute to the prevention of Fetal Alcohol Spectrum Disorder
(FASD) is changing maternity practice across WA public hospitals and
expanding knowledge about the risks of drinking alcohol in pregnancy. Behind the scenes of filming for new resources aimed at helping GPs use the AUDIT-C screening tool.
“If a child comes in at age seven with “It’s three routine questions doctors can ask
developmental issues, for example, doctors during their consultations with women to
will be able to refer to records to establish if promote a healthy pregnancy, that we hope
Alcohol risk screening and preventive In July 2018, it became mandatory to AUDIT-C was applied and then assess any will become part of their normal interaction
education are now being embedded into record alcohol risk into the WA Health history of alcohol use for its relevance in with all pregnant woman,” Ms Jones said.
routine maternity care after the validated Midwives Notification Form completed diagnosis,” Associate Professor Reibel said.
AUDIT-C (Alcohol Use Disorders Identification for every birth in Western Australia. To help She said such conversations could be
Test – Consumption) and associated Learning with the change, WA Health provided open Heather Jones, senior manager of FASD challenging but needed to be embraced,
Guide were rolled out across WA Health. access to the AUDIT-C Learning Guide to all projects at the FASD Research Australia Centre both by midwives and medical practitioners,
health professionals likely to care for pregnant for Research Excellence (FASD CRE), said for the best outcomes for both mothers and
The AUDIT-C project, funded by the WA women, including nurses, general practitioners, another key outcome of the AUDIT-C project their babies.
Department of Health and led by Associate obstetricians and Aboriginal health workers. was a move to add information
Professor Tracy Reibel during her time as a gathered as part of alcohol risk “With women who have high
senior research fellow at the Institute, comprises “By asking women about alcohol, health screening to state and national alcohol use it becomes quite a
three questions that score a woman’s alcohol professionals can then advise why the data bases. “It’s about not scaring careful conversation – they need to
intake in pregnancy, with the total score Australian guidelines recommend they should them but advising be cognisant about why they might
indicating either low, medium or not drink alcohol during “Thanks to successful advocacy them that the best be drinking,” Ms Jones said.
high risk for both herself and for pregnancy,” Associate by FASD CRE co-directors, way forward now
her baby. “We know women want Professor Reibel said. Professors Carol Bower and they know they are “Alcohol might be being used to
to be told why we are Elizabeth Elliott, along with pregnant is to try and self-medicate for a whole range of
Midwives had reported in a “We know women want others, to establish national reasons related to mental health
recommending that they don’t stop drinking, and the
previous study that they were to be told why we are mandatory reporting of alcohol issues or domestic violence. If they
drink. By advising them based reasons why.”
concerned about their capacity recommending that they use in pregnancy in each state want to stop drinking but can’t, they
to effectively ask women about on the best evidence, referred don’t drink. By advising them - Heather Jones
and territory, data collected via can be referred on to appropriate
their alcohol use in pregnancy, to in the Learning Guide, we based on the best evidence, the Midwives Notification Form services for help.”
thus hampering their ability to hope to reduce the rates of referred to in the Learning will now contribute to the WA
provide advice and support. women drinking in pregnancy Guide, we hope to reduce Health Perinatal Data Base and Australian She said women who were assessed as low
The Learning Guide was and therefore bring down the rates of women drinking Institute of Health and Welfare’s National or medium risk commonly raised concerns
then developed to improve the rates of FASD.” in pregnancy and therefore Perinatal Data Collection,” Ms Jones said. about damage from drinking and binge
knowledge, understanding and bring down the rates of FASD.” episodes before realising they were pregnant,
- Associate Professor Tracy Reibel
effective use of the AUDIT-C “This not only adds strength to ongoing sometimes even asking if they should consider
screening tool. Associate Professor Reibel said
making alcohol risk screening advocacy work, but enables researchers abortion.
standard for all pregnant women removed and policymakers to monitor the success of
Midwives who participated in an evaluation interventions and campaigns.” “It’s about not scaring them but advising them
of the Learning Guide indicated it provided the risk that women may feel stigmatised and
singled out in being asked about their alcohol that the best way forward now they know they
them with the skills to confidently and routinely Although already available to all health are pregnant is to try and stop drinking, and
use AUDIT-C in a non-judgemental way with all use.
professionals, the resources in the AUDIT-C the reasons why.”
pregnant women, and offer brief interventions Learning Guide are now being specifically
as required. A companion survey of pregnant Pregnancy medical records incorporating this
information also provided valuable information updated for general practitioners. This project, Ms Jones said broader use of AUDIT-C and its
women showed that routine questions about funded by the Western Australian Primary resources would also improve understanding
alcohol use were positively accepted, for retrospective reference, in future cases
where a child’s developmental problems were Health Alliance, will produce three short of FASD among health professionals, including
prompting them to ask more about the impact videos adapting the message to prompt those who were trained overseas and less
of alcohol on their baby’s development. being investigated.
doctors to ask, assess and advise women aware of the Australian drinking culture.
using AUDIT-C.
32 | TELETHON KIDS INSTITUTE IMPACT REPORT 2019 | 33You can also read
