INSPIRE Issue 20: A focus on collaboration in Health and Medical Research

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A FOCUS ON NATIONAL & INTERNATIONAL COLLABORATION IN HEALTH & MEDICAL RESEARCH.

FOREWORD One way of looking at the importance of collaboration in national and international health and medical research is that none of us are as smart as all of us. And I agree with the American author Ken Blanchard who coined the phrase.

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he events of the COVID-19 have shown Australia and other countries, that collaboration is vital to propelling advances in health and medical research. Top minds and top practitioners across the globe have come together to deal with this one in 100-year challenge.

While it is not yet solved, we are well on the way to finding the best possible solution for us all.

This wasn’t achieved alone. Our international partner organisations Re s e a r ch! A me r ic a , Re s e a r ch Canada, Research Sweden and New Zealanders for Health Research, could not agree more.

The world has been jolted by the stressors of the pandemic and while all sectors are scrambling to establish a new normal, it has been health and medical research communities who have provided leadership, care and guidance as we navigate our way through the impact.

More than ever, we must leverage each other’s comparative advantages in research and technology. So why stop now. Deeper collaboration can help us achieve so much more, in terms of our health and in turn, our wealth. We know Australia’s track record in research is exemplary.

We are close to the top in our efforts.

How do we make it even better and put that excellence to work for us all? There is so much to be gained, including the chance to fast track

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the discover y and development of pharmaceuticals and medical technologies, and set a goal to establish Australia as a leader in life changing medical innovation. These possibilities are real.

Whilst effective collaboration has been a core driver of Australia’s response to the COVID-19 pandemic, there is still much to do to realise the real benefits of collaboration.

The fields of research, education, and clinical practice are interrelated; research informs education, which in turn influences clinical practice and patient care. In a complementary manner, the needs of practitioners, patients, and educational systems should inform what research may be needed.

If we wish to succeed in improving outcomes for students, practitioners, patients, and populations, then we have to work together in these environments. Evidence shows clinically research active hospitals have better patient care outcomes, surely that in itself is a driver of excellence.1 This edition of INSPIRE showcases this potential with some excellent projects like the Sa x Institute’s Australian Prevention Partnership Centre that established a pooled funding model to allow partners to invest in research that addresses prevention priorities that are shared across jurisdictions and agencies.

A novel approach from the National

https://pubmed.ncbi.nlm.nih.gov/30784152/

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Ageing Research Institute (NARI) sees them partnering with Australian f ilm a nd digital me dia to raise dementia awareness in culturally and linguistically diverse communities, through their Moving Pictures Project.

In our universities, where most of our research is done, Flinders University’s Point of Care Testing Networks have utilised partnerships to deliver rapid pathology tests to rural and remote areas; Deakin University has employed digital technology and telehealth to promote a collaborative research plat form for t ype t wo diabetes; and Grif fith University is collaborating with international partners in Japan and the UK to drive ground-breaking research into treatment for chronic fatigue syndrome.

There are many such examples of excellence across our amazing sector, and we should enable many more, through ensuring sustainable investment for our funding bodies, to ensure the building blocks of great research into the future but also develop pathways to embed great research into our health structures to realise the ambition of the world’s best health system – there is no reason it can’t be!

Healthy wishes Nadia and the Research Australia Team

Gala Dinner and Award Ceremony Thursday 9 December 2021 Four Seasons Hotel Sydney

CONTENTS

Australian Health & Medical Research & Innovation

08 Events overview RESEARCH AUSTRALIA

32 Harnessing worldwide expertise to improve acute wound care services GRIFFITH UNIVERSITY

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International collaboration features

20 Call for scientific community to increase diversity and inclusivity in medical research CHILDREN’S MEDICAL RESEARCH INSTITUTE

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

CHRISTOPHE KEREBEL

22 Danish/Australian online innovation empowers healthcare DEAKIN UNIVERSITY

30 Making a MARC NATIONAL AGEING RESEARCH INSTITUTE

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

My Twitter : @chriskere

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.

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.

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E-cigarette research

Point-of-Care Testing Networks Expand Access to Pathology Testing

CURTIN UNIVERSITY

FLINDERS UNIVERSITY

CONTENTS

Australian Health & Medical Research & Innovation

42 Collaborative research is the key UNIVERSITY OF WESTERN AUSTRALIA

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Digital approaches to improving care at the end of life

International groundbreaking research drives treatment for ME/CFS

FLINDERS UNIVERSITY

GRIFFITH UNIVERSITY

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Tackling the impact of concussive injury in sport

Why we are stronger together

International partnership transforming adolescent health in the pacific

UNIVERSITY OF NEWCASTLE

UNIVERSITY OF SYDNEY

UNIVERSITY OF SYDNEY

70 Zinc discovery paves the way for new cardiovascular treatments FLOREY INSTITUTE OF NEUROSCIENCE AND MENTAL HEALTH

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The face of disaster

NHMRC Centre of Research Excellence in Medicines Intelligence

UNIVERSITY OF MELBOURNE

UNSW SYDNEY

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

54 Moving Pictures NATIONAL AGEING RESEARCH INSTITUTE

THE LAST WORD

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Donated breast milk to help more babies

Showcasing a selection of the 2020-21 Award Nominees

RED CROSS LIFEBLOOD

RESEARCH AUSTRALIA

86 Growing impact through collaborations and partnerships PAUL FLYNN, THE HOSPITAL RESEARCH FOUNDATION GROUP

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EVENTS OVERVIEW UNIVERSITY ROUNDTABLE The Research Australia University Roundtable on 26 May was attended by 40 representatives from 29 of Research Australia’s university members. Continuing from the Roundtable in March, the theme was the role of the clinician researcher and how we can better support it.

researcher fellowships. He also referred to datasets held by the Department of Health and how these could be better utilised to support improvements in health care delivery, and the role of clinician researchers in supporting health system improvement.

Professor Stuart Carney is Deputy Executive Dean and Medical Dean, Faculty of Medicine, University of Queensland. Stuart presented on work he had undertaken work on the role of the clinician researcher for the Group of 8 in a submission to the Australian Government’s National Medical Workforce Strategy. This focused on training and career development for the role.

The University Roundtable will continue to explore the role of the clinician researcher at the next Roundtable in August and consider how we can best contribute to various initiatives currently being taken in this area.

Paul McBride is First Assistant Secretar y of the Medical Benefits Division of the Australian Government Depar tment of Health. Paul spoke about how the Department of Health viewed and supported clinician researchers. Paul highlighted MRFF funding for clinician

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Research Australia’s Head of Policy, Greg Mullins, provided a policy update and a summary of the Commonwealth Budget relevant to health and medical research. Nadia Levin, Research Australia CEO, led a discussion on work Research Australia is currently undertaking to plan for the future of health and medical research as part of Australia’s recovery from COVID-19.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

HEALTH ECONOMICS ROUNDTABLE Research Australia’s eighth Health Economics Roundtable was hosted virtually on 19 May 2021. And with the Budget released a week prior, the Roundtable opened its doors to the entirety of the Research Australia membership to share with attendees how the 2021-22 Budget stacked up for health and medical research.

The Roundtable, chaired by Research Australia Chair, Associate Professor Annette Schmiede, heard from Professor Henry Cutler, Inaugural Director of Macquarie University’s Centre for the Health Economy (MUCHE); Dr Katie Allen MP, Federal Member for Higgins; Professor Ian Hickie AM, Co-Director for Health and Policy at the University of Sydney’s Brain and Mind Centre; and Associate Professor Frances Batchelor, Director of Clinical Gerontology at the National Ageing Research Institute.

Drawing on the extensive analysis undertaken in MUCHE’s annual Health Report on the Budget, Henry gave an overview of the big budget takeaways for health. Henry highlighted to attendees that the Government is playing catch up after resources were shifted to the pandemic last year and that , as a consequence, no attention was given to grand challenges such as obesity and chronic disease.

Lucy Clynes, General Manager and Greg Mullins, Head of Policy at Research Australia also briefed attendees on the

impact of the 2021 Federal Budget across the health and medical research pipeline.

With Aged Care and Mental Health being the ‘big winners’ of this year’s Federal Budget, Ian and Frances took a deep dive into what changes we can expect to these areas. Both speakers underlined that the role of health and medical research needs further defining under these key reforms. Ian stated that we need to better understand what works when it comes to mental health and proposed that research efforts to establish a more comprehensive modelling of program efficacy and better evidence linking programs to health outcomes would be good solutions.

The Roundtable is now in its fourth year and gaining momentum in the health policy space, Research Australia member organisations are invited to formally nominate delegates to the Roundtable. From time to time, Research Australia will also open attendance to all members, where key economic concerns (like the Federal Budget) are on the agenda.

Research Australia member organisations that did not attend the last Roundtable are also most welcome to nominate delegates to the Roundtable. To nominate a delegate or raise possible topics for the next Roundtable, please email lucy.clynes@researchaustralia.org.

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PHILANTHROPY ROUNDTABLE Now in its second year, Research Australia’s Philanthropy Roundtable was hosted virtually on 31 March 2021.

The Roundtable heard from The Hon. Jaala Pulford MP, Minister for Innovation, Medical Research and the Digital Economy; The Hon Dr Andrew Leigh MP, Shadow Minister for Treasury and Shadow Assistant Minister for Charities; Mr Sean Murray, CEO of the Mito Foundation; and Ms Mara-Jean Tilley, Director of the Garvan Foundation.

Victoria has been a long-standing leader in health and medical research and attendees at the Roundtable heard from the State’s Government and the Opposition on the vital role of philanthropy in funding health and medical research.

The Hon Dr Andrew Leigh also spoke on the power of collaboration between philanthropic and other funding organisations.

Minister for Innovation, Medical Research & the Digital Economy | Victorian Government

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Sean Murray and Mara-Jean Tilley gave an industry perspective on philanthropic funding for health and medical research. Sean’s presentation focused on the importance of philanthropic funding to Australian health and medical research and how philanthropic organisations can fill funding gaps.

Mara-Jean Tilley shared the Garvan’s priorities for the development of their new Strategic Plan and the thinking behind their innovative ‘Disease Dilemmas’ fundraising campaign.

Only Research Australia members in the philanthropic space are eligible to attend these Roundtables, but we do encourage guests to attend who may be considering joining the alliance.

To register your interest in being a guest at this forum please email sally.shepherd@researchaustralia.org

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

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Shadow Assistant Minister for Treasury | Shadow Assistant Minister for Charities | Federal Member for Fenner | Australian Government

Mara-Jean Tilley, Director, Garvan Foundation

Sean Murray, CEO, Mito Foundation

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INTERNATIONAL FEATURE

RESEARCH!SWEDEN COLLABORATES IN RESPONSE TO COVID-19 Research!Sweden was created in 2010 and is a politically independent, non-profit foundation. Our vision is that medical research and companies will develop in or move to Sweden and that medical advances will benefit the population as fast as possible.

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CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

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esearch!Sweden’s mission is to inform and raise awareness about the importance of medical research for health and prosperity. We do this by providing key decision makers with facts and policy advice, and by creating a constructive climate for discussing change. In 2014 we created the memberorganization “Agenda for health and prosperity” where 34 organizations join forces to collaborate under the leadership of Research!Sweden.

The members are evenly balanced between academia, healthcare, business and patient-organisations. We work with a systems approach and a long-term view to improve the environment for medical research, business and healthcare.

A STRATEGY FOR SWEDISH LIFE SCIENCE

Our first project was to lay a foundation for a strategy for life science in Sweden. Getting all the different actors around the table, sharing the analyses that Resesarch!Sweden had prepared as background material and agreeing on what needed to be prioritised at a national level was an exhausting, but necessary and very rewarding experience.

Several meetings and months later we had agreed on four goals and 14 prioritised policy-proposals. Our report included a thorough analyses as well as action-plans for each proposal.

We presented the report to the three ministers of research, industry and health who all attended a conference we arranged at the Karolinska Institutet in early 2015. At that time the Government had recently appointed a life science-coordinator who also was there to receive our report.

That was the start of a constructive collaboration and the coordinator later stated in a film that he made great use of our input, as he could move faster on the basis of our proposals which had already been agreed upon by such a broad representation of the life science-actors in Sweden.

CONTINUING TO ADAPT

Since then, we´ve continued to work in a highly structured way with workshops in areas that the members decide on in yearly strategy-meetings. Research!Sweden develops the results from workshops into reports and also transfers the knowledge through conferences and political meetings.

That way we really make a difference in keeping policymakers alert to the advances in science and the impacts these advances have on the development in life science and health care. Adding to that are the policy-proposals we develop for Sweden to keep a competitive edge in this field, with the end goal of increased health and prosperity.

This year the focus has been on the issues of health threats, such as the present pandemic.

My Twitter : @chriskere CHRISTOPHE KEREBEL

The pandemic that started in 2020 has shown that our society is very vulnerable to unforeseen outbreaks of new diseases. Healthcare and medical research and development are at the forefront of managing and combating a pandemic. Great efforts have been made, but it has also become clear that there are parts of the system that are not adapted to today’s global health challenges.

The broad composition of the “Agenda for Health and Prosperity” means that we can provide a picture of how the pandemic has affected medical research and development in healthcare, academia and companies from a variety of perspectives. It gives us a unique opportunity to jointly identify what strengths and weaknesses Sweden has when it comes to conducting and benefiting from medical research and development during a crisis.

We have created an overall picture of lessons that we presented in a new report in April 2021. Based on the analysis, we have developed proposals for measures that need to be implemented to strengthen Sweden’s crisis preparedness by taking greater advantage of medical research and development in the event of future health threats.

Our top 10 policy advice for greater benefit from research and development for future health threats are gathered into four areas: • A resilient research environment is required to cope with future unknown crises • Sharing of health and care data must work in both crisis and normal situations • Research competence in healthcare must be secured in the face of future health threats • T here must be an infrastructure that allows clinical studies to be performed even in a health crisis situation The four areas are of course wide at first glance, but our ten proposals are specific and by including action plans we hope that we will be more resilient when the next health crises comes along.

When we engage politicians on the subject, we begin by thinking about which areas we all have an interest in developing next, and so our collaboration and work for a stronger life science in Sweden continues.

Author: Anna Nilsson Vindefjärd MBA PHD, Founder and Secretary General, Research!Sweden

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INTERNATIONAL FEATURE

RESEARCH ADVOCACY IN 2020 – A YEAR WE WON’T FORGET Research!America’s advocacy alliance has played a pivotal role in supporting the U.S. research enterprise for 30 years. But the COVID-19 pandemic made this past year unlike any other.

Dr. Francis Collins & Renee Fleming

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CHRISTOPHE KEREBEL

ur sense of urgency, high in any year, was greater than ever. Together with our alliance members from academia, patient groups, scientific societies and industry, we worked hard to push for the resources needed to propel COVID-19 R&D and bolster the public health response to the pandemic. We also:

• Promoted technological transfer empowered by the Bayh-Dole Act as critical to ensuring basic research is translated into medical advances.

• Raised awareness about the critical roles both the public and private sectors play in fueling medical and public health progress, as exemplified by the public-private partnerships working to overcome COVID-19.

• Stood in vocal opposition to sidelining science in federal decision-making and compromising the international diversity of STEM students at U.S. universities.

Our alliance had tangible impact. Working closely with partners across the R&D and public health ecosystem, we boosted financial support of the National Institute of Health, building on the agency’s decades of growth, among other policy accomplishments.

To best serve our members during this uncertain time, we pivoted to weekly virtual meetings instead of monthly conference calls and hosted guest speakers from across the medical and public health research ecosystem.

(Access recordings on our You Tube page here.)

Together with our partners, Research!America hosted virtual panel discussions and interactive roundtables focused on COVID-19 treatments, the effects of the pandemic on non-COVID research, RNAi technology, novel financing for high-risk, high-reward research, impact on young investigators of proposed Administration actions affecting student visas, and the implications of the November election.

In addition, graduate student and post-doc led science policy groups from universities across the country competed to receive a Research!America civic engagement microgrant award. 15 groups were selected to create projects to dialogue with local public officials and community leaders around science policy issues as diverse as cybersecurity, water pollution, and scientific ethics.

We continued the 20-year tradition of the National Health Research Forum which gathers federal policymakers, leadership from across our broad membership, and national media to take an unvarnished look at issues that are vital to the well-being of our nation, our economy, and most importantly, patients. In 2020, via a virtual platform, we held a lively three-day event of roundtables, interviews, fireside chats, and a “Flashtalk” competition for early career researchers.

My Twitter : @chriskere

We also continued CHRISTOPHE our practice of commissioning surveys KEREBEL to keep a finger on the pulse of U.S. public opinion.

This data is regularly used in research advocacy efforts with elected officials, press statements, social media, speeches and presentations, congressional testimony, and much more.

Each year, Research!America hosts our Annual Advocacy Awards event to honor those who have made a difference in research advocacy. Because of COVID-19, we had to cancel our March 2020 awards with one day’s notice but we celebrated both the 2020 and 2021 honorees with a wonderful virtual event in May 2021. As Research!America CEO and President Mary Woolley declared, “we gather to honor researchers and advocates whose contributions to medical, public health, and scientific progress, have conveyed profoundly significant societal benefits.”

“Americans are seeing what matters,” said President Joe Biden at the opening of the program. “It matters that we lead with science and invest in research.”

Among the honorees were Drs. Katalin Karikó of BioNTech and Drew Weissman of the University of Pennsylvania whose work led to the use of messenger RNA, or mRNA, in the development of key COVID-19 vaccines. As they discussed the ups and downs of the basic research that eventually led to their breakthroughs, Dr. Weissman reflected, “I never tell my grad students to spend 20 years working on something that isn’t working. But we knew that this was important. We knew it had enormous potential.

So we kept it up.”

“What did we learn from the rapid spread of this pandemic that will better equip us for the future?” asked Oprah Winfrey as she sat down for a virtual conversation with Dr. Tony Fauci, Director of the National Institute for Allergy and Infectious Diseases and an award honoree.

“We have lived through history, you and I,” Dr. Fauci responded, “and what we’re learning is you’ve got to be prepared, really serious preparation at the global health level and at the scientific level.”

The program closed with a heartfelt duet of “Hallelujah” from Isadore Rosenfeld Award for Impact on Public Opinion honoree and world-renowned soprano Renée Fleming and Dr. Francis Collins, Director of the National Institutes of Health. Raising their voices in song, gathered in praise of research and medical progress, they showed how science has the ability to empower the world. We at Research!America look forward to continuing to work with our fellow research advocates in Australia and across the globe towards this shared vision and vital goal.

You can watch the program here.

Author: Jenny Luray, Vice President, Strategy and Communications, Research!America

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INTERNATIONAL FEATURE

COLLABORATING ACROSS CANADA Research Canada: An Alliance for Health Discovery is a multi-stakeholder alliance often likened to the Lighthouse in the Canadian health research and innovation ecosystem, calling divergent interests from the academic, private and voluntary sectors to a common shore and effecting a collaborative advocacy process that simplifies and streamlines health research and innovation advocacy messaging to government.

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ltimately, our mission is to improve the health and prosperity of Canadians by championing Canada’s global leadership in health research and innovation. Our philosophy is simple—health research is a shared benefit and shared responsibility, and all Canadians are its steward.

As a multi-stakeholder alliance, our more than 90 Members are drawn from all sectors dedicated to advancing science and developing innovative solutions to improve our health and well-being, including health research institutes, health charities, regional health authorities, scientific societies, universities and their faculties, colleges, health professional associations and health and biosciences companies. Thanks to this widereaching representation, Research Canada is uniquely positioned to educate policymakers and the public about the entire health research and innovation ecosystem.

This ecosystem lens is embedded in all of Research Canada’s policy positions. Underlying all of our work is the understanding that a functional health research and innovation ecosystem requires a balanced policy and investment climate and that sector-specific advocacy is more powerful when it is situated within a larger, integrated and coherent framework.

Our success in delivering evidence-informed positions to policymakers begins with our ability to convene stakeholders, build cross-sector awareness and understanding, broker dialogue and foster alignment.

Research Canada regularly convenes stakeholders that reflect the diversity of our ecosystem to share information, align on messaging and collaborate on advocacy initiatives, including through our Policy Engagement Committee, Membership Development and Programs Committee, and recent Expert Advisory Panel on the Contribution of the Biopharmaceutical Industr y to Canada’s Health Research and Innovation Ecosystem.

My Twitter : @chriskere CHRISTOPHE KEREBEL

Canada’s advocacy program—the Parliamentary Health Research Caucus (PHRC), a non-partisan forum of Parliamentarians dedicated to educating politicians on the social and economic benefits of health research and innovation. For over a decade, PHRC events have brought health researchers and innovators from across the country to Parliamentarians—both in person and, now, virtually—to learn about health research and the individuals who make it all happen.

We were also inspired by Research Australia’s Thank You Day campaign which recognized and rewarded researchers for their invaluable contributions to the health and well-being of Australian citizens. It was this campaign that inspired Research Canada’s Leadership in Advocacy Award Program where, each year, we recognize and celebrate Canadian health researchers and innovators as well as Canadian organizations dedicated to health research and health innovation advocacy.

Being part of an international group of health research advoc acy organiz ations has be e n invaluable to Research Canada and we will always be grateful to Research!America and Research Australia, in particular, for what both organizations generously provided to us in our formative years. Here’s to more international collaborative advocacy in our futures!

Formed in 2005 out of the Council for Health Research in Canada, one of Research Canada’s first steps was to meet with our international partners—Research!America and Research Australia—and learn what we could about their approaches to national health research advocacy.

Several activities of Research!America—including their national public opinion poll on health research, America Speaks, and their Your Candidates, Your Health election initiative—inspired Research Canada to develop our own versions of these initiatives.

From Research Australia, we adopted the lobbying strategy and ethic which emphasized meaningful engagement with politicians through more intimate discussions. It was from this perspective that Research Canada’s President and CEO sat down with Senator Wilbert Keon in 2009 for tea and a discussion that would ultimately lead to the formation of the staple of Research

Deborah Gordon-El-Bihbety

Author: Deborah Gordon-El-Bihbety, President and CEO, Research Canada 2021 | INSPIRE 020 17

INTERNATIONAL FEATURE

COLLABORATING GLOBALLY. ADVOCATING LOCALLY. New Zealanders for Health Research (NZHR) is the most recent health research advocacy sibling organisation to become part of what we refer to as our global family of five. After a long gestation we came into being in November 2015.

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espite not going by the family name of Research! New Zealand, we have taken many of our cues from our older siblings, including the content and look and feel of our public opinion polls.

We take a keen interest in the content of their communications which tell us we are not alone in our quest to improve how health research is valued as a contributor to improved health and economic outcomes; indeed we include snippets from them in our own newsletter (Health Research Saves Lives) to reinforce our messaging here in New Zealand. And we particularly appreciate having Research Australia’s Chief Executive, Nadia Levin, as a member of the NZHR Board.

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Chris Higgins, Chief Executive, New Zealanders for Health Research

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

As New Zealand’s peak body representing the entire health and medical research pipeline, one of our paramount and continuing aims is to see investment in health and medical research increase from all sources – including government, industry and philanthropy. Direct government investment in health research in New Zealand currently stands at 0.61% of government health care costs – and falling, and we estimate that total investment in health R&D from all sources is 1.2% of the total government, business and society costs of living with and responding to ill health1.

This places New Zealand as the worst family of five performer, as illustrated2 3, which is all the more concerning given that all of us are dissatisfied with our respective countries’ investment levels. Moreover, the figures also suggest that as a contributor to the global health research effort, New Zealand should be doing more to ensure that it is pulling its weight internationally.

NZHR believes that to achieve comparability with other small advanced economies the figure for both the health system and society as a whole should be at least 2.4%. We advocate for direct government investment in health research to achieve this 2.4% target over ten years, requiring increases of 18% per annum over the period as illustrated.

Increased investment in health research will assist in achieving NZHR’s second main aim of achieving improved health outcomes and more effective and efficient service delivery by embedding health research as an essential component of the New Zealand health system. The imperative for this has consistently been reinforced to us by a cross section of health research stakeholders in the commercial, government and philanthropic sectors, and a once in a generation opportunity to progress this has been presented by the New Zealand government’s intention to reform this country’s health system.

Indeed the New Zealand Productivity Commission has this year produced a report4, commissioned by Ministers of Finance, Economic Development and Trade and 1 NZHR. Briefing for Incoming Ministers of Health and Science, Research and Innovation. November 2020. https://www. nz4healthresearch.org.nz/wp-content/uploads/2020/11/NZHRbriefing-paper-for-incoming-Ministers-241120.pdf 2 Higgins C. Health Research: A Public Health Imperative.

Poster Presentation. 16th World Congress on Public Health.

Rome, October 2020. https://www.nz4healthresearch.org.nz/ wp-content/uploads/2020/10/Rome-public-health-conferencepresentation-260920.pdf 3 Higgins C. Health Research Saves Lives. European Journal of Public Health, Volume 30, Issue Supplement_5, September 2020, kaa166.1262, https://doi.org/10.1093/eurpub/ckaa166.1262.

September 2020 4 New Zealand Productivity Commission (2021). New Zealand firms: Reaching for the frontier. Final report. Available at www.productivity. govt.nz/inquiries/frontier-firms/

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Export Growth which recommends (in response to an NZHR submission) 5 that “the Government should use its intended major health system reform to improve the mandate, funding and incentives for DHBs to participate in the health innovation ecosystem”.

In addition to our family of five NZHR also looks to the UK for inspiration, where their health research investment agency, the well-funded National Institute for Health Research (NIHR) is embedded as part of the National Health Service (NHS). In the wake of the Covid 19 pandemic the UK government is developing a new vision for the future of UK clinical research delivery, with their policy paper6 affirming that “clinical research is the single most important way in which we improve our healthcare – by identifying the best means to prevent, diagnose and treat conditions”.

NZHR fully agrees with this af firmation, with the qualification that we would have said “identifying and implementing”. We also believe that a key measure of the effectiveness of any country’s health system is the extent to which its citizens live well to a “ripe old age”. Yet here in New Zealand about 5000 people per year die prematurely from amenable conditions7, which represents the tip of a much bigger iceberg of antecedent morbidity.

NZHR maintains that New Zealand’s reforming health system should as a minimum be guided by a vision of eliminating unnecessary premature mortality and that working towards this will require well-funded, and translated, health and clinical research to feature as a central component of how the reforms are implemented.

As the proposals currently stand none of these elements are prominent, and addressing this has become our immediate number one challenge.

5 NZHR. Submission on New Zealand Productivity Commission/ Te Kōmihana Whai Hua o Aotearoa Draft Report “New Zealand firms: Reaching for the frontier”. February 2021. https://www. nz4healthresearch.org.nz/wp-content/uploads/2021/02/NZHRsubmission-re-New-Zealand-firms-reaching-for-the-frontier.Productivity-Commission.-Dec-2020.-030221.pdf 6 UK Department of Health and Social Care. Saving and improving lives: the future of UK clinical research delivery. March 2021. Saving and improving lives: the future of UK clinical research delivery - GOV. UK (www.gov.uk) 7 NZHR. Briefing for Incoming Ministers of Health and Science, Research and Innovation. November 2020. https://www. nz4healthresearch.org.nz/wp-content/uploads/2020/11/NZHRbriefing-paper-for-incoming-Ministers-241120.pdf

Author: Chris Higgins, Chief Executive, New Zealanders for Health Research

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CALL FOR SCIENTIFIC COMMUNITY TO INCREASE DIVERSITY AND INCLUSIVITY IN MEDICAL RESEARCH

95% of human cell lines used in countless medical research studies are of European descent.

New initiatives needed to provide access to underserved and under-represented populations

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n a collaborative report published in Cell, scientists from Sydney and New York describe the critical worldwide need to improve the diversity of cells used in medical research. Currently, 95% of all human cell lines used in research are of European descent. The authors provide actionable steps that researchers and the biomedical community can take to promote more inclusivity in preclinical and basic science research.

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he commentary, “Ancestry Matters: Building inclusivity into preclinical study design,” is coauthored by Sophie Zaaijer, PhD, who cofounded FIND Genomics (findgen.bio), a company that aims to improve reproducible cell-based science through its genetic cell tracking software “FIND Cell”, and is affiliated with Cornell Tech, New York, and by Amanda Capes-Davis, PhD, from Children’s Medical Research Institute (CMRI) in Sydney, Australia.

Human cell lines play a vital role in medical research.

About a thousand cell lines are commonly used and kept in storage, such as at CellBank Australia, which was founded by Dr Capes-Davis. The authors of this publication point out that most of the commonly used cell lines were sourced in the 1960s and 1970s and predominantly come from people of European descent.

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The authors emphasise that lack of action now could have a far-reaching negative impact on the future of precision medicine for people of non-European ancestry.

“We explain in our report how the lack of diversity had slipped into biomedical research unconsciously yet systematically,’’ says Dr. Zaaijer. “Now the time has come to correct this inequity.”

Dr. Zaaijer adds, “Let’s take drug discovery as an example; a process that heavily relies on human cell lines for initial drug screening. If most of the cell lines used to discover new drug treatments are from people of European descent, do those drugs work equally well in non-European individuals? More and more evidence has come to light showing that, unfortunately, this is not always the case.”

Some diseases are more common in par ticular communities, such as the Ashkenazi Jewish community, which has a high rate of genetic diseases such as cystic fibrosis and breast and ovarian cancer. The African American community has a relatively high rate of prostate cancer in men – yet only one in ten prostate cell lines regularly used in research is of African descent. Lack of diversity in prostate cancer cell lines means that initial anticancer drug screening may miss compounds that are particularly effective for African American men.

CONSCIOUS INCLUSION OF DIVERSE CELL LINES IS IMPORTANT FOR PERSONALISED MEDICINE

The biomedical landscape is slowly changing, partially driven by new funding models. In a new research initiative being spearheaded by the New York Genome Centre, leaders of the New York City cancer research community have joined together to advance cancer genomics and its practice in clinical care by leveraging the City’s large and diverse population.

This innovative collaborative project, Polyethnic-1000, is designed to deepen understanding of the contributions ethnicities make to the incidence and behaviour of cancers, thereby improving outcomes for many patients, especially those who currently lack access to the most recent advances in medical science. In September 2020, Polyethnic-1000 awarded grants to fund seven projects that address the role of ethnicity in several major cancer types, taking advantage of the diversity of patients being

treated at health care institutions throughout the New York City area.

“Considering the genetic variation within the human population is critical for providing personalized care”, says Nicolas Robine PhD, Director of Computational Biology at the New York Genome Centre.

When you or your loved ones donate cells for science – wouldn’t you want your cells to be actually used for developing effective treatments in the lab?” Dr Zaaijer asks. “It is time for more conscious and strategic consideration of cell line inclusivity in preclinical and fundamental research by laboratory scientists, out of respect for cell and tissue donors and to better serve the needs of all communities.”

Change is not a simple process, particularly for cell-based research projects which can take many years to complete.

Improving diversity means changing habits and managing more cell lines to ensure that many ancestral backgrounds are included. These efforts may form a serious burden for scientists working with cell lines each day.

“We saw an urgent need for tools to make organising, collaborating and tracking cell lines easy,” Dr Zaaijer says. To address that need, FIND Genomics developed a cutting-edge software platform specially designed for digitizing cell culture called FIND Cell that integrates daily cell tracking and management with genetic verifications.

In their report in Cell, the authors propose further actions to improve cell diversity for researchers, biobanks, publishers, funding agencies, and community representatives to consider. “We hope we can contribute to finding cures for all people in the long run, but it all starts with becoming aware of the problem and working together on solutions,” says Dr Capes-Davis.

Author: Peter Morris for Children’s Medical Research Institute

2021 | INSPIRE 020 21

DANISH/AUSTRALIAN ONLINE INNOVATION EMPOWERS HEALTHCARE

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As a sector, medical research institutes have taken a crucial first step towards better communicating the value of research to funders and the broader community, and even more importantly, improving the ability to support research to ensure impact is achieved.

OVERCOMING THAT “MEH” FEELING

In the current pandemic-centric world, all of us have been feeling a bit “Meh”. Adam Grant, an organizational psychologist at the Wharton School, University of Pennsylvania, recently suggested that “Meh”, or languishing, which is a sense of stagnation and emptiness (yet not depression) might be the dominant emotion of 2021.1 For some people living with chronic conditions, that feeling of languishing may be felt after the post-diagnosis urgency of controlling the condition has subsided. Long before COVID, Professor Vibeke Zoffmann, Professor of Translational Empowerment at Copenhagen University, developed the method of Guided Self-Determination (GSD) for people living with chronic conditions who lost motivation to self-care. 2 Essentially, the GSD method is a set of reflective conversations between healthcare professionals and a person with either an ongoing health issue or a difficult life situation, that help people overcome that “Meh”-ness and increase their motivation to improve their physical or mental health.

During their GSD conversations, people with chronic conditions or in difficult life situations are prompted to explore and express their personal challenges and experiences with their condition on shared paper-based 1. Grant, A (2021). Feeling Blah During the Pandemic? It’s Called Languishing - The New York Times (nytimes.com), New York Times, 21 April.

2. Z offmann, V. (2004). Guided self-determination: A life skills approach developed in difficult type 1 diabetes. Aarhus, Denmark: Department of Nursing Science, University of Aarhus.

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worksheets.3 The GSD method is supported by extensive evidence-based research, particularly in Scandinavian countries.

THE AUSTRALIAN COLLABORATIVE FOCUS: ONLINE DELIVERY

In Australia in 2017–18, the prevalence of diabetes (based on self-reported data) was similar across remoteness areas. However, hospitalisations and deaths from Type 1 and Type 2 diabetes were more prevalent outside of major cities.4

DIABETES IMPACT BY REMOTENESS PER 100,00 POPULATION

Professor Bodil Rasmussen

REMOTENESS AREA

TYPE 1 DIABETES HOSPITALISATIONS*

TYPE 2 DIABETES HOSPITALISATIONS*

DIABETES DEATHS**

Major cities

230

3,506

49

Inner regional

329

3,604

57

Outer regional

272

3,820

62

Remote and very remote

198

8,799

103

Source: AIHW data*Principal and /or additional diagnosis 2017-2018 **Underlying or associated cause 2018

Recognising that regular personal communication is important, especially for diabetes (the main focus of our team’s research), the delivery format of GSD was converted to online so that everyone with diabetes, independent of location could access GSD. The online format initiated by the Australian team, in collaboration with Professor Zoffmann, was tested in a dedicated research project focussed on young adults with diabetes around Australia.

The research project made the following findings:

1. ONLINE DELIVERY WAS EMBRACED BY BOTH REGIONAL AND CITY CLIENTS

Online delivery was originally envisaged as being most useful for people in regional areas. However, the study found it was embraced equally by city and regional clients. For city clients, it worked better for those with a busy lifestyle, avoided long commutes, reduced costs and eliminated the need to take leave from work to attend appointments.

We think that GSD, which allows clients to first reflect on their situation individually before then being truly heard by their healthcare professional, alleviates the need for everyone to be in the same room.

The online delivery provided flexibility for clients to engage with the GSD program 24/7 without having to take leave from work.

3. Zoffmann, V. and M. Kirkevold (2012). ‘Realizing empowerment in difficult diabetes care: a guided self-determination intervention.’

Qualitative Health Research 22(1): 103-118.

4. A IHW, Data Table Diabetes 2020 5. R asmussen, B., Currey, J., Dunning. T. Haig, B. & Zoffmann, V. (2017). ‘An online self-management intervention for young adults with type 1 diabetes: Guided Self-Determination program’ Australian Diabetes Educator, 20(3).

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As one Australian participant noted:

It used to take me 50 minutes each way to get to my diabetes educator and I’m a casual worker, so I pretty much had to take a whole day off and it’s sometimes really hard to get time off work.”

Based on the results from the Australian study, online delivery is now also used in Denmark.

2. SHORTER ONLINE TRAINING SESSIONS FOR HEALTHCARE PROFESSIONALS ARE EFFECTIVE AND SUSTAINABLE WHAT IS GSD?

A person-centred reflection and problemsolving method ● Based on Self-Determination Theory (a theory of motivation) to help people with ongoing medical conditions or difficult life situation to stay motivated and empowered. ● Provides educational and behavioural support for a person’s own motivation and to build life skills to overcome obstacles in their life. ● Consists of 4-8 reflective structured conversations that guide the person through a process of reflection and problem-solving strategies. ● E x p e c te d r e s u l t s: i n c r e a s e d m ot i v a t i o n, empowerment and increased feeling of shareddecision making

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Before delivering GSD conversations with clients, healthcare professionals undergo mandatory training.

In Denmark (which in area is smaller than Tasmania) training has been provided via the use of self-directed learning, prior to an intensive two-day, face-to-face workshop.

Recognising that healthcare professionals could benefit from online learning, the Australian team were committed to putting GSD training online to save travel time, reduce costs and make the method as carbon-neutral as possible.

Innovative images and digital interactive communication strategies were developed, which made it easy to navigate online and accessible 24/7. Online training hours were streamlined by shifting some content to pre-workshop, self-directed readings and post-training mentoring.

Diabetes educators embraced this approach with enthusiasm. The method of training had a reduced impact on their work and lives because of the flexibility offered by the online program. Some of the mentoring calls were attended from remote camping grounds or between sessions with other clients. Importantly, regular online mentoring sessions after the training continued to build the diabetes educators’ confidence.

The traditional consult is where the client is coming to look for a solution from you and you need to provide that, and if asked ‘Are there any other concerns?’ clients can’t come up with anything.

But when you start using the GSD method, it opens up conversation and you get a totally different person and a lot of other questions come up and then clients become the solution-giver; they can solve their own problems”.

3. A PICK-AND-MIX APPROACH TO GSD CONVERSATIONS CAN ALSO HELP EDUCATORS

A popular part of the Guided Self-Determination training is when educators practise GSD-structured online conversations and pick the “innocent” problem of work-life balance. This conversation brings the biggest number of “aha” moments and inspires educators to make changes in their work and personal life.

A SIMPLE QUESTION OR ACTIVITY COULD LEAD TO BIG “AHA” MOMENTS.

One educator reflected on her way of working after the GSD training: “Today I had three clients with issues around food, weight, body image and poor diabetes control. Reflecting on the way I worked with these women was really interesting. For all of them, I have used many of the principles from the six GSD conversations. ● Getting them to identify and build on things around their attitude to food ● Breaking things down ● Coming up with simple things they can reflect on and make changes to.

Thank you for allowing me to be part of this project. It has definitely changed my approach to working with clients with diabetes.”

The diabetes educators indicated that reflections on the GSD method changed their practice because the solutions or strategies for managing diabetes were created by the individual client and, thus, were more likely to be incorporated into their self-care.

Guided conversations helped the diabetes educator to focus on the situation from the client’s perspective and,

2021 | INSPIRE 020 25

in turn, changed the relationship towards a collaborative approach. Both groups of participants agreed that the GSD method is an empowerment tool.

It is about empowerment, about respect for the client; this is why it works so well… You’re just walking along beside a person, holding their hand to tease out what their issues are and then helping them or offering them practical solutions; that’s why it’s been so well received.”

These positive results have led to the GSD course being accredited by the Australian Diabetes Educators’ Association.

IT TAKES A VILLAGE…

As more and more diabetes educators complete GSD training GSD becomes more widely available to people with diabetes around Australia with improved quality of life and motivations. The ripple effect in the form of reduced hospital admissions is expected to follow.

Yet clearly, GSD has applications beyond the treatment of chronic health conditions. At Deakin University, GSD is currently being adapted to help student mentors support prospective students navigate their transition into university.

Another project is under way to train hospital clinicians and nurses in a generic GSD approach, to have an additional communication tool when interacting with patients.

The GSD method has been applied in the context of 20 long-term conditions in Denmark, Norway, Sweden and Australia, from 2005-2020. The conditions vary, but include people going through divorce, cancer care, mental health problems, co-morbid ADHD, endometriosis and dialysis treatment. GSD has also been applied in engagement with families, for people with ongoing life issues and families with infants in neonatal care.

They say it takes a village to raise a child. It will take many collaborations and partnerships to introduce chronic conditions’ research into practice and make profound differences in many people’s lives.

I acknowledge Professor Vibeke Zoffmann, Copenhagen University, and the Deakin GSD team comprising: Professor Judy Currey, Senior Research Fellow Karen Wynter, Adjunct Associate Professor Olga Hogan, Mr Matthew Berends, and all the Australian diabetes educators who are part of our journey.

Author: Professor Bodil Rasmussen, Chair in Nursing, Western Health, Institute for Health Transformation, Deakin University

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2021 | INSPIRE 020 27

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MAKING A MARC

The Melbourne Ageing Research Collaboration An innovative approach to translating research in ageing into practice.

T

he Melbourne Ageing Research Collaboration (MARC), led by the National Ageing Research I n s t i t u te ( N A R I ), i s a m u l t i - d i s c i p l i n a r y partnership of 20 organisations that have joined forces to improve the lives of older people. Through collaboration, combined exper tise and shared purpose, the partners aim to positively impact the quality of life and health experiences of older people across all settings, including community, health and aged care services.

Every person’s ageing and aged care experience is unique and MARC acknowledges this in its work by using

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a combined bottom-up and top-down approach. Firstly, we enable healthcare staff and consumers to co-design research that is relevant for their setting or community and thereby develop outcome-oriented solutions from the ground up. Secondly, we aim to bring about systemic social change from the top down by drawing attention to ageing-related inequities, influencing policies and combating ageism. It is the only ageing-related collaboration of its kind.

Brought together by NARI in 2014, the partners of MARC include universities, health services, aged care services, peak advocacy bodies, a primary health network and the

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Victorian Department of Health. Together they undertake research and capacity building to tackle critical ageingrelated health and aged care issues. The collaboration is supported through contributions from each partner, the JO and JR Wicking Trust, and the Victorian Department of Health.

Vital to the collaboration is the Community Advisory Group (CAG), a group of volunteers with a wide range of personal and professional experiences of consumer issues related to health and aged care.

This group includes for instance older people, carers, people from culturally and linguistically diverse backgrounds and members of the LGBTQIA+ community.

The CAG offers a consumer perspective on MARC’s research projects, capacity building events and all other activities. Through regular CAG and research project meetings, these community volunteers provide consumer input, context and relevance to our work.

PRIORITIES AND PROJECTS

Using principles of co-design and co-production, the overarching aim of MARC is to rapidly turn research evidence in the field of ageing into clinical practice and policy. Four central priority areas have been identified as common issues by all partners: dementia care, falls prevention, end of life care and mental health of older people. To address these priorities, we have completed seven research projects and nine more are ongoing.

Our implementation studies have examined, for example, grief and older people, innovations for falls prevention in hospitals, creating dementiafriendly emergency departments, training hospital staff in the early recognition of dying, improving access to outdoor spaces in residential aged care, and trialling translation technology in hospital settings.

Unlike researcher driven projects, MARC projects are driven by a project advisory group who build the project from the ground up. These projects have led so far to 10 peer-reviewed publications, 17 conference presentations and 41 organisational presentations.

By hosting 25 workshops, forums and symposia for over 3000 attendees during the last six years, MARC has facilitated knowledge exchange and stimulated thinking on how to support healthy and meaningful ageing across settings and populations. MARC has also provided four PhD scholarships and six seed funding grants to enable the development, implementation and evaluation of ageing-related research ideas.

COLLABORATION, NETWORKING AND COOPERATION

The collaboration of fers regular oppor tunities for networking and cooperation. All employees of our partner organisations are connected through and because of MARC to create well-informed research, practice and policy. A core team of researchers at the National Ageing Research Institute acts as the hub of the collaboration by collating, developing and realising the research and practice ideas of MARC partners.

O ne challenge in collaborative re search is that accommodating a broad range of perspectives and opinions from diverse teams across organisations can slow down the project development. However, involving collaborators, healthcare staff and consumers from the start also leads to research outcomes that are relevant, co-designed and hence rapidly implemented at each site.

MARC differs to other collaborations by conducting translational research and training that is focussed on creating rapid and sustainable improvements in clinical practice rather than focussing on research outputs alone.

Specifically, MARC brings together multi-disciplinary teams across organisations and backgrounds that would ordinarily not have the opportunity to work together on joint projects (including researchers, community members and healthcare staff with and without previous research experience). This collaborative process is mutually beneficial as researchers are connected with real-life clinical experiences, while healthcare staff learn how to plan, conduct and implement research in their unique setting.

At present MARC partners are: St Vincent’s Hospital, Royal Melbourne Hospital, Western Health, Austin Health, Northern Health, Monash University, University of Melbourne, Deakin University, RMIT University, Federation University, Lyndoch Living, Dementia Australia, North Western Melbourne Primary Health Network, Australian Unity, Council of the Ageing (COTA), Carers Victoria, Benetas, Lynoch Living, Victorian Department of Health and the National Ageing Research Institute (NARI). This network is constantly expanding.

If you are interested in knowing more about MARC, please visit our website https://www.nari.net.au/Pages/Site/marc/ Category/about-marc or contact division director Debra O’Connor (d.oconnor@nari.edu.au).

Authors: Debra O’Connor, A/Professor Frances Batchelor, Sue Williams, Dr Kirsten Moore, Dr Karin Gerber. National Ageing Research Institute (NARI)

2021 | INSPIRE 020 31

HARNESSING WORLDWIDE EXPERTISE TO IMPROVE ACUTE WOUND CARE SERVICES

A $2.5 million National Health and Medical Research Council (NHMRC) grant is set to significantly reduce patient harm by preventing woundrelated hospital acquired complications.

patient experiences and outcomes, as well as significant savings to the health system.

lmost all the 11.3 million hospital admissions in Australia each year involve a wound of some type—whether it’s a surgical wound, a wound from an intravascular device or a pressure injury.

Wounds cause pain, discomfort and can compromise quality of life.

She said wound care practices had been largely overlooked, even where good quality evidence exists to stop low-value and inappropriate practices.

A

Researchers like Professor Wendy Chaboyer from the NHMRC Centre of Research Excellence (CRE) in Wiser Wound Care at the Menzies Health Institute Queensland are working to transform the healthcare system by improving the delivery of acute wound care services in hospital.

The research group will improve the care provided to hospitalised patients with wounds, resulting in better

32 INSPIRE 020 | 2021

Their research focuses on three high-volume, high-risk and high-cost acute wounds occurring in hospitals— pressure injuries (PI), surgical wounds and intravascular device (IVD) wounds.

“Almost all patients in Australian hospitals have one or more of these wounds,” says Professor Wendy Chaboyer.

“Wounds compromise skin integrity, leaving people physically vulnerable and at risk of developing healthcareacquired complications, including infection.”

“Compounding this, there is a lack of robust evidence in some key areas of wound care. Our CRE will tackle this lack of quality evidence by undertaking high-quality clinical trials to provide evidence of efficacy and cost effectiveness in priority areas.

Our research program will generate and implement evidence-based wound care practices, and identify and de-implement low-value wound care practices in the hospital setting to improve the quality, safety and costeffectiveness of wound care. We will also train future wound care researchers and develop national and international wound care collaborations.”

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OUR CURRENT RESEARCH Below: Professors Brigid Gillespie CRE Deputy Director (left). Prof Wendy Chaboyer CRE Director

The effectiveness of a prophylactic dressing to prevent pressure injuries in high-risk hospitalised adults Pressure injuries occur in about 8% of hospitalised Australian patients but can be much higher in some risk groups such as patients with limited mobility.

Conservatively, pressure injuries cost the Australian health system about $1.8 billion per annum. The use of prophylactic dressings will increase hospital cost, but if effective, they may represent value for money. This study will determine the effectiveness and cost effectiveness of these dressings.

PATIENTS’ KNOWLEDGE OF SURGICAL WOUND POST-OPERATIVE CARE AND THEIR PREFERENCES FOR SELFMANAGEMENT AFTER HOSPITAL DISCHARGE

UTILISING NATIONAL AND INTERNATIONAL COLLABORATIONS

Improving wound care is not a simple task. It requires a multidisciplinary team of clinicians, researchers and consumers to generate high-quality evidence, and commitment from healthcare policy makers, leaders and local clinicians to ensure the evidence is implemented in practice.

Comprising five renowned nurse researchers, three internationally-recognised physicians, a health economist and a statistician, the Wiser Wound Care CRE brings together leading national and international experts who are up to this challenge.

“This healthcare team approach will enable the seamless translation of high impact research outcomes into policy and practice for optimal delivery of wound care services in hospitals,’’ Professor Chaboyer said.

“Our international members bring unique experience and expertise to our team. They have been able to help us shape our understanding of problems associated with compromised skin integrity and have helped us develop new techniques and technologies that we are able to incorporate into our research, resulting in novel approaches to these issues. They are also national leaders in their field and they have used their professional networks to disseminate our research findings.”

Each year around 2.6 million Australian patients have a surgical procedure and 3-4% of those hospitalisations will result in a surgical site infection, which may cost up to $3.8 billion per year. Informed by understanding effective wound care practices, patient participation in surgical wound care is important to reduce the risk of wound complications, including surgical site infection. This study will investigate patient experiences, education and preferences related to post-operative surgical wound care and their associated self-care needs.

The effectiveness of innovative products on reducing morbidity and mortality associated with peripherally inserted central catheter failure and complication in patients undergoing cancer treatment.

On average, 26% of catheters fail due to complications including dislodgement and catheter associated bloodstream infection (CABSI), with significant associated mortality and treatment costs. There are about 18,000 CABSI per annum in Australia alone, adding 180,000 hospital days and over AU$300 million in health costs annually. Appropriate intravenous wound care is vital to prevent these complications.

Author: Professor Wendy Chaboyer is the Director of the NHMRC Centre of Research Excellence in Wiser Wound Care at the Menzies Health Institute Queensland, Griffith University.

She is an experienced nurse researcher who has been inducted into the Sigma Theta Tau International Nurse Researcher Hall of Fame and is a lifetime honorary fellow of the Australian College of Critical Care Nurses.

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COLLABORATION FOR IMPACT

E-CIGARETTE RESEARCH

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Preventing disease is a Health Promoters’ goal, however, making an impact in a resource-limited environment is challenging.

O

ur e-cigarette research demonstrates what can be achieved through thoughtful processes and strong communit y engagement and collaboration.

E-cigarettes are a relatively new product, introduced to the US in 2007, and described as an epidemic among youth by the US Surgeon General1. Since 2013, lifetime use of e-cigarettes has doubled among young Australians’ aged 14-17 (4.3% to 9.6%) and almost tripling in those aged 1824 (7.9% to 26.1%)2. Conversely rates of cigarette smoking have declined.

Our team of international researchers gathered data on how e-cigarettes are promoted, accessed and used within the tightly regulated Australian tobacco environment. We did this by identifying the e-cigarette discourse on social media and exploring the perspectives of 37 e-cigarette users 3 . From the research beginnings we worked with the end-users (non-government and government collaborators), to ensure our data supported their remit for policy and practice and advocacy.

STUDY FINDINGS

On social media, e-cigarettes are being promoted as a safer alternative to cigarettes; as an efficacious smoking cessation aid; and for use where smoking is prohibited4.

The content is dominated by the vaping industry and e-cigarette proponents discussing, endorsing and promoting pro-vaping messages, and discrediting the scientific evidence of the health risks of e-cigarettes.5 Adolescents have more favourable perceptions of e-cigarettes than cigarettes6, and adolescent exposure to e-cigarette advertising on social media results in greater intention to use e-cigarettes and a tednency to perceive their use as normative7, 8.

We recommend equipping public health professionals so that they can engage with and challenge pro-vaping messaging on social media; reflect on the nuanced activities of vapers and their motivation so that appropriate health communication can be developed; restrict advertising and introduce better controls to stop the online 2021 | INSPIRE 020 35

Above: Prof Jonine Jancey Below: Ms Kahlia McCausland

purchase of e-cigarettes by minors; and develop real-time processes to monitor and show how e-cigarettes are discussed, promoted and used on social media so that public health actions can be facilitated.

The internet is the ideal platform to promote e-cigarettes and alternative tobacco products, particularly in a highly regulated country such as Australia. Countering the advertising and promotion of these products requires national and cross-border cooperation as advocated by the WHO Framework Convention on Tobacco Control9.

BENEFITS OF COLLABORATION

Our collaboration between the international research team and community stakeholders was nurtured through respect, understanding of each party’s goals and ongoing 36 INSPIRE 020 | 2021

information sharing. We published peer-reviewed articles and presented at conferences, but we always aimed to be more stakeholder orientated and relevant, so we looked for more industry-appropriate dissemination and translation strategies.

This was achieved via our Stakeholder Quarterly E-News, which outlined our research findings and provided summaries of other relevant research. This dissemination approach attracted interest, stmulated discourse and supported national/international engagement. Biannual Advisory Committee meetings provided an opportunity for two-way communication, supporting discussions about the role of our research findings and new research opportunities, while strengthening relationships.

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We actively sought oppor tunities to engage with government and non-government agencies through lay language summaries by way of ministerial briefings and submissions to relevant state and national enquiries.

This dissemination led to requests for us to contribute our findings to State Select Committees and Reviews of Federal Tobacco control policy reviews, thereby influencing policy development .

Located in a teaching and research nexus at a large metropolitan university, we are equipped with the expertise and opportunities for sector capacity building through student training. In collaboration with our stakeholder partners, we undertook additional related research with students.

The benefits of this were three-fold: a real-world learning experience for the student, student engagement with community stakeholders and the provision of relevant evidence for our collaborators. This capacity-building approach strengthened our impact, as our research project was modestly funded, although we are grateful to our funder, Healthway.

Consumers and community engagement throughout all stages of the research project is embraced by the NHMRC10. Our research consumers are the stakeholders that use our information to inform policy and practice. We have ongoing relationships with our relevant collaborative stakeholders and currently have several collaborative codesigned Fellowship and e-cigarette grants under review with national funding bodies and additional awarded funding.

THE BENEFITS OF ENGAGING WITH STAKEHOLDERS WERE:

• Increased community awareness and support for our research • Increased relevance of our research • Increased confidence in our research through openness and transparency • Increased opportunities to modify and improve our research • More effective translation of research to inform policy and practice • Increased opportunity for capacity building • Established collaborations to support future research • Extending the impact of limited research dollars

1. Surgeon General. Surgeon General’s Advisory on E-cigarette Use Among Youth. Available from: https://e-cigarettes.surgeongeneral. gov/documents/surgeon-generals-advisory-on-e-cigarette-useamong-youth-2018.pdf.(cited June 1 2021) 2. Greenhalgh, E., Scollo, MM and Winstanley, MH, 18B.3 Extent of use, in Tobacco in Australia: Facts and issues, E. Greenhalgh, Jenkins, S & Scollo, MM (editors), Editor. 2021, Cancer Council Victoria: Melbourne.

3. McCausland, K., Maycock, B and J. Jancey, The messages presented in online electronic cigarette promotions and discussions: a scoping review protocol. BMJ Open, 2017. 7(11): p. e018633.

4. McCausland, K., . Maycock, T. Leaver, Jancey. J. The Messages Presented in Electronic Cigarette-Related Social Media Promotions and Discussion: Scoping Review. Journal of Medical Internet Research, 2019. 5(21): p. e11953.

5. McCausland, K., B. Maycock, T. Leaver, K. Wolf, B. Freeman, K. Thomson, J. Jancey, E-Cigarette Promotion on Twitter in Australia: Content Analysis of Tweets. JMIR Public Health and Surveillance, 2020. 6(4):e15577 6. Sharma, A., McCausland, K, and J. Jancey, Adolescent’s health perceptions of electronic cigarettes: A systematic review.

American Journal of Preventive Medicine 2021. 60 (5):716-725 7. Camenga D,Gutierrez, KM, Kong G, Cavallo D, Simon P, KrishnanSarin S., E-cigarette advertising exposure in e-cigarette naïve adolescents and subsequent e-cigarette use: A longitudinal cohort study. Addict Behav, 2018: 81: 78-83.

8. Vogel EA, Ramo, .D., Rubinstein ML, Delucchi KL, Darrow S, Costello C, et al. ], Effects of Social Media on Adolescents’Willingness and Intention to Use E-Cigarettes: An Experimental Investigation. Nicotine & Tobacco Research, 2021: 23(4): 694-701.

9. World Health Organization, WHO Framework Convention on Tobacco Control. 2003, World Health Organisation: Geneva, Switzerland. (Cited June 1 2021) 10. NHMRC. Building a Healthy Australia: consumer and community engagement. 2021; Available from: https://www.nhmrc.gov.au/ about-us/consumer-and-community-engagement (cited June 1 2021).

Author: Associate Professor Jonine Jancey is the Director of the Collaboration for Evidence, Research & Impact in Public Health (CERIPH) at Curtin University. Kahlia McCausland has just completed her PhD researching e-cigarettes and is a researcher at the CERIPH.

2021 | INSPIRE 020 37

RESEARCH AUSTRALIA AWARD SPONSOR FEATURE

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

How Professor Melissa Little came to make the first kidney in a dish

Professor Melissa Little won the GSK ARE in 2005 for her contribution to our understanding of how the kidney develops.

Her insights enabled her team to grow a kidney in a dish, representing a world-first, groundbreaking discovery. Prof Little discusses her career, her research, and women in science.

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rof Little has had a long career in science and her early focus on kidney physiology has led her to become one of the world’s experts on kidney development and stem cell research. However, it hasn’t always been easy balancing science with motherhood.

Women in Australia represent about half of STEM graduates, but they make up just 14% of Professors.* Prof Little is one of a small number of female scientists who have reached the top of their field. But it was not until Prof Little had children that she experienced the prejudice attached to being a working mother.

Prof Little’s interest in biology started in childhood.

“We spent a lot of time camping in the bush so I originally thought I could be a zoologist,” she says. “However, when I went to university and discovered human physiology, I decided that’s what I wanted to major in.”

Prof Little looked at kidney (renal) cancer in children for her PhD thesis.

“While starting with kidney cancer, I became interested in kidney disease as a whole and the molecular development of kidneys. I wanted to answer how you get a kidney in the first place because understanding this will help us to determine what might go wrong in terms of disease,” Prof Little says.

Prof Little has dedicated more than 30 years of her life to understanding the kidney, with the constant desire to translate her research into an outcome that helps people.

Being placed amongst the ranks of its esteemed really assists you in your ability to gain support,” she says.

In 2007, Prof Little and her team started looking at how they could make a kidney using stem cells.

“It took us seven years to develop a protocol that enabled us to go from human stem cells to kidney,” Prof Little says. “I remember the day we looked in the dish and said, ‘that’s a kidney’. It was really exciting for us to make such a groundbreaking discovery.”

“If we had not understood how the kidney forms biologically, we would not have been able to recreate it,” she says.

Since then, the model has enabled scientists to perform research and test treatments on stem cell models of the human kidney made from patients with specific kidney diseases. Prof Little’s team has also started working towards rebuilding transplantable kidney tissues and believes we are still at least a decade away from delivering a bioartificial kidney to humans for the treatment of renal failure.

Prof Little said the success of other female scientists helped her see what was possible for her own career, but she largely had to pave her own way.

“I think I was the first woman in my institute to get pregnant, have a child and come back to work,” she says. “There were no paradigms. I totally assumed they needed to facilitate me. To some degree they did, but it was really tough and it continues to be tough.”

In 2005, Prof Little was awarded the GSK ARE as her team began advancing their kidney research to understand possible treatments.

Prof Little says there were practical challenges in her early career, like having to change nappies in the aisle of an aeroplane and expressing breast milk in a chemical cupboard because there was nowhere else to do it.

“The GSK grant was the icing on the cake in terms of moving that work forward. The award is very prestigious.

Prof Little is highly supportive of her female staff, particularly as they navigate balancing motherhood with

38 INSPIRE 020 | 2021

Journey through time: GSK ARE winners 2005 Winner: Associate Professor Melissa Little – Cell Biology, Institute for Molecular Bioscience

The GSK ARE is one of the most prestigious and longstanding awards available to the Australian medical research community. GSK Australia is proud of over 40 years of the award and support for home-grown research that helps to improve outcomes for patients globally.

1994

work. “I have had many women come through my lab, and more than 50 kids have been born to my staff and students.”

1995

“You have to be brave. If you want to have a family and a career, you’re going to be working really hard and you have to believe you can do it. There’s zero easy route here.”

1996

“Conditions have improved,” Prof Little says. “But perceptions have not. There’s still a social stigma to being a working mother and we are still a long way from equality. But it is not all bad in science.”

1997

Prof Little says science can provide parents with more flexible work than other careers.

“It’s feasible to balance family and career. You don’t have to log on at nine and log off at five. You can have flexible hours, work at night after the kids are in bed and be there at parent-teacher interviews,” she says.

Prof Little’s discoveries are testament to her own bravery and hard work, and her achievements help show young female scientists that they too can rise to the top of science and raise children at the same time.

“It’s been an amazing 30 or more years of seeing science change in amazing ways. I feel very privileged to have been a scientist. It’s a very rewarding career,” she says. * Reference: Department of Industry, Science, Energy and Resources: Advancing Women in STEM Strategy, accessed 12 April 2021: https:// www.industry.gov.au/data-and-publications/advancing-women-in-stemstrategy/snapshot-of-disparity-in-stem/women-in-stem-at-a-glance

1998 1999 2000 2001 2002 2004 2005 2006

Professor Melissa Little, BSc PhD GAICD, FAAHMS, FAA is the Theme Director of Cell Biology at the Murdoch Children’s Research Institute; Program Leader of Stem Cells Australia; Professor, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne; and a Director of Research Australia.

2007

Professor Robert Baxter – Kolling Institute of Medical Research Dr Julie Campbell –University of Queensland Dr Michael C Berndt – Baker Medical Research Institute Dr Mauro Sandrin – Austin Research Institute Dr Alan Cowman – Walter & Eliza Hall Institute of Medical Research Professor David E James – The University of Queensland Dr Andreas Strasser & Dr David Vaux – Walter & Eliza Hall Institute of Medical Research Associate Professor Philip Hogg – University of New South Wales Professor Samuel Berkovic – Austin and Repatriation Medical Centre Professor Douglas Hilton – Walter & Eliza Hall Institute of Medical Research Associate Professor Melissa Little – Institute for Molecular Bioscience Professor Levon Khachigian – Vascular Research Centre at the University of New South Wales Professor Peter Koopman – Institute for Molecular Bioscience

Timeline to be continued in the next issue 2021 | INSPIRE 020 39

POINT-OF-COLLABORATION

POINT-OFCARE TESTING NETWORKS EXPAND ACCESS TO PATHOLOGY TESTING In rural and remote areas of Australia, pathology test results can take up to 10 days to be returned to health clinics, and even longer to be communicated to patients.

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hanks to a broad r ange of collabor ative partnerships, point-of-care test results for acute, infectious, and chronic conditions can now be rapidly available, generally in less than one hour.

The International Centre for Point-of-Care Testing (ICPOCT), located at Flinders University in South Australia, is a translational research centre providing equitable access to timely, state-of-the-art pathology testing in over 300 rural, remote, and Aboriginal and Torres Strait Islander health care facilities around Australia.

The Centre works to increase access to testing to improve patient outcomes, reduce wait times, and enhance patient safety, while simultaneously creating broader economic and operational benefits.

Working with an extensive range of collaborators, including community-controlled organisations, state and federal departments, and academic institutions, the Centre has created a sustainable network that allows research, knowledge and practice to be easily translated into improved care and outcomes for patients.

40 INSPIRE 020 | 2021

A BROAD AND AGILE NETWORK

The ICPOCT works primarily to support rural and remote health services in Australia to implement and provide ongoing training for the point-of-care (POC) testing networks. Additionally, rigorous quality management processes ensure test results are safe and reliable for patient care. These vast networks include: • Acute care: The Northern Territory (NT) Point-of-Care Testing (POCT) Program operates in over 80 remote health services in the NT in partnership with the NT Department of Health, community-controlled health services, and the Aboriginal Medical Services Alliance of the NT. The Program enables several acute POC tests to be performed on-site for clinical scenarios such as chest pain, dehydration, blood loss, airway disorders/ infections, and sepsis.

• Infectious diseases: The ICPOCT works with a wide range of collaborative partners, led by the Kirby Institute (University of New South Wales), as part of the Test, Treat and Go (TTANGO) Program, led by the Kirby Institute (University of New South Wales), and funded by the Australian Government, Western Australia (WA) Health, Queensland Health and the NHMRC. The Program currently operates in 34 regional and remote health services across WA, the NT, South Australia, and Queensland. TTANGO enables health services to test for the sexually transmitted infections including chlamydia, gonorrhoea, and trichomonas using molecular-based POC technology.

The Enhanced Syphilis Response POCT Program commenced in 2018 in response to the ongoing outbreak of infectious syphilis in young Aboriginal and Torres Strait Islander people. The Program is managed in conjunction

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with the National Aboriginal Community Controlled Health Organisation, funded by the Australian Government Department of Health (DoH) and WA Health to oversee a network of more than 100 health services that use the POC test to provide qualitative syphilis results in 15 minutes.

Through efficient communication, strong partnerships, and shared expertise, the Centre and its partners have been able to remain agile to changing health priorities and public health emergencies (such as COVID-19 and syphilis), while remaining sustainable and enduring – as is the case with the over 20-year QAAMS Program.

Most recently, the Aboriginal and Torres Strait Islander COVID-19 POCT Program was established in response to the global COVID-19 pandemic with funding provided by the Australian Government DoH.

Collaboration with par ticipating communities has resulted in a range of improved outcomes for health services and the patients they serve, including reduced time to treatment, increased uptake of treatment, more informed clinical triage for medical evacuations, improved satisfaction among Aboriginal and Torres Strait Islander clients, and increased workforce capacity for conducting on-site POCT.

The Program is collaboratively managed with the Kirby Institute in close communication with a broad network of Aboriginal Community Controlled Health Organisations, state and territory governments, Centres of Disease Control, the Public Health Laboratory Network, and industry partners.

Leveraging the TTANGO network, the Program was rapidly scaled-up and now delivers on-site molecular COVID-19 testing in 88 rural, remote, and Aboriginal and Torres Strait Islander health services enabling SARSCOV-2 test results to be available in less than one hour.

This network has facilitated rapid public health responses in isolated locations and significantly reduced the time required to isolate while waiting for test results.

• Chronic conditions: Commencing in 1999, the Quality Assurance for Aboriginal and Torres Strait Islander Medical Services (QAAMS) Program is the longest running program managed by the ICPOCT and geographically the largest POC testing network nationally. QAAMS works with approximately 200 Aboriginal and Torres Strait Islander primary health care facilities to provide haemoglobin A1c test results for the diagnosis and management of diabetes and urine albumin:creatinine ratio testing for the early detection of chronic kidney disease.

A high level of clinical engagement within the ICPOCT networks has enhanced patient safety and strong Aboriginal and Torres Strait Islander leadership has ensured cultural safety within the programs.

This nationwide expertise of the ICPOCT has also been recognised by the World Health Organization (WHO), with the ICPOCT being formally designated as a WHO Collaborating Centre for sexually transmitted infection POCT in 2017.

Learn more about the Centre and its networks here: www. flinders.edu.au/international-centre-for-point-of-caretesting

Authors: Dr Brooke Spaeth, BMedSc (Hons), PhD and Katie Cundale, MPH, BSc, BA, Flinders University International Centre for Point-of-Care Testing

2021 | INSPIRE 020 41

COLLABORATIVE RESEARCH IS THE KEY TO MEANINGFUL MEDICAL STUDENT ENGAGEMENT IN SURGICAL RESEARCH. Surgical research has undergone major changes in recent years.

Historically, research in surgical and perioperative fields has been particularly challenging for medical students due to the practical limitations of developing and conducting research in a single centre setting.

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tudents with little to no experience are being asked to collect large data sets on studies which may never be analysed or published.

Over the last five years there has been a significant shift toward research that is collaborative in nature.

the research into COVID-19 and surgical outcomes, which was led by the United Kingdom student surgical collaborative group GlobalSurg, or the study conducted by the Vascular and Endovascular Network (VERN) on outcomes in Vascular Surgery during the time of COVID.

Collaborative research studies are usually research or audit studies which are led by experienced medical students and junior doctors. These studies are supported by medical, surgical, or anaesthetic consultants with an established academic track record.

These studies have significantly contributed to the medical literature and have a tangible benefit for patients. The GlobalSurg study on timing in elective surgery patients during COVID-19 enrolled over 140,000 patients from 116 countries. This study has been pivotal in guiding planning of elective surgery for patients during this time of widespread COVID disruption

T h ey a re c o o rd i n ate d by o rg a n i s ati o n s, c a l l e d collaboratives, of student and junior doctor networks which exist to facilitate the development of research skills in early career doctors. Australia has several established research collaboratives including the Clinical Trials Network Australia and New Zealand (CTANZ), Australia and New Zealand Vascular Trials Network (ANZVTN), Trials and Audit in Surgery by Medical Students in Australia and New Zealand (TASMAN), and Student Research Initiative Western Australia (STRIVE).

Many of these collaboratives have participated in multiple large-scale international multicentre studies such as 42 INSPIRE 020 | 2021

The benefits to medical students looking to start their journey into surgical research are clear; protocols are well developed, research questions are clear and focused, data is collected for a defined period using well designed data collection tools, support networks exist locally and international, analysis is performed at the collaborative management level with statistical support, and output is timely, and meaningful.

Students enter their first collaborative study as a data collector gaining exposure to the basics of research;

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patient identification, data collection and entry, time management, teamwork, and improvement of clinical knowledge. In subsequent studies they can expand their research skill set by participating in the management team coordinating the study. Research collaboratives have a well-defined team structure that mirrors that of formal clinical trials.

Hospital leads, which are students, junior doctors, or consultants, coordinate the team of data collectors at a local hospital and ensure appropriate ethics and governance is in place. Local hospitals are supported by the national or international study subcommittees which focus on strategic direction, communication, ethics and governance, database management, and statistical analysis.

These subcommittees are led by those experienced researchers who aim to upskill newer researchers ensuring the continual development of important research skills in upcoming generations of surgical researchers.

POST VENT T is a research study currently being coordinated in Australia and New Zealand which is examining the impact of postoperative anaemia on patient

outcomes in major abdominal surgery. The study currently has 47 hospitals enrolled in across Australia and New Zealand with over 380 collaborators ready to collect data in July. The team are currently recruiting international centres to participate in the international data collection period in October.

Medical students looking to start or develop their research skills should look to their university or local hospital to see if it has an established local research collaborative and check social media where all collaboratives have a strong presence.

Authors: Authors: Jana-Lee Moss1,2, Uyen Vo1,2, Nagendra Dudi-Venkata3 on behalf of the POSTVENTT team 1 Fiona Stanley Hospital Perth, Western Australia, Australia 2 University of Western Australia, Perth Western Australia 3 Royal Adelaide Hospital, Adelaide, Australia

2021 | INSPIRE 020 43

DIGITAL APPROACHES TO IMPROVING CARE AT THE END OF LIFE We are an ageing population, living longer and dying older.

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iven many of us will use aged care services in the last years of our life, we need IT systems to support aged care providers in planning and managing the needs of clients and residents at the end of life.

Care for older people needs to include caring through to death. For many aged care services this is difficult because there are not well-developed systems for 44 INSPIRE 020 | 2021

identifying, planning, assessing and providing palliative care and care at the end of life. Part of the challenge is that care planning and delivery: • will occur over time; • must reflect changes in needs; • support care across providers where needed; and • facilitate communication with the person, the family and other providers

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as well as manage deterioration and dying. For the sector, issues around care at the end of life have become more critical given the demand for care arising from population ageing and the current focus on reform.

A national consortium of three universities and five peak bodies is responsible for the End of Life Directions for Aged Care (ELDAC) Project, which provides information, guidance and resources to health professionals and aged care workers to support palliative care and advance care planning in the aged care sector.

Flinders University is one of the consortium partners and researchers from the University’s Research Centre for Palliative Care, Death and Dying have led the development of the ELDAC dashboard. The dashboard is one of a set of projects being undertaken by Flinders within the Technology and Innovations stream of the ELDAC Project.

The ELDAC dashboard is an integrated digital solution that aims to normalise basic data collection processes relevant to end of life care and to embed a care approach using data variables that are already found in many IT systems. Data summaries and data visualisations produce timely information to assist in care actions, performance monitoring and organisational decision making.

DIGITAL END-OF-LIFE DASHBOARD

Our aim was to identify, design and enable an activity and performance data set to help identify practice, education and process gaps affecting care at the end of life.

Rather than build a stand-alone system, the development approach was to create a prototype of an end-of-life dashboard and develop instructions for its integration into existing IT systems and an implementation guide for use by the aged care services using these IT systems.

This approach supports existing relationships between aged care services and IT providers, prevents duplication of data collection by services, protects data privacy, and provides access to real time data by the service whenever it is needed.

The Flinders team mapped existing policy and standards documents for candidate reporting items and tested the applicability of the ELDAC care framework for dashboard use. The proposed development approach and purpose was discussed at consortium meetings. Initial interviews with sector representatives on care activities were followed by formal collaboration with the aged care sector in a codesign process.

The co-design workshop provided a forum for the review of proposed elements, work processes and key practice and care issues. At the conclusion of the codesign workshop, there was an agreement that a digital

dashboard focusing on end-of-life elements in aged care would be valuable both clinically and managerially.

The development of use cases at the workshop informed the structure and design of a prototype dashboard. The prototype design was then created as a working model by the Flinders research team and reviewed by a reference group of end users.

An aged IT industry engagement approach was planned to support a trial integration into existing systems following initial discussions with IT companies at aged care and at IT conferences. Following an open call to the aged care IT industry, four IT companies were selected and the Flinders team worked with them on integrating the dashboard elements into their systems.

After integration into their system, the IT companies forwarded an invitation to aged care services using their system to participate in an implementation trial of the dashboard undertaken by Flinders. Fourteen services completed the implementation trial.

This trial showed that dashboards present a useful mechanism to prompt clinical actions, track care needs and enable reporting to management. The study also highlighted the complexity of the aged care environment and provided rich data on integration and implementation c o n s i d e r ati o n s w h i c h a re re f i n i n g th e ex i s ti n g documentation and implementation supports.

MEANINGFUL ENGAGEMENT FOR WICKED PROBLEMS

Most importantly, the dashboard project has highlighted the importance of meaningful engagement with the aged care sector and the IT industry. Increasingly research is addressing wicked problems which reflect complex interdependencies and diverse considerations. Investing time in understanding context and building relationships needs to be part of our research endeavours.

Acknowledgement: ELDAC is funded by the Australian Government Department of Health

Authors: Professor Jennifer Tieman & Dr Priyanka Vandersman Research Associate, End of Life Directions for Aged Care (ELDAC) Project College of Nursing & Health Sciences from Flinders University

2021 | INSPIRE 020 45

AWARD SPONSOR FEATURE

Dillon Hammill

MR DILLON HAMMILL

The Australian National University (ANU) has a long history in pushing the frontiers of knowledge and is a proud partner of Research Australia's Annual Awards as the Category Sponsor of the Frontiers Award.

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o d a y ’s h e a l t h p r o b l e m s a r e c o m p l e x , multifaceted and protracted and they need fresh thinking and bold approaches. As a nation, we need to encourage bold health and medical research if it is going to transform and save lives.

ANU has a national responsibility to focus on tackling the complex challenges facing humanity and to carve out new research frontiers that contribute to the solutions needed.

We are proud to be a part of the awards and to celebrate and promote the great work of Australian scientists and our ANU colleagues. Meet these talented minds.

46 INSPIRE 020 | 2021

Nominated for the Data Innovation Award Sponsored by Bupa Health Primary Nominator: Ines Atmosukarto, ANU Secondary Nominator: Cancer Council Victoria Dillon Hammill is a PhD student at the ANU John Curtin School of Medical Research who utilises flow cytometry as a tool to identify novel combination immunotherapies for the treatment of cancer. Flow cytometry has fast become one of the standard techniques used in research, industrial and clinical settings to characterise, quantify and classify biological cells.

While, recent technological advancements in flow cytometry have allowed researchers to interrogate cells in unprecedented detail, it has not been adequately met with developments in commercially available software platforms for data analysis.

Ground-breaking software: Dillon identified an urgent need for a robust open-source software that could integrate conventional analysis methods and novel computational methods in a unified format that is freely accessible to all end users.

He designed and developed CytoExploreR, which has become one of the most comprehensive software packages for cytometry data analysis, and DataEditR, an R package that makes it possible for anyone to interactively import, view, edit, filter, and export their data in R without any coding. Dillon continues to develop ground-breaking software packages that make it easy for anyone to use R for their data analysis, and that can quickly adapt to new developments and features.

ANU NOMINEES IN THE 2020-21 AWARDS

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Professor Kamalini Lokuge

HUMANITARIAN HEALTH RESEARCH INITIATIVE

Nominated for the Health Services Award Sponsored NSW Health Primary Nominator: Professor Keith Nugent ANU Secondar y Nominator: Public Health Association of Australia Associate Professor Kamalini Lokuge is a former doctor and medical epidemiologist for Médecins Sans Frontières, the World Health Organisation and the International Committee of the Red Cross. She is the Lead for ANU's Humanitarian Health Research Initiative (HHRI), which exists to help those in greatest need.

Consisting of epidemiologists, primary health care professionals, anthropologists, biostatisticians, and early career researchers, the HHRI team have extensive experience supporting communities to improve their health and wellbeing across a range of topics, including maternal and child health, domestic violence, COVID-19 and other disease outbreaks. Drawing on this experience, the HHRI team has contributed substantively to health and health services in crisis nationally and internationally.

Pioneering new models of research and implementation in crisis: The team has pioneered new models of health services research and implementation in crisis, incorporating extensive end-user engagement, program co-design and implementation, and rigorous trialling, monitoring and evaluation. The program’s work has included global and local work on health systems strengthening, maternal and child health, gender-based violence and high-risk outbreak control.

It has had an emphasis on health ser vices and implementation research leading and participating in fieldlevel responses to Ebola, avian influenza, pandemic H1N1 (2009) influenza and Lassa Fever, spanning Africa, the Middle East, Asia, and Australasia.

Dr Danielle Ingle

DR DANIELLE INGLE

Nominated for the Griffith University Discovery Award Primary Nominator: Professor Benjamin Howden, University of Melbourne Secondary Nominator: The University of Melbourne Dr Danielle Ingle was an ANU Post-Doctoral Fellow at the ANU Research School of Population Health, and has now joined the University of Melbourne as an NHMRC Emerging Leadership Fellow. Her fellowship integrates microbial genomics with population modelling, antimicrobial resistance data and epidemiology of enteric bacterial pathogens that represent significant threats to public health.

Changing the fundamental understanding of the epidemiology of Shigella-related infections: Dr Danielle Ingle works at the interface of microbiology and computational genomics and is truly part of the genomic revolution currently transforming clinical and public health microbiology globally. Her work has contributed to shifting our fundamental understanding of the epidemiology of Shigella-related infections. These infections have been traditionally considered as food-borne infections with travel to countries where Shigella is endemic the greatest risk factor. Dr Danielle Ingle has demonstrated that the infections could be considered sexually transmitted infections (STIs) which have different risk factors and surveillance protocols. This represents a significant shift in the outbreak dynamics of Shigella, changing our fundamental understanding of the epidemiology of Shigella related infections, and public health surveillance by impacting efforts to track and control infections.

2021 | INSPIRE 020 47

AWARD SPONSOR FEATURE

Dr Brett Scholz Professor Imogen Mitchell

PROFESSOR IMOGEN MITCHELL AND A/ PROFESSOR BRETT SCHOLZ

Nominated for the Health Services Award Sponsored by NSW Health Primary Nominator: Professor Zsuzsorka Kecks, ANU Secondary Nominator: ANU Professor Imogen Mitchell is currently the Executive Director Research and Academic Par tnerships at Canberra Health Services, and Clinical Director for the ACT COVID-19 Response and Intensive Care Senior Staff Specialist at the Canberra Hospital. Prior to this, Professor Mitchell was Dean of Medicine at the ANU Medical School from 2016 to 2020.

Her research has focused on improving health care systems with a particular interest in implementing and evaluating systems and processes to recognise and respond to acute physiological deteriorating patients.

48 INSPIRE 020 | 2021

Dr Brett Scholz is a Senior Research Fellow at the ANU Medical School and currently holds Adjunct positions in the Adelaide Medical School and the University of Canberra.

As a critical health psychologist, Dr Scholz’s research focuses on making health and health services more equitable through challenging power norms and consumer leadership.

Improving end-of-life care services: Prof Mitchell and Dr Scholz led a research program to improve endof-life care services. The work was undertaken across nine hospitals and led to an Australia-wide end-of-life care audit tool for hospitals (ACSQHC, 2019), which allows hospitals to examine their practices and determine gaps that need to be resolved.

Their research program has served to extend the concept of ‘consumer leadership’ from mental health to the end-oflife care sector. The team, in partnership with a consumer researcher, has brought the consumer leadership agenda to end-of-life care research, with a focus on redressing power imbalances between consumers and health service providers. This will facilitate patient-centred care, and ensure that care provided is safer, and more relevant to consumers’ needs. Research outputs by the team members have informed numerous health care policies and patient information materials.

ANU NOMINEES IN THE 2020-21 AWARDS

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Dr Anna Olsen

DR ANNA OLSEN

Nominated for the Health Services Award Sponsored by NSW Health Primary Nominator: Professor Christine Phillips, ANU Secondary Nominator: ANU Dr Anna Olsen is an Associate Professor in the Social Foundations of Medicine at the ANU Medical School.

Throughout her career, she has been consistent in her commitment to collaborative research that benefits the lives of those oppressed by social and economic structures.

Her work has led to national changes in health service practice and harm minimization policy agenda. Focused on the reduction of mortality and morbidity from illicit drugs use, as well as associated stigma and discrimination, Associate Professor Olsen has been actively involved in the production of an evidence base for controversial harm minimization health services.

Reducing the health and social impacts of illicit drug use: For almost a decade, she has been engaged in translational research around naloxone distribution, an opioid antagonist used in the treatment of opioid toxicity.

More recently, she led a careful, well-theorised, and engaged evaluation of festival-based pill-testing in which a range of health and social impacts were defined. This body of work has facilitated legislative changes and new health service programs.

Transformation and social justice lie at the heart of her research, with an intent to create a better understanding of health inequalities and, in turn, influence policy responses and health care systems that respond to people in the real world.

Professor Matthew Cook

PROFESSOR MATTHEW COOK

Nominated for the Frontiers Award Sponsored by ANU Primary Nominator: Professor Russell Gruen, ANU Secondary Nominator: ANU Matthew Cook is Professor of Medicine at ANU, Director of Immunology at Canberra Hospital and Co-Director of the Centre for Personalised Immunology. He is also medical director of Canberra Clinical Genomics, a NATAaccredited (National Association of Testing Authorities) diagnostic genome sequencing facility.

As a clinician-scientist, he has more than 20 years of experience using genetic analysis to elucidate disease pathways, focussing on immune def iciency and dysregulation diseases.

An end-to-end model that unifies discovery and clinical practice: Prof Cook operates a translational medicine clinical and discovery program. His approach is distinguished by the comprehensive nature of the pipeline that extends from patient consultation through laboratory discovery and back to treatment in the clinic.

This research program aims to tackle mechanisms of disease and consists of a case-by-case, deep analysis of patients presenting with chronic and debilitating disease with the explicit intention of improving outcomes through identification of the precise pathophysiological pathway that applies. In essence, he has implemented an endto-end model that unifies discovery and clinical practice through application of genomics and molecular medicine 2021 | INSPIRE 020 49

INTERNATIONAL GROUNDBREAKING RESEARCH DRIVES TREATMENT FOR ME/CFS

50 INSPIRE 020 | 2021

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Affecting around 250,000 Australians, myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) often leaves sufferers in a nearpermanent state of exhaustion and sometimes unable to work, think clearly or care for themselves. It is a complex illness characterised by multi system impairments including debilitating muscle pain and fatigue.

D

iagnosis, treatment and management of CFS/ME is estimated to cost the Australian community more than $2.5 billion annually.

Currently, there is no effective treatment or cure and patients may take years to be correctly diagnosed.

Researchers from the National Centre for Neuroimmunology and Emerging Diseases (NCNED) at the Menzies Health Institute Queensland, Griffith University are working to successfully diagnose and treat the devastating illness. Over the past 10 years, their worldfirst research with international and national collaborators has revolutionised scientific and clinical understanding of the illness.

ME/CFS: A DISABLING AND DISTRESSING CONDITION

Alem has been suffering from severe ME/CFS for 20 years.

As he is too ill to speak, his mother Helen provided these comments: “Alem has now been completely bedridden for six years, 24 hours a day. He cannot shower and I have to change his clothes, cut his fingernails, cut his toenails, clean his commode, and cut his hair and beard. He must spend his days in bed in a darkened room, barely able to swallow food or use the toilet.

He has constant pain and headaches, gut problems and cannot tolerate the smell of perfume, cleaning agents and other chemicals. Alem feels he is hopelessly trapped in his body and at times wishes his life to end. Suicide is a constant thought.”

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From Left Prof Muraki, Prof Sonya Marshall-Gradisnik and Prof Don Staines

NATIONAL AND INTERNATIONAL COLLABORATION THE KEY TO SUCCESS

NCNED and national and international collaborators in WA, Victoria, Japan and the UK are undertaking advanced investigations into ion channel functions through electrophysiology and flow cytometry, as well as magnetic resonance imaging (MRI) in ME/CFS. NCNED Scientific Director, Professor Sonya MarshallGradisnik said a major breakthrough for their research has been a collaboration with Professor Katsuhiko Muraki of Aichi Gakuin University, Nagoya, Japan.

“Professor Muraki is a world expert in ion channel pathology using electrophysiology or patch clamp, which we perform on natural killer (NK) immune cells in patients with ME/CFS’, she said. ‘Patch Clamp is a laboratory technique in electrophysiology used to study ionic currents in individual isolated living cells, and we have applied this technique in NK cells isolated from patients and healthy controls.’

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changes in a group of ion channels known as Transient Receptor Potential (TRP) ion channels (also called ‘Threat’ receptors) in people with ME/CFS. These ion channels and the cells in which they reside are greatly impaired, indicating that similar deficits will occur in all other tissues and organ systems with these ion channels, with significant effects.” Ion channels are pores in cell membranes that allow various ions e.g. Ca2+ ions to enter or leave a cell. They are essential for cellular function and regulate many metabolic pathways.

NCNED Clinical Professor Don Staines said

understanding the pathophysiology of ME/CFS will greatly improve our understanding of the illness and will assist improved treatment for patients through better, internationally adopted clinical guidelines. Treatment for this illness may involve restoring these ion channels to normal function.”

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From Left Prof Sonya Marshall-Gradisnik and Prof Don Staines

TREATMENT OPTIONS EXPANDED THROUGH PATCH CLAMP ELECTROPHYSIOLOGY

Understanding how TRP calcium ion channels work can be imputed from treating NK cells in the patch clamp with pharmacotherapeutics. Existing drugs with known safety data can exert restorative effects on TRP channels.

“We can measure effects of drugs on TRP channels in NK cells to see if their cytotoxic effects are enhanced. We have restored function of NK cells of ME/CFS patients to that of healthy controls,” said Professor Marshall-Gradisnik “This means that these pharmacotherapeutics may be effective in treating the illness by reversing the damage to these ion channels in other tissues of the body.”

One target TRP ion channel of interest, TRPMelastatin 3 (TRPM3) is densely located in the central nervous system, including eye, hippocampus, dorsal spinal ganglia, choroid plexus, and other tissues. As a store-operated calcium channel, TRPM3 interacts with other ion channels and receptors including acetylcholine receptors (important for neurotransmission in brain and muscle) and pancreas (insulin release and regulation). The impact of these TRP channels in myelination—important protective insulation for brain, spinal cord and peripheral nerves—is now being investigated by NCNED’s research team.

INDUSTRY AND FUNDING ENGAGEMENT

NCNED’s research is being recognised by industry health and laboratory service providers in moving closer to a diagnostic test and suitable pharmacotherapeutics,

including repurposing drugs for treatment. Candidate drugs are currently being tested through patch clamp electrophysiology at NCNED through competitive grants and philanthropic funding. NCNED undertakes this research with national and international collaborators through these successfully funded grants.

NCNED has achieved $14 million in funding over the last 10 years. Competitive grants include NHMRC, MERUK (UK), Queensland government, Stafford Fox Medical Research Foundation, Douglas Stutt, and the Mason, McCusker, Buxton and Stewart Foundations. NCNED is also home to the Allison Hunter Memorial Foundation.

Support from funding bodies will enable innovative ground-breaking research at NCNED to find a treatment or cure for ME/CFS. For Alem, his future depends on it.

Author: Professors Donald Staines and Sonya Marshall-Gradisnik are Co-Directors of NCNED. They have spearheaded novel discoveries of ion channel pathology in ME/ CFS through 10 years of funded biobank research initiatives in electrophysiology and pharmacotherapeutics. NCNED’s discoveries, including MRI, have revolutionised scientific and clinical understanding of the illness and are shaping policy reforms, including revised clinical case definitions and practice guidelines, as well as better treatments for people with ME/CFS. Griffith University

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Using film & digital media to raise dementia awareness in culturally and linguistically diverse communities.

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imited awareness of dementia in culturally and linguistically diverse (CALD) communities leads to delayed diagnosis and help-seeking. Thanks to funding provided by the Australian Government Department of Health’s Dementia and Aged Care Services Fund, an innovative project ‘Moving Pictures’ aims to improve dementia awareness in CALD communities using film and digital media.

One in three older Australians are from a culturally and linguistically diverse (CALD) background. As many CALD Australians reach old age, they will require treatment and care for aged-related conditions such as dementia.

However, lack of awareness about dementia and knowledge of related supportive services are significant barriers delaying help-seeking in Australia’s CALD communities.

Cross-cultural differences in understandings of dementia and its symptoms are one reason for this difference. In some CALD communities, dementia symptoms are considered a part of normal ageing; in others, dementia can be highly stigmatising and associated with madness, witchcraft, or the result of living in a ‘bad’ family. Such beliefs influence engagement with medical services and help seeking.

Even when symptoms of dementia are recognised, many lack knowledge about where to go, what services are available to them, and struggle to navigate Australia’s complex aged care system.

Furthermore, in many cultures older people are expected to be cared for by their families. Therefore, seeking help outside one’s family may be considered taboo.

These challenges are compounded by the language barriers that many CALD families face when accessing information and communicating with health and aged care providers.

Due to these factors and more, older people from CALD backgrounds tend to seek help for dementia later than that the English-speaking majority, resulting in delays in the diagnosis of dementia, and poorer prognoses.Even following diagnosis, they continue to encounter barriers to care for the reasons discussed above.

THE MOVING PICTURES PROJECT

‘Moving Pictures’ is an innovative and interdisciplinary project which aims to raise dementia awareness in CALD communities using film and digital media.

Storytelling is a powerful tool in health promotion, and in this project the stories of 112 family carers from nine different languages are used to create 27 short films that are engaging, accessible, and bypass barriers related to literacy and/or dementia literacy.

Co-production, collaboration and engagement are key features of this project.

To create the films, the research team worked closely with family carers of people living with dementia in Melbourne, Sydney, Perth, Brisbane, and Adelaide.

The project comprises two phases: In phase one, we developed resources in Arabic, Cantonese, Mandarin, Hindi, and Tamil and in phase two, we are finalising resources in Vietnamese, Spanish, Italian, and Greek.

These languages are widely spoken in Australia’s largest established and emerging older CALD communities. The team also worked closely with 41 health and aged care service providers that support these communities.

Our multilingual research team translated and transcribed each interview, analysed the data, and created draft storyboards for each film. Then, in consultation with family carers, services, and peak bodies such as Dementia Australia, the storyboards were refined and the films were professionally produced. Once produced, each film was 2021 | INSPIRE 020 55

reviewed by the original interviewees, participants from the co-production workshops, and community members before being finalised for wider dissemination.

The films comprise a mix of stories from the family carers and providers and are either entirely in-language or a combination of the specific language and English.

All films are subtitled and reiterate messages about the importance of timely diagnosis, reaching out for support, and caring for the carer.

As a complementary resource, short informational comics in both electronic and paper formats were also produced in the nine languages plus English. To ensure that the resources were as accessible as possible, a mobileoptimised website hosts all finalised resources: www. movingpictures.org.au. All of these resources are available for free to anyone anywhere in Australia and internationally.

ALREADY SUCCESSFUL

The project is set to be completed by the end of 2021, but the resources (films, comics and website) have already had good uptake in communities and among services.

Since 2019, more 9000 comics have been distributed nationally, the website has had more than 20,000 page hits, and the resources have been cited on a number of Australian government, health, and not-for-profit websites.

The project has also gone international, with a similar approach to be trialled in India from 2021 onwards.

The success of this project rests on the collaborations and partnerships that have been built with over 100 ethno-specific providers, advocacy groups, and peak bodies across Australia.

This strategy has been pivotal to engaging with CALD communities across all stages of the project from recruitment through to dissemination. Engaging with respected and trusted providers has helped overcome the common challenge faced by researchers, which is how to engage with seldom-heard CALD communities on sensitive topics such as dementia.

Because of these ongoing ef for ts, the team has assembled one of the largest national CALD research engagement networks in Australia and is continuing to build our expertise on cultural diversity and dementia in Australia and around the world.

For more information on the project, please contact the project manager, Dr Josefine Antoniades (J.Antoniades@ nari.edu.au)

Authors: Associate Professor Bianca Brijnath is Director of Social Gerontology at the National Ageing Research Institute and Chief investigator on the Moving Pictures project. Dr Josefine Antoniades is a Research Fellow at the National Ageing Research Institute and Project Manager on Moving Pictures. Dr Andrew Simon Gilbert is a research fellow at the National Ageing Research Institute.

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Associate Professor Bianca Brijnath

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TACKLING THE IMPACT OF CONCUSSIVE INJURY IN SPORT

Associate Professor Andrew Gardner 58 INSPIRE 020 | 2021

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With increasing of CHRISTOPHEawareness KEREBEL the potential impact of sportrelated concussion, University of Newcastle researchers are collaborating with athletes, tech startups and international research institutes to tackle the full spectrum of concussive brain injuries.

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ontact sports are a big part of Australian life; men, women, and children of all ages regularly take par t in rugby union, rugby league, Australian Rules Football, football (soccer) and hockey.

While these sports provide a range of physical and social benefits, they also come with the risk of concussive injuries.

Despite growing public concern about concussion in sport, the global sports community does not have a universal approach to preventing and better managing concussive injuries. University of Newcastle researchers are working to change that through a series of collaborations designed to tackle the full spectrum of concussive injuries – from tackling techniques, to returnto-play assessments, and long-term treatment and care.

STARTING WITH PROFESSIONAL RUGBY

Our foundational collaboration is The Retired Professional Rugby Players Brain Health Research Program – one of the world’s largest studies into head injuries and brain health in collision sport.

For this multi-national, multi-year research collaboration, we partnered with Australia’s National Rugby League (NRL), Spaulding Research Institute at Harvard Medical School and Massachusetts General Hospital in an effort to transform our collective understanding of sport-related head injuries. Outcomes will be used to influence policy, practice and care – not just for rugby players but for athletes in other contact sports.

Our team will combine expertise and resources to accelerate the pace of this science, disseminate the findings to the medical and scientific community, and translate the knowledge gained to improve health care for retired NRL players and other former athletes worldwide.” Professor Grant Iverson, Harvard Medical School 2021 | INSPIRE 020 59

The study includes: • d etailed health surveys to examine the physical, psychological, and cognitive health of former NRL players; • a comprehensive study of the brain health of former players through in-person neuropsychological assessment and multimodal brain imaging ; and • a brain donation program for deceased NRL players, in partnership with the Sydney Brain Bank and funded

by Neuroscience Research Australia (NeuRA) and the University of NSW. The Retired Professional Rugby Players Brain Health Research Program is supported by complementary research collaborations that address inter vention, identification of potentially concussive injuries, and medical assessment for those affected.

INTERVENTION: MEASURING THE IMPACT OF DIFFERENT TACKLING TECHNIQUES

Using technology in the University of Newcastle’s stateof-the-art biomechanics laboratory, we partnered with Australian rugby players to capture the impact of various types of tackling techniques. We’re now looking to work with the National Rugby League to review the coaching manual on tackling technique using this evidence-based approach.

IDENTIFICATION: USING SMART MOUTHGUARD TECHNOLOGY

We’re part of an international collaboration that’s using smart mouthguard technology to measure kinetic impact (peak linear and rotational acceleration) associated with significant head contact. Data captured through mouthguard sensors will be compared with in-game video analysis to validate readings and give researchers more information about the potential impacts of concussive injuries. The data may also be developed to provide

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individualised information about potential exposure over the course of a player’s career.

The technology has been developed by Melbournebased tech startup HitIQ and is currently being validated in collaboration with several football codes and teams in Australia, the United States and the United Kingdom.

ASSESSMENT: PROVIDING CLINICAL SUPPORT FOR CONCUSSED ATHLETES

Professor Chris Levi (clinical neurologist and Director of Clinical Research and Translation at The University of Newcastle) and I co-founded Australia’s first public health sports concussion clinic for adults, which provides free evaluation and medical recommendations to athletes suffering concussion. Based at John Hunter Hospital in Newcastle, the clinic is open to athletes aged 12 and over of all abilities and disciplines – from junior teams to professional players.

BENEFITS OF FOSTERING COLLABORATION

Our collaborations with national and international experts have helped us deliver a level of productivity we could not have achieved on our own. Their advice and assistance with the translational aspects of our work has been incredibly valuable. Because of the collaborative environment we’ve been able to foster, our research program is truly international and has global influence.

Having world-class partners also helps build credibility in the international community; essential considering much of our funding comes from philanthropic sources, including charitable foundations and community-backed organisation like the Hunter Medical Research Institute.

Over the past few years, our research outcomes have helped build evidence-based policy at Sports Medicine Australia and several sporting organisations. With continued collaborations, we can make sporting codes around the world safer for men and women of all ages.

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Author: Associate Professor Andrew Gardner – Director of the Brain Injury Research Program for the University of Newcastle’s Priority Research Centre for Stroke and Brain Injury and Co-Director of the Hunter New England Health Sports Concussion Clinic

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PARTNERING WITH POLICY AND PRACTICE TO PREVENT CHRONIC DISEASE

WHY WE ARE STRONGER TOGETHER The experience of our worldcollaboration is showing how partnerships across disciplines, sectors and agencies can reap important benefits for research, policy, practice, and, ultimately, for the community.

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ustralia’s investment in large-scale researchpolicy-practice collaborations is producing research that is more innovative, timely and relevant than that produced under traditional funding structures, according to the experience of The Australian Prevention Partnership Centre (Prevention Centre) and its af filiated Centres of Research Excellence (CREs).

The Prevention Centre’s Co-Director, Professor Lucie Rychetnik, says its experience over eight years has shown there is great value for both researchers and governments when working in partnership.

“While Australia is leading the world in many areas of public health research, it has traditionally been difficult to translate the evidence into policy or practice to reduce the rate of chronic disease,” Professor Rychetnik says.

Working in partnership means we have been able to tackle the complex problems contributing to chronic disease in ways that would not have been possible without the nature and size of our collaboration, the strength of our networks and our collective expertise.”

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THE AUSTRALIAN PREVENTION PARTNERSHIP CENTRE

The Prevention Centre was established in 2013 as an NHMRC partnership centre focused on applying systems approaches to the prevention of chronic disease. The pooled funding model allows the partners to invest in policy-relevant research that addresses prevention priorities that are shared across jurisdictions and agencies. The current policy funding partners are the Commonwealth Department of Health, NSW Ministry of Health, ACT Health, Tasmania Department of Health, Wellbeing SA, Cancer Council Australia and VicHealth, with the NHMRC contributing matched funds to boost research capacity.

A core requirement for all the research projects supported through the Prevention Centre (40 completed and 26 underway) is that they are co-designed, and wherever possible co-produced, by researchers working together with the policy partners. This approach has helped ensure the work is relevant and timely for those working in prevention.1 1 Slaytor E, Wilson A, Rowbotham S, Signy H, Burgess A, Wutzke S. Partnering to prevent chronic disease: reflections and achievements from The Australian Prevention Partnership Centre. Public Health Res Pract. 2018 Sep 27;28(3):2831821. doi: 10.17061/phrp2831821. PMID: 30406262.

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It has also enabled the Prevention Centre to fund more ground-breaking and innovative work than would be possible under more traditional funding models.

“For example, in 2016 we funded the development of new participatory approaches to dynamic simulation modelling to forecast and compare the outcomes of chronic disease prevention policies and programs. We’ve been able to support and expand such work on different topics and jurisdictions, including nationally,” says Professor Rychetnik.

PARTNERING WITH CREs – THE COLLABORATION FOR ENHANCED RESEARCH IMPACT

In 2020, the Prevention Centre and four NHMRC CREs joined forces to trial a new Collaboration for Enhanced Research Impact (CERI). This initiative aims to develop a more united voice on evidence-informed prevention by leveraging the joint expertise across its member organisations, as well as drawing on their policy, practice and community collaborations.2 CERI also aims to boost the capacity of its members by supporting early and

2 The Australian Prevention Partnership Centre. CERI; Networking, collaboration & communication. https://preventioncentre.org.au/wp-content/ uploads/2020/09/CERI-Factsheet-August-2020.pdf

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While par tnerships can often enhance the policy and practice relevance of prevention research, well suppor ted capacities for science communications and knowledge mobilisation are also pre-requisites for enhanced research impact.ˮ

Professor Lucie Rychetnik

mid-career researchers in prevention; for example, by sharing resources, networks and opportunities across the member organisations.

Professor Helen Skouteris, Director of the Health in Preconception and Pregnancy CRE, says CERI’s member organisations are prioritising their partnerships to boost the impact of research into chronic disease prevention.

“A continued and expanded investment will see the prevention landscape transformed into one where researchers, policy makers and practitioners are genuinely working together to increase the impact of our research and thus reduce the burden of chronic disease in Australia,” says Professor Skouteris.

CERI’s member organisations already have established collaborations spanning state, territory and national jurisdictions, including with numerous health departments, non-government organisations, Local Health Districts and other service providers, Primary Health Networks, Aboriginal-controlled health organisations, community and social services, food retailers, education and other academic institutions.

By coming together, they aim to consolidate these networks, synthesise what they have learnt, break down disciplinary and sectoral silos, and produce more consistent and powerful messages about what is important for the prevention of chronic disease.

‘RELATIONAL INFRASTRUCTURE’ IS A KEY TO SUCCESSFUL PARTNERSHIPS

The experience of the Prevention Centre and the CERI members highlights that, while research-policy-practice partnerships are essential for research impact, they require dedicated investment in relational infrastructure such as central coordination, convening, and networking functions.

The Prevention Centre and CERI have shared some valuable lessons for supporting successful researchpolicy-practice collaborations, based on their experience.

Working in partnership does not always come naturally.

It often requires new skills from both researchers and partners, and additional investments of time and resources. It also requires flexibility, and dedicated leadership to drive and support the collaborations.

An adequately resourced coordinating function is needed to work in partnership. Provision for this should be included in research funding models.

Partnerships rely on longer-term investments in, and support for, individuals who work across practice, policy and research environments - for example, by more explicitly recognising this work in position descriptions and award structures.

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Dr Helen Skouteris

Author: Professor Lucie Rychetnik is Co-Director of The Australian Prevention Partnership Centre and a Professor with the School of Public Health at the University of Sydney.

Professor Helen Skouteris is a developmental psychologist and expert in health behaviour change and women’s and children’s health, and Director of the Health in Preconception and Pregnancy CRE. A contribution from the Sax Institute

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INTERNATIONAL PARTNERSHIP TRANSFORMING ADOLESCENT HEALTH IN THE PACIFIC A new collaboration between researchers at the University of Sydney and the University of New Caledonia is looking at the health and wellbeing of 1.5 million adolescents across the Pacific.

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n the Pacific region, the health and wellbeing of young people are threatened by the increasing prevalence of overweight and obesity which ranges from 12-30 per cent and up to 60 per cent in some countries.

Collaborative research and partnerships across the Pacific region are pivotal in solving this complex problem. A new research node has been established at the Charles Perkins Centre to garner existing research and local knowledge while working with communities.

Children and Adolescents’ Health and Wellbeing in the

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Pacific (CAHW-Pacific) is co-led by Professor Corinne Caillaud at the University of Sydney and Associate Professor Olivier Galy at the University of New Caledonia.

a significant breadth of land and sea area, as well as population diversity and we rely on local knowledge and expertise to develop our research,” said Professor Caillaud.

“Research collaborations and engagement with communities are integral to addressing the issue of obesity and overweight in the region,” says research node co-lead, Professor Corinne Caillaud from the University of Sydney.

C O - D E S I G N A N D I N N OVAT I O N FO R IMPACTFUL SOLUTIONS

A NETWORK OF EXPERTS ACROSS THE PACIFIC

Professor Caillaud and Associate Professor Galy have been working on a number of programs in the region since 2015.

The relationships they have built with health professionals, government and communities in the Pacific has and will continue to be crucial to the success of the project.

“This new research node brings together health researchers from seven Pacific countries including Australia, New Caledonia, Fiji, Vanuatu, Papua New Guinea, the Solomon Islands, and New Zealand. It’s

“We aim to engage and partner with adolescents in codesigning research projects. This is the best approach to understand their lifestyle, knowledge, views and attitudes towards health and wellbeing,” said Professor Caillaud.

The current focus is on understanding how physical activity and food intake interplay and drive overweight and obesity in the Pacific context. Similarly to elsewhere worldwide, adolescents in the Pacific fail to engage in the recommended 60 minutes of moderate to vigorous daily physical activity as advised by WHO.

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We demonstrated that a user-centred digital education program using a combination of wearable technology, peer learning, physical exercises and goals setting could be delivered in the school context in rural areas of New Caledonia.

The program, called iEngage effectively enhanced physical activity,” explained Professor Caillaud.

Professor Olivier Galy

“iEngage (co-designed with eHealth company BEPATIENT specialising in modular patient-centric digital solutions), records continuously physical activity during the whole program. This is key to assessing physical activity patterns and to support the learning of key concepts and skills, as well as understanding how participants change their physical activity behaviour, said Associate Professor Yacef, expert in computer science at the University of Sydney and co-creator of iEngage.

The team also investigates the impact of the food transition that is happening across the region. We have recently codesigned the first digital 24hr dietary recall app (iRecall.24Pacific) tailored to the food available in New Caledonia.

“This means that we have identified relevant foods to include in our database that contains both traditional and imported processed foods. The iRecall.24-Pacific app is modifiable and adaptable to the diverse islands’ contexts,” said Professor Caillaud.

“We aim to bring together iRecall.24 and iEngage to draw both the quantitative and qualitative features of energy expenditure and energy intake in adolescents,” said Professor Caillaud.

“Our work and our approach are relevant to Australia and to other communities and countries worldwide,” said Associate Professor Galy.

“The CAHW-Pacific research node will continue developing collaborations to reach authentic engagement with communities and to produce research with impact that will benefit Pacific people and societies. For these we are aiming to secure a further funding grant in order to deploy our framework.

The future of our Pacific adolescents depends on it,” concluded Professor Caillaud.

Professor Corinne Cailaud

Authors: Helen Loughlin, Charles Perkins Centre talking to Professor Corinne Caillaud, Associate Professor Galy and Associate Professor Kalina Yacef.

Professor Corinne Caillaud co-lead of CAHWPacific and co-creator of iEngage, Bioinformatics and Digital Health, The University of Sydney.

Associate Professor Olivier Galy co-lead of CAHW-Pacific, co-creator of iEngage and scientific co-coordinator of the H2020 RISEMSCA project: “Family farming, Lifestyle And Health in the Pacific” (FALAH) at the University of New Caledonia.

Associate Professor Kalina Yacef co-creator of iEngage, School of Computer Science, The University of Sydney.

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ZINC DISCOVERY PAVES THE WAY FOR NEW CARDIOVASCULAR TREATMENTS For the first time in 60 years, scientists have uncovered the effects of a new metal in controlling the behaviour of blood vessels around the body, which governs blood flow and pressure.

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he unearthing of what were previously unknown actions of zinc brings implications for the development of zinc-based treatments for a range of cardiovascular and cerebrovascular diseases, including hypertension and stroke.

A SERENDIPITOUS DISCOVERY

Important research findings often come from unexpected places. Our team at the Florey Institute of Neuroscience and Mental health, along with researchers from The University of Melbourne, were investigating the effects of zinc-based therapies on brain function in Alzheimer’s disease mouse models when we stumbled on an unexpected result. The therapy caused blood pressure to decrease.

Several years of research with international collaborators followed that initial serendipitous discovery to find out exactly how zinc may be modulating blood pressure. Our team demonstrated that zinc coordinated actions within the sensory nerves, endothelium and smooth muscle that lines the walls of blood vessels.

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Until this discovery, it was widely recognised that calcium, and its regulator potassium, were the major metals that controlled how muscles surrounding blood vessels expand and contract. We were able to show that zinc played a complimentary role to the effects that calcium and potassium had on blood pressure, where increased cell zinc levels caused veins and arteries to relax and blood pressure to decrease.

Interestingly, we also uncovered that blood vessels in the brain and the heart were more sensitive to changes in zinc than blood vessels in other areas of the body. Why this may be the case is an area that the team plan on investigating in further research.

THE MISSING LINK

Given that zinc is an important metal ion in biology, we were surprised to learn when we made the discovery that there were significant scientific gaps in understanding the role that zinc plays in vascular control and how it carries out this function.

While it was known that certain vascular diseases were a side effect of zinc deficiency, the mechanisms underlying the relationship remained elusive.

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Dr Ashenafi Betrie

We are confident that our findings can offer scientists the missing link in the correlation between zinc and cardiovascular diseases and can act to explain the complex relationship between zinc levels and blood pressure.”

OPENING NEW THERAPEUTIC DOORS

The team’s findings present zinc as a potential target for the development of zinc-based drugs and open doors for new ways to potentially treat vascular diseases such as hypertension, the leading cause of cardiovascular disease and premature death worldwide. As zinc must be transported into blood vessel cells in a highly regulated process, increasing zinc through diet will not achieve changes in level sufficient to control blood pressure, but zinc-based drugs may provide a new approach to treating cardiovascular diseases.

Limitations exist in the calcium-based vascular therapies that are currently available. A commonly recognised side effect of calcium-based therapies is a sudden drop in blood pressure. Calcium-based drugs also appear

Professor Scott Ayton

ineffective for a proportion of the population who develop resistance to therapy over time.

“We hope that our research can underlie the development and further investigation of zinc-based therapeutic options to treat vascular diseases where for some patients current therapeutics are not adequate.”

Newly published in the journal of Nature Communications, the unexpected discovery is anticipated to impact a diverse range of disease areas and spark new lines of research and clinical investigation to better understand and appreciate the full effects of zinc and other metals on biological functions.

Associate Professor Scott Ayton, Head, Translational Neurodegeneration laboratory, The Florey Institute of Neuroscience and Mental Health.

Dr Ashenafi Betrie, Research Officer, Translational Neurodegeneration laboratory, The Florey Institute for Neuroscience and Mental Health

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THE FACE OF DISASTER A ten-year study into the aftermath of the Black Saturday bushfires highlights the importance of community and connection and contains lessons for current and future disaster recovery efforts

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he Beyond Bushfires study, led by Professor Lisa Gibbs from University of Melbourne is the result of collaboration with Emergency Management Victoria, the Australian Red Cross and the Victorian Department of Health and Human Services.

The study captured the complexity of the post disaster environment by partnering with organisations including Phoenix Australia Centre for Posttraumatic Mental Health, the Municipal Association Victoria, the Social Recovery Reference Group, and the Social Research Centre.

The report tracks resilience and recovery in the years since Black Saturday and is the culmination of community meetings, interviews and surveys with over 1000 people from fire affected areas. It found that ten years later, some 63 per cent of people from the worst hit areas felt they had mostly or fully recovered.

“What we know is that the majority of people get back on track and are extraordinarily resilient in the face of terrible loss,” says Professor Gibbs.

But it also showed that some people were suffering persistent mental health problems. Professor Richard Bryant, from the University of New South Wales, found that ten years after the event, some 22 per cent of people from the worst affected areas were still suffering symptoms consistent with disorders like post-traumatic stress, depression and psychological distress.

Work led by Professor Louise Harms from the Department of Social Work at the University of Melbourne also found that some people experience post traumatic growth,

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where the disaster was actually a catalyst for improving their lives, like leaving an unhappy relationship for example.

Unsurprisingly, the people most at risk were those who had lost loved ones or friends or had feared for their own lives. But analyses led by Dr Colin Gallagher, a Research Fellow from the University of Melbourne, also found that the anxiety of temporarily not knowing that loved ones were safe was associated with a higher risk of PTSD three to four years later.

Research led by John Richardson of the Australian Red Cross found that about 56 per cent of study participants reported being separated from family members during Black Saturday, and for 30 per cent it was 24 hours or more before they knew the fate of loved ones.

Having more social ties was associated with higher resilience in the years after the trauma. Being a member of one or two social groups was also protective against mental disorders.

‘There is an increased level of trust and reciprocity in communities with high group membership - people just knowing each other more, engaging with each other, this is what you could describe as a resilient community,’ says Professor Gibbs.

While the majority of people in the worst affected areas of Black Saturday felt largely recovered 10 years on, only a third felt their community had recovered.

Professor Gibbs says that the sense of community is fragile and fostering it is a complex task.

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Professor Lisa Gibbs

What agencies need to realise is that while bringing people together is a great concept, people don’t always get along and shouldn’t be expected to get along.ˮ “We have to honour the notion of community and connectedness but at the same time allow for differences, because communities don’t speak with one voice,” says Professor Gibbs.

THE BASICS MATTER TO MENTAL HEALTH

Another important factor driving resilience is getting the basics right – helping people sort out their housing, jobs and finances. The study found that life stressors like the loss of property and income was associated with poorer mental health outcomes.

Professor Meaghan O’Donnell, from Phoenix Australia Centre for Posttraumatic Mental Health found that some three years after Black Saturday, almost 16 per cent of study participants were reporting ongoing adjustment problems that were distressing and af fected the individual’s day to day functioning.

“Enduring stress isn’t well understood in the disaster context, but if people aren’t well supported, ongoing distress can develop into more serious mental health disorders,” says Professor O’Donnell.

While immediate support for traumatised communities and individuals is crucial, the study clearly shows the need for longer term planning.

This was perhaps most evident in the impact on children caught up in Black Saturday. Work led by Professor Gibbs found that children from the worst affected areas were more likely to suffer learning delays at school, and these delays could extend for years.

“One of the recommendations is that when traumatic events happen we need to make a five-year recovery plan,” says Professor Gibbs.

“The report provides important recommendations that will be relevant to the recovery from recent disasters like the Black Summer bushfires and the COVID-19 pandemic,” says Professor Gibbs.

“I think we all feel more keenly now just how important community is, more of us now know what it’s like when a disaster ends up affecting every aspect of your life.”

Author: Professor Gibbs leads public health research relating to two main fields: 1) disaster recovery and community resilience, including leadership of the 10 years Beyond Bushfires study; and 2) child health and wellbeing. These two fields intersect through her research on child resilience. She is committed to working in partnership with key stakeholders to ensure the relevance of her research, translating into direct policy and practice outcomes. A contribution from the University of Melbourne

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NHMRC CENTRE OF RESEARCH EXCELLENCE IN MEDICINES INTELLIGENCE

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CHRISTOPHE KEREBEL

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Developing collaborations to respond to the medicine intelligence needs of regulators and payers

M Professor Sallie Pearson

edicine overuse and misuse is a global problem, resulting in adverse health outcomes for individuals and populations, and waste of scarce health resources. In Australia, it is estimated that 2–3% of all hospital admissions are medicinerelated, rising to 20–30% in people aged 65 years and over.

Quality Use of Medicines and Medicine Safety is now an Australian National Health Priority; it recognises the urgent need to curtail this significant health and system burden and highlights the importance of evidence-informed decisions by individual patients and treating clinicians, and the policy agencies whose decisions impact the health of entire populations.

REGULATORS AND PAYERS HAVE DIFFERENT EVIDENTIARY NEEDS WHEN MONITORING THE QUALITY USE AND SAFETY OF MEDICINES.

Medicines regulators play an essential role in ensuring the safe use of medicines in the community. This function has traditionally relied on data collected from voluntary adverse event reports provided by doctors, patients, and manufacturers.

While this approach is critical for generating safety signals, data from spontaneous reports are insufficient to quantify the level of harm about specific medicines. Also, these data sources do not provide an understanding of the strength of association between adverse events and medicines use. In contrast, payers must ensure that medicines are used as intended in the ‘real-world’ setting and that provides value for money.

Historically, payers have tracked medicine use and costs using claims data, a by-product of payments to pharmacies for dispensing subsidised medicines.

However, these approaches are generally descriptive and aren’t linked to other health system data such as hospitalisations.

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As a consequence, payers are unable to fully quantify benefits, harms, or other health system impacts associated with decisions to list or change the conditions under which a medicine is subsidised.

Medicines policy agencies worldwide have recognised the need to bolster the portfolio of evidence supporting their current post-market surveillance activities and have endorsed the use of real-world data (RWD) to derive novel insights on the use and outcomes of prescribed medicines.

These active surveillance systems have the ability to generate timely RWD about medicine use and harm. Collaborative partnerships between academics, health providers, regulators and payers are critical to bridging intelligence gaps.

Recent reforms around data availability and use in Australia are paving the way for population-based, real-world data to be combined on a scale never before seen.

The exponential growth and availability of health data linked across jurisdictional boundaries has created new opportunities to transform real-world data assets into RWE. It is now imperative that Australia activate a coordinated approach to collaboration between researchers and health policymakers at all levels of government to ensure that these data sources are leveraged to generate robust and reliable RWD to complement the existing functions of both regulators and payers.

AS DATA BECOMES MORE CONNECTED, SO TOO MUST THE RESEARCHERS WHO USE IT

The NHMRC Centre of Research Excellence i n M e d i c i n e s I n te l l i g e n c e ( M e d i c i n e s Intelligence CRE) was formed in November 2020. It brings together one of the most nationally representative, inter-disciplinary teams of pharmacoepidemiologists and medicines policy researchers from across Australia and internationally to partner with policymakers, clinicians and consumers to support their unique medicines intelligence needs.

The core elements underpinning the CRE’s evidence generation plan include the development of a nationally representative research-ready sustainable ‘big data’ platform and consolidation of fit-for-purpose study designs and cutting-edge analytical methods for data interrogation.

Underpinned by this data infrastructure, the Medicines Intelligence CRE will co-design a “medicines intelligence” pipeline with

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Associate Professor Nicole Pratt

policymakers to ensure that Australian healthcare data assets are used efficiently to provide regulators and payers the knowledge they need to support decision-making.

The CRE will also support researchers working across different sites to navigate access to these data sources, to ensure confidentiality and protection of data, and to foster active collaboration between researchers analysing data to avoid duplication of effort.

THE MEDICINES INTELLIGENCE CRE WILL PROMOTE INTELLECTUAL EXCHANGE

BY STRENGTHENING AND EXPANDING NATIONAL AND INTERNATIONAL COLLABORATIVE NETWORKS OF LEADING RESEARCHERS AND ‘MEDICINES INTELLIGENCE’ END-USERS

The Medicines Intelligence CRE is led by Professor Sallie Pearson, head of the Medicines Policy Research Unit at UNSW’s Centre for Big Data Research in Health and A/ Prof Nicole Pratt from Uni SA’s Quality Use of Medicines

and Pharmacy Research Centre.

The CRE includes ten chief investigators, ten associate investigators and dozens of early career researchers from universities across Australia, including the University of Western Australia, University of Sydney, University of Technology Sydney and Bond University.

Importantly, the CRE is partnering with the Therapeutic Goods Administration and the Pharmaceutical Benefits Advisory Committee to ensure that the new intelligence delivered will drive the policy agenda, improve quality use of medicines, and reduce medicines-related harm for all Australians.

Authors: A/Prof Nicole Pratt, University of South Australia and Sallie Pearson, UNSW Sydney - for the Medicines Intelligence Centre of Research Excellence

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DONATED BREAST MILK TO HELP MORE BABIES

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CHRISTOPHE KEREBEL

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Thanks to generous donors, Lifeblood is partnering with researchers across Australia to investigate how donated breast milk may help improve health outcomes for even more of the tiniest patients.

A

mother’s own milk is the best food for babies, but when babies are born too early, some mums encounter challenges producing enough breast milk.

For babies born very early or very small, donated breast milk instead of infant formula can be lifesaving because it reduces rates of a serious gut disease called necrotising enterocolitis (often called “NEC”).

To help make donated breast milk available to more neonatal intensive care units, Lifeblood established the Milk service in 2018. Since then, over 2500 babies across New South Wales, South Australia and Queensland have received donated milk thanks to 730 mums who have generously donated through our Milk service.

Funding from the federal Department of Health has enabled us to increase our production capacity and expand our milk bank facilities. We’ve just finished building a second milk processing facility in Brisbane, where we’re combining operations with the Queensland Milk Bank.

From our facilities in Sydney and Brisbane, we’ll supply donor milk to hospitals in New South Wales, South Australia, Queensland, and Tasmania.

This will help ensure that all very preterm babies (born <32 weeks gestation) in Australia have access to pasteurised donor human milk (PDHM) when they can’t get enough of their mother’s own milk.

WE’RE MISSING EVIDENCE NEEDED TO INFORM CARE

Very preterm infants aren’t the only babies who have trouble accessing enough of their mother’s milk.

Some doctors and parents think that donated breast milk may help other groups of babies, such as babies born just a few weeks preterm or babies born to mothers who have gestational diabetes (who often experience delays in milk production).

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little evidence about the benefits of donated breast milk beyond the very preterm and low birth weight cohorts.

care for the more than 21,000 infants born moderate to late preterm in Australia each year.

While donor milk could help babies when they don’t have enough of their mother’s milk, it cannot replace all the benefits of mother’s own milk.

We’ll begin a pilot study for the GIFT trial at Women’s and Children’s Hospital in South Australia and Royal Brisbane and Women’s Hospital in Queensland this month. We are applying for funding to support the full-scale trial, which will include more than 2000 babies from five hospitals across South Australia, Queensland, and New South Wales.

Donated breast milk isn’t identical to mum’s own milk because it is pasteurised, which can change the make-up of milk.

Therefore, establishing a sound evidence base of when donor milk has health benefits for babies is important for informing the best nutritional care for when mum’s milk is unavailable.

THANKS TO GENEROUS DONORS, WE CAN ASK BIG QUESTIONS

Thanks to our generous milk donors, we have enough donated breast milk for the first time in Australia to reliably supply the most vulnerable infants and support the robust clinical trials needed to investigate if donor milk has benefits for other babies.

At Lifeblood, we’re working hard to enhance our understanding of how donor milk can help improve health outcomes for Australia’s tiniest patients.

We’ve established our research program using funding provided by Baxter International Foundation, which has allowed us to employ a dedicated Research Fellow (Dr Laura Klein) for milk research.

Our research complements our existing milk banking operations, improving the products and services we can provide to Australian babies and their families.

Lifeblood’s in-house milk research team is passionate but small – in addition to Dr Klein, Dr Vanessa Clifford (Clinical Lead for Lifeblood) and Richard Brown (Director of Healthcare Growth) round out the team.

So that they can ask big questions, they’re developing a research program with collaborators across Australia to increase the scale and reach of our milk research.

PARTNERING TO FIND ANSWERS

For example, we’re working with A/Prof Alice Rumbold’s team at the South Australian Health and Medical Research Institute (SAHMRI) on the GIFT (Giving donor milk instead of formula in moderate-late preterm infants) trial to understand if donor milk, instead of infant formula, can reduce the length of hospital stay and readmissions for the largest cohort of preterm infants, those born moderate to late preterm (32 to 36 weeks gestation).

While babies born moderate to late preterm aren’t as tiny as the very preterm babies, they still experience more health complications than healthy, term babies. They also often can’t get enough of their mum’s milk, and many will receive infant formula while in hospital.

Many of the complications that this group experiences are thought to be associated with poor nutrition during the first weeks of life, so this is an essential step toward improving 80 INSPIRE 020 | 2021

THINKING OUTSIDE THE BOTTLE

We’re also thinking about more ways that donated breast milk can be used to help babies by exploring how to make a protein supplement called a milk fortifier from donated breast milk.

Babies born very small or very early often need extra nutrients for rapid growth that would typically happen during the last weeks of pregnancy. These babies may need more nutrient-dense milk than is possible for a mother (or a donor) to produce.

As the first weeks after birth is a critical time for brain and gut development for preterm babies, doctors may add supplements to deliver the concentrated nutrients required to help premature babies grow.

Australian hospitals traditionally offer milk fortifier made from cow’s milk for these tiny patients, and currently, there is no fortifier made from human milk currently available in Australia.

Cow’s milk proteins can be difficult for preterm babies’ guts to digest and may increase the risk of a potentially fatal gut disease known as NEC,” said neonatologist and SAHMRI researcher Dr Amy Keir.

“A fortifier made from human milk could give these babies the extra nutrition they need, without exposing them to cow’s milk products.”

The fortifier is one of several planned innovations using donated breast milk to support the nutrition of preterm babies across Australia in consultation with parents, researchers, clinicians and other experts.

These projects give you a glimpse of the work we’re doing every day with donated human milk and the steps we are taking to improve health outcomes for our babies.

At Lifeblood, we’re proud to be a key player in Australia’s milk research. We’re connecting with experts and researchers across national networks to promote collaborations within the health sector. These collaborations are vital to helping us grow our contribution to Australian health care.

Authors: Emma Delahunt and Dr Laura Klein

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Showcasing a selection of the 2020-21 Award nominees...

DR MEGAN MUNSIE – MELBOURNE UNI

Nominee for the Advocacy Award Primary Nominator – Prof Melissa Little MCRI Secondary Nominator – Prof Christine Anne Wells – Uni Melb BIO: Professor Munsie is an internationally recognised leader in the stem cell research community and serves on advisory committees to national and international scientific organisations. She has led engagement and policy activities for a series of major Australian Government funded programs in stem cell science and is currently the convenor of Stem Cells Australia.

She holds a joint appointment across the University of Melbourne’s School of Biomedical Sciences and the Melbourne Medical School and heads a highly regarded interdisciplinary research program examining the ethical, legal and social implications of stem cell research.

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PROJECT SUMMARY: Professor Munsie’s research is global in scope and underpinned by an extensive collaborative network of leaders from community, industry and academia. She draws on findings from her interdisciplinary research to develop innovative strategies to address public expectation and influence policy reforms to foster responsible research and clinical translation practices.

She is a research and community leader working at the intersections of stem cell biology, bioethics, science communication, sociology, and science policy, whose work will continue to make a lasting contribution to responsible research and innovation practices and policy in Australia and internationally.

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DR JIAO JIAO LI – UTS

Nominee for the Grif fith University Discovery Award Primary Prof Hala Zreiqat – University of Sydney Secondary Nominator: Prof Joanne Tipper UTS BIO: Dr Jiao Jiao Li is a Lecturer in Biomedical Engineering at University of Technology Sydney and Honorary Associate at University of Sydney, a National Health and Medical Research Council (NHMRC) Early Career Fellow, a chief investigator on the Australian Research Council Training Centre for Innovative BioEngineering, and a Science & Technology Australia 2021-22 Superstar of STEM. Her research in regenerative medicine focuses on developing new stem cell-based therapeutics and bioactive materials, particularly for chronic bone and joint disorders PROJECT SUMMARY: This nominated piece of research is a preclinical study of a bioactive ceramic material, Sr-

HT-Gahnite, invented at the University of Sydney. The study showed the ability of the implant to induce repair in clinically-relevant bone injuries in sheep.

Involving multidisciplinary national and international collaborations, this study was fundamental for the clinical translation of the biomaterial, currently being undertaken by an Australian orthopaedics company. This work has made significant contributions to translating new clinical products for bone repair, and was instrumental in bringing Australian inventions to the global orthopaedic market.

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DR JONATHAN BAEL & TEAM MONASH A/PROF TIM THOMAS – HEAD, DEVELOPMENTAL GENETICS GROUP PROFESSOR ANNE VOSS – DIVISION HEAD

N o m i n e e fo r t h e Fr o n t i e r s Awa r d Sponsored by ANU Primary Nominator – Prof Doug Hilton WEHI Secondary Nominator – Prof Christopher Nolan – ANU BIOS: Dr Baell spent his early career in CSIRO and transitioned to the Walter and Eliza Hall Institute of Medical Research where he established medicinal chemistry capabilities and developed Australia’s first high throughput screening libraries of compounds for biological testing.

He was appointed as Professor of Research, Medicinal Chemistry, Monash Institute of Pharmaceutical Sciences, where he is also Director of the Australian Translational Medicinal Chemistry Facility (ATMCF). His passion is Australian medicinal chemistry translation for drug discovery and development to better treat patients with unmet needs.

A/Prof. Tim Thomas graduated with a PhD in biochemistry from University of Melbourne. He is currently the head of Developmental Genetics Laboratory at the Walter and Eliza Hall Institute. He expanded his research interests to include drug discovery. A/Prof Thomas’s research into MYST family has been highlighted by Nature Asia-Pacific as well as recommended by the Faculty of 1000.

Prof Anne Voss, graduated with a BVSc and a PhD from the School of Veterinary Medicine, Hannover, Germany. After conducting post-doctoral research at Cornell University, USA, and the Max-Planck-Institute for Biophysical Chemistry, Germany, she accepted a Laboratory Head position at the Walter and Eliza Hall Institute for Medical Research.

She was promoted to Division Head in 2012. Prof Voss is an expert in developmental biology, brain development and chromatin regulation. She has been invited to present her work internationally, including in Germany, Russia, USA and France.

PROJECT SUMMARY: Drs Voss and Thomas have spent much of their careers undertaking fundamental biomedical research, with a particular focus on lysine acetyltransferases (KATs). In the mid-2000s, it became clear to them that a particular KAT, called KAT6A, could be an important target for new anticancer therapeutics.

They approach the CRC for Cancer Therapeutics (CTX), which took a risk and resourced high throughput screening of several hundreds of thousands of diverse chemical compounds. Teaming up with medicinal chemist 84 INSPIRE 020 | 2021

Jonathan Baell, they discovery a single compound that showed some promise.

Iterative medicinal chemistry optimization and biological testing of hundreds of modified compounds, eventually led to an advanced compound with efficacy in models of lymphoma, representing a breakthrough new mechanism of demonstrated anticancer response. This discovery has catalysed intense industry interest in this mechanism, with Pfizer announcing phase I clinical trials in 2020 of a potential new anticancer treatment.

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DR MICHELLE ANANDARAJAH – MONASH

Nominee for the Data Innovation Award Sponsored by Bupa Health Foundation Primary Nominator – Prof Geoff Webb Monash Secondary Nominator – a/Prof Sharon Chenn, ICPMR, Westmead Hospital BIO: Dr Michelle Ananda-Rajah is a physician in infectious diseases and general medicine at Alfred Health. She has research interests in artificial intelligence, health services research and the occupational safety of health care workers. In 2019, she was awarded a prestigious TRIP (Translating Research Into Practice) fellowship by the Medical Research Future Fund and appointed to JAMA Network Open as a statistical and methods reviewer.

Michelle is the founder of fungalAi, a platform technology that aims to facilitate faster surveillance and diagnosis of fungal infections in patients with blood cancers and the co-founder of Healthcare Workers Australia, a grass-roots advocacy group supporting better work, health and safety standards for Australia’s frontline.

PROJECT SUMMARY: Invasive fungal infections (IFIs) are rare infections that target people with low immunity such as cancer patients and people undergoing organ transplants. They have a high mortality rate (40-90%), decreased cancer cure rates and cost hospitals millions in antifungal medications.

Current practice in hospitals to detect and manage IFIs involves reviewing radiology, coding data, medical records, antifungal drug prescriptions and microbiology results.

This manual approach is resource intensive, error prone and difficult to standardise. FungalAi overcomes these barriers by automating this process using artificial intelligence to analyse radiology reports and images to detect and manage IFIs more quickly and accurately.

The team led by Dr Ananda-Rajah has developed an artificial intelligence software FungalAi that uses existing radiology chest images and notes to detect and manage IFIs. This smart technology can scan and detect IFIs 24/7 to better support quality improvement and research activities in hospitals where these infections are managed.

This technology has the potential to detect IFIs at the population level.

Early detection and better treatment are crucial to reducing the mortality rate and lessening the burden on patients and hospitals.

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THE LAST WORD Growing impact through collaborations and partnerships For those who dedicate their lives to health and medical research, having an indelible and long-term positive impact on the community is one of the primary pursuits.

W

hether big or small, improving the lives of people and their families is what we strive to achieve every single day.

As South Australia’s largest non-government funder of medical research, The Hospital Research Foundation (THRF) Group committed $29 million towards research grants and patient care in 2020. Encompassing a total of 10 charity partners, THRF Group has helped enable significant and diverse investment into the health and wellbeing of the community both locally and more broadly.

Whist some support is visible and immediate, other strategic investments may take decades to materialise but have the potential to transform lives for generations to come.

These musings led to the formation of a long-term strategic plan designed to enhance community impact by focusing on three key areas of innovation: • Optimisation • Strategic • Blue Sky The collective approach was that we needed to have ambitious aspirations that would optimise existing capabilities and maximise our output, whilst reducing inefficiencies and duplication.

Additionally, we needed to shift our focus towards strategic innovation and better leverage the surplus generated, by being smarter with our time and achieving impact driven growth in a more efficient way.

The third tactic centred around ‘Blue Sky’ innovation.

We had to identify bullish goals that might have been considered unattainable but - through small steps – could eventually generate a transformative impact that was initially considered impossible.

We landed on a business model that was simple, easily explained and executable. A simple illustration of our approach is below.

To enable the continuation of such significant support, collaboration and partnerships with industry and academia have increasingly been at the heart of our business model, proven in its capability to grow impact and Together. Fight.

Nearly 12 years ago, The Queen Elizabeth Hospital Research Foundation (TQEHRF) was a small but impactful charitable foundation supporting research and patient care in the western suburbs of Adelaide.

It provided grants for research, equipment and patient care of around $1.5 million every year. The ecosystem for healthcare in South Australia was evolving and the State Government was perceived to be wavering in its support of some general hospitals around the state.

The board and executive of TQEHRF had some confronting questions to tackle. Why are we here?

What is our purpose? How can we positively impact our community in a way that is meaningful and lasting?

What does the future of philanthropic support for medical research and patient care look like?

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Trust is arguably most important to communities where charities are concerned. With trust as a foundation, the two enablers to achieving this were deemed to be transparency and good governance. To support the pillar of trust, we identified the need to go from worthy cause to a valuable and reputable brand. This would require significant investment, meticulous planning and consistent clarity around objectives and deliverables.

We reasoned that if we could become a trusted community partner, then the intersect of the two circles would represent THRF Group’s ‘licence to operate’.

With carefully considered planning, collaboration, methodical execution and an element of responsible

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‘risk’ taking, THRF Group grew swiftly to a point where we had an impact across all South Australian public hospitals.

Senior health representatives began to view us as trusted partners in their journey to deliver improved healthcare in the community. Within four years we had increased our grants program to $5 million per annum and started to establish strategic collaborations with like-minded organisations eager to make a positive contribution.

By 2015, community interest and support drove us to merge Australian Breast Cancer Research into our Group.

Donors were very clear about wanting their support focused on helping remedy this insidious disease.

Similarly, the merger of Australian Prostate Cancer Research Society Ltd into our group allowed us to operate the three entities with single back end administration, marketing, communications and finance operations. The group model was steadily starting to pique interest from the supporter community who still wanted choice but also efficiency from their trusted charity of choice.

For example, the Repat Hospital Foundation was also interested in pursuing a formal partnership to expand their interest in veterans support in 2015. Fast forward to 2021 and we have repositioned as Military and Emergency Services Health Australia, which has established major national and international collaborations as part of THRF Group and is on the cusp of becoming its own research institute. It currently provides both world leading research and services to the growing veteran and emergency first responders who need support with their mental and physical wellbeing.

THRF Group had also been suppor ting renal transplantation research for over 50 years in 2016, which dated back to the very first live kidney transplant in Australia. This support had evolved into the establishment of Kidney, Transplant and Diabetes Research Australia (KTDRA). Working closely with renal nephrologists in South Australia, we championed procedures such as pancreatic islet transplantation for the elimination of chronic pancreatitis in children. KTDRA is now part of our growing group of partnerships.

The opening of the new Royal Adelaide Hospital in 2017, also presented an exciting opportunity to embed art therapy into clinical services in the new quaternary hospital. Working with Central Adelaide Local Health Network representatives, we established The Centre for Creative Health (CCH), which now employs 10 visual and performance art therapists as well as art curators working with patients across a variety of clinical settings.

During 2019 we also coined the concept of ‘Together.

Fight’ as our call to action for people to come together and support organisations that support them. Together.

Fight has now become synonymous with The Hospital Research Foundation Group in the community, aided by strategic marketing and a focus on activation and trust.

During this same year, we were also keen to better understand the unmet need in the area of palliative care.

We considered that the wider community was ready and willing to have an open dialogue about the journey every person takes at the end of their life. A discussion about supporting palliative care with the Laurel Palliative Care Foundation (LPCF) led to a major investment in palliative care research and patient services in South Australia and ultimately a merger of LPCF into the THRF Group in 2020.

The impact of this merger sparked interest from other groups who recognised the benefits of model- centred mutual support. In 2020, as a result of a growing interest in neuro degenerative disease impacts, Palliative Care SA/NT joined the THRF Group and we have significantly expanded services and support available to people who are living with Parkinson’s and other Neurodegenerative diseases.

In South Australia, people who suffer a neurological event such as a stroke often turn to Stroke SA for support and guidance. THRF had been supporting research into stroke for many years and in late 2020 a formal partnership was established which offered assistance for people who’d had a stroke and their families, with specific support services expanded considerably as part of this joint venture.

There is no question that the collaboration and partnerships model is effective and reaps rewards.

Organisations united in purpose, either formally or informally, can achieve so much more than going it alone.

Why do some people think 2 + 2 = 5? Because the sum of two entities banding together generally yields better results.

While it can be a daunting prospect to open up to other organisations, true and meaningful impact is invariably achieved through collaboration and partnerships. Increasingly, they represent key enablers to a sustainable and prosperous future.

Author: Paul Flynn, CEO, The Hospital Foundation Group

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