InsideOut Institute to lead national eating disorder research centre with $13m Federal grant awarded to University of Sydney

InsideOut Institute for Eating Disorders, a partnership between the University of Sydney and Sydney Local Health District, will lead a national consortium of partners to develop the Centre and implement the Australian Eating Disorders Research & Translation Strategy.

The Centre will coordinate a national approach to eating disorder research and translate findings into practice, with the goal of reducing the burden on Australians living with an eating disorder and their loved ones.

Eating disorders are serious, complex mental illnesses with significant physical and mental health impacts, high mortality rates and low rates of detection. It is estimated that approximately 1 million Australians are living with an eating disorder, which is 4% of the population. Eating disorders also have one of the highest mortality rates of any mental illness.

The Centre will be led by InsideOut Institute, and will be supported by a research ecosystem within the university and a consortium of national partners, including Orygen, Australian National University, Black Dog Institute, Deakin University, La Trobe University, Monash University, NSW Health, QIMR Berghofer, University of Queensland and University of Western Australia.

InsideOut Director Associate Professor Sarah Maguire said that until recently, research innovation in the field of eating disorders has been hampered by insufficient resourcing and a lack of coherent vision and plan – with today’s announcement being an important first step in addressing inequities in funding for eating disorder research and translation.

“InsideOut is honoured to lead the national consortium to drive this change,” said Associate Professor Maguire.

“There has been a lot of government investment in treatment services for people with eating disorders in recent years. This is, of course, fantastic, and more is needed – but without research and the translation of research into practice, we cannot prevent illness nor improve treatments and health outcomes.”

“This announcement is about the future. It’s about supporting and enabling much-needed scientific breakthroughs that help prevent illness, that get people better and ensure our treatments don’t inadvertently cause harm.”

– Associate Professor Sarah Maguire, InsideOut Director

Major University of Sydney partners in the research ecosystem include the Charles Perkins Centre, Brain and Mind Centre, Lambert Initiative for Cannabinoid Therapeutics, Sydney Policy Lab, the Faculty of Medicine and Health and the Faculty of Science.

Professor Stephen Simpson, Academic Director of the Charles Perkins Centre, said:

“Having the Australian Eating Disorder Research and Translation Centre based at the Charles Perkins Centre with colleagues at InsideOut Institute and in collaboration with the Brain and Mind Centre and the Faculties of Medicine and Health and Science represents a major step in our rich multidisciplinary strategy at the University of Sydney to address the enormous challenges to health and wellbeing posed by disordered eating.”

Professor Patrick McGorry AO, Executive Director of Orygen, which will be a lead partner in the national consortium said: 

“Orygen is delighted to have the opportunity to work in a collaborative partnership with InsideOut at the University of Sydney to create a fresh approach to the understanding, prevention and treatment of eating disorders.”

“The award of this research grant to the University and partners, including Orygen, to support a long overdue wave of innovation and research in eating disorders could not have come at a more critical time with a new surge in eating disorders during the pandemic.”

– Professor Patrick McGorry AO, Executive Director, Orygen

“We are very grateful to the Federal Government for devoting vital new research funding to this neglected public health priority,” said Professor McGorry.

Professor Ian Hickie, co-director of the Brain and Mind Centre said there is an urgent need for really novel and truly innovative research that can save lives that are otherwise lost or ruined by these devastating disorders: “This Centre will strive for major breakthroughs, with particular emphasis on those interventions that can be delivered early in the course of illness, at scale, and lead to sustained recovery.”

InsideOut Director Professor Stephen Touyz says the Australian Government Department of Health should be commended for this investment.

“For the first time, this centre will bring together the country’s leading researchers to develop an integrated research agenda to transform the lives of those with the lived experience of an eating disorder,” says Professor Touyz.

“Unfortunately, current treatments for people with eating disorders confer benefit for some but others suffer endlessly with the debilitating effect of these illnesses. New innovations in treatment are sorely needed. This initial funding is an important start.”

“Building on the advances of genetics and neuroscience and the digital revolution, we now have the opportunity and momentum to generate breakthroughs in treatment. The journey has well and truly begun.”

– Professor Stephen Touyz, InsideOut Director

All of the Centre’s activities will be informed by people with lived experience of eating disorders and with Aboriginal and Torres Strait Islander peoples. 

“I feel honoured to have been asked to co-lead the Lived Experience Program, which InsideOut is proposing,” said Lived Experience Advisor Shannon Calvert.

“The Lived Experience Program that will work across all aspects of the Centre – including governance committees, all workstreams and all research areas – is ground-breaking.”

– Shannon Calvert, Lived Experience Advisor

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How we will work

The Centre’s governance structure will include a governing council led by independent Chair Ms Robyn Kruk AO, an executive working party, and a scientific committee, which will design a transparent and robust process for the funding of research trials.

A consortium of national partners include Orygen, La Trobe University, Monash University, Monash Biomedicine Discovery Institute, Australian National University, Deakin University, Black Dog Institute, University of Western Australia, University of Queensland (Institute for Molecular Bioscience) and QIMR Berghofer Medical Research Institute.

The Centre will also be informed by an international expert advisory group of world-leading eating disorder researchers and innovative thinkers, drawing expertise from Professor Janet Treasure (Kings College/Maudsley Hospital London), Professor Cynthia Bulik (University of North Carolina), Professor Daniel Le Grange (University of California), Associate Professor Cherie Levinson (University of Louisville), Associate Professor Rebecca Murphy (University of Oxford, CREDO) and Associate Professor Kamryn Eddy (Harvard University).

Our national technical advisory will provide expert technical advice on key activities of the Centre and ensure integration with relevant national efforts to avoid duplication and maximise utilisation of existing national resources – including existing mental health clinical trial networks (Professor Michael Berk, Deakin University, Lead MAGNET clinical trial network), existing mental health ECR and MCR development networks (Professor Frances Kay-Lambkin, University of Newcastle, President Society of Mental Health Research; Professor Jennie Hudson, Black Dog Institute, Director of Research), and existing mental health lived experience expertise and infrastructure (Associate Professor Michelle Banfield, ANU Lived Experience Research Unit, ALIVE Chief Investigator), as well as existing mental health research and strategy Aboriginal and Torres Strait Islander leadership (Leilani Darwin, Black Dog Institute).

Our aims

The Centre will aim to:

• Establish a robust, well governed, co-produced, inclusive and sustainable national research and translation leadership for the field of eating disorders
• Improve access to high-quality mental health care for people with eating disorders and their families
• Implement the Australian Eating Disorders Research & Translation Strategy (2021–2031)
• Conduct and coordinate high-quality research and translation that impacts outcomes and addresses Australia's Top 10 eating disorder research and translation priorities
• Produce research and translation outcomes grounded in real world settings that inform policy and lead to practice change
• Set the national standard for co-production with experts by lived experience, Aboriginal and Torres Strait Islander peoples, people from diverse backgrounds and clinicians as part of routine practice in research and its translation
• Support and generate an inclusive and sustainable culture of research excellence

Our workstreams

The workstreams of the Centre will be led by consortium members in collaboration with InsideOut including:

• The Lived Experience Research Co-Production Program – led by Ms Shannon Calvert (Lived Experience Educator) and Associate Professor Genevieve Pepin (Deakin University)
• The Aboriginal and Torres Strait Islander Eating Disorders Co-Production – led by Ms Leilani Darwin and Ms Stacy Vervoort (Black Dog Institute, Aboriginal and Torres Strait Islander Strategy).

National Network leads Associate Professor Elizabeth Rieger (ANU) and Professor Stephen Touyz (University of Sydney) will work with the Centre to establish a broad-reaching research and translation network which covers all geographic jurisdictions (including regional and remote), ensuring that local connections are fostered and developed.

Translation workstream leads, Professor Antonio Verdejo-Garcia (Monash University, Turner Institute) and Professor Rosemary Purcell (Orygen, Director of Knowledge Translation), will work with the Centre to develop and progress a Translation Blueprint and with Consortium members to conduct a range of activities focused on establishing and expediting translation-focused projects nationally which are coordinated and supported through the Centre.

Workforce development workstream leads Associate Professor Leah Brennan (La Trobe University) and Dr Clair Foldi (Monash BDI) will work with the Centre to leverage the Consortium's academic training units to plan and undertake a range of workforce development activities.

Three Top 10 Research Streams will be developed and overseen by InsideOut and partners Orygen and Brain Mind Centre, with funding applications from the Consortium (in collaboration with Network members) adjudicated by the Scientific Committee (which will evaluate applications according to agreed criteria/processes).

The three streams for this grant round focus on the following Top 10 priority areas:

1. Research Stream 1: Identifying Risk (Top 10 #2 Risk and Protective Factors)
2. Research Stream 2: Very Early Intervention (Top 10 #4 Early identification and #7 Early Intervention)
3. Research Stream 3: Individualised Medicine (Top 10 #9 Individualised Medicine)