Research Australia's INSPIRE Issue 19 - A focus on data in health and medical research by Research Australia

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A FOCUS ON HEALTH AND MEDICAL RESEARCH DATA

FOREWORD Researchers are generating increasingly larger amounts of data that provide the opportunity for new and deeper insights into human health and disease. Exponential digital disruption, machine learning, and artificial intelligence to name but a few, of the advancements, are bringing a digital revolution in healthcare which will easily match the progress of the biological revolution of the 21st century.

t is against this backdrop that Research Australia advocates to harness the transformative p owe r o f d a t a to a c c e l e r a te advances in health. The benefits are for us all from the research that underpins the clinical decisions and ultimately the outcomes for us as patients and health consumers. There is a world of data and the digital possibilities, and we believe it needs to be available, accessible and shared, obviously ensuring the requisite privacy protections. Tapping into this potential is what we are encouraging, encouraging awareness and oppor tunity and ultimately, tremendous outcomes. In this edition of Inspire, Research Australia is showcasing what happens when the best minds work through vast amounts of information and find the utility. E v e r y d a y, p r i m a r y c a r e a n d preventative health initiatives are being enabled and accelerated through technology, including via the outstanding digital health platforms of one of our Foundation Members Telstra Health. Their fascinating article talks about three guiding principles which are strong imperatives for

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improved creation and collection of quality health data and technologies to enable the sharing and analysis of these data.

that in future years, these advances are so ‘business as usual’ as to be unremarkable. The question is, ‘how do we get there?’.

The George Institute is searching for better treatments for the world’s biggest health problems like heart and kidney diseases, stroke and diabetes. They explain how vital the role of data and technology is in health and medical research for the reduction of healthcare inequalities and gaps in emerging markets and underserved populations.

Research Australia will continue to search and advocate for these big ideas and encourage pathways for Australia to shift the dial in delivering a global exemplar of the best health system possible, one with all the trimmings!

Appropriately, The Last Word in this issue is written by Dr Terr y Sweeney, the new CEO of one of Australia’s largest CRCs, the Digital Health Cooperative Research Centre. We are also featuring an article from the Digital Health CRC that showcases several projects they have funded through their seven-year program that brings together researchers, clinicians, the healthcare and technology sectors, governments, universities and others to help develop innovation in digital healthcare. The examples shared in this issue of the innovation in our incredible sector are simply outstanding. Our hope is

Nadia Levin CEO & Managing Director

AWARDS UPDATE: Finalists announced July 2021 Award ceremony 9 December 2021 Four Seasons Hotel Sydney

CONTENTS

Australian Health & Medical Research & Innovation

Celebrating 20 years of advocacy

Supporting Australian Scientists through Awards

Childhood dementia: it’s time to do things differently

RESEARCH AUSTRALIA

BUPA HEALTH FOUNDATION

CHILDHOOD DEMENTIA INITIATIVE

06 28 Translating Clinical Analytics from Research to practice EVIDENTLI PTY LTD

44 The impact of COVID-19: new insights from the 45 and Up Study SAX INSTITUTE

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30 Australian research centre to use Swedish big data in stroke recovery research HUNTER MEDICAL RESEARCH INSTITUTE

46 Can AI improve the accuracy of Australian mammogram results? ST VINCENT’S INSTITUTE OF MEDICAL RESEARCH

34 A renewed case for data and technology to respond to health system challenges TELSTRA HEALTH

50 Health10x: Innovation for global change THE GEORGE INSTITUTE FOR GLOBAL HEALTH

Publisher Research Australia Ltd Art Direction Matthew Ware p +61 403 844 763 or e matt@objktive.com For Advertising enquiries please contact the Research Australia office on p 02 9295 8546 or e admin@researchaustralia.org researchaustralia.org

INSPIRE ONLINE issuu.com/researchaustralia

20 CHIME provides urgent telehealth for Geelong during pandemic DEAKIN UNIVERSITY

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Four Digital Health Researchers Transforming our Health Care System DIGITAL HEALTH COOPERATIVE RESEARCH CENTRE

INSPIRE is a publication of Research Australia Ltd CHRISTOPHE KEREBEL CHRISTOPHE ABN 28 324 379 My 095 Twitter : @chriskere KEREBEL 384 Victoria Street Darlinghurst NSW 2010

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Who can submit articles? Any current member of Research Australia who would like to share a relevant story that affects their organisation including, philanthropic donations and their outcomes, research findings, and any other related health and medical research topic that affects the Australian population. Submission guidelines & deadlines For information regarding how to submit and publishing deadlines visit the Research Australia website.

36 Making the MOST of digital and faceto-face clinical care ORYGEN

40 Nanostructured surfaces reduce SARS-CoV-2 QUEENSLAND UNIVERSITY OF TECHNOLOGY

Disclaimer The opinions expressed in INSPIRE do not necessarily represent the views of Research Australia. Whilst every effort has been made to ensure accuracy, no responsibility can be accepted by Research Australia for omissions, typographical or inaccuracies that may have taken place after publication. All rights reserved. The editorial material published in INSPIRE is copyright. No part of the editorial contents may be reproduced or copied in any form without the prior permission from Research Australia. © Research Australia 2020.

THE LAST WORD

A new Centre for Health Analytics ‘Unleashing the power of data to improve data’.

The importance of funding for medical breakthroughs – what we’ve learnt from studying blood cells and cancers

UNIVERSITY OF MELBOURNE

GSK AUSTRALIA

56 The Transformative Power of data and technology in medical research DR TERRY SWEENEY, CMG

Research Australia celebrates its 20th year of advocacy for health and medical research and innovation 6 INSPIRE 019 | 2021

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The Board, staff and stakeholders of Research Australia are so proud to celebrate our 20 year anniversary as Australia’s only peak for the entire health and medical research and innovation pipeline. From our establishment in December 2000 as a key recommendation of the Australian Government’s Strategic Review into Health and Medical Research headed by our founder and Director, Peter Wills AC, we have grown, and expanded our impact thanks to the support of our members.

major outcome of the Wills Review was the doubling of the National Health and Medical Research Council budget for the five years from 1999-2004, and more recently we have seen the advent of the Medical Research Future Fund. However, today Australia still ranks below the OECD average for expenditure on research and development. It has never been more critical than right now to strengthen the research sector to secure Australia’s economic position in the global marketplace. We are unwavering in our pursuit of a world where Australia unlocks the full potential of its world-leading health and medical research sector to deliver the best possible healthcare and global leadership in health innovation. We continue to evolve the ways in which we fulfil our mission to position health and medical research as a significant driver of a healthy population and contributor to a healthy economy. We use our unique convening power to meet the needs of our membership and focus on the areas of influence that can successfully engender the changes our sector, and our nation, need. 8 INSPIRE 019 | 2021

The establishment of Research Australia was made possible through the foresight and support of our Foundation Partners and Foundation Donors, including the late Dame Elisabeth Murdoch. This group provided significant funding over three years, enabling Research Australia to build a solid operational platform, secure members and develop a diverse range of programs. We must acknowledge those who’ve been there from the very start and those who’ve been loyal members to a large part of our 20 years. Our Foundation donors included Dame Elizabeth Murdoch, The Ian Potter Foundation, The Perpetual Foundation and the Garnet Passe and Rodney Williams Memorial Foundation. Today we recognise our three Foundation members, Telstra Health, Bupa Health Foundation and Calvary Healthcare each having representation on our Board and helping guide the fulfilment of our mission with their vast expertise and experience. Our organisation has been steered by an illustrious alumnus of Chairs including Peter Wills AC, John Niland AC, Professor Christopher Roberts, Professor Christine Bennett AO, Chris Chapman and our current Chair, Associate Professor Annette Schmiede. Professor Dawn Freshwater AC has recently been appointed as Research

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Australia’s Deputy Chair; Peter Wills steps down as Deputy Chair but remains on the Board as a Director. The Research Australia University Roundtable has been linking academia, government and industry to create the right environment for inspired action for many years and has been chaired by Professor Judith Whitworth, Professor Allan Cripps, Professor Alexandra McManus, Professor Don Iverson, Professor Richard Head, Professor Nicholas Fisk, and Professor Shitij Kapur. We recently welcomed Professor Russell Gruen, Dean of the College of Health and Medicine at the Australian National University, as the new Chair of the University Roundtable. Professor Gruen brings clinical and academic experience together with an understanding of Australia’s international standing. The Research Australia Health Economics Roundtable was established in 2017 and has grown in participation and strength over the last four years. As a forum it connects health economists from within Research Australia’s membership with the broader research community and government. The group exists as a forum for collaboration, comment and research and was established to play a key and unique role in driving research-based evidence for health policy and program development. Research Australia’s unique convening power is exemplified in the many parliamentary briefings it has conducted over the years. These were accelerated enormously with the onset of the pandemic and over the last year over 150 Ministers, Parliamentary Secretaries, Shadow Ministers, Members of Parliament and Advisors at both the Federal and State levels of Government have been bought together to hear directly from our members on the issues affecting the nation’s health and wellbeing. Prior to the last federal election, Research Australia brought together a number of peak bodies in health to develop a Pre-Election Statement. The statement was devised at a Summit attended by key federal politicians in health. Together, the sector was able to achieve bipartisan

commitment to much of what was called for in that Statement, testament to the importance of a collective voice for Australian health and medical research. Our Awards celebrate their 18th year and grow in support from nominations and sponsorship each year. We look forward to bringing leaders from across the pipeline and researchers from all stages of their career, philanthropists and advocates under the one roof to acknowledge and showcase contributions and excellence in our sector. It has become tradition that the Federal Minister for Health opens this signature occasion and so many members of parliament, leaders in HMR, early to midcareer researchers, philanthropists and leading research institutes and universities celebrate a sector that is globally recognised for its excellence. Our international alliance members continue to connect with us regularly and we learn from each other’s achievements and challenges as peak bodies. The relationships with our international partner organisations is about fostering greater collaboration with each other to leverage expertise, advancements, and approaches in health and medical research advocacy. Our achievements over the last 20 years are vast and varied. Our respected role as the nonpartisan voice of the entire health and medical research pipeline has seen federal and state governments seek our advice on the critical matters facing the country’s health system. Research Australia was delighted to see the first Round of grants for the $570 million Medical Research Future Fund (MRFF) Frontiers Programme made last year. Frontiers was a program initiated by Research Australia in partnership with the Department of Health. The Evaluation Framework for the MRFF developed by Research Australia on behalf of the Department of Health has underpinned the Department’s approach to MRFF evaluation. Just as we champion the NHMRC and ARC, we continue to champion the MRFF and the scientific rigour and health outcomes it enables. 2021 | INSPIRE 019 9

PHILANTHROPY ROUNDTABLE As we advocate so strongly, health and medical research is a significant and strategically important part of our economy. Australia undertakes world class health and medical research and with goals of better health outcomes, safe and more effective healthcare and commercialisation of research discoveries, it is an activity that resonates across the whole of the nation’s economy and community. Whilst government funding is the bedrock of the health and medical research system, contributions from the private and not-for-profit sectors are also significant. The relationships between the different research organisations and the different sources of funding are complex. As an ecosystem, a change in one area can have repercussions for the whole system. Therefore, it is imperative we understand the contributions made by participants to better enhance the system and ensure its sustainability. On December 10, 50 representatives from around 30 members organisations with a vested interest in all facets of funding of health and medical research in Australia convened.

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Discussions continued to include the impact of COVID-19 on fundraising and also how the face of philanthropy has changed and the impact for researchers and fundraising organisations. We heard from Gillian French & Prof James St John from Griffith University on the challenges of attracting funding for capacity building rather than general research projects. The Children’s Medical Research Institute shared details of their new initiative which draws on philanthropy to help overcome the valley of death for innovation. They also detailed their Jeans for Genes Day event strategy and how it changed during COVID and how they’ll continue in the future. This led to much discussion on ways to futureproofing fundraising organisations to ensure continued success led by Paul Flynn of the Children’s Hospital Research Foundation in Adelaide. We thank all the attendees and speakers for their input as it was an incredibly insightful event.

RESEARCH AUSTRALIA DATA INNOVATION AWARD

The Data Innovation Award has been awarded for four years now and Bupa Heatlh Foundation have sponsored it for the last two years.

Below are the Award Alumni of this important Award. Research Australia is aligned strongly with its members in advocating for the value of health data as a national resource both within and external to the health and medical research sector. We encourage the policy setting for efficiently shared, linked and secured data for research and endeavour to educate consumers on how wellbeing can be advance with technology. The finalists in this category will be announced in July and the winner announced at the gala dinner at the annual Gala Diner on December 9, 2021 at the Four Seasons Hotel Sydney.

2017 Data Award Winner: Prof Helmut Butzkueven & Highly Commended Prof Lisa Bero

2016 Winner: The Capital Markets CRC Health Market Quality Team

Dr Craig Dalton, Data Innovation Award 2018 winner

Prof John Lynch, Data Innovation Award 2019 winner

PARLIAMENTARY BRIEFINGS As the national peak body for health and medical research, Research Australia has been working tirelessly to ensure we continue to engage with key government and political stakeholders. In the midst of social distancing measures across Australia in 2020 and continuing in 2021, Research Australia has ensured our (virtual) feet were on the ground at parliaments around the country, delivering the message that Australian health and medical researchers are leading the fight against COVID-19. It has been nearly a year since our first virtual briefing to political and government stakeholders and Australian workplaces are now coming back to the ‘new normal.’ Going into 2021 and beyond, Research Australia will be continuing virtual briefings on research activities on topics beyond COVID-19 research. With over 185 MPs, staffers and bureaucrats now briefed, virtual formats have demonstrated that online briefings provide a wide scope for attendance and allow Research Australia and its members to focus on what is important – the research. Research Australia understands that it is not only about getting the message out but ensuring that our members always have a seat at the table. Accordingly, Research Australia includes our members in our meetings with key political stakeholders. Our first briefing for this year was co-hosted with Parliamentary Friends of Mental Health Group Co-Chairs, Senator Deborah O’Neill, Mr Andrew Wallace MP and Senator Rachel Siewert. On the day, Research Australia Members briefed over 25 political and government stakeholders on leading research into the mental health impacts of COVID-19 and what is being done across the entire health and medical research pipeline to translate mental health research into real health outcomes. Our speakers from Orygen, the Black Dog Institute, the Anne Deveson Research Institute and the Society for Mental Health Research all spoke on mental health trends during COVID-19. The evidence was harrowing, with Professor Jennie Hudson, Professor of Clinical Psychology at the Black Dog Institute, revealing that the incidence of suicidal ideations in those aged 12-18 had almost doubled over the course of the pandemic. Professor Hudson identified that whilst Australia has some of the most highly regarded 12 INSPIRE 019 | 2021

mental health services in Australia, it is vital that we invest in new wide scope screening technologies that identify mental illness in school populations, such as anxiety and depression, which are most treatable when caught early. Dr Michelle Blanchard, Director of the Anne Deveson Research Centre and Deputy CEO of SANE Australia, spoke on the impact of stigma and discrimination on those suffering from complex mental health issues. Dr Blanchard shared with attendees the increased stigma and discrimination people with complex health issues face during times of societal crisis and the need for truly integrated care that employs modes of treatment across both clinical settings and in the community. Professor Frances Kay-Lambkin, President of the Society for Mental Health Research and Acting Pro ViceChancellor at the University of Newcastle, identified that the COVID-19 pandemic has pushed an already strained mental health system to breaking point. Professor Kay-

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Lambkin offered digital technology as a solution to the growing service gap to consumers by augmenting mental health services to reach all of the 1 in 4 Australians who will suffer with mental illness and/or misuse alcohol or other drugs. Professor Pat McGorry AO, Executive Director of Orygen, commended the strength of Australian treatment programs for mental illness whilst also identifying the shrinking mental health workforce capacity in both researchers and clinicians. COVID-19 has added much greater urgency to the need for growth to meet the increasing gap between patient needs and system capacity. The COVID-19 pandemic has shone a spotlight on Australian health and medical research and parliaments across the country are more engaged than ever. Research Australia’s top priority moving forward is leveraging the momentum gained during the pandemic so we can continue meeting the advocacy goals of our members.

Our 2021 briefing calendar for the Federal and state parliaments is packed to the rafters. So, please reach out to us if your organisation is developing research that needs the attention of key political stakeholders. Research Australia is the only alliance that represents the entire health and medical research pipeline in Australia nationally – our briefings are unique in this respect and will ensure that the correct focus is given to your organisation and its research. As the national alliance for health and medical research, Research Australia will always connect our membership with key decision makers, because the most informed decisions provide the highest returns for the economy and the health of all Australians. To enquire into presenting at one of our upcoming briefings, please contact Lucy Clynes, Research Australia’s General Manager, on lucy.clynes@researchaustralia.org

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SPONSOR FEATURE

Supporting Australian Scientists through Awards To further showcase Australia's talent in the sector they also support early career researcher through their Emerging Health Researcher Award. This article features their latest winner. The global COVID-19 pandemic has highlighted for us all the value that comes from Australia’s health and medical research workforce.

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rior to Covid, our scientists, public health professionals and healthcare workers were typically working behind the scenes and their important role in keeping our communities healthy and economies functioning, largely taken for granted. For the past 9 years, the Bupa Health Foundation has been shining a spotlight on Australian scientists through our annual Emerging Health Researcher Award. The award celebrates but also invests in the careers of early career researchers who despite their career stage are already having an impact on community health. At the end of 2020 the Foundation announced their 2020 Award winner Dr Jin Han. Jin who is a Research Fellow and a National Suicide Prevention Fund Postdoctoral Fellow at the Black Dog Institute. Jin was acknowledged for her leadership in developing, implementing, and evaluating digital suicide prevention interventions.

SPONSOR FEATURE

The Award, which includes a $25,000 grant, intends to support Dr Han to further her research into finding innovative ways to use technology to improve the mental health of young people have been particularly impacted by COVID. One of her evidence-based digital interventions include the suicide prevention app LifeBuoy, which has been shown to reduce suicidal thoughts among young people, while increasing feelings of general wellbeing “Mental health is a major issue among young people, particularly due to the impacts of the COVID-19 pandemic. Our research has shown that mental health has worsened for around 75 per cent of young people during this time. We know that they are very comfortable using technology, so ultimately, I’d like to see technology being used to facilitate positive change in the mental health of young people,” Dr Han said. “This award will allow me to further some of my early stage ideas that I might not have otherwise been able to progress. I’m super excited and honoured to be named the Bupa Health Foundation Emerging Health Researcher of the Year.” Professor Samuel Harvey, Director of Discovery at the Black Dog Institute said awards like these provide muchneeded community recognition and support to young researchers which help encourage them to continue their research and set their career path.

Jin is a rising star here at the Black Dog Institute, with her research tackling some of the biggest mental health issues we are facing as a society. More young people than ever are reporting depression and anxiety symptoms. While many see technology as part of the problem, what makes Jin stand out is that she wants to harness that technology to find solutions,” Professor Harvey said. Bupa Director of Clinical Governance, Dr Zoe Wainer said while this has been a challenging year in funding for the research sector, the COVID-19 pandemic has highlighted the critical importance of swift and targeted responses to health problems, and the need to support innovations in this field. Already data is emerging highlighting that young people are calling upon online mental health tools more than ever before because of lockdown situations, spending more time on the internet and being isolate from friends and family. New innovations such as Dr Han’s LifeBuoy app will be critical in helping to support many young Australians through this difficult period,” she added. The Bupa Health Foundation named an additional four award finalists and five Commendations resulting in a total investment of $50,000 into Australia’s brightest health and medical researchers, building on our overall investment of more than $2 million in 2020. In 2021 the Foundation’s vision is to expand on our investment in data and digital technologies which are critical for accessible, efficient and effective health care that ultimately benefits the community. Author: Dr Melina Georgousakis, Research & Policy Manager, Bupa Health Foundation and Founder of Franklin Women.

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CHILDHOOD DEMENTIA:

IT’S TIME TO DO THINGS DIFFERENTLY

Angelina with her mother, Niki in 2020. Angelina suffers from Lafora disease. She had no symptoms of childhood dementia until 2018 when she was 14 years old. Today, she is unable to attend school and is suffering significant cognitive decline. 16 INSPIRE 019 | 2021

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Leveraging shared data and infrastructure and building economies of scale in rare disease research

hildhood dementia comprises a devastating, under-recognised group of rare disorders. Typically monogenic in origin, they result in global and progressive neurocognitive decline. The average life expectancy for all childhood dementia disorders is just 28 years, and for many, death is in early childhood. Children with dementia have high and complex needs and suffer appalling quality of life. While dementia in children has long been recognised in the medical and academic communities, the disorders that cause childhood dementia have not been considered as a collective group. Instead, they have been researched individually. And because they are rare or ultra-rare, little research or funding has been directed towards them. Like other disease groups such as the aging dementias and cerebral palsy, childhood dementia has multiple causes. More than 70 genetic disorders can be defined as causing childhood dementia according to a previously published set of disease criteria1 2. These include Batten disease, Sanfilippo syndrome, Niemann-Pick disease, Tay-Sachs disease, metachromatic leukodystrophy, Rett syndrome and some mitochondrial disorders.

Childhood Dementia Initiative undertook a burden of illness study 3 with health economists at THEMA Consulting in 2020 to learn more about the impact of 1 Nunn K, Williams K, Ouvrier R. The Australian Childhood Dementia Study. Eur Child Adolesc Psychiatry. 2002 April;11(2): 63-70. 2 Verity C, Winstone AM, Stellitano L, Will R, Nicoll A. The epidemiology of progressive intellectual and neurological deterioration in childhood. Arch Dis Child. 2010 May;95(5):361-4. 3 Tilden D, Valeri M and Ellis M. (2020, Nov). Childhood dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society. Report for Childhood Dementia Initiative. THEMA Consulting Pty Ltd.,. https://www.childhooddementia.org/ burdenstudy

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these disorders. It uncovered a previously unrecognised and significant collective incidence and prevalence as well as considerable costs to Australia. The study found that the incidence of childhood dementia is approximately 1 in 2,800 births. This is similar to cystic fibrosis which occurs in 1 in 2,874 births4. An estimated 2,273 individuals in Australia, and 700,000 globally, live with childhood dementia — a prevalence on par with motor neurone disease (reported to be 2,094 Australians in 20155). In an average year, the burden of illness study estimated childhood dementia’s economic and societal cost to Australia to be $389 million. This includes $40.4 million in costs to the Australian healthcare system, $39.7 million in indirect costs, $233.5 million in costs of life years lost and $75.0 million in costs to the National Disability Insurance Scheme. These costs are likely to be underestimated due to a lack of robust data for many of the rare disorders that cause childhood dementia.

MANY CAUSES BUT COMMON MECHANISMS

Globally, research into childhood dementia disorders is disparate and siloed in nature, with focus on single disorders and replication of infrastructure. Yet research to date suggests there are a number of overlapping disease mechanisms occurring among the various childhood dementia disorders. In addition, similar techniques, disease models and equipment are, and can be, used to study the cells of the brain to understand these disorders and develop treatments. T h e s ha re d pre se ntati o n a nd impacts of th e se disorders present a powerful opportunity. Research that concurrently investigates multiple childhood dementias, or mechanisms common to multiple disorders, can enable to-date untapped economies of scale and greater patient benefits. Additionally, the shared utilisation of data, technology, and infrastructure, including patient registries and biobanking, can deliver significant efficiencies. Shared and streamlined platform technologies to deliver high-cost gene therapy to children with dementia can also deliver faster, urgently needed results. Rare disease exper ts agree that cross indication approaches will lead to enhanced efficiencies and accelerate the drug development pipeline for rare

4 Massie RJ, Olsen M, Glazner J, Robertson CF, Francis I. Newborn screening for cystic fibrosis in Victoria: 10 years’ experience (1989–1998). Med J Aust 2000 Jun 19;172(12):584-7. 5 Deloitte Access Economics Report (2015). Economic analysis of motor neurone disease in Australia. https://www.mndaust.asn. au/Influencing-policy/Economic-analysis-of-MND-(1)/Economicanalysis-of-MND-in-Australia.aspx

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disorders 6. This approach is also well aligned with the The National Strategic Action Plan for Rare Diseases that was endorsed by the Australian Federal Government in February 20207. The potential scope of cross indication approaches is not limited to childhood dementia disorders. A growing body of literature suggests that common disease mechanisms also exist between childhood dementias and adult-onset neurodegenerative disorders such as Alzheimer’s and Parkinson’s disease.8 Already the study of ‘younger-onset’ dementia (presenting under 65 years of age) has revealed new therapy development opportunities for the more common late-onset dementias.9 Accelerating progress on childhood dementia will require systemic changes across funding, scientific research and clinical trial design. Essential too are new collaborative networks that bring researchers, funders, clinicians, and industry experts together. Childhood Dementia Initiative was established to facilitate these shifts on a global scale.

Until now, progress to treatment has been slow. Too slow. Less than 5% of the disorders that cause childhood dementia have effective treatments. A new and collaborative approach to childhood dementia is likely the only feasible way to quickly and effectively reduce its devastating impacts on children. This end goal is what matters most. Children urgently need us to change the way we are researching, funding and approaching childhood dementia disorders. Authors: Kristina Elvidge, Phd, Head of Research, Childhood Dementia Initiative. Megan Donnell, CEO, Childhood Dementia Initiative

6 Brooks PJ, Tagle DA, Groft S. Expanding rare disease drug trials based on shared molecular etiology. Nat Biotechnol. 2014 Jun;32(6):515-8. 7 Rare Voices Australia. (2020, Feb). National Strategic Action Plan for Rare Diseases. Australian Government Department of Health. https://rva.blob.core.windows.net/assets/uploads/files/ NationalStrategicAPRD.pdf 8 Qureshi YH, Baez P, Reitz C. Endosomal Trafficking in Alzheimer’s Disease, Parkinson’s Disease, and Neuronal Ceroid Lipofuscinosis. Mol Cell Biol. 2020 Sep 14;40(19):e00262-20; Torres S, García-Ruiz CM, Fernandez-Checa JC. Mitochondrial Cholesterol in Alzheimer’s Disease and Niemann-Pick Type C Disease. Front Neurol. 2019 Nov 7;10:1168; Platt FM, d’Azzo A, Davidson BL, Neufeld EF, Tifft CJ. Lysosomal storage diseases. Nat Rev Dis Primers. 2018 Oct 1;4(1):27. 9 Rossor MN, Fox NC, Mummery CJ, Schott JM, Warren JD. The diagnosis of young-onset dementia. Lancet Neurol. 2010;9(8):793806.

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Jude who was born with a form of childhood dementia, Sanfilippo syndrome. 2021 | INSPIRE 019 19

CHIME PROVIDES URGENT TELEHEALTH FOR GEELONG DURING PANDEMIC The new CHIME Partnership between Deakin University and Barwon Health arrived at the right time to meet Geelong’s COVID-19 mental health support challenges – leading to the establishment of a mental health telehealth facility delivered jointly at Deakin’s Waterfront Campus.

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ormalised in 2019, the Change to Improve Mental Health (CHIME) Partnership needed to pivot quickly once COVID-19 arrived. Set up in a matter of days, the telehealth facility was launched in April 2020, with up to 10 staff providing 200-300 video conference sessions each week and a number of Deakin IT, operations and academic staff involved. This rapid roll-out of telehealth was underpinned by an evaluative research project that has been able to capture the perceptions of clinicians and consumers on the acceptability and effectiveness of telehealth sessions compared to their experiences of face-to-face consultations. The telehealth service also provided a valuable learning opportunity for Deakin clinical psychology students, with participants gaining the skills to engage effectively with telehealth when they graduate. Associate Professor Steven Moylan, Clinical Director, Mental Health, Drugs and Alcohol Services at Barwon Health and a member of the CHIME establishment group, said the CHIME Partnership was key to achieving the smooth transition to telehealth. “With the arrival of COVID-19 and social distancing restrictions, an immediate challenge for Barwon Health was to find the infrastructure to deliver mental health care through telehealth,” Associate Professor Moylan said. “We had to substantially reduce face-to-face services, but there was an escalating need to support people facing challenges of isolation, employment disruption, family tension and other stresses caused by the pandemic, in addition to the ongoing mental health care that we normally provide.” Another early research area auspiced by CHIME is the emerging design science called ‘biophilic’ design’. Biophilia is the idea that humans hold a biological need for connection with nature on physical, mental, and social levels. Empirical evidence in research has shown exposure to biophilic-designed elements supports psychological and physiological health and wellbeing.

Renae Carolin, CHIME's interim Director

Dr Philip Roös, Director of the Live+Smart Research Laboratory at Deakin University, said that badly-designed spaces in buildings can have a direct negative impact on our mental health and wellbeing and can cause an increase in stress levels, anxiety, lack of concentration, tension, anger, fatigue, confusion and total mood disturbance. 2021 | INSPIRE 019 21

“By incorporating biophilic design elements into future capital works, we hope to create spaces that will have a positive contribution to mental health and well-being of consumers, carers and staff,” Dr Roös said. These first successful projects demonstrate the potential of CHIME, but the Partnership has much wider ambitions. Its vision is to transform mental health care in the Barwon region through a person-centred, whole-of-system approach and influence the adoption of better mental health care initiatives across Victoria and Australia.

LIVING LAB FOR MENTAL HEALTH

Leveraging the advantages of the Barwon Region, CHIME is set to create a ‘living-lab’ in which mental health system 22 INSPIRE 019 | 2021

reforms, therapies and devices, such as apps, can be trialled, evaluated and implemented. This will set the stage for achieving continuous improvement in the delivery of mental health services and products, with improved outcomes for consumers, carers and the community. CHIME’s Interim Director Ms Renae Carolin said the Partnership’s over-arching goal is to improve mental health care for the community by delivering an evidence-based, person-centred and co-designed approach to improve mental health care for consumers and carers in rural and regional Victoria. CHIME was set up in recognition that mental health is the health challenge of modern times,” Ms Carolin said.

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quality system that works for the community, through collaboration. We are also excited to be capturing this knowledge so it can be communicated across Victoria, Australia and the world.” The Productivity Commission has identified that reform of the nation’s mental health system would produce large benefits Australia-wide, including improvements in people’s quality of life, valued at up to $18 billion annually, and increased economic participation (up to $1.3 billion). About 90 per cent of the benefits, about $17 billion, could be achieved by adopting identified priority reforms. Implementation of the Productivity and Royal Commission reforms will be complex. Future workforce needs will have to be considered, along with innovative ways to upskill people and develop clinicians to meet future workforce demands. If the individual, social and economic gains from reform are to be realised, there is an urgent need for translational research and innovation to be undertaken in real time. This research will gather evidence, develop an empowered mental health workforce, create new collaborative approaches in the system and harness the power of digital and data in mental health medicine.

NEW OPPORTUNITIES

“We are confident this world-class innovation will attract outstanding mental health clinicians and researchers to the Barwon Region to drive the development of new training and workforce practices,” said Ms Carolin.

“The Royal Commission into Victoria’s Mental Health System identified that since the last major reform to the State’s mental health services, in the 1990s, the system has progressively become more fragmented and complex.

The CHIME partnership provides an enabling platform, connecting Barwon Health’s service delivery with Deakin’s research and innovation expertise.

It allows us to directly address the findings of the Royal Commission into Victoria’s Mental Health System and the Federal Government’s Mental Health Productivity Commission, by developing an accessible, high

Research opportunities through the CHIME partnership will include exploring service delivery and clinical models of care, digital platforms and technologies, consumer and carer engagement, novel therapeutics and clinical trials, built environment, leadership and workforce, and next-generation artificial intelligence technologies, amongst numerous projects we expect in the coming years.”

Author: Renae Carolin, Interim Director, CHIME Deakin University

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FOUR DIGITAL HEALTH RESEARCHERS TRANSFORMING OUR HEALTH CARE SYSTEM

The Digital Health Cooperative Research Centre (DHCRC) is one of Australia’s largest CRCs, and a leading collaborative research organisation in the digital health space. 24 INSPIRE 019 | 2021

he seven-year program began in 2018 and brings together researchers, clinicians, the healthcare a n d t e c h n o l o g y s e c t o r s , g ove r n m e n t s , universities and others to help develop innovation in digital healthcare. The CRC received over $50 million of Australian government funding, each dollar matched by over 70 participant organisations, including 16 Australian universities. There are around thirty projects totalling over $17 million already underway.

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Data Scientist: Dr Amir Marashi

Digital Health is a very broad remit – and the CRC structure enables collaboration between researchers, government and industry to solve big health problems. 1

Dr Amir Marashi, Data Scientist

Amir is the DHCRC’s data scientist - and also a post-doc researcher at Macquarie University. Amir facilitates access for our researchers to a huge US Medicaid claim dataset supplied by HMS Healthcare

comprising hundreds of millions of records since 2015 and providing near real-time access to significant healthcare trends. “It’s an enormous dataset, with so many different features and tables linked together, and we receive an update every month,” says Amir. “There are so many attributes to this dataset, and observing the way the data changed over 2020 has been fascinating,” he says. A number of DHCRC projects use the data for their research, relying on Amir’s expertise to work with this huge and complex dataset. 2021 | INSPIRE 019 25

Rural and Remote Health Care specialist: Professor Suzanne Robinson

These include a project with the University of Canberra to develop a comprehensive Health Atlas using geospatial technology to help health organisations allocate resources where they are most needed, and a project with Stanford University to explore trends that identify the risk of future addiction in people using opioids for post-operative pain. Other projects include an exploration of factors that influence Emergency Department over-use, and analysing trends in Primary Care. 2

Professor Suzanne Robinson, Rural and Remote Health Care specialist:

Aged care data research expert: Professor Len Gray

researchers, the team will create a linked data resource of pathology and hospital data. Applying machine learning to the data, the team aims to uncover clinical indicators and develop an evidence-based picture of how CKD progresses, so they can identify treatment opportunities across the continuum of care. Suzanne is also a lead investigator on another DHCRC project in rural and remote Australia which compares the efficiency and acceptability of health outreach using conventional telemedicine with other technology – like smartphones and wearables.

Suzanne is a health economist and Digital Health CRC’s Flagship Research and Education Director for Rural and Remote Health care. She also leads Curtin University’s Health Research and Data Analytics Hub.

“Country health services have been using telehealth for many years,” she says. “This project is taking that success and pushing boundaries, combining new innovations with the existing telehealth platform.”

“There are so many ways that digital health can improve both the quality and the cost-effectiveness of health services for people in rural and remote locations,” Suzanne says.

The project will look at how these technologies could improve equity, efficiency and population health, Suzanne says.

She heads up a Digital Health CRC-supported project to use data analytics to identify people who show some early indications of chronic kidney disease (CKD). “Only ten per cent of CKD cases are diagnosed early – and hospitalisation rates are about twice as high in rural and remote areas than in major cities; but disease progression and trajectories are not well understood at a population level,” she explains. The project will provide new insights into the risk factors associated with CKD, identifying the gaps in the system that contribute to the rising burden of disease. Using a ground-breaking Privacy Preserving Record L inkage (PPRL) te chnique deve lope d by Cur tin

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“This project includes co-design with consumers, clinicians, health services and technology partners, all working together to develop new and exciting ways to deliver health services across rural and remote communities,” she says.

Professor Len Gray, Aged care data research expert:

Professor Len Gray is Director of the Centre for Health Services Research at the University of Queensland. 3

He is lead investigator on the Digital Health CRC Aged Care Data Compare (ACDC) project, singled out for mention by the recent Royal Commission into Aged Care Quality and Safety for its potential to improve the use of data and digital technology in aged care.

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Cardiology specialist: ProfessorMy Clara Chow Twitter : @chriskere CHRISTOPHE KEREBEL

“Recommendation 109 of the Royal Commission explicitly recommends expansion of the ACDC project to include care in the home,” says Len. The Recommendation refers to the importance of improving Australia’s ability to share data and information about people receiving care, between aged care and health care providers and relevant government agencies. The ACDC project aims to streamline the data used in residential aged care settings to help manage, compare and benchmark different providers.

The project will build a prototype showing how to effectively share information across aged care providers that use different IT systems, so we can improve patient care and measure the levels, quality and results of services they provide to residents,” Len says. Len notes there is a huge amount of data collected across the aged care sector – but much of the data about care, quality and performance can’t be easily analysed or compared. Part of the project will find ways to record information about day-to-day care, such as patient mobility and mood, in a standard way so that it can be analysed more effectively; for example, showing signs of a resident’s decline and flagging the need for additional help. “Our project aims to set up an environment where providers can look at how they’re going and compare themselves to others - or within their own organisation to find room for improvement,” says Len.

Professor Clara Chow, Cardiology specialist

Professor Clara Chow is a cardiologist at Westmead Hospital and Academic Director of the Westmead Applied Research Centre. She’s also the lead investigator on an important DHCRC digital health project which is now recruiting patients at Sydney’s Westmead hospital. Atrial Fibrillation is a complex condition involving an irregular heart rhythm which affects two to four per cent of Australians and can lead to stroke and heart failure. The Westmead Hospital Atrial Fibrillation Support and Outreach Program uses digital tools like automated calls and texts, tailored emails and a personalised web page to help patients get help navigating their condition, driving better health outcomes. The project uses a consumer engagement platform developed by two health technology industry partners, HMS Healthcare and MedAdvisor. “Atrial fibrillation is a complex condition to manage, and many patients struggle to keep track of multiple visits to their doctors and other healthcare providers and important treatments,” says Professor Chow. “Through this program, we aim to show that we can aid in improving Atrial Fibrillation patients’ health management through the use of technology solutions.” The three-year research program will gather self-reported patient health perceptions, and assess barriers to care, and potential for translation to other chronic diseases. Author: Fran Molloy, Media Consultant, Sydney University for the Digital Health CRC

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TRANSLATING CLINICAL ANALYTICS FROM RESEARCH TO PRACTICE

Top: Professor Enrico Coiera, Director for Centre for Health Informatics, Australian Institute of Health Innovation NHMRC Centre of Research Excellence in Digital Health. Above: Dr Guy Tsafnat, Founder and CSO at Evidentil Pty Ltd 28 INSPIRE 019 | 2021

Research translation in healthcare is typically seen as the transfer of insights CHRISTOPHE KEREBEL about disease biology and management from laboratory to clinical trial and then on to clinical practice. Sometimes however, we can also translate the very methods used by researchers into routine use.

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linical Analytics is a modern case in point. Researchers today have access to a variety of tools to create ‘virtual cohorts’ of patients by linking together data from multiple data sets such as clinical trials, registries and clinical records.

The clinician might fill out an on-line form that prompts her for common patient characteristics such as age and demographics, when the patient was admitted to hospital, what was the patient diagnosed with, what treatments were given, and what observations were made.

The impetus to do this is partly the very high cost of conducting large scale randomised trials. There is also the need to use ‘real world’ data to help manage complex patients who have comorbidities that exclude them from traditional trials.

The software then translates these characteristics into a query using validated conversion algorithms. For example, clinical terms would be translated into related terms from a controlled clinical vocabulary. Finally, the AI can help the clinician interpret the results themselves, for example by presenting simple conclusions from the complex numerical results of an observational study.

Once such a cohort of patients is identified, modern researchers have access to a variety of analytic tools to both look for correlations within the data, but also build predictive models using machine learning and related statistical methods. For example, machine learning can find predictors of readmission that identify patients at risk. Until recently, harnessing these capabilities outside of a research setting in which researchers have deep expertise in data linkage, statistics and artificial intelligence has not been routinely possible. Yet the potential for such technology to improve clinical practice is high. Instead of simply building ‘dashboards’ which passively present data on organisational performance or patient groups being managed by a clinical service, there are emerging use cases for predictive models that can assist clinical services improve performance, safety and outcomes by anticipating changes in workforce requirements, identifying patients at risk, or detecting emerging disease clusters. Such use cases are the bread and butter of any ‘learning health system’. Clinical analytics software will not entirely remove the requirements for some expertise in statistical knowledge or familiarity with the process of machine learning, but it can significantly reduce the barrier to using these methods by automating many aspects of the analytic process. Consider the most common of research tasks: creating a patient definition or “phenotype” to categorize patients into different cohorts. With traditional analytic tools, a clinician might provide a high-level cohort definition to a data scientist, who then translates it into programming language. Using clinical analytics, a clinician without data science knowledge should be able to leave this translation to the analytic software.

These examples illustrate how Clinical Analytics software can bring advanced analytics, AI and other tools to clinicians at the coal face.

Less obvious benefits are the reduced opportunity for miscommunication and the gentle “nudge” to use best-practice statistical and AI methods. Using such software also creates a detailed audit trail of the analytic process used and allows others to reproduce the research in other clinical settings, quality control and audit. In the next few years, clinical analytic tools, harnessing methodological best practice from research, will become a relatively common part of managing large scale clinical organisations. We can anticipate that with time and further advances in artificial intelligence, they might become a routine component of clinical practice, embedded naturally into the clinical software ecosystem like electronic health records that are used every day. Author: Dr. Guy Tsafnat is the Chairman and Chief Science Officer of Research Australia member Evidentli Pty Ltd, which makes and markets clinical analytics research software. He is also an adjunct researcher at Macquarie University. Prof. Enrico Coiera is the director of the Centre for Health Informatics at Research Australia member Macquarie University, and heads the Australian Alliance for AI in Healthcare. He is also a Director of Evidentli Pty Ltd.

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AUSTRALIAN RESEARCH CENTRE TO USE SWEDISH BIG DATA IN STROKE RECOVERY RESEARCH

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Part of the Centre for Rehab Innovations PREDICT team, left to right, Prof Michael Nilsson, Prof Sarah Johnson and Dr Madeleine Hinwood. 2021 | INSPIRE 019 31

The Centre for Rehab Innovations (CRI) in partnership with researchers at the University of Gothenburg will use one of the world’s best patient datasets to find out why some patients experience cognitive decline after stroke.

aving a stroke can turn your world upside down. For many people, a stroke will cause physical, cognitive, mental and emotional challenges that can be ongoing. While researchers are continually making progress in understanding stroke, it is an extremely challenging field. Stroke and stroke recovery are highly variable between people, and long term follow up data can be difficult to access or absent entirely. To overcome these challenges, the team at CRI has partnered with a research team at the University of Gothenburg to access one of the most comprehensive and best characterised sources of patient data in the world, the Swedish patient registries. Through successful funding gained from the NHMRC, our Australian-Swedish team will now apply cutting edge machine learning processes to analyse this large data set. The goal is to understand what combination of factors, including lifestyle and medications, might improve or impede stroke recovery. The ultimate goal is to advance clinical care following a stroke to improve outcomes for everyone.

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THE CENTRE FOR REHAB INNOVATIONS

CRI is a leader in delivering technology-enabled health care innovations in collaboration with academic, industry, healthcare, and other partners around the world. Founded in 2018 by myself and Associate Professor Michael Pollack (rehabilitation medicine), Professor Rohan Walker (neuroscience) and Professor Sarah Johnson (engineering), the centre has been designed to take a multidisciplinary approach to rehabilitation and help transform out of hospital and community care. We have a view that modern rehabilitation should support healthy living and holistic recovery along the entire care continuum. This includes offering support for an individual’s biopsycho-social recovery and reablement, education, and social support for affected individuals and their families or carers. This definition of modern rehabilitation has the potential to make vast medical, economic, and societal impact. The broader CRI team includes senior medical specialists and other experts in psychology, consumer engagement, clinical trials, information systems, law, physiotherapy, and other health disciplines.

APPLYING CRI EXPERTISE TO STROKE RECOVERY

While all patients have a unique journey, stroke can result in short and long-term physical, cognitive, mental, and emotional changes. This can include long-term complications to brain health, with the contributing factors poorly understood. CRI’s new project, PREDICT (exPloring REgistry Data In Cerebral sTroke), is about understanding how both lifestyle, biologic, and medical factors shape an individual’s journey after a stroke.

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We hope to identify the combination of factors that contributes to the best possible outcomes following a stroke, so that medical management can be optimised and rehabilitation can be individualised. Combining the potential insights available from patient registries with the skills of the CRI team opens significant opportunities to make deep inroads into our understanding of stroke recovery journeys. Trying to understand what factors influence recovery and long-term outcomes following a stroke is difficult. In part, this is because every stroke and every person’s medical background is different.

The key to overcoming this difficulty is having access to broad and relevant data, but this can also be a challenge. In Australia, patient data exists but is often kept in separate databases belonging to different institutions and is unlinked. To answer these questions, we have had to look further afield and luckily my country of birth, Sweden, has one of the best health data sets available. I first came across the Swedish conscription registry when wanting to see if fitness levels in younger people were linked to the prevalence of different neurological conditions including onset of dementia in later life. This inspired the current approach to use the larger (>450,000 patients) Swedish Stroke Register to explore predictors of good outcomes after stroke.

THE SWEDISH NATIONAL PATIENT REGISTRIES

Sweden has a long history of national registries, which are a gold mine for research. Sweden is also one of few

countries with unique personal identity numbers, which make it possible to link data from different registries to the same individual. When compared with data from other individuals, we can explore the interplay between different lifestyles, medications, and other factors which might improve or impede stroke recovery. The use of the Swedish registry to assess potential predictors of good outcome following a stroke is a formidable task. However, this is an exciting and unique project working with the Gothenburg researchers and the machine learning team within CRI to turn this massively powerful resource into medically relevant insights that can be used to change practice. CRI’s technology lead, Professor Johnson, says she is excited for the work to begin.

From the perspective of machine learning, these types of massive and linked data sets are a dream come true,” Professor Johnson explains. “Our team has a very positive outlook for what we can accomplish, and we look forward to progressing the project.”

Author: Professor Michael Nilsson MD PhD FAFRM (RACP) is the Director of the Centre for Rehab Innovations (CRI), a partnership between the University of Newcastle, The Hunter Medical Research Institute and NSW Health.

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A RENEWED CASE FOR DATA AND TECHNOLOGY TO RESPOND TO HEALTH SYSTEM CHALLENGES Good information is a crucial part of healthcare - for direct care giving, to design and safely run health and aged care services, for population health programs, policy setting and system design, and for health and medical research that touches all these aspects of healthcare.

he mission of the digital health agenda is to create, share and maximise value from high quality data to facilitate and improve these functions.

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Governments and the private sector have committed to and invested heavily in digital technologies as a key enabler of healthcare delivery and improvement, and as a critical research enabler. This has been driven by the opportunity to improve quality and reduce misadventure in care delivery, and to drive affordability and sustainability of our system as the health and care needs of the population change. The past 18 months has highlighted this need. We have all been impacted by the health and social risks of the pandemic, and seen the importance of access to quality health and aged care. After a year in 2020 of keenly tuning in for the day’s COVID test result figures each morning, and to advice of epidemiologists and researchers, there may well be a deeper appreciation of the role for timely, good quality health information. And so there is a special opportunity for a conversation between healthcare providers, policy makers and the community about digital health information and systems. There are a few domains where this opportunity is most acute:

Telstra Health is a member of Research Australia. Professor Mary Foley AM, is a Research CHRISTOPHE KEREBEL Australia Board Director. 1. Hospitals and health services are accelerating their uptake of preventative, in-home and virtual care to reduce demand on inpatient hospital services. For this to be safe and sustainable, there is a dependency on the quality of health services’ own data, and information from general practice, community pharmacy and home care services to assess patients at risk of admission to hospital, and to intervene before that is necessary. 2. In 2020, the Commonwealth temporarily expanded access to the Medical Benefits Schedule for a wide range of general practice and psychology consultations and the government has signalled this will continue in some form beyond the review date of 31 March 2021. For a permanent change to be clinically safe and sustainable from a funding perspective, Government and health professional bodies will need to consider not only utilisation rates to assess cost and equity of access, but also the quality and safety of care delivered under this model, including clinical indicators from provider systems, electronic prescriptions and use of home monitoring technologies in a holistic framework of virtual care. 3. Thirdly, the Royal Commission into Aged Care Quality and Safety calls out the need for high quality data and interoperable systems to better support care across the system and as important to improve individuals’ experience and outcomes. We are concerned that reliable, accessible and comprehensive data on safety and quality is not available in the aged care sector. At a system level, there is ‘no comprehensive data on the outcomes of care’…The Australian Government cannot effectively regulate or develop responsive policy for a system about which it remains partially ignorant. Notwithstanding digitisation of clinical records within the majority of residential aged care providers, consistently digitised data will provide a significant opportunity to improve safety and quality of care, share key data between a person’s care providers, and for transparency and benchmarking to drive policy, research and system improvement. These are strong imperatives for improved creation and collection of quality health data and technologies to enable the sharing and analysis of these data (including predictive analytics and AI). In Telstra Health’s experience, there are three main principles that should guide next steps to maximise value, reliability and trust in digital health systems: 1. Identify and reuse data that are clinically relevant and valuable, and be selective about additional collection of data that may require additional processes not already part of care delivery;

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2. Drive interoperability and utility by leveraging existing digitisation in the health and aged care sectors, and by increasing adoption of data standards that safely support data acquisition and access mechanisms incorporating security, consent, and role-based access control. This will enable true interoperability between systems and settings so that initiatives are not siloed, can be appropriately used to support research recruitment and data acquisition, and can be developed further as the sector matures digitally; and 3. Build trust and provide clarity about the value of sharing health information for quality and research purposes (including population health and clinical trials) and locate any new digital health initiatives and related research within appropriate data governance frameworks that are aligned across health, aged and disability sectors, including privacy legislation and parameters around the use of Healthcare Identifiers and My Health Record. Opportunities to reduce barriers to data sharing between State, Territory and Commonwealth jurisdictions should also be prioritised. Building on the general mission of digital health to facilitate and improve healthcare, Telstra Health’s vision is to realise a connected and improved digital health experience for all. This means that individuals and their carers, healthcare professionals, service providers, policy makers, as well as the research community have a positive experience of the health and aged care system with the support of digital technologies.

There’s a unique opportunity to accelerate this vision if our collective approach to data and digital health technology is aligned with these three principles, and is inclusive of the needs of all parts of the sector and community. Author: Professor Mary Foley AM, Managing Director, Telstra Health

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MAKING THE MOST OF DIGITAL AND FACE-TO-FACE CLINICAL CARE

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By mid-year, Victoria will have the world’s first network of digitally-enhanced youth mental health services.

ed by Orygen, Australia’s centre of excellence in youth mental health, the MOST network integrates digital mental health technology with clinical services to address gaps in existing care models, provide on-demand support and sustain real life recovery for young people. These are challenging times for all of us. But for Australians experiencing mental ill-health, COVID-19 has compounded the sense of isolation and created additional barriers to accessing clinical care and support. According to the 2020 headspace National Youth Mental Health Survey, undertaken at the height of the first COVID-19 lockdown, approximately 70 per cent of young people who ‘considered or sought professional support’ during the pandemic reported they faced ‘access barriers’ to getting help when they needed it. And we know their wellbeing is still being impacted, increasing demand for accessible youth mental health services. The surge in telehealth adoption last year demonstrated Australia’s health care model has room for more flexible approaches to care, yet there remains little in the way of flexible, integrated mental health supports for those most in need. There is an obvious gap in the ecosystem of youth mental health care.

As waitlists grow, so does the reality of a ‘missing middle’ of young people not quite unwell enough to access crucial early intervention support. Indeed, the final report from the Royal Commission into Victoria’s Mental Health System noted ours is an “antiquated” system which “has failed to keep up to date with the latest advances in digital technology, which could improve people’s experiences and outcomes” before their mental health deteriorates. Recommendation 60, in particular, highlights the need to build a contemporary system through digital technology. At Orygen, it is in our DNA to research and translate how to digitally enhance youth mental health services. As Australia’s centre of excellence in youth mental health, we have a dedicated team in Orygen Digital, focused wholly on identifying and continuing to support new evidence-based digital services, platforms and research, and translating that effort to build on available care, and better integrate it with young people’s lives and existing supports.

ROLLING OUT MOST

Central to Orygen Digital’s current work is the rollout of MOST – our Moderated Online Social Therapy platform for young people aged 15 to 25. One of MOST’s many strengths is that it is available to young people on a waitlist for face-to-face care, giving them access to immediate help ahead of their first clinical appointment, easing service demand while still providing therapeutic care and support when young people need it most. What sets MOST apart from apps and online models of care, is that it blends face-to-face therapy with an interactive platform of digital therapy delivering personalised, guided therapeutic journeys and clinical, peer and vocational human supports along with a safe social network and the ability for users to create their own toolkit of strategies to access before, during and after their therapy sessions. Individual programs are initially guided by automated processes and then in partnership with clinicians and vocational workers who can guide or select journeys once face-to-face care begins. It is available on demand on smart phones and other digital devices. MOST’s implementation was fast-tracked as part of the Victorian Government’s response to COVID-19. It became a key support for many young people impacted by the lockdown. Anh was involved in an earlier trial of MOST, but when she found 2020 especially challenging and isolating, separating her from the physical support of her friends, she used MOST to interact with other young people on the moderated social network. “It made me feel more like I can interact with people that understood what I was going through and they’re there to help me as well as I’m there to help them.

I was in a really, really down point in my life and I didn’t know what I was doing at all, as well as depressed and I felt more anxious than ever. “When I’m on MOST, I feel like I’m expressing myself a lot better and like telling them how I deeply feel. It makes me feel more like I have a family that understands where I’m coming from.”

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Anh, who is now a MOST Ambassador as the platform rolls out across Victoria, said she especially enjoyed the emotional support she received on the platform and she encourages other young people who need help and support to consider using MOST to support their mental wellbeing. “I felt more relaxed, calm knowing that I don’t need to go through this all alone.” MOST is being rolled out in partnership with fellow youth mental health organisation headspace National, and specialist service providers, including Alfred Health and Monash Health. By the end of April, about 70 per cent of the state’s headspace centres and specialist youth mental health services are expected to offer their young clients access to MOST. It will soon expand to support those aged 12 to 14 as well. In addition to the Victorian Government, the development of the platform is backed by an 11-year partnership with the Telstra Foundation. This transformational project has been (and continues to be) developed in partnership with young people and the people and services who support them, underpinned by Orygen’s research, clinical expertise, trials and technical innovation. The research behind the development of MOST includes eight completed and seven ongoing pilot studies, both here and abroad (US, Canada, Ireland and the Netherlands). There have been six randomised controlled trials. In the two that have been finalised, there have been positive outcomes, including significantly fewer presentations to emergency departments and psychiatric hospitalisations, along with better vocational and educational outcomes for young people. The implementation of MOST across Victorian youth mental health services also offers an opportunity to adopt new methodologies to evaluate and improve technologyenabled services. Simultaneously, it allows for evaluating the strategies guiding the implementation, adding critical knowledge to the nascent field of digital mental health implementation in service settings.

DIGITAL AUGMENTATION OF SERVICES

The Royal Commission is correct when it views digital augmentation of our mental health services as key to providing a contemporary system. MOST is a prime example of what can be created when investment in research, development and innovation is supported then translated to real world mental health care predicated on user needs. Victoria may well have the world’s first digitally-enhanced youth mental health system by mid-year, but its implementation is being closely watched by other state and territory governments as a viable solution to address gaps in our current care models and, importantly, support and sustain real life recovery for young people using the tools and supports that motivate their journey to wellness. 38 INSPIRE 019 | 2021

Author: Professor Mario Alvarez-Jimenez D.Clin.Psy, MAResearchMeth, PhD, Director, Orygen Digital, NHMRC Investigator, Dame Kate Campbell Fellow, University of Melbourne

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NANOSTRUCTURED SURFACES REDUCE SARS-COV-2 QUT researchers have developed a nanostructured surface that deactivates viruses, including the COVID19-causing SARS-Cov-2 virus, and kills bacteria.

ow, leading QUT and Metro North Hospital and Health Service researchers are using a $577,000 grant from the Australia-India Strategic Research Fund to take the next step and trial the nanostructured surfaces on equipment in hospitals under real-world conditions. The new antipathogenic “wet-etching” technique for commonly touched surfaces was developed by medical devices specialist QUT Professor Prasad Yarlagadda, QUT virologist Professor Kirsten Spann and a research team. It will be trialled on trolleys, beds, and other equipment in Brisbane hospitals. The technique to produce a roughened surface on metal to fight microbes was inspired by the discovery of antimicrobial and antifungal properties of insect wings which are covered in nanoscale pillars. The wet-etching process involves applying a strong etching solution to the surface of aluminium alloy 6063, one of the most common materials in everyday use in healthcare settings. The wet-etching technique produces randomly oriented nanostructures, like millions of tiny spears, that capture microorganisms and deactivate them. When the SARS-CoV-2 virus was tested in a PC3 lab at Queensland Health, researchers found no recoverable viable virus after six hours of exposure to the nanostructured aluminium surface. 2021 | INSPIRE 019 41

In comparison, SARS-CoV-2 remained viable on the control surfaces - smooth aluminium, for more than 24 hours and on plastic for more than two days. In total, the COVID-19 virus was tested on the nanotextured surface eight times at different time intervals: after three, six, 24 and 48 hours. At the three-hour mark, seven out of the eight tests showed the virus was no longer viable. They tested the etched surface’s nanomechanical properties and found them to be durable and able to withstand much larger forces than those applied by hands, although the nanopillars are imperceptible to touch. As the process involves strong solvents, the etched surface equipment is more likely to be installed as endproducts rather than treated in-situ. Professor Yarlagadda said the current research would be particularly important to combat future viruses and pandemics as well as reducing antibiotic-resistant “superbug” infections in hospitals. “We are combining research in material science, nanofabrication, materials characterisation, microbiology and virology to develop surfaces using a variety of materials and techniques to reduce the risk of infection in healthcare settings,” he said.

We are also looking at using the technique on surgical instruments and implants, as well as commonly touched surfaces to reduce pathogen transmission in hospitals and healthcare settings.” ANTIBACTERIAL AS WELL AS ANTIVIRAL

The research on SARS-CoV-2 builds on previous research findings the team reported earlier in 2020, when researchers showed the treated surface had antibacterial as well as antiviral properties. Hospital-acquired infections are caused by a variety of bacteria and viruses transmitted via direct contact with infected people, or indirect contact with contaminated surfaces or airborne via droplets. Contact and droplet transmission are the most common modes of transmission and are caused when an infected person coughs or sneezes, dispelling infected droplets onto surfaces. This surface is then touched by someone else, transmitting the infection. Generally accessible and commonly touched surfaces in hospitals such as lift buttons, light switches, telephones, handrails, taps and benches, tables, sinks and toilets easily act as sites of transmission.

As healthcare associated infections (HAIs) are a critical problem worldwide, with an estimated 700,000 deaths annually from drug-resistant infections, the researchers tested common HAIs on the nanotextured surface. Current cleaning procedures to reduce hospital infections use disinfectants, hydrophobic coatings, silver ions or copper. These strategies can fail because of the lack of durability and stability of the coatings or inadequate cleaning regimes.

TESTING OF BACTERIA SPECIES

Common HAIs are caused by gram-positive bacteria such as methicillin-resistant Staphylococcus aureus and clostridium difficile and gram-negative bacteria including Acinetobacter ssp, Escherichia coli and Shigella spp. Researchers found the tested bacteria strains did not form the biofilm colonies which provide resistance against antibacterial agents and disinfectants. The rod-shaped P. aeruginosa appeared damaged by the random nanopillars with around 91.9 per cent of the cells non-viable after four hours. Similarly, the S. aureus cells were collapsed and deformed on the etched surface with 87 per cent of the cells deactivated and non-viable. The researchers concluded that the sharp nanopillars oriented in random directions irreversibly deformed the bacteria and prevented them from dividing and growing into colonies as they would on flat surfaces.

COMMON VIRUSES TESTED

Viruses such as respirator y syncy tial virus (RSV ) rhinovirus (RV), norovirus, coronavirus and influenza virus also spread via surface contact. The team tested an enveloped (RSV) and non-enveloped (RV) virus on the wet-etched aluminium over 24 hours, the first time the effect of nanostructured surfaces on viruses had been characterised.

Within two hours, live viable virus was significantly lower on the nanostructured surface than on the smooth control surface. Thus, nanostructured surfaces could be used in the future in healthcare and public environments to reduce the surface transmission of COVID-19 and other harmful viruses and bacteria. Author: Erik De Wit, Communications, Queensland University of Technology (QUT)

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Professor Prasad Yarlagadda, medical devices specialist at QUT

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THE IMPACT OF COVID-19: NEW INSIGHTS FROM THE 45 AND UP STUDY

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CHRISTOPHE KEREBEL CHRISTOPHE reduced personal contact outside their own household in My Twitter : @chriskere There are many moving parts in KEREBEL CHRISTOPHE KEREBEL 2020. a government’s response to a ACCESS TO HEALTHCARE highly infectious disease such The pandemic has had an impact on healthcare provision well beyond the care of people infected with COVID-19. as COVID-19. Forty percent of people in the 45 and Up Study surveys

n the acute phase, the focus is rightly on public health strategies to contain the pandemic. But over the longer term, it is critically important for policymakers to understand the impact that the pandemic – and the measures to control it – is having on the general population. The Sax Institute is helping to answer some of these questions, thanks to a COVID-19 research grant from the NSW government. Our flagship 45 and Up Study, which has tracked the health of over 260,000 NSW people over the age of 45 for the past 15 years, is revealing important insights into the population effects of COVID-19. Study participants are regularly being surveyed to offer a real-time snapshot of health and wellbeing during the COVID-19 pandemic. To date, over 60,000 participants have completed surveys on a range of topics, including the pandemic’s impact on health, loneliness, lifestyle, physical activity, diet, sleep, alcohol use, access to health services, experiences with telehealth and more – providing data and insights that will help guide policy and health services in the coming months and years. Results from these surveys yield some fascinating insights into the concerns and behaviours of people in this time of pandemic.

MENTAL HEALTH AND LONELINESS

A key public health concern is how the pandemic and associated measures have af fected people’s mental health. Surprisingly, we found that in 2020, a higher proportion of people rated their quality of life as excellent or very good, compared with surveys from the previous two years. However, one in four still said their psychological health was worse because of the pandemic. One in five reported some degree of psychological distress. Men were less likely to suffer from high distress levels, while people between 56 and 65 were more likely to experience high or very high levels of distress (8%) compared with older groups, demonstrating that the pandemic is having very different effects in different parts of the population. Loneliness due to lockdowns and restrictions, particularly among older people, has been another important issue. In our survey, almost one in ten people were intensely lonely in 2020, with more than 50% missing having other people around. Loneliness is associated with a number of poor health outcomes, including higher mortality and hospitalisation rates. Ninety-two percent of respondents reported

reported missed or delayed access to healthcare services, including missed appointments with a dentist (25%), GP (16%) and medical specialist (12%).

On the flipside, respondents were largely positive about telehealth, which expanded substantially in 2020. Nearly half of participants said they had received telehealth services, mostly by telephone. And the experience was mostly good, with 56% of people of the opinion that it was just as good or better than a face-to-face visit, compared with only 28% who said it was worse.

EXERCISE

During the lockdown, Australians made the most of their parks and bushlands for exercise and there was a boom in cycling. But were people really doing more exercise? The 45 and Up surveys suggest otherwise: over a quarter of participants reported spending less time on all forms of physical activity compared with the same time in the previous year, while 24% reported spending more time watching TV.

INFORMATION AND VACCINATION

Are Australians getting the information they need on COVID, and where do they get it? Three in five respondents reported being confused about the COVID information they read or heard, with people from more disadvantaged areas and those aged 56 to 64 more likely to feel this confusion. The most frequently accessed sources of information about COVID in this cohort of people over the age of 45 was public TV and radio (71%), followed by commercial T V/radio (45%) and newspapers (33%). Healthcare providers were the most trusted source of information – and yet the least accessed. Four in five of those surveyed in 2020 said they would get the COVID vaccination if it became available, with 19% unsure. As Australia now begins its rollout of COVID vaccines, the survey currently in the field will provide vital information on attitudes to immunisation. In all, five surveys are planned in this series, and the Sax Institute will continue to share findings as they become available to support an effective response to the pandemic and its impact on the population.

Author: Dr Martin McNamara, Deputy CEO of the Sax Institute.

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CAN AI IMPROVE THE ACCURACY OF AUSTRALIAN MAMMOGRAM RESULTS? Mammogram screening is credited with saving countless lives since BreastScreen Australia started its population screening program in 1991.

ach year, more than half of the women in the target age-range (50-74 years) have a mammogram – equating to 1.8 million women in 2016-2017. “It is clear that technological development is key to the improved detection of breast cancer,” says Dr Davis McCarthy, Holyoake Research Fellow and Head of Bioinformatics & Cellular Genomics at SVI. “Data shows us that over the past 20 years, breast cancer deaths have decreased by 32% in response to screening and treatment advances.” But there is still room for improvement. The typical wait time for results is two weeks or more – time for two experts to read the mammogram and a third if interpretations differ. Despite this careful process, more than 34,000 Australian women were recalled for assessment in 2018 and later determined not to have breast cancer.

THE BRAIX PROJECT

The BR AIx project is a cut ting-edge technology collaboration investigating whether novel ar tificial intelligence (AI) techniques can improve analysis and interpretation of mammograms for Australian women, ultimately transforming breast cancer screening. A/Prof Helen Frazer

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A unique cross-disciplinary health research team, BRAIx brings together clinicians, AI scientists and epidemiological and genomic researchers. The diverse BRAIx team is headed by Lead Chief Investigator, Adjunct Associate Professor Helen Frazer (Clinical Director, SVHM BreastScreen) and Chief Investigators Dr Davis McCarthy (SVI), Professor John Hopper (University of Melbourne’s School of Population and Global Health), Professor Gustavo Carneiro (University of Adelaide’s Australian Institute for Machine Learning) Dr Jocelyn Lippey (Breast Surgeon, SVHM and BreastScreen) and Associate Professor Peter Brotchie (SVHM Radiologist).

Helen and her colleague Peter Brotchie initiated the idea of using AI to improve the breast screen process in Victoria,” Davis explains. “They generated promising preliminary results showing how ‘deep learning’ AI models could achieve good accuracy in classifying mammogram images.” The proposal for a larger project and a successful Medical Research Future Fund bid followed – bringing university and medical institute researchers together with those working at the coalface of clinical care. The BRAIx team has now commenced ‘training’ a computer system using a ‘deep learning’ algorithm –a complex set of code that teaches itself to identify the most important features of raw data. Initially, the algorithm was trained to distinguish between normal and cancer images, using knowledge of the biopsy-proven outcomes of screening. Then it was tested on previously unseen full mammogram images. Early results suggest the algorithm will be able to compete with human performance. “Artificial Intelligence will become a key element in mammogram screening,” Helen affirms. “Our initial goal is to replace one of the two reads of each mammogram by an expert with AI, with the aim of providing faster, more accurate results. This can reduce the burden on individual experts, as well as on the healthcare system, where considerable resources can be consumed following up innocent abnormalities.” Google recently made headlines arguing that artificial intelligence could be more effective in spotting breast cancer than humans. The BRAIx project is designing an AI model best suited to Australia – including investigating consumer and clinician engagement and supporting AI approaches to identifying personalised risk factors relevant to Australian women and their care.

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Dr Davis McCarthy

FURTHER DEVELOPMENT

The BRAIx team will later this year test their algorithm alongside the human expert system, on the 240 daily scans at the SVHM BreastScreen clinic – providing a thorough assessment of the AI model’s performance. “We’re keen to develop the algorithm further – so it can give an annotated version of a mammogram with cancerous region highlighted and reasons for its decision,” Davis adds. The team will continue iterating and improving the algorithm over the next three years until they are confident that it can be advanced to clinical use. “This project has the potential to transform mammographic screening from the current ‘one-size-fits-all’ protocol. It opens the door to more nuanced screening that can incorporate a woman’s individualised risk profile, based on subtle imaging features the AI models learn,” Helen comments. This high-tech approach may yet prove a ‘friendly rival’ to human expertise, to the advantage of women’s better health.

Authors: Dr Davis McCarthy, Head, Bioinformatics & Cellular Genomics Unit, St Vincent’s Institute of Medical Research Dr Helen Frazer, Clinical Director, St Vincent’s Hospital Breastscreen Melbourne

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Image of a breast mammogram (as used in AR)

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HEALTH10X:

INNOVATION FOR GLOBAL CHANGE

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CHRISTOPHE KEREBEL

How Australia’s first global health accelerator is supporting translation of research to provide affordable, scalable solutions to the biggest health challenges.

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he role of data and technology in health and medical research has never been more prominent, or more necessary. The COVID-19 pandemic resulted in rapid implementation of telehealth in Australia and beyond, and a technologyenabled vaccine development and roll-out in recordbreaking time. Technological innovations in healthcare that garner the most public attention tend to be those from the cuttingedge of research and development – robotics, sensors, or precision medicine – but big data and technology offer potential for enormous impact in our daily interactions with the healthcare system, such as effective, secure digital health records, and remote access to primary care. The role of data and technology in health and medical research is also vital for the reduction of healthcare inequalities and gaps in emerging markets and underserved populations.

Health10x is a global health accelerator, designed specifically to address these problems. Delivered by the University of New South Wales (UNSW) Founders and The George Institute for Global Health, Health10x supports researchers and academic-built startups that are developing affordable and scalable solutions for major health challenges, and bringing innovative medical devices or digital health solutions to the people who need them most.

AFFORDABLE, SCALABLE, GLOBAL

With a focus on accelerating the business growth of startups developing affordable and scalable solutions for global health challenges – particularly the growing burden of non-communicable diseases and injuries (NCDIs) – Health10x is currently recruiting its third cohort. Startups and founders who participate and progress through the program are offered access to tailored health commercialisation modules and entrepreneurship education, ongoing coaching and skilled mentoring, access to prototyping facilities along with expert product design support, and the opportunity to receive seed investment. Evidentli, part of the first Health10x cohort in 2019, was founded out of the need for the application of artificial intelligence (AI) in clinical decision-making. Co-founder Dr Guy Tsfanat recognised that despite clinical decision support systems – which have been in use for more than 50 years – being shown to improve decisions, they were rarely, if ever, adopted in practice.

Dr Tsafnat began to investigate low adoption rates of decision support systems in clinical practice, and how to design systems that are practical for clinical use within the context of complex clinical environments. Upon recognising the global shortage of evidence that stems from a lack of skilled researchers, the cost of research, and the rate of waste in clinical research (more than 85% of research funds are not utilised effectively), Dr Tsafnat co-authored a 2013 BMJ paper on the use of AI to automate evidence-generation. In 2014 he co-created the Computable Evidence Lab (CEL) at Macquarie University, centred around the use of AI to accelerate the production of reliable evidence. In 2018, CEL evolved into Evidentli, a software company that commercialises research through an AI automation platform called ‘Piano’ – taking its name from Kurt Vonnegut’s first novel, about an engineer living in an automated world. With Piano, Evidentli is addressing the gaps in evidence-based medicine by empowering clinicians to create the evidence they need efficiently and accurately, with instant reproducibility. Another Health10x startup founded out of academic research is Walking Tall Health, developing a breakthrough we a ra ble me dic a l d ev ic e to as sist pe ople with mobility issues, like Parkinson’s disease (PD), to walk independently. With a vision to help 10 million people with PD and motor impairment globally, Walking Tall Health brings together expertise from Neuroscience Research Australia (NeuRA) and the UNSW Graduate School of Biomedical Engineering. Leading the research and development is Dr Matthew Brodie, a neuroscientist and engineer. Losing the ability to walk naturally is one of the early and most debilitating effects of PD, and places people at higher risk of falls and injury. Dr Brodie and his team are investigating how wearable technology can improve mobility and reduce or remove the ‘freezing gait’ experienced by people with Parkinson’s. A clinical trial is currently underway, with funding support from the Michael J Fox Foundation and Shake It Up Australia Foundation.

Authors: Dina Titkova, Health10x Program Manager, UNSW Founders and Vesna Todorovski, The George Institute for Global Health.

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A NEW CENTRE FOR HEALTH ANALYTICS ‘UNLEASHING THE POWER OF DATA TO IMPROVE DATA’.

An internationally leading paediatric campus in the use of data to improve all aspects of patient care, operations, education and research is being established in Melbourne.

he new Centre for Health Analytics physically brings together four organisations: the Murdoch Children’s Research Institute (MCRI); the University of Melbourne Department of Paediatrics; The Royal Children’s Hospital (RCH) Melbourne; and The Royal Children’s Hospital Foundation (RCHF). They will be located at at a single, purpose-built and multi-award-winning campus in the city of Melbourne. Melbourne Children’s is a fully integrated paediatric teaching hospital and research institute which is unique in Australia and acclaimed internationally. In August 2020, a generous five-year grant from The Royal Children’s Hospital Foundation was approved to create the Centre for Health Analytics to support, deliver and enable health informatics across the campus.

WHAT IS HEALTH INFORMATICS?

Health Informatics is the digital integration of medicine, information technology and science to improve patient care. Health Informatics is primarily about information, not about computers. The prime focus of health informatics is providing the right data, at the right time, presented

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in the right way, to clinicians, patients, researchers, managers, and others who use data to inform their decisions. Health informatics has the potential to affect how we prevent, treat and cure conditions, and how we influence policymakers and the government’s management of public health.

NEW APPOINTMENT

To support the establishment of the Centre for Health Analytics, Professor Jim Buttery has been appointed as the inaugural Professor of Child Health Informatics in the University of Melbourne Department of Paediatrics. Professor Buttery’s vision for child health informatics includes five pillars for improved use of data in direct patient care, patient care processes, public health, population health and policy, and engagement with our community. Professor Buttery is a senior clinical researcher and an infectious diseases physician with a strong track record of building and developing health services in hospital medicine and public health using informatics and data. He developed and continues to deliver Australia’s leading vaccine safety service, SAEFVIC.

SAEFVIC pioneered online vaccine safety reporting in Australia and was the first organisation to demonstrate the importance of reporting by community members. SAEFVIC has established novel informatics strategies for ensuring vaccine safety in the community, with further data innovations to help with COVID vaccine safety. These include innovative use of de-identified data from telehealth, emergency departments, general practice and residential aged care facilities.

FOUR INITIAL PROJECTS

As the Centre for Health Analytics commences, four exemplar projects will be the initial focus and learnings from these projects will guide how the Centre extends its work across the campus. 1. More than half of children in hospital are on antibiotics at any one time. This program is set to optimise use and reduce harm caused by antibiotics in children by identifying patterns of antibiotic prescribing in the hospital that lead to poor outcomes, and optimising pathways for empiric antibiotic choice and duration. Outcomes for patients and families will be improved through the reduction in the negative outcomes of antibiotic use.

2. Australian estimates indicate that 50% of children with diagnosed kidney disease have a genetic form of the condition with pre-natal onset. Children often suffer from birth and have more severe forms of the disease. Current pathways for diagnosis can be long and invasive, with surgery and dialysis as treatment options. By exploring data already captured in the hospital, patients who may have early signs of a genetic form of kidney disease will be identified and offered a genomic test that has the potential to provide rapid, accurate, cost effective diagnosis. 3. Central lineassociated bloodstream infections are a serious complication that can require significant treatment and a longer stay in hospital. Applying health informatics to an array of datasets to better understand the relationships between line use, maintenance, assessment and complications, the hospital will enable improved central line management and reduce these serious complications. 4. In Australia at least 50% of infants and children are prescribed at least one medicine each year. Unfortunately, the safety and effectiveness of many medicines are established from adult clinical trials. In the absence of paediatric trials clinicians are forced to select medicines and dosages based on nonpaediatric data. The advancement of sophisticated health informatics and data science along with new trial methodologies are introducing a new era of embedded clinical trials. The integrated culture of embedded trials will enable clinicians to undertake trials with shared resources and sophisticated statistical support through a centralised clinical research facility.

The Centre for Health Analytics, by delivering the above projects and in time many others, will increase the use of quality data on campus, leading to better health for Victorian children.

Author: Kate Lucas, Director Centre for Health Analytics & Professor Jim Buttery, Professor of Child Health Informatics, The University of Melbourne

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SPONSOR FEATURE

GSK Australia takes a look back at 40 years of the GSK Award for Research Excellence (ARE) and where some of it's notable winners are now.

The importance of funding for medical breakthroughs – what we’ve learnt from studying blood cells and cancers Author: Professor Nicos A Nicola AO PhD FAAHMS

While every medical researcher’s journey in science is different, I believe we all have a common goal – to find better ways to treat diseases and improve the health outcomes of patients around the world.

s a child, I was constantly asking questions – and this inherent curiosity of mine was rewarded when I discovered science. In science, I found an ethos and a culture that welcomed all of these questions, and provided a logical framework within which they might be answered. Science has given me the immense pleasure of continuously learning while forging a strong career. Originally, I began researching sophisticated but rather esoteric problems in the biochemistry field. While I enjoyed these studies through my degrees, I recall becoming increasingly frustrated that I could not see how the results would have any direct impact on understanding biology or impacting human health. For this very reason, I accepted an opportunity to join the Walter and Eliza Hall Institute (WEHI) in Melbourne in 1976 where I spent the rest of my scientific career studying blood cell development and function. My initial research was focused on determining how many different natural regulators of blood cell production – named colony-stimulating factors (CSF) – exist in the body to control the production of white blood cells. Over five years, I worked to purify one of these regulators called the granulocyte colony-stimulating factor (G-CSF). This regulator is responsible for stimulating the bone marrow to produce granulocytes, which are a type of white blood cell that fights infections. It also stimulates the release of blood stem cells into the bloodstream. The scientific discoveries about G-CSF led to its development as a clinical treatment that is still being used today and is benefitting millions of 54 INSPIRE 019 | 2021

cancer patients around the world. My research on CSFs also led to the discovery of a new protein, that we called the Leukaemia Inhibitory Factor (LIF). It has many biological effects on muscle, bone, blood cells, pregnancy and nerve cells. It is now widely used to maintain the growth of embryonic stem cells in the ‘test tube’ and these cells may find use in regenerative cellular therapies. The discovery of G-CSF that led to its clinical use in cancer chemotherapy made me the 1993 winner of the GSK Award for Research Excellence (ARE), then known as the Wellcome Australia Research Medal. It was recognised as one of the major research medals in Australia, and I felt humbled that they had chosen me. I knew that it would be fantastic for my career because such awards validate the quality and importance of your research for human health. I was not wrong. The funding associated with the Award was in a special category because it could be used where grant funds could not. The major impact of the Award was to give me some career security through a competitive advantage in applying for grants and fellowships, as well as enhancing my prospects for career progression at WEHI. There is no doubt that grant funding has always been competitive. However, it has come to the point that it is now nearly impossible for researchers to have a strong sense of security or stability in their careers. With the success rate for grant funding now at less than 20%, young researchers will face major career interruptions or

SPONSOR FEATURE

1993 Winner - Dr Nicos Nicola – Immunology, Walter & Eliza Hall Institute of Medical Research

Journey through time: GSK ARE winners Since 1980, the award recognises outstanding achievements in medical research focused on improving human health. It has supported l o c a l r e s e a r c h i n o n c o l o g y, v a c c i n e s , bioengineering, chronic diseases, autoimmune disease and virology.

1980 1981 1982 worse, including an impact on the quality of research and novelty of discoveries. Awards like the GSK ARE help to ensure researchers have the flexibility and the financial security they need to proceed with their important research work.

1983 1984

Over the last year, there has been increased public awareness of the crucial role medical researchers play in overcoming major health challenges. However, given the necessary focus on the coronavirus, funding to support local scientists working in other research areas has dropped significantly.

1985

Undoubtedly, there are more factors defining research success, and the working environment has a great role to play. However, without the necessary funding, team encouragement and research environment won’t work miracles.

1987

The more organisations turn their eyes upon this issue, the more ground-breaking discoveries we will live to see and the better patient experiences will be. Sinc e 198 0, the awa rd re c ognise s outsta nding achievements in medical research focused on improving human health. It has supported local research in oncology, vaccines, bioengineering, chronic diseases, autoimmune disease and virology.

Winner: Professor Nicos A Nicola AO PhD FAAHMS, Honorary Laboratory Head, Blood Cells and Blood Cancers Division, Walter and Eliza Hall Institute of Medical Research

1986

1989 1990 1991 1992 1993

Professor Tony Basten – Immunology, University of Sydney Professor John Chalmers– Cardiology & Neurology, Flinders University Professor Ian Gust – Virology, Fairfield Hospital, Melbourne Dr Graham Mitchell – Immunology, Walter & Eliza Hall Institute of Medical Research Professor Christopher Burrell – Virology, Medical & Veterinary Institute of Research Professor Len Harrison – Immunology, Walter & Eliza Hall Institute of Medical Research Professor Ian McCloskey – Neurology, University of New South Wales Professor John Funder – Endocrinology & Cardiology, Prince Henry’s Hospital Dr Murray Esler – Cardiology, Baker Medical Research Institute Dr Bruce Kemp – Biochemistry, St Vincent’s Hospital, Melbourne Associate Professor Alan Trounson – Embryologist, Monash University Professor Susan Pond – Bioengineering and Nanotechnology, University of Queensland Dr Nicos Nicola – Immunology, Walter & Eliza Hall Institute of Medical Research

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THE LAST WORD The Transformative Power of data and technology in medical research We have just experienced an extraordinary year, one where healthcare and medical research have been centre of the world stage. Efforts by scientists, clinicians and health professionals across the globe to combat the huge challenge of the COVID-19 pandemic have delivered remarkable results in the face of sometimes overwhelming odds.

OVID-19 brought into focus many of the challenges that our healthcare leaders and advocates meet every day, in an industry riddled with complexity and uncertainty, and where silos and obstacles are a constant burden. Telehealth was fast-tracked to deliver primary care under pandemic conditions, and with digital health now in the spotlight, Digital Health CRC tapped into our participant base of over 70 organisations across the industry, academia and government sectors to fund several projects in response. One of these, a collaboration between Macquarie University and a range of health sector organisations to analyse COVID-linked information from over 800 general practice clinics in NSW and Victoria, continues to deliver important primary care data.

1 2 3

DATA OVERLOAD

It’s perhaps no surprise that much of the research focus of the Digital Health CRC is on data. Health data is at the centre of disease prevention, diagnosis, treatment and discovery, and our use of data and digital technology in health and medical research has never been higher. But data is only valuable when we have the right tools to gain insights from it. At Digital Health CRC, we have a number of projects underway using various tools to gather useful insights from unimaginably large datasets. One example is a very rich population health dataset containing years of Medicaid health claims data from ten US states, provided by our partners at healthcare technology company, HMS. Our world is awash in data, including health-related data, and it’s growing exponentially. A 2013 study found that 90 per cent of the world’s data had been created in the two years previous1. IBM notes that by 2020, health data doubled every 73 days2. The variety of health-related data is expanding, from wearables tracking people’s heart rate and activity levels, to apps tracking our sleep and the quality of the air we breathe, to medical devices such as pulse oximeters, glucose monitors, blood pressure monitors and more. Data is collected from electronic health records, private and government insurer claims, medical imaging, laboratory and pharmacy records – the list goes on and is ramping up as genomic data is added to the mix. It’s not surprising that most health professionals are overwhelmed by the volume of published research one estimate suggests health professionals needed 167 hours of weekly reading just to keep up with new professional insights3.

Big Data, for better or worse, Science Daily, 22 May 2013 The future of health is cognitive, IBM Healthcare and Life Sciences, June 2016 IBM wants Watson to serve as a prosthetic brain for doctors, The Economist, 14 Feb 2013

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ARTIFICIAL INTELLIGENCE – A SOLUTION?

In parallel to the explosion of data, we see a fundamental shift in technology, from programmable systems that use largely static data and logic, to artificial intelligence (AI) and machine learning; technology that is trained not programmed, has immense capacity and can ingest and understand natural language. AI may well offer a solution to data overload, helping us gain insights from information, by using data sources (such as longitudinal records and patient data) together with knowledge sources (like scientific papers, guidelines and publications).

Digital Health CRC has a unique position in Australia, orchestrating the power of the eco system to solve real world problems, and at the same time, create and stimulate an industr y through innovation and commercialisation. This supports our key mission of economic development, jobs growth and talent attraction. Collaboration is key to putting Australia at the forefront of digital technology identification, evaluation, incubation and innovation, ensuring we can take advantage of new and emerging technology in health and medical research.

AI systems are able to ingest and understand a huge amount of information, ex tending, improving and democratising human expertise. Many already deliver huge value in medical research and treatment.

The digital health market is worth almost $2 billion in Australia, $200 billion globally, rising to over $500 billion over the next few years. As an intermediary, connecting real world problems with digital solutions, Digital Health CRC aims to identify the best of global technology and support its localising for Australia; and to identify the best of Australian technology and support its adoption here, and opportunities to export globally.

Digital Health CRC is working with the University of Sydney and Northern Territory Health to help develop AI-based image recognition that enhances diagnosis and triage of ear disease in Aboriginal and Torres Strait Islander children living in rural and remote Australia.

Data is key – and through the use of innovative technologies, underpinned by research excellence, we will help to solve the most pressing challenges in health and medical research, driving remarkable outcomes and accelerating discovery.

While AI systems can reason, learn and interact – they still follow data and algorithms developed by humans, raising the need for transparent and evidence-based reasoning and decision making. We’ve partnered with the Gradient Institute to offer courses on Ethical AI to our participants, aimed at board and senior executive level, at leaders across health, and at data scientists, as part of our commitment to help build Australia’s future digital workforce. Training tomorrow’s workforce will play a critical role in maximising a new partnership between humanity and technology.

HARNESSING THE POWER OF DATA TO TRANSFORM

Data has the power to transform medical research, this is true – but it is how we harness that tsunami of data that engulfs us, that is the key to this transformation. Harnessing the power of data to transform our health system cannot be done in isolation.

Dr Terry Sweeney, CMG CEO of Digital Health Cooperative Research Centre

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