ProfessorElizabeth Elliott

Professor Elizabeth Elliott AM FAHMS FRSN MD MPhil MBBS FRACP FRCPCH FRCP is a Distinguished Professor in Paediatrics and Child Health at the University of Sydney; Consultant Paediatrician at the Sydney Children’s Hospitals Network (Westmead); Director of FASD Research Australia NHMRC Centre of Research Excellence and holds a prestigious and highly competitive National Health and Medical Research Council of Australia Leadership Fellowship (L3), her fourth Fellowship.

 

Elizabeth is an elected Fellow and Council member of the Australian Academy of Health and Medical Science, Fellow and James Cook Medallist of the Royal Society of NSW, and an Inaugural Fellow of the Academy of Child and Adolescent Health. She has specialist qualifications in paediatrics from the UK and Australia and is a Fellow of the Royal Australasian College of Physicians; the Royal College of Paediatrics and Child Health, UK; and the Royal College of Physicians, London. She has a research Doctorate in Medicine (oral rehydration therapy); and a Masters in Philosophy in Public Health (haemolytic uraemic syndrome) from the University of Sydney. 

 

Elizabeth has dedicated her career to advancing the human rights, health and quality of life for ill and disadvantaged children in Australia and beyond, through education, research, clinical care and advocacy. Specific examples include promoting the health and human rights of children disabled by rare diseases, fetal alcohol spectrum disorder (FASD) and vaccine-preventable and other infectious diseases; Aboriginal and Torres Strait Islander children, particularly in remote Australia; asylum seeker and refugee children, particularly in offshore Immigration detention; children receiving cochlear implants; children with Female Genital Mutilation (FGMC); and children with cerebral palsy, including in developing countries in our region, particularly Vietnam.

 

She vigorously promotes gender equity for girls and women and Chairs the Royal Australasian College of Physicians Gender Equity and Diversity in Medicine Committee. She was a member of the Advisory group to guide the University of Sydney’s participation in the Athena Swan program, which aims for gender equity in STEMM (science, technology, engineering, maths and medicine) and the Sydney Medical School’s gender equity committee and an invited speaker for GenWomen at the 2018 Sydney Science Festival onWomen in STEMM smash the glass ceiling.

 

Elizabeth is the senior advisor on child health for UNICEF Australia and consultant to the WHO and the US National Institute on Alcohol Abuse and Alcoholism. She chairs the Australian Government’s national FASD Advisory Group and is a Board Director for the National Organisation for FASD and Royal Far West. She is widely published and has been recognised for her work nationally and internationally.

 

Contributions to the Royal Australasian College of Physicians (RACP)

In 2011 Elizabeth received the John Sands Medal from the Royal Australasian College of Physicians (RACP) for her sustained contribution to the RACP, including as a member of the Divisional Committee for Paediatrics and Child Health; Paediatric Scientific Program Committee; Paediatric Workforce Committee; Scientific Program Committee; Research Advisory Committee; and Inaugural Paediatric Research Committee (Chair); and as a member of groups to develop policy on Inequity in Child Health, Alcohol Use and FASD. She Chaired the Scientific Program Committee for the International Paediatric Association Congress (4000+ delegates) which was hosted by the RACP in Melbourne in 2013 and was a member of the Congress Committee.

 

She supervises paediatric trainees and has developed Continuing Education Modules on Indigenous Child Health and FASD. She has represented the College as a Witness e.g. in the NSW Government’s Inquiry into Alcohol Advertising and frequently contributes to advocacy documents e.g. the RACP’s alcohol policy and response to revision of Medicare Item numbers pertaining to children with FASD and other complex neurodevelopmental disorders. She was a spokesperson for the RACP’s Kids Covid Catch-up campaign and at the 2023 roundtable on the health of children in care and protection services at Parliament House Canberra. Currently she chairs the RACPs Gender Equity and Diversity in Medicine Committee. In 2017, she received the Howard Williams Medal from the RACP, its highest award in paediatrics and child health, for exceptional contribution to paediatrics in Australia and New Zealand, and delivered the Howard Williams Oration at the RACP Annual Congress. In 2018, following nomination by the RACP, she received the Outstanding Asian Paediatrician Award from the Asian Pacific Paediatric Association at their congress in Indonesia.

 

Children with Fetal Alcohol Spectrum Disorders (FASD)

Elizabeth has been involved in clinical services, research, advocacy and policy development to improve the lives of children with Fetal Alcohol Spectrum Disorder (FASD) and women using alcohol in pregnancy for over 20 years. She is regarded as the pre-eminent advocate, researcher and clinician for FASD in Australia and has an international reputation in the field. For example: in September 2016 she gave the opening keynote address at the European Congress on FASD on advances made in Australia and has delivered keynotes at FASD conferences in Vancouver and at the Royal Society of Medicine, London and to lawyers, teachers and health professionals.

 

She advocated for, and is Head of, the state-wide NSW Health clinic for assessment and management of FASD. Funded by the NSW Ministry of Health and Australian Government Department of Health. She is Co-Director of the Centre for Care and Intervention for Children Affected by Drugs and Alcohol (CICADA), which offers a lifespan approach to children and adolescents affected by alcohol. She was Co-Director of the NHMRC Centre for Research Excellence on preventing harms from alcohol in pregnancy (FASD Research Australia) established in 2016; and was joint Chief Investigator on a national project to develop the Australian Guide to the Diagnosis of FASD, funded by the Australian DoH and published in August 2016.

In recognition of her leadership in FASD she was appointed Chair of the Australian Government’s National FASD Technical Network to advise on a coordinated national policy approach to the diagnosis, management and prevention of this tragic disorder and subsequently as Chair of the national FASD Advisory Group, reporting to the Australian Minister of Health. Other roles influencing national health policy include Deputy Chair of the Intergovernmental Committee on Drugs Working Party on FASD; Member of the NHMRC committee to develop Australian Alcohol guidelines; and Member of the RACP Alcohol Policy group. She contributed to the Australian Medical Association (AMA) national forum on alcohol harms and their September 2016 policy statement on FASD. At the 2019 AMA annual meeting she received unanimous support for a policy statement urging all doctors seeing pregnant women to ask and give advice about alcohol use in pregnancy. She was an invited Expert Witness for government Inquiries into FASD in Australia, FASD in NT, Alcohol Misuse in Aboriginal and Torres Strait Islanders, Alcohol Advertising Codes in NSW, and Accessibility and Quality of Mental Health Services in Rural and Remote Australia.

 

She was invited by the Australian Minister of Health to participant in the 2017 round table to discuss the next National 10-year, FASD Strategy (2018-28) and was interviewed as a consultant on the strategy, which was released in November 2019. In 2018 she was invited to attend the Australian Health Minister’s round table to review the draft 2019 National Alcohol Strategy. She was an expert consultant for Food Standards Australia and New Zealand warning labels about the harms of alcohol use in pregnancy, which were legislated from July 2023. She was joint convenor of the Australasian FASD Conferences in 2018 and 2020 and convened the First 1000 days theme for the International Society on Biomedical Research Congress into Alcohol in 2024.

 

Elizabeth received Australian government funding for development of a national Guide to the Diagnosis of FASD, a national Hub (website), a national case Register for FASD, a program to evaluate and disseminate the Diagnostic Guide, and a series of online e-learning modules on alcohol use in pregnancy and FASD which she developed with clinical colleagues. She leads several NHMRC-funded projects on alcohol in pregnancy and FASD including the Lililwan (FASD prevalence), Jandu Yani-U (positive parenting) and Bigiswun Kid (adolescent) projects in remote Fitzroy Valley WA.

 

Internationally, she was a Member of the group to develop World Health Organisation guidelines for identification and management of alcohol misuse during pregnancy; a Member of the group to develop an International Charter for the Prevention of FASD; and an invited participant and speaker on FASD at the inaugural WHO Global Summit on alcohol, drugs and gambling in Geneva in 2017. She has been a member of the International Expert Committee for the annual International FASD conference in Vancouver since 2007. She is an invited member of the National Institute on Alcohol Abuse and Alcoholism USA committee for the international standardisation of the diagnostic criteria for FASD for research purposes (2019).

In recognition of her contribution to this field, she received the Australian Medical Association Excellence in Healthcare Award for 2018. She was made an Ambassador for the National Organisation for FASD (NOFASD); a ‘Champion’ of the Foundation for Alcohol Research and Education’s Pregnant Pause Campaign; and a ‘FASD Pioneer’ for the International ‘Red Shoes Rock’ campaign to raise awareness on for FASD around International FASD day on September 9^th, 2018-9. She became a NOFASD Board Member in 2018. In 2019 she won the Starfish Award for her contributions to FASD research at the 8^thInternational FASD conference run by the University of British Columbia in Vancouver, Canada. In 2022 she won the Leadership award from NOFASD.

 

Children with rare diseases

In 1993, in response to a lack of Australian data on the rates of disability caused by rare disorders, Elizabeth founded and remains Director of a unique national research resource, the Australian Paediatric Surveillance Unit (APSU). Each month over 90% of Australian paediatricians contribute unique data to the APSU and over 400 clinicians and researchers throughout Australia have used the APSU to conduct research into more than 75 rare conditions. National research groups (the National Centre for Immunisation Research, Kirby Institute) and government (Communicable disease branch, Therapeutic Drugs Administration) have also used the APSU. APSU data have provided the evidence-base to enable health promotion for Australian children with disability. In 2008 Elizabeth convened a committee to draft and publish a national plan for rare diseases and was profiled in the Lancet as a champion for rare diseases. She was Deputy Chair of the National Rare Diseases Co-ordinating Committee and an Australian representative on the international advocacy group Orphanet.

 

She helped establish, and in 2000 was elected Chair of, the International Network of Paediatric Surveillance Units (INOPSU). She has advised on the development and conduct of research by surveillance units internationally. She has given numerous keynotes on APSU and the value of surveillance for promoting child health outcomes including to meetings of the International Pediatric Association, the Royal College of Paediatrics and Child Health UK, the Royal Society of Medicine and the International Network of Pediatric Surveillance Units. She gave an invited talk at the 2016 INOPSU meeting on the impact of her Fetal Alcohol Spectrum Disorder surveillance study on clinical practice, child care and policy in Australia. Her current research interests include a range of rare disorders - complications of influenza, HIV/AIDS, FASD and microcephaly, including due to Zika virus.

She was appointed by the Minister of Health to the Life-Saving Drugs Committee to provide advice on funding for new treatments for ‘orphan’ or rare diseases. She is a Member of the Specialist and Consultant Physicians Clinical Committee to review Item numbers for the Medical Benefits Scheme, including for FASD.

 

Aboriginal children

Elizabeth is well known nationally and internationally for her contribution to Aboriginal children affected by FASD in remote Australia, where FASD has been described as an humanitarian crisis. She was the clinical and research lead in the Lililwan project, Australia’s first FASD prevalence study which involved identifying and preventing FASD and providing equity of access to education and health services for affected children. The project has raised community awareness, empowered women, assisted in maintaining alcohol restrictions and identified the need for enhanced services. It has led to increased resources, including for a positive parenting program funded by the NHMRC, which she has led in the Fitzroy Valley since 2016. The data have contributed to clinical guidelines, scientific and media publications and presentations and 6 PhD theses. The results of the Lililwan study have had a huge impact nationally and internationally, being included in parliamentary debates and inquiries, includingFASD: The Hidden Harm, the House of Representatives Inquiry into the prevention diagnosis and management of FASD. This subsequently resulted in >$80 million in government funding nationally for FASD.

 

The Lililwan project was commended in the 2010 Social Justice report by the ATSI Human Rights Commissioner Mick Gooda as a model for engagement for research with Aboriginal people and collaboration between indigenous and non-indigenous peoples. Study results and a film produced during the Lililwan project (Tristan) were presented by Elizabeth and Aboriginal and other colleagues the United Nations Forum for Indigenous Issues in New York in 2012. In announcing additional funding for FASD in September 2016 Australian Health Minister Susan Ley said “The new funding will build on the important work we have commenced. Evidence-based models of support will be rolled out for communities battling high FASD prevalence and its effects, with the benchmark being the successful Fitzroy Crossing Marulu Lililwan Project in Western Australia. This led the way in primary intervention approaches, with significant reductions in alcohol consumption in pregnancy.” Elizabeth now leads the Bigiswun Project, a longitudinal study of health and well-being the Lililwan cohort in the Fitzroy Valley. She also led projects to introduce a politive parenting program, examine consent for research in Aboriginal communities, review barriers to health service access, and to develop models of care including use of TeleHealth.

 

Elizabeth has been a member of the Research Advisory Board for the Poche Institute for Indigenous Health at the University of Sydney, and the Committee to develop an Indigenous Research Strategy for the University of Sydney. In 2019 she joined the Board of Royal Far West, which provides services to children in remote and regional Australia.

 

Asylum seeker and refugee children

Since 2014 Elizabeth has acted as a Paediatric Consultant to the Australian Human Rights Commission (AHRC) on the health and well-being of children in Immigration detention centres in Australia and offshore. This included visits with the Commission to Christmas Island (July 2014) and Wickham Point (October 2015) detention centres; appearing as an Expert Witness to the national Inquiry into Children in Immigration Detention; contributing to the Inquiry report (The Forgotten Children); attending meetings with the AHRC and the Immigration Department; acting as a media spokesperson on behalf of children and for the AHRC; and authoring two influential reports outlining the detention centre environment and the state of health and mental health of children there. This work has received international attention and has resulted in a significant softening of government policy, indicated by the release of many children into community detention and the failure to return children to Nauru from onshore detention centres.

She has represented the cause of children in detention as a keynote speaker at numerous national forums including those convened by the AMA, the National Federation of Teachers, the National Nurses Association, the NSW Bar Association, The Sydney Children’s Hospitals Network, NSW Health, NSW Legal Aid and medical students for refugees. She has participated in public protests against the arbitrary detention of children and acted as an expert witness in a successful litigation brought by a child detainee. She advised the AMA on their Asylum Seeker policy. She is a member of theGet Kids off Naurucampaign andDoctors-4-Refugees.

 

Child survivors of Female Genital Mutilation or Cutting

After receiving funding from the Federal Government, Elizabeth led research that resulted in three seminal publications on FGM/C. This work provides the first international review and Australian survey on health professionals’ knowledge of and attitudes to FGM/C and the clinical experience of Australian Paediatricians regarding FGM/C in children. It indicates that FGM/C is seen in children living in Australia (most often African refugees), is performed here, and that paediatricians are asked to perform FGM/C. It indicates the need to better support paediatricians to ask about and examine for FGM/C and to recognise the populations at risk and the origins of the practice. It highlights the need to provide health professionals with guidelines about how to recognise and manage FGM/C in a sensitive way and their obligations regarding mandatory reporting to child protection authorities.

 

Following completion of the research Elizabeth convened a multi-disciplinary, cross-sectorial conference on FGM/C which at the Australian Human Rights Commission. Elizabeth regards FGM/C as a violation of human rights and a form of gender-specific violence and is committed to seeing the end of FGM/C in Australia. She is an advocate and mentor for girls and women survivors of FGM and has also acted as an Expert witness in court proceedings relating to FGM. She collaborates with the National Organisation against FGM; is a frequent presenter at scientific conferences and in the media; and supports UN and WHO policy to empower women and communities to end the practice of FGM.

 

Children with vaccine-preventable and infectious diseases

In 2007 Elizabeth jointly established the Paediatric Active Enhanced Disease Surveillance (PAEDS) system for inpatient disease surveillance with Prof Peter McIntyre and is a member of its executive. PAEDS enables collection of timely and detailed clinical and laboratory data to complement APSU data and now runs in 6 Australian States/Territories. PAEDS was invaluable in monitoring the 2009 influenza pandemic and the project grant for which Elizabeth was CIA was named one of’10 of the Best’of hundreds of NHMRC funded projects in 2013. Another PAEDS study identified the small risk of intussusception following the newly developed rotavirus vaccine in children, prompting a manufacturer’s warning. PAEDS has been highly collaborative and productive, is internationally recognised as a novel,,valuable disease surveillance system and has contributed new knowledge that has been translated to prevent and manage infectious diseases. PAEDS has received Australian, State and Territory government funding. An NHMRC Partnership Grant received in 2016 enable expansion of the work done by PAEDS, with a focus on pertussis and influenza.

 

Children in developing communities

Elizabeth has worked in India (Heinz Fellowship from the British Paediatric Association), Vietnam and the Asia-Pacific region. For 12 years she led the Maternal and Child Health program in Dien Bien Province, Vietnam for the Australia-Vietnam Medical Foundation (Hoc Mai). This included teaching, research and training of health professionals who have limited access to continuing education. An important contribution has been the education of women, particularly mothers in health literacy, a key determinant of child health and well-being (work funded by AusAid). She also collaborates in research in Hanoi. The work on congenital rubella syndrome enabled advocacy for universal access to childhood vaccination in Vietnam. With two grants from the Cerebral Palsy Alliance she has established a surveillance mechanism to identify children with cerebral palsy (CP) in Hanoi hospitals and document their disability and needs. This work will provide the first such data from Vietnam; enhance understanding of the causes and management of CP in Vietnam; and enable advocacy for access to diagnosis, appropriate care and community awareness. The project includes a training program in Australia and Vietnam for Vietnamese health professionals. Recently she received funding from the Department of Foreign Affairs and Trade for a study on barriers and facilitators of immunisation for Vietnamese children with disability.

 

She was an instigator of and is a Theme Leader (Disability and Chronic Disease) in the newly established University of Sydney Global Child Health Network and recently presented this at the joint meeting of Asian Pacific and Indonesian Paediatric Associations. She is a Member of the Sydney Southeast Asia Centre and the Sydney Vietnam Research Network. In 2018 she received the Outstanding Asian Paediatrician Award from the Asian Pacific Paediatric Association at their congress in Indonesia.

 

Significant contributions to science

For over 40 years Elizabeth has established and sustained a reputation for high quality laboratory, clinical and public health research and demonstrated leadership in research in the fields of paediatrics, gastroenterology, evidence-based paediatrics, rare disorders and FASD. She previously held academic positions in the Universities of London and Leicester, UK. At the University of Sydney her past roles include Sub-Dean and Acting Associate Dean for paediatrics and Warden of the Clinical School. She has had Honorary Professorial Appointments in the University of Sydney’s School of Public Health and the George Institute for Global Health. She is a mentor and advocate for women in medicine and science and for Indigenous researchers.

 

Elizabeth’s major research contributions include: i) the development of effective oral rehydration solutions (ORS) for gastroenteritis, including cholera, using animal and human intestinal perfusion models and clinical trials. These studies informed composition of WHO and commercial ORS. 2) new understanding of the mechanism of gut injury in animal models of intestinal inflammation from EnterohaemorrhagicE. coli; 3) description of the aetiology, epidemiology, management and prevention of Haemolytic Uraemic Syndrome in Australia and internationally; 4) provision of new data on the epidemiology of numerous rare childhood disorders nationally and internationally; 5) evaluation of children before and following Cochlear implantation and understanding the impact of co-existing disability on outcomes; 6) understanding the impact of rare diseases on families, health professionals and services; and 7) providing extensive new knowledge regarding the diagnosis, management and prevention of alcohol use in pregnancy and Fetal Alcohol Spectrum Disorders (FASD). Translation into clinical practice and policy has been a focus in all these areas of research.

 

Track record, funding and publications

Elizabeth has a strong track record in obtaining competitive research grants, government and philanthropic funding valued at over $60 million. Her current NHMRC and other grants are valued at over $20 mill. She has held two NHMRC Practitioner Fellowships (2007-11 and 2012-2017) and a Medical Research Futures Fund Next Generation Fellowship. She is Director of a NHMRC Centre of Research Excllence in FASD (2026-2030) and was previously Co-director of a NHMRC Centre for Research Excellence in FASD in Perth and Sydney (2016-20) and was CIB on a Partnership Grant with Hunter New England Population Health (2016-18) which aimed to change midwifery practice regarding alcohol use in pregnancy. She holds a partnership grant with Royal Far West on service delivery in remote Australia. She is CIA on an NHMRC project grant to increase capacity for FASD diagnosis in the Cherbourg Indigenous community in Queensland; CIB on an NHMRC project on Positive Parenting for children with FASD in the Fitzroy Valley; CIC on a follow-up study of a birth cohort in Victoria; CI on a Partnership Grant to reduce vaccine-preventable diseases; and CI for a randomised trial on cannabinoid for severe behavioural difficulties in children with intellectual disability.

 

Elizabeth has over 400 publications, including over 300 peer-reviewed papers and many research and government reports and book chapters. Her H-index = 66 and she has over 16,800 citations. She is Editor or author of five medical textbooks: Evidence Based Pediatrics and Child Health (BMJ Books 2000, 2004); Evidence-based Pediatric Infectious Diseases (Blackwell Books 2007); Evidence-based Statistics Workbook (Blackwell Books 2008); Scientific Writing: Easy when you know how (BMJ Books, 2002). She supervises postgraduate and honours students and advanced trainees in paediatrics. She is frequently invited to speak in Australia and overseas and contributes to public debate via the media and as a witness to Government Inquiries. Her career and research have been profiled three times in theLancetand twice inInternational Innovations.Her research on FASD, alcohol in pregnancy and commentary on children in immigration detention have featured onRadio NationalAll in the Mind,Life Matters, andBreakfast,ABC’s The 7.30 Report, The DrumandLatelineSBSInsightandLiving Black, Channel 7 Sunrise, BBC World,theGuardianandThe Conversation.

 

National and International Research Profile

Elizabeth is a research leader nationally and internationally. She is Founder and Director of the Australian Paediatric Surveillance Unit (APSU) and jointly established the Paediatric Active Enhanced Disease Surveillance (PAEDS) system for inpatient disease surveillance. She has contributed as elected President of the Paediatric Research Society of Australia and New Zealand; and elected Chair of the International Network of Paediatric Surveillance Units; and Chair of the Research Committee of the Paediatric Division of the Royal Australasian College of Physicians (RACP). She Chaired the Scientific Program Committee for the 27^thInternational Paediatric Association Congress (2013) and was a member of the Congress Organising Committee. She is chair of the national FASD Advisory Group. Elizabeth has expertise in translation of research into clinical practice and policy and established the Centre for Evidence Based Paediatrics, Gastroenterology and Nutrition in Sydney.

 

Examples of other significant professional contributions to research include membership of the: Poche Institute Research Advisory Board; Cure Kids New Zealand Research Committee; Murdoch Children’s Research Institute Research Advisory Group; New Zealand Paediatric Surveillance Unit Scientific Review Panel; International Expert Planning Committee for the International Conferences on FASD, Vancouver, Canada 2111-19; and National Polio Expert Committee (Deputy Chair). She was a past member of the DoH Scientific Influenza Pandemic Advisory Group; Greater Metropolitan Clinical Taskforce (NSW Health); AIHW National Birth Anomalies Steering Committee (Chair); and the Regional Certification Committee for Polio (DoHA & WHO). She regularly reviews for granting bodies including the NHMRC and as a member of the Practitioner Fellowship Panel and the Centres for Research Excellence Panel and is a Member of the Translational Faculty (child health).

 

Community contributions and recognition

Past and present community contributions include: membership of the Expert Panel ofBaya GawiyChildren and Family Centre, Fitzroy Crossing; Board Member, Institute of Creative Health; SMILE Foundation Board; and Council of the Women’s College, University of Sydney,Marulustrategy group to address FASD in the Fitzroy Valley. She was an Ambassador for NSW Guides; a Champion for the Foundation for Alcohol Research and Education’s Pregnant Pause Campaign; Ambassador for the National Organisation against FASD; and Pioneer in FASD for the International FASD Red Shoes Rock campaign. She is currently a Board member of the Hoc Mai Australia-Vietnam Medical Foundation; the National Organisation for FASD; Cure Kids Australia; and Royal Far West. She is a member of the Steve Waugh Foundation Medical Advisory Committee; and the Director’s Circle, Museum of Contemporary Art in Sydney. She is an elected Member of Chief Executive Women and spokesperson on child health for UNICEF Australia.