INSPIRE Issue 28, 2023

FUTURE WORKFORCE PLANNING – WHAT ARE THE OPPORTUNITIES AND CHALLENGES?

WHAT ARE THE FUTURE ROLES IN HEALTH AND MEDICAL RESEARCH?

Welcome to the Future Workforce Planning edition of INSPIRE

Having a robust and sustainable health and medical research workforce plan is crucial to ensure Australia plans for, attracts and supports our most valuable asset – our workforce of the future.

We must look forward and be brave, bold and aspirational when we are thinking about designing a future workforce. This health and medical research workforce plan should address the challenges faced by the health and medical research sector including staff shortages, talent retention, career progression, job security, and consider financial incentives for early and mid-career health and medical researchers.

It must also factor in the environment we are dealing with in areas of exponential technological growth, precision medicine and on the flip side, the demand for health and medical research due to the rising burden of diseases and an aging population.

At a time when there is ongoing discussion about reforming current research funding channels, we need to ensure there is sustainable funding and investment in all sections of the pipeline from discovery to commercialisation. We envisage a future health and medical research economy underpinned by thriving innovation and a modern manufacturing sector. We can only do this by developing and investing in Australian health and medical research innovation and capability. And one that can move between academia and industry – a high value circular mobility.

In this edition of INSPIRE we explore how you are facing these real-world challenges and finding innovative solutions to tackle them. Read about how the Medical Deans of Australia and New Zealand (MDANZ)

are working to inspire and educate future clinical research leaders, and how fellow members like MCRI are working to foster Australian research talent through collaboration, innovation, and valuesbased employment. The team at The ALIVE National Centre for Mental Health Research Translation discuss the unique challenges for Lived-Experience Researchers. We also hear from Vaxxas about the challenges and opportunities of establishing medtech manufacturing in Australia, while GSK discuss how they are empowering their workforce of the future through artificial intelligence and machine learning. Health services also has its fair share of challenges – Calvary Hospital shares its strategy that is designed to support innovation among their workforce and for their patients.

Our goal is to share the amazing work that is being done throughout the entire Australian healthcare and health and medical research ecosystem. We hope that the articles inspire you to meet and conquer your workforce challenges!

Best wishes

Nadia and your Research Australia Team

Future-proofing today’s workforce for tomorrow’s children MURDOCH CHILDREN’S RESEARCH INSTITUTE

30

Creating a level playing field

Redefining the future of work through health workforce optimisation

Publisher Research Australia Ltd

Art Direction

Matthew Ware p +61 403 844 763 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

INSPIRE is a publication of Research Australia Ltd ABN 28 095 324 379 384 Victoria Street Darlinghurst NSW 2010

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.

32

How to grow a productive research network for next generation leaders

My Twitter : @chriskere CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere

42

Gratitude and hope inspire a transformational gift to cancer research

The impact that philanthropic-based research funding

THE LAST WORD

CHRIS O’BRIEN LIFEHOUSE

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

EVENTS OVERVIEW

PHILANTHROPY ROUNDTABLE

Research Australia’s first Philanthropy Roundtable for the year focused on the theme of Economic Stability Post Covid and How do we grow sustainability in a post COVID environment?

The Roundtable was attended by over sixty representatives from the health and medical research sector. Guests spanned the entire pipeline across academia, medical research institutes, clinical environments, industry, philanthropy and government. Guests heard from a variety of leaders with an interest or expertise in the economic questions facing the health and medical research sector. The Hon. Dr Andrew Leigh MP - Assistant Minister for Competition, Charities and Treasury, was unable to attend the Roundtable, so he provided a video update on the government’s goal of doubling philanthropic giving by 2030. To compliment this sentiment we had Professor Alex Robson, Deputy Chair from the Productivity Commission, and two of his colleagues discussed the broad terms of reference for the Productivity Commission, as well as the inquiry process, milestones, and timeframes. Greg Mullins, Head of Policy at Research Australia, outlined the submissions that we would be making to the Productivity Commission.

Associate Professor Jane Desborough, from the Department of Health Services Research and Policy, Australian National University (ANU), gave spoke about the current trends in consumer remuneration. She outlined the collaboration between Research Australia and the ANU to look at consumer renumeration in the health and medical research sector.

Michele Levine, CEO from Roy Morgan presented their research exploring “Trust and Distrust” of brands in general, and then more specifically in the health and medical research sector. Finally, Penny Gerstle, Director, Public Interest Advocacy Centre Ltd, Co-Chair, Human Rights Watch Australia, discussed the current fundraising environment, she outlined how to fundraise, and then shared her recent experiences as a fundraiser and philanthropist.

Our members actively participated and discussed the key issues surrounding economic stability, the challenges and opportunities surrounding consumer renumeration, fundraising stories and consumer perception surrounding philanthropy and the charitable sector. Research Australia committed to providing ongoing support through our ongoing advocacy work, our partnership with ANU on consumer renumeration and through our new Member Event Series, that will provide up to date news on current policy and legislative landscape, key health policy changes, the future of open research, as well as hearing from our members and guests plus much, much more!

Research Australia launched a new series of 30-minute key issues briefings drawing from a range of policy experts and research leaders to discuss the issues that matter to Australian health and medical research.

These briefings share up to date news on current policy and legislative landscape, key health policy changes, the future of open research, as well as hearing from our members and guests.

The first in this series was post the Federal Budget and was attended by 60 members. The second in the series focused on the potential MRFF and NHMRC reforms. Both events have been well attended and the format has been well received. Research Australia provides these interesting and unique briefings as another member only exclusive benefit.

UNIVERSITY ROUNDTABLE

The second Research Australia University Roundtable for 2023 was held on Wednesday 31 May at the Australian Catholic University, at its Fitzroy Melbourne campus. The Roundtable was hosted by Australian Catholic University at its Fitzroy Melbourne campus. For those who attended in person, a tour of the ACU Health Precinct and lunch were provided prior to the formal proceedings.

The Roundtable was held as hybrid meeting, which was attended by 29 representatives from 25 universities, seven in person. The Roundtable was also attended by Associate Professor Annette Schmiede, CEO of the Digital Health CRC in her capacity as Chair of Research Australia; and Professor Greg Kaplan, COO of the Woolcock Institute, in his capacity as Director of Research Australia. Lucy Clynes, General Manager, deputised for Research Australia CEO, Nadia Levin who was on leave. The Roundtable is chaired by Professor Russell Gruen.

The focus of this roundtable was on engagement with industry.

CSL Incubator - The first presenter was Metani Rooms, who discussed the CSL Incubator as she is the CSL Incubator Establishment Lead. Metani explained the Incubator was being delivered in partnership with the University of Melbourne, WEHI, and Breakthrough Victoria (Vic Government) but that it was accepting startups from all over Australia.

The Incubator will occupy two floors in CSL’s new global headquarters in Melbourne, providing laboratory and other working spaces for up to 40 start-ups at any one time. There is no requirement for the start-ups to be aligned to CSL’s own research or commercial interests. It is due to open in late 2023.

Metani also presented the CSL Research Acceleration Initiative, which focuses on early-stage projects that are in specific areas alignment with CSL’s therapeutic areas. It aims to build relationships with entrepreneurial researchers and fast track discovery of innovative medicines that address unmet needs. Successful applicants receive financial support as well as practical support by CSL champions to provide expert, industry guidance. The program will open in January 2024.

Melbourne BioDesign Program was presented by Professor David B. Grayden, who is based at the University of Melbourne. He leads the Biodesign Innovation program in collaboration with the Melbourne Business School.

The program works with teams of students from the Master of Engineering and Master of Business Administration students to utilise their individual expertise to come together and solve problems in a health and medical research environment.

The program has provided many practical solutions for a range of clinical problems, which has resulted generated many startup companies, who are now progressing towards having products available in the market.

This program is very successful, and Professor Grayden with other institutions who wish to replicate the program but also with students who aspire to become inventors and entrepreneurs.

The next University Roundtable will be held on 30 August at the University of the Sunshine Coast. This roundtable will focus on researchers engaging with Government.

Lucy Clyne with Professor David Grayden

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

NEW MEMBERS

MINDGARDENS NEUROSCIENCE NETWORK

Mindgardens is the first innovation enterprise in Australia to focus exclusively on disorders that involve the brain, emotions, nervous system and thinking processes, towards an ambitious objective: to reshape the understanding, prevention, treatment and – eventually – cure of mental health, drug and alcohol and neurological disorders.

We bring clinicians, researchers and health service managers together with people who live with these disorders, in an integrated, virtual collaboration centre. By combining these perspectives, we generate new ideas and approaches that can be translated rapidly into everyday practice, unconstrained by differences in professional cultures or health system silos, to make a real difference in critical areas like youth mental health, psychosis and dementia.

We have four founding Member organisations: Black Dog Institute, Neurological Research Australia (NeuRA), UNSW Sydney and the South Eastern Sydney Local Health District. We offer them technical platforms for research collaboration and support them to build skills and capacity to join forces on essential questions, bridging the boundaries of their individual expertise and accelerating service innovations.

Our approach is already making a difference. With young people as research advisers we are coinvestors in a collaboration with headspace to clarify and simplify the complex youth mental health and drug alcohol systems. We are scaling up a series of projects to improve the physical health of people who live with psychosis. And businessman James Packer and the Packer Family Foundation in May made a $7 million donation to Mindgardens and UNSW to extend our work in bipolar and other mood disorders.

People who live with emotional, cognitive or neurological conditions are some of the most disadvantaged in our community, but improvements in treatments and services have been notoriously slow to arrive – up to 17 years to introduce advances from the lab into the clinic.

We think the Mindgardens collaboration model has enormous potential to speed up the delivery of innovations to people who really need them, and we are looking forward to working closely with Research Australia and its members to bring more emerging ideas to fruition.

L to R - Ian Jones, Rachel Morrell, Oliver ArdillYoung, Dr Scott Teasdale (sitting), Julie Robotham, Catherine O’Donnell (sitting), Professor Jackie Curtis, Ayse Bourke, Dr Hamish Fibbins, Patrick Gould.

BECOME A MEMBER OF RESEARCH AUSTRALIA

For more information on Research Australia and how you can join contact us at admin@researchaustralia.org

ALIVE NATIONAL CENTRE FOR MENTAL HEALTH RESEARCH TRANSLATION

The ALIVE National Centre for Mental Health Research Translation marks a new era in mental health research across Australia. Funded by an Australian National Health and Medical Research Council (NHMRC) Special Initiative in Mental Health (SIMH GNT2002047) (2021-2026) ($10M), the National Centre’s mission is to transform mental health and wellbeing through primary care and community action with a vision of vibrant communities that support mental health and wellbeing enabling people to thrive. The Centre values are lived-expertise, wisdom in practice, authenticity, outcomes driven from evidence, inclusivity, and bravery. These values are reflected in the codirectorship model that brings together expertise in lived-experience, experience co-design and Aboriginal and Torres Strait Islander research for mental health research translation.

More than 40± Centre investigators, 17 universities, partner organisations work across research programs in prevention across the life course, longer healthier lives in priority populations where unmet physical health needs are contributing to up to 30 years of missed life years, lived-experience models, and mental health care at-scale. The 200+ Next Generation Researcher Network (NGRN) members encompass advanced degree students in mental health research, and early and mid-career researchers across Australia. The Lived-Experience Research

Collective, a central tailored arm for capacity building of lived-experience researchers, has members across universities (77%) and service sectors, government consumer and carer consultant roles and nongovernment/community-based members (24%).

Where the Next Generation Research Network and collective engage and develop future mental health research leaders, the 1900+ member-based CoDesign Living Labs Network operates a communityled model where people with lived-experience (encompassing personal experience and carer, family and kinship group members) drive end-toend research design to translation activities. Such activities include co-designing models of care, new technologies or innovations and participating in priority setting for research grants, and setting research questions. Co-design network members were a part of 500 Australians who identified as having livedexperience of mental ill-health, or as being a carer, family and kinship group member (or experiencing both) who contributed to our Pocket Map for Mental Health Research Translation. The genesis priority areas in the Pocket Map have been expanded in the recently released Phase 1 Consensus Statement Short Horizons 2023 Implementation Actions priorities. Co-design continues for an Aboriginal and Torres Strait Islander people’s well-being pathway in the roadmap for mental health research translation and for pathways for children and families to ensure the priorities of families where a parent experiences mental ill-health are centred.

L to R: Phillip Orcher, Matthew Lewis, Josh Moorhouse, Victoria Palmer, Jennifer Bibb, Michelle Banfield, Caroline Johnson, Elise Dettmann, Glenn Papworth, Caroline Tjung, Dana Jazayeri.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

TIME TO INVEST IN OUR FUTURE CLINICIAN RESEARCHERS

Wclinical research among recent medical graduates. There has never been a better time to invest in an integrated clinician researcher training pathway.

Clinician researchers play a critical role in improving healthcare outcomes. They draw upon their clinical and research expertise to identify research priorities, lead high-quality research, keep communities safe during pandemics, and drive the innovations that are essential for high quality and sustainable clinical care.1

Despite their vital role, the number of medically qualified clinician researchers in Australia is declining. 2 This comes at a time of unprecedented investment in medical research, thanks to the maturation of the Medical Research Future Fund (MRFF). Mindful of the need to expand this vital workforce, Medical Deans Australia and New Zealand (MDANZ) is actively supporting medical schools with their work to inspire and educate future clinical research leaders.

In this paper, we showcase what MDANZ is doing to share best practice in research education and advocate for the establishment of an integrated clinician researcher training pathway.

MEDICAL SCHOOLS AND MEDICAL STUDENTS ARE READY

Medical schools across Australia and New Zealand seek to nurture the curiosity of all medical students and educate them to be research literate. Enthused by the wealth of opportunities available at medical school (e.g., Honours degree, research projects, intercalated higher degrees by research), many students will go on to become active contributors to research, while some will be future research leaders.

Over the last few years, MDANZ has been showcasing the breadth and depth of medical student research. Its first volume of case studies featured examples of the highquality curricular research programs occurring across all Australian and New Zealand medical schools.3

1 Australian Academy of Health and Medical Sciences - Research and innovation as core functions in transforming the health system: A vision for the future of health in Australia. https://aahms.org/vision/

2 Group of Eight: Strengthening Australian Clinical Research – Group of Eight Submission to the Medical Workforce Reform Advisory Committee. https://go8.edu.au/wp-content/uploads/2020/12/Go8AICRTP-FINAL.pdf

3 MDANZ - Research in the Medical Curriculum Volume 1: A window on innovation and good practice (June 2022). https://medicaldeans. org.au/md/2022/06/Research-in-the-Medical-Curriculum-Volume-1A-window-on-innovation-and-good-practice-2022.pdf

Clinician researchers play a critical role in improving healthcare outcomes.

Professor Stuart Carney

Professor Annemarie Hennessy

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

The most recent volume focussed on good practice in regional, rural and remote communities.4

These case studies have galvanised interest and led to the creation of the Research Educator Network (REN) – a community of practice for educators who are responsible for supporting medical students to develop research capabilities. The REN aims to promote best practice in the teaching of research and critical inquiry in medical schools.

It is great to see that most medical students at the point of graduation are interested in pursuing a career involving research: the annual MDANZ survey of graduating medical students about their experiences and career intentions 5 indicates that around 60 percent of medical students in their final year are interested in pursuing a career that includes research.

SECURING THE NEXT GENERATION OF CLINICIAN RESEARCH LEADERS

Although interest in a career that includes research is high among medical students, this has not translated into an increase of medically qualified researchers. With the proportion of doctors identifying as clinical researchers continuing to decline and many specialties underrepresented (e.g., GP, surgery), there is an urgent need for a sustainable solution to support ongoing development of clinician researchers as they progress into postgraduate training.2

One important reason for the decline is the lack of managed career pathways for medical graduates interested in developing their research capabilities whilst they train. MDANZ is advocating for the implementation

of a managed pathway to identify, nurture and train future clinician researchers across the continuum.6

The critical importance of investing in our future clinician research leaders has been recognised by the National Medical Workforce Strategy, which recommended, “Further develop pathways for Clinician Researcher trainees through a tailored program that could facilitate career progression and align with national research priorities”.7 Below we outline some of the key elements of such a tailored program.

TIME TO INVEST IN AN INTEGRATED CLINICIAN RESEARCHER TRAINING PATHWAY

Our proposed integrated clinician researcher training pathway is set out in Figure 1. At its heart is dedicated time for the medical graduate to complete a PhD during vocational training. This enables the medical graduate to draw upon their growing clinical experience and expertise as they develop their research capabilities.

While completing a PhD is necessary, it is not sufficient. Post-doctoral protected time is required for research while the medical graduate completes their vocational training or begins work as a GP or non-GP specialist. This period is critical for the emerging clinician researcher to strengthen their research portfolio and increase their competitiveness for funding applications.

With the introduction of the new prevocational framework (i.e., PGY1 and PGY2) from 2024, there is also an opportunity to embed research opportunities into the first few years. This would enable recent medical graduates to

4 MDANZ Research in Medical Education – good practice in rural and regional areas https://medicaldeans.org.au/category/research-casestudies-volume-2/

5 MDANZ - Medical Schools Outcome Reports. https://medicaldeans.org.au/medical-schools-outcomes-database-reports/

6 MDANZ - Training Tomorrow’s Doctors: all pulling in the same direction – Discussion Paper (September 2021). https://medicaldeans.org.au/ md/2021/09/Training-Tomorrows-Doctors-all-pulling-in-the-right-direction-September-2021.pdf

7 Department of Health and Aged Care: National Medical Workforce Strategy 2021–2031. https://www.health.gov.au/resources/publications/ national-medical-workforce-strategy-2021-2031?language=en

further develop their capabilities and test whether a career as a future clinician researcher is for them.

Some medical graduates enter medical school with a PhD, or complete a PhD at medical school; however, they also require a postgraduate pathway that provides protected time for research and ongoing researcher development.

We believe that we need to urgently invest in our future clinician research leaders. Medical schools are ready. We must build on the interest and skills of our medical students with a clinician researcher training pathway that integrates with postgraduate clinical training.

Author: Distinguished Professor Annemarie Hennessy, Chair, Medical Deans’ Research Committee; Dean, School of Medicine, Western Sydney University Professor Stuart Carney, Member, Medical Deans’ Research Committee, Dean of The University of Queensland Medical School in the Faculty of Medicine

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL My Twitter : @chriskere

EMPOWERING THE WORKFORCE OF THE FUTURE

In a rapidly evolving world where technological advancements and global shifts reshape industries overnight, setting the groundwork for the future has become an urgent imperative.

Medical Director

Dr Alan Paul – GSK Australia Country

For the health and medical community, planning the workforce for the future is shaped by one guiding principle – what does the patient need? When we take this lens, we can help the health of our communities go from strength to strength.

Yet, in order to do this and ensure our work continues at the pace it is at, we need to keep up with the everchanging digital world and plan accordingly. This means building a capable workforce, comprising of individuals with the right expertise and abilities who can help us fully embrace transformative technologies.

LOOKING TO TECHNOLOGY

The role and importance of technologies like Artificial Intelligence (AI) and Machine Learning (ML) in our future workforce cannot be overstated.

These types of technologies have the potential to improve our use of medicines, enabling everyone to live healthier, longer lives. Achieving this ambitious vision not only requires the development of cutting-edge ML and AI products, but also close collaboration and innovation among our workforce.

We currently have access to more data than ever before, and this is only the start of how we apply these technologies to create tangible solutions for patients. GSK’s global teams are leading the way in interpreting and unpacking data through AI and ML products, and thanks to this, we’re already seeing the benefits at a local level. This work helps us to develop medicines with a higher probability of success and to better identify the patients that would benefit the most from these interventions.

While our work with AI and ML is in its early stages, here in Australia we’re focused on bringing in people who can interpret and unpack the growing library of data we have available. This includes inviting digital focused professionals and data scientists into our work to help us drive continuous learning through data.

EMPOWERING OUR COMMUNITY

It’s important we empower and expand our workforce as we adopt new technologies into our work. Initiatives like the GSK Australia Graduate Researcher Program, which is supported by MTPConnect’s REDI initiative, and our Industry Based Learning (IBL) Programme are pathways into our industry that help us bring highly skilled individuals into our work.

These programs play a key role in our future workforce planning. The GSK Australia Graduate Researcher Program provides an avenue into our industry where early career researchers can apply their expertise and enhance their capabilities in a practical setting. This in turn allows us to bring in new ideas and innovation to our teams across the business.

When looking at how we can empower the health and medical research sector more broadly, programs like the GSK Award for Research Excellence (ARE) – which aims to recognise outstanding achievements in medical research - play a significant role. By championing home-grown Australian medical researchers, we can help scientists take the next step in their research – which will ultimately improve the health of patients in Australia and beyond. Many of our previous winners have bolstered their achievements by actively supporting their own teams in their research efforts. An example of this can be seen through 2021 ARE winners Professor Jamie Cooper AO and Professor Rinaldo Bellomo AO, Co-Directors of the Australian and New Zealand Intensive Care Research Centre (ANZIC-RC). Jaime and Rinaldo used the grant that comes with the GSK ARE to support their team of early to mid-level career investigators working on extracorporeal membrane oxygenation (ECMO) technology, which assists with the management of cardiac arrest, severe cardiac failure and respiratory failure. Thanks to this support, their team are advancing their work into this life-saving equipment.

Bringing in new people and supporting our community is very important for the future of our work. While we may not know precisely what the future holds for our industry, empowering our people and providing them with the resources they need to succeed will help us navigate this journey together.

WHAT’S NEXT FOR US

It is essential we work together to foster a diverse workforce that can push the boundaries to create novel models for comprehending diseases.

As we prepare our future workforce, I am excited to work with our people, partners and community as we embrace new technologies, all while ensuring patients remain the central focus to everything we do. It’s an exciting time to be working within the health and medical space and I can’t wait to see what comes next.

Author:

Dr Alan Paul

is

with over

17

years

the Country Medical Director for GSK Australia,

of

pharmaceutical industry experience working in multinational organisations with expertise that spans across Oncology, Specialty & General Medicine, Infectious Diseases and Vaccines. Prior to this role he has held senior executive positions at CSL; AstraZeneca and Ipsen.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

FUTUREPROOFING TODAY’S WORKFORCE FOR TOMORROW’S CHILDREN

Murdoch Children’s Research Institute is ushering in a new generation of data scientists, traditional ‘wet lab’ scientists and clinician scientist fellows with sought-after and futureproofed skills.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

While we aim to recruit and foster the best talent in these areas, there are many challenges. These include competing against ‘Big Tech’ to attract data scientists and machine learning specialists, enlisting wet lab scientists with expanded skillsets to meet today’s demands and helping clinician scientist fellows manage clinical workloads while conducting worldclass research. Overcoming these challenges is crucial to maintain Australia’s world-class medical research capabilities.

In the fiercely competitive data analytics space, ‘Big Tech’ companies in the USA and UK can offer software engineers and data scientists attractive salaries, flexible working options and clear career pathways. To keep experts on as major players in Australia’s Health and Medical Research industry, there must be clear incentives.

Professor Daniel MacArthur leads Murdoch Children’s Centre for Population Genomics, a major initiative with the Garvan Institute of Medical Research in Sydney that fosters Australian research talent through collaborative, innovative, and values-based employment.

Professor MacArthur understands that Australian academia needs to provide a ‘compelling narrative’ that inspires data scientists and researchers at all stages.

“It is difficult to compete with big global players, where the focus has always been on building very large data sets and retaining talented staff,” he said.

“In this new world of genomic technology, large databases and AI, the competition for talent will be fierce – while there will always be great scientists in Australia, where they go is a different story.”

Within the Centre, Professor MacArthur leads OurDNA, a project that aims to increase representation of culturally and linguistically diverse (CALD) communities in genomics research.

In addition to community engagement and co-design, a dedicated team of data scientists, software engineers and computational biologists is required for large-scale data analysis.

Our team manages and interrogates enormous amounts of data, at a scale that is on par with many of the leading genomics initiatives around the world, providing a globally competitive environment for computationally skilled scientists,” Professor MacArthur said.

Murdoch Children’s Heart Disease leader and Novo Nordisk Foundation for Stem Cell Medicine (reNEW) principal investigator Associate Professor David Elliot said there was a need for ‘multidimensional’ career pathways.

“We need to ensure that student researchers in Australia are trained in both clinical and wet lab settings, giving them more options and broader skillset – especially in paediatrics and medicine broadly,” he said.

“However, research challenges such as competing for critical funding and working to short contracts with modest salaries may limit the appeal of working in the biomedical research sector.”

Associate Professor Elliott said despite industry challenges, Murdoch Children’s brought together passionate researchers, dedicated to finding novel and effective therapies for children and adults alike.

“My lab looks at pluripotent stem cells (types of cells which have unlimited capacity to divide, self-renew and differentiate) and how we can use those to create new therapies for heart disease,” he said.

“We tend to attract values-driven people that share the same mission to improve the lives of children globally, and we ensure they possess digital, computational and laboratory skills, so they are truly industry-ready.”

Murdoch Children’s Neurogenetic Research Group (BLC) Team Leader and molecular biologist Dr Kiymet Bozaoglua agreed that we need to look ahead when it comes to the future of health and medical research in Australia.

“Being a wet lab biologist in the genomics era requires computational skills in interrogating and handling data as well as talent in statistics, general science and in programming or coding,” she said.

“Health is also an important consideration when attracting and retaining talented staff in academia and research, as many research and clinician scientist fellows face substantial workloads in addition to being parents or

caregivers. We must provide opportunities for personal and professional development, as well as support for wellbeing.”

Murdoch Children’s Melbourne Vaccine Education Centre (MVEC) Medical lead, Dr Daryl Cheng, said numerous competing demands were also a challenge for clinician scientist fellows.

“I was drawn into both the clinical and research spaces because of the dual opportunity to treat patients face-toface, and also be part of the latest innovations, technology, discoveries, and therapeutics,” he said.

“While this is extremely motivating, I know that many fellows face major competing workloads, and may struggle to manage the demands of each given role.”

Dr Cheng said that longer contracts and more flexibility in medical research would help retain Australian talent in the long-term.

“Our trainee doctor contracts are short, as are researchbased contracts, which doesn’t allow enough space for clinician scientist fellows to foster long-term engagement and contribution,” he said. “We should also create non-traditional pathways, so clinician scientists have better defined stages, opportunities and mentorship to advance their careers which are not purely based on grants and papers.”

Dr Cheng said that despite structural challenges, offering a well-rounded and supportive work environment that is as dynamic and adaptive as its people is key.

Murdoch Children’s is working to overcome these challenges to ensure our future workforce competes against the best and brightest on the world stage and continues to improve health for all.

Author: Author - Kathleen Jess, Media & Communications Advisor

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

STRENGTHENING AUSTRALIA’S RARE DISEASE WORKFORCE

Gaps, learnings and opportunities

Individually rare; collectively common. Rare disease affects approximately 2 million Australians. living with rare disease face common challenges, including high levels of symptom complexity and multisystem involvement, significant diagnostic delays, limited care and treatment options, as well as psychosocial issues.

Some of these challenges can be compounded for people living in rural and remote communities, Aboriginal and Torres Strait Islander peoples, and those from culturally and linguistically diverse backgrounds.

Australia’s health and social care systems, which are designed for more common conditions, engender inherent disadvantages and significant challenges for people living with rare disease and the workforce striving to care for them. Best practice in rare disease care requires access to multidisciplinary teams and specialist rare disease expertise. With fewer than 5 per cent of rare diseases having an effective treatment 2, best practice in rare disease care must also embed research and clinical trials into clinical practice. Yet Australia faces inescapable geographical challenges in distributing and delivering these services and expertise to a small and dispersed population. Many of these challenges can be addressed by a coordinated nationwide, multidisciplinary, crosssector rare disease workforce – networked centres of rare disease expertise.

A national rare disease workforce strategy that responds to current and future demands, including the impact of genomics, is a key priority of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan).1

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) led research to gather evidence as an initial step. RVA established an expert steering committee and collaborated with clinicians, researchers, patients, carers, advocates and industry. This work led to the development of a national workforce strategy for a significant subset of the rare disease workforce—the rare metabolic disease workforce.3 Rare metabolic diseases are a highly heterogenous group of

1 Commonwealth of Australia. Department of Health. National Strategic Action Plan for Rare Diseases. Canberra; 2020. 63 p. Available from: https://www.health.gov.au/resources/publications/ national-strategic-action-plan-for-rare-diseases

2 Kaufmann P, Pariser AR, Austin C. From scientific discovery to treatments for rare diseases – the view from the National Center for Advancing Translational Sciences – Office of Rare Diseases Research. Orphanet J. Rare Dis. [Internet]. 2018;13(1):196. Available from: https://doi.org/10.1186/s13023-018-0936-x

3 Rare Voices Australia and Equity Economics (2023). National Strategy for Australia’s Rare Metabolic Disease Workforce, February 2023. Available from: https://rarevoices.org.au/wp-content/ uploads/2023/03/RareMetabolicDiseaseWorkforce.pdf

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

National Goals for a Strengthened Rare Disease Workforce. Based on findings from the White Paper4 and the Strategy3 – informed by people living with rare metabolic disease and the rare metabolic disease workforce.

poorly understood, complex, multisystemic conditions, requiring care from a variety of specialists—all features closely representing rare diseases more broadly. Identifying this workforce as a basis to understanding the current state of play for rare disease care was driven by anecdotal evidence highlighting alarming workforce gaps from rare metabolic patients and the workforce, including representatives from leading special interest group of the Human Genetics Society of Australasia—Australasian Society for Inborn Errors of Metabolism.

The Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia was published in 2022 (White Paper).4 The White Paper highlighted the breadth and scope of specialist metabolic services around Australia through the combined efforts of committed clinicians, hospital staff, patient groups, families, and allied health providers. An emerging

area of medicine, Australian specialist metabolic services are committed to ensuring patients with rare metabolic conditions receive the best care possible. However, critical shortages in professional expertise and resources are hindering these efforts. Everyone who contributed to this research expressed strong frustration and a palpable desire for change.

Following publication of the White Paper, RVA engaged several rare disease patient group leaders, members of government, state health departments and professional medical groups in one-on-one meetings and forums to co-design a National Strategy for Australia’s Rare Metabolic Disease Workforce (the Strategy).3 The Strategy is an evidence-based, expert-backed framework of goals, recommendations and priority actions that address current high levels of unmet need through a nationally consistent and sustainable rare metabolic disease workforce

4 Equity Economics and Rare Voices Australia (2022). Rare Metabolic Disease Workforce White Paper Towards a Strengthened Rare Disease Workforce for Australia, February 2022. Available from: https://rarevoices.org.au/wp-content/uploads/2022/02/RareMetabolicDiseaseWorkforce_ WhitePaper.pdf

resourced to respond swiftly to innovation and deliver best practice care. The Strategy’s goals for a recognised, connected, consistent, sustainable and innovative rare metabolic disease workforce, are designed to inform broader rare disease workforce challenges in Australia.

BEST PRACTICE IN RARE DISEASE CARE CANNOT BE ACHIEVED WITHOUT SYSTEMICALLY EMBEDDING RESEARCH AND CLINICAL TRIALS INTO REGULAR CLINICAL PRACTICE AND SERVICE DELIVERY

For many people living with rare disease, clinical trials are the only way to access treatment.1 Evidence from specialist metabolic services in the White Paper highlighted significant workforce gaps, making it impossible for most services to facilitate clinical trials. This means eligible Australians living with rare disease are routinely missing out on new therapies. Another barrier to clinical trials in Australia is the lack of a nationally coordinated approach to rare disease data collection, which limits the visibility of eligible patients for recruitment. Urgent investment is needed to embed dedicated staff and infrastructure within specialist rare disease services to enable rare disease data collection, and access to research and clinical trials as part of routine care.

INNOVATIVE SOLUTIONS TO A GLOBAL WORKFORCE CHALLENGE – AUSTRALIAN CENTRES OF RARE DISEASE EXPERTISE

The rare disease workforce must be equipped and nuanced to manage over 7,000 known rare diseases.

Centralising rare disease expertise and resources would overcome challenges of geographical spread and the inherent scarcity of rare disease patients and specialist expertise. There are a growing number of rare disease centres of expertise emerging around Australia, with some focused on a particular rare disease or group of rare diseases, such as the Queensland Lifespan Metabolic Medicine Service (QLMMS), and others with a broader rare disease focus, such as the Rare Care Clinical Centre of Expertise for Rare and Undiagnosed Diseases (RCC), in Perth Children’s Hospital. Networked centres of rare disease expertise, that meet the aforementioned goals for a strengthened rare disease workforce, would ensure all Australians living with a rare disease have equitable access to the same specialist care, wherever they live.

Author: Falak Helwani is the Research and Evaluation Manager at RVA. Falak is also a mother to 2 children living with rare disease.

Nicole Millis is the Chief executive Officer at RVA. A qualified social worker, Nicole has both personal and professional experience in the rare disease sector. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

CREATING A LEVEL PLAYING FIELD

Why investment is urgently needed to future-proof the Australian public health research workforce

Time to find a level playing field? Public health researchers are calling for a review into MRFF and NHMRC outcomes of public health research grants

Wpractice sector is responsible for saving hundreds of thousands of lives. Yet the future of our workforce is now at a tipping point.

Australia’s health system is considered one of the best in the world, yet lives in Australia are still cut short every day because of preventable illness and inequality.

Nearly half of Australians (11.6 million people) have one or more chronic condition,1 many of which will inevitably be life-altering, and our most vulnerable communities are disproportionately affected. As much as 38 per cent of this burden could be prevented through public health initiatives that address risk factors such as poor nutrition, physical inactivity, tobacco smoking and harmful alcohol use.2

Public health focuses not on finding new treatments and medications, but on preventing avoidable disease, injury, disability and death and promoting healthy and sustainable environments. In Australia, this sector has already made significant advances that have saved countless thousands lives, including a reduced road toll through promoting use of seatbelts, a reduced burden from tobacco smoking, and a world-leading response to COVID-19.3

The Australian public, as the funders of research and health portfolios, has every right to expect appropriate investment in research that creates positive impact on population health and wellbeing, and that has a strong emphasis on equity.

It is concerning, then, that public health research in Australia is chronically underfunded compared to other fields, and compared to other OECD countries. 4

Public health is a population-based and highly applied science, and many of our research proposals seek to address large-scale complex problems with social, structural, legal, and political elements, including obesity, high alcohol use, inadequate housing and climate change. However, research assessment criteria are typically based on laboratory and clinical science methods, which undervalue the potentially most useful public health proposals that seek to understand the complexities of prevention.

For example, MRFF’s measures of success call for “new

1 https://www.abs.gov.au/statistics/health/health-conditions-andrisks/health-conditions-prevalence/latest-release

2 https://vizhub.healthdata.org/gbd-results/

3 https://www.phaa.net.au/documents/item/3241

4 https://stats.oecd.org/index.aspx?DataSetCode=SHA

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

health treatments, drugs, interventions, devices and diagnostics” that should become embedded in clinical practice. It is clear that the majority of public health research applications are severely disadvantaged when assessed in this context.

As a result, in the 2021 MRFF Early to Mid-Career Researchers (EMCRs) Grant scheme, only 2 out of 55 public health grants were successful (a 3.6% success rate) by broad research area.

Similarly, the NHMRC supports research across the four pillars of health research – biomedical, clinical, public health and health services research. However, public health research is severely neglected in terms of grant success and proportion of total funding. Just considering large NHMRC schemes such as Centres of Research Excellence (CREs), Ideas, Investigators, Synergy, and Partnership grants, only 9.5% of successful applications (2.6% success rate for Ideas Grants; 11.6% for Investigator grants; 33.3% Partnership grants) were broadly prevention related, receiving just under 11% of funds for these schemes.

With no currently available plans to develop and invest in a strategy to support the public health research workforce, we find ourselves at a tipping point, especially when it comes to the career trajectories of our early and midcareer researchers (EMCRs).

The low investment in public health research is leading to significant opportunity costs in grant writing with little chance of success. It is limiting the opportunities for Australia to build the evidence that is required to inform and evaluate national and state public policy and constraining our potential to continue to be world leaders in public health research and practice. Importantly, it is also negatively affecting the wellbeing of EMCRs, who report they are under increasing and unsustainable pressure.

As members of the Collaboration for Enhanced Research Impact (CERI),5 which brings together 11 CREs with The Australian Prevention Partnership Centre, we recently consulted with senior investigators, policy makers and EMCRs on a way forward that would enable Australia to deliver the public health outcomes the community expects.

We concluded that a structural review and reform of the research funding system is badly needed. It is timely to consider this in light of the current consultation on improving alignment and collaboration between the MRFF and NHMRC.6

Along with the Australian Academy of Health and Medical Sciences (AAHMS), we support better coordination between NHMRC and MRFF. We believe that a decision about the level of integration should also be informed by the goals of research funding. During the review process, it will be important to determine where funding for public health research sits, what the funding levels should be, and agree on more appropriate measurement metrics in order to see public health research thrive in Australia.

We would like to see a full review of MRFF and NHMRC outcomes of public health research grants, similar to the review of gender disparity in the Investigator Grant scheme,7 to ensure that we clearly understand the currently low rates of funding for public health. Where high quality public health research is being submitted, it needs to be adequately reviewed and funded to the fullest extent possible. Ultimately, this information could make the case for specific streams of funding for public health research fellowships, improvements in the review process or infrastructure support funding for the large, complex partnerships required for many successful public health projects.

Such a review would also be an opportunity to learn from the public health research funding environments overseas, such as Canada’s knowledge translation chairs and fellowships, or New Zealand’s focus on short expressions of interest that proceed to a full grant application only if they are judged to have a high chance of success.

At a time when complex problems such as obesity, globalisation and climate change are all posing unprecedented threats to public health and wellbeing, a strong public health workforce has never been more crucial. It is up to all of us in the research sector to articulate a collective vision, with a strong voice and greater influence for public health research to achieve future health and prosperity for all Australians.

Authors: Alfred Deakin Professor Anna Peeters

AM is Director of the Institute for Health Transformation and Professor of Epidemiology and Equity in Public Health at Deakin University and Director of the Centre of Research Excellence in Food Retail Environments for Health (REFRESH).

Professor Simone Pettigrew is Head of Food Policy at The George Institute for Global Health and Director of the Centre of Research Excellence: Healthy Food, Healthy Planet, Healthy People.

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

Professor Helena Teede AO is Executive Director of Monash Partners Academic Health Research Translation Centre and Director of the Centre for Research Excellence in Women’s Health in Reproductive Life.

Dr Tara Boelsen-Robinson is a Research Fellow within RE-FRESH CRE.

Dr Shaan Naughton is a Research Fellow within the RE-FRESH CRE.

Dr Joshua Trigg is a public health researcher within the Centre for Research Excellence on Achieving the Tobacco Endgame.

5 https://preventioncentre.org.au/work/collaboration-for-enhanced-research-impact-ceri/

6 https://consultations.health.gov.au/health-economics-and-research-division/improving-alignment-and-coordination-mrff-mrea/

7 https://www.nhmrc.gov.au/about-us/news-centre/gender-disparities-nhmrcs-investigator-grant-scheme

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

REDEFINING THE FUTURE OF WORK THROUGH HEALTH WORKFORCE OPTIMISATION

Globally, healthcare systems are struggling. Rising costs, increasing demand, more expensive technologies, all compounded by critical staff shortages.

Scopes of practice in the health professional workforce are diverse but not used effectively. Better utilisation can deliver improved access to healthcare, new models of care and enhanced health outcomes.

Globally, healthcare systems are struggling. Rising costs, increasing demand, more expensive technologies, and the growing burden of chronic conditions are straining services and systems. These demands are compounded by critical staff shortages across all healthcare professions including doctors, nurses, and allied health professionals. The COVID-19 pandemic exacerbated these difficulties and emphasised the need to redesign and strengthen health systems to make them more resilient. At the core of strong healthcare systems is an agile and capable workforce in which the skills of each professional and the skills mix employed in service delivery are optimised to deliver the best outcomes.

As the World Health Organisation states, there is “no health without a workforce” (WHO 2013). Attraction, training, and funding are part of the solution, but some of the most exciting gains to be made are by optimising health workforce utilisation to make full use of the available skills and scopes of practice.

In Australia’s health and medical professions, scopes of practice are diverse and progressive, but they are often not used effectively. Allied health professionals such as physiotherapists, dieticians, speech pathologists, and professions such as nurses, and pharmacists are healthcare resources that are often under-utilised and could help deliver improved access to healthcare, new models of care and better health outcomes.

While there is growing evidence that alternative workforce models can improve access to high quality services for patients and promote efficiency, large-scale implementation and sustainability of new models is yet to be successfully achieved in Australia’s complex healthcare context.

There is a pressing need for more holistic approaches to health workforce design that bring together multidisciplinary expertise and health sector leadership to:

• Address what needs to change to realise health workforce optimisation at scale.

• Determine how the change can be achieved in local implementation contexts.

• Test outcomes in close partnership with who the change impacts.

Healthcare workforce research is typically undertaken by specific disciplines as relevant to their fields of practice and with a focus on generally traditional roles.

Australia’s Primary Health Care 10-year Plan 2022-2023, stresses the importance of better use of the primary health care workforce, including nurses and nurse practitioners, allied health professionals and pharmacists, working to full scope of practice and as part of multidisciplinary teams. The strategy also calls for greater leadership and cultural shifts to support effective team-based care across professions to work to full scope of practice and maintain high quality standards.

The EvolveHealth (Health Workforce Optimisation) program aims to model the trans-disciplinarity and agility that we strive to cultivate in Australia’s health workforces.

Shifting attention in policy and practice away from the traditional roles of professions and the characterisation of healthcare as doctor-led; instead, emphasizing the requirement to focus on patient-centred care needs and identifying the skills required to address them, informed by a holistic understanding of the skills available across the health-provider sector.

To achieve this, it is essential that we engage across occupations and disciplines, breaking down siloes and encourage a culture of outcomes-driven innovation in health workforce practice and planning. The EvolveHealth program aims to redefine the future of work in the Australian healthcare sector.

Moving from a stock and flow approach to planning and delivery of workforce, to a strength-based skill and capability methodology, driven by patient and service need and driven by value-based care, equity, and data. It will accelerate resilience, agility, and capability in the healthcare workforce by reimaging our utilisation of health workforce.

Author: Professor Lisa Nissen is Program Director of EvolveHealth (Health Workforce Optimisation), Centre for the Business and Economics of Health at The University of Queensland. She has been a health practitioner, leader, educator, researcher, and implementation scientist in Australia for more than 25 years. Her focus is on health services optimisation and her research has led to major health system changes, including the introduction of immunisation services by pharmacists throughout Australia, and development of national policy frameworks for prescribing by allied health and nursing professionals.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

HOW TO GROW A PRODUCTIVE RESEARCH NETWORK FOR NEXT GENERATION LEADERS

The Health in Preconception, Pregnancy and Postpartum

Early and Mid-career Researcher Collective (HiPPP

Early and mid-career researchers (EMCRs) work in an increasingly competitive environment. EMCRs develop their track record through producing high-quality publications, translating their research into meaningful real-world impact, and demonstrating strong leadership and community engagement skills.

These outcomes support future grant applications and promotion success, enabling EMCRs to continue to build their innovative research programs and make a difference in their chosen fields.

Supporting the professional development of EMCRs as the next generation of research leaders is a key objective within academic communities. Indeed, strategic capacity building is a World Health Organization priority.1 This is also a goal of HiPPP EMR-C2, founded in Australia in 2019 by Dr Briony Hill and currently Co-Chaired by Dr Hill and Dr Vanessa Shrewsbury.

Drs Hill and Shrewsbury juggle academic careers while each raising three children, and they are EMCRs on a mission. The HiPPP EMR-C now has over 250 EMCR members (defined as 5-15 years post-PhD award depending on country, institution, or organisation), higher degree research (HDR) students, clinicians, and policy makers predominately from Australia but also internationally. This Collective’s shared vision is to promote maternal, paternal, and offspring wellbeing and contribute to obesity prevention. At the 2019 HiPPP EMR-C inaugural meeting, the initial members crafted their purpose of creating opportunities for EMCRs to build capacity, form collaborations, transcend discipline- and sector-based silos, and amplify real-world research impact.3

1 Smith L, Tang KC, Nutbeam D. WHO Health Promotion Glossary: new terms. Health Promot Int. 2006;4:340–345. doi:10.1093/ heapro/dal033

2 https://hipp.org.au/networks/hippp-emr-c-international/

3 Hill B, Shrewsbury V, Bergmeier H et al. Maternal obesity prevention: The Health in Preconception, Pregnancy and Postpartum Early- and Mid-career Researcher Collective. ANZJOG. 2021;61(2):310-14. doi:10.1111/ajo.13316

EMR-C) is a successful example of strengthening capacity building for future research workforce leaders.

Dr Briony Hill

Dr Vanessa Shrewsbury

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

In March 2022, the UK and North American branches of HiPPP EMR-C were formally established and joined the Australian Collective to form HIPPP EMR-C International. It was born of the efforts of the EMR-C members coming together to leverage their collective expertise, skills, knowledge, and enthusiasm.

Among many activities, since 2020, HiPPP EMR-C has hosted three annual conferences and developed an awards program to enable knowledge sharing, networking, and recognition of excellence.

Member research showcases, stakeholder engagement opportunities, mentoring, and a collaboratively developed Statement on Welcoming Indigenous Researchers and Members are all features of the Collective’s endeavours. Having rapidly achieved significant growth and success, the HiPPP EMR-C Co-Chairs offer their insights about establishing and sustaining a productive research network to strengthen capacity building for EMCRs.

FIND AND ENGAGE WITH AN EXPERIENCED MENTOR

Finding an experienced and genuine mentor (or mentors) is key. A genuine mentor is generous with their time and resources and assists with making strategic plans and connections.4 They are responsive and provide guidance on overcoming challenges and professional growth. A good mentor is constructively honest and helps keep agendas on track. Professor Helen Skouteris, the principal mentor for the HiPPP EMR-C International, has provided unconditional and outstanding mentorship.

SHARE THE LOAD AND ACKNOWLEDGE YOUR TEAM’S EFFORT

Research shows the majority of EMCRs have responsibilities for coordinating the care of others in their personal lives.5 Caring responsibilities and periods of extended leave can impede career development both explicitly and implicitly. Sharing leadership roles can help mitigate this impact and have advantages for all.

The HiPPP EMR-C has gradually and intentionally built a large, co-ordinated leadership team, supported by a highly valued and efficient secretariat. Most leaderships roles are shared by two individuals to spread the workload and sustainably implement the Collective’s day-to-day activities while working towards longer-term goals. Serving on a leadership team provides opportunities to develop new skills, network, and build trusting relationships that can spur new research collaborations.

The time and commitment of the HiPPP EMR-C’s leadership team is highly valued and acknowledged. One way this is done is by ensuring meetings and communications are focussed, strategic and efficient. An

ECR Engagement Panel

L to R Ms Justine Salisbury, Laureate Professor Clare Collins, and Associate Professor Susie DeJersey

up-to-date website helps members receive appropriate recognition for their contributions. Furthermore, taking the small amount of time required to put kind thoughts into words is important. Gratitude in the workplace is associated with efficiency, productivity, loyalty, and success.6 The HiPPP EMR-C have a very low turnover within the leadership team, which can be attributed to its positive culture and true sense of working together for a greater purpose.

MONITOR AND CRITIQUE NETWORK PROGRESS AND EMBRACE NEW IDEAS

In less than four years, HiPPP EMR-C membership increased 12-fold. HiPPP EMR-C has continued to grow

4 Eller LS, Lev EL, Feurer A. Key components of an effective mentoring relationship: A qualitative study. Nurs Educ Today. 2014;34(5):815-820. doi: 10.1016/j.nedt.2013.07.020

5 Hartmann KE, Sundermann AC, Helton R, et al. The scope of extraprofessional caregiving challenges among early career faculty: Findings from a university medical center. Acad Med. 2018;93(11):1707-1712. doi:10.1097/ACM.0000000000002229

6 Di Fabio A, Palazzeschi L, Bucci O. Gratitude in organizations: A contribution for healthy organizational contexts. Front Psychol. 2017;8:2025. doi:10.3389/fpsyg.2017.02025

and meet member needs through strategic activities, including:

1. initiatives to attract new members;

2. a social media presence to promote members’ work and achievements; and

3. staying abreast of members’ changing needs through an annual Census that guides future planning and activities. HiPPP EMR-C is already achieving its objectives with 25% of members collaborating on publications or grants that otherwise would not have happened.

Further, HiPPP EMR-C has published 15 research evidence translation and impact summaries of members’ work, which is just one example of the initiatives generated, embraced, and actioned by the leadership team.7

7 https://hipp.org.au/research-practice-and-policy/knowledgesynthesis-hub/

HiPPP EMR-C’s success is underpinned by quality mentoring, sharing leadership responsibilities, critical reflection, and forward thinking. The HiPPP EMR-C is a flourishing example of supporting the next generation of potential research workforce leaders.

Authors: Dr Briony Hill is an Australian Research Council DECRA Fellow and Deputy Head of the Health and Social Care Unit at Monash University

Dr Vanessa Shrewsbury is a Senior Researcher in the Hunter Medical Research Institute (HMRI) Food and Nutrition Research Program and the School of Health Sciences at The University of Newcastle.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL My Twitter : @chriskere

DEVELOPING AND INSPIRING THE NEXT GENERATION OF LEADING CLINICAL RESEARCHERS IN AUSTRALIA

The Group of Eight universities recently argued that to ensure a sufficient future supply of clinician researchers in Australia around 5 per cent of medical graduates should be able to access an integrated clinician researcher training program as currently exists in the UK.

To address this gap, the Melbourne Academic Centre for Health (MACH), an NHMRC-accredited Research Translation Centre, launched MACH-Track in 2020, with the first cohort starting in 2021.

This pilot program is developing the future leaders of clinical innovation by offering an opportunity to integrate pre-PhD, PhD and initial post-PhD research training through the University of Melbourne, with completion of advanced clinical training in any of the 10 health services affiliated to MACH.

MACH-Track, which is now recruiting its fourth cohort of Fellows, expanded in 2023 to include nursing professionals and physiotherapists in addition to doctors.

It currently comprises 20 Fellows undertaking the program with the aim of securing a post-doctoral fellowship upon completion of the track – and ultimately independent academic leadership.

Professor Sir John Savill, MACH Executive Director, together with a team of expert co-directors led the development of the first-in-Australia program, which is modelled off both the structure and ethos developed over many years across successful schemes in the UK such as the Edinburgh Clinical Academic Track.

“MACH-Track is now an established program that allows promising health practitioners to integrate career development in research, including a PhD, with completion

of postgraduate specialist or generalist training and clinical career development in their health discipline,” Sir John says.

“This exciting scheme is a pilot for development of healthcare leaders that will ensure our nation has the research-active clinical innovators it needs to deliver a healthy future for all Australians.”

MACH-TRACK BENEFITS

Continuity – Trainees engage with both clinical and research training throughout the program ensuring continued engagement with the translational mission of MACH

Cohort – Appointees join a MACH-wide community of well-mentored MACH-Track colleagues and are also members of a cohort of developing leaders in their parent health service Choice – Trainees select from a wide range of potential PhD projects towards the end of the initial year of 80 per cent clinical training / 20 per cent PhD run-in, which provides “taster” mini-projects

INSPIRING THE NEXT GENERATION

MACH-Track has inspired a new generation of clinician researchers across a wide range of disciplines and specialties who will become the research translators of the future to improve health care delivery in Australia.

Current MACH-Track Fellows Dr Asha Jois and Dr Jason Ha say the program is bringing their research and clinical work together.

MACH-Track is a structured, mentored and fully-funded career development pathway for exceptional research-minded health practitioners pursuing post-registration clinical training or career development.

MACH-Track structure (Fig. 1)

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL My Twitter : @chriskere

“To me, being a clinician-researcher allows you to bridge the gap between medical practice and medical research, says Dr Jois, a Paediatric Gastroenterology Registrar based at the Royal Children’s Hospital, Melbourne.

“It facilitates the generation of ideas that will influence practice and enables the application of these ideas.

The MACH-Track program recognises the benefits of learning to do both research and clinical medicine alongside one another, allowing trainees to learn the skills to integrate both in day-today practice early on in their careers.”

Dr Ha, Ophthalmology Registrar at the Royal Victorian Eye and Ear Hospital adds: “There are a plethora of benefits from having ‘the best of both worlds’ as a clinicianscientist.

“Not only are we able to craft the paradigms of best clinical practice, but we can experience and appreciate first-hand the ways in which ground-breaking science can truly make an impact on not only the patient in front of us, but the countless others like them that follow.”

Dr Ha continues: “I look forward to using the opportunities and networks afforded through the MACH-Track dual PhD-clinical training pathway as a catalyst to a future challenging, but rewarding and fulfilling, career, where fundamental scientific discoveries can ultimately bring the greatest benefit to patients worldwide.”

SCALE UP AND EXPANSION ACROSS HEALTH PROFESSIONS

From last year, MACH-Track for the first time expanded its offering beyond doctors-in-training and is now adapted to also suit the needs of research-minded nurses, midwives and allied health professionals such as physiotherapists.

As improvement of health care requires clinician researchers from all professional backgrounds it is hoped that the MACH-Track pilot program will be expanded to offer a career track for research-minded clinicians from even more health professions – and scaled up nationally to ensure aspiring clinician researchers across Australia become the clinical innovators of the future.

For more information about MACH-Track, visit machaustralia.org/future-leaders/mach-track

For more information on the Melbourne Academic Centre for Health, visit machaustralia.org

Authors: Nick Walsh, Senior Project Officer, Melbourne Academic Centre for Health Eleanor Bonikowski, MACH-Track Coordinator, Melbourne Academic Centre for Health

2022 MACH-Track cohort

L-R: Dr Jason Ha, Dr Farrah Rodrigues, Dr Luke Fletcher, Prof Sir John Savill, Dr Asha Jois, Dr Michael Moso, (Absent: Dr Megan Ball)

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

THE CHALLENGES IN ESTABLISHING MEDTECH MANUFACTURING IN AUSTRALIA

Australia is a net importer of pharmaceuticals, medical devices, and diagnostics.

Michael Junger

While we have a strong reputation for developing technology, we don’t have a vibrant manufacturing industry to support our research, develop skills and take our ideas through to revenue.

We don’t have a culture of success in supporting medtech through to manufacture. Rather, many of our ideas and innovations move offshore to countries with existing infrastructure and where raising funds is easier. The reality is we are a huge, isolated land mass with a small population, limiting our ability to fund commercialisation and establish manufacturing.

Gardasil, a cervical cancer vaccine, is an Australian invention and the first vaccine shown to prevent cancers. It is, by revenue, the second highest grossing vaccine in the world1. Imagine if we had funded its manufacture in Australia? The domestic biotech landscape might look very different.

The challenge for companies attempting to establish manufacturing is that historically you might be alone. While we do have examples of successful medtech manufacturing, they are the exception and not the rule. Financing medtech is high cost, high risk and often not understood. Products can range from simple non-invasive technologies, to implantables and combination products involving software, drugs, vaccines and devices.

The return on investment (ROI) can easily be a runway of 10+ years. The challenge around medtech manufacturing is that you need to establish a final manufacturing process long before you can sell commercial product. To achieve regulatory approval, you need to build product to allow the collection of clinical data to support your product registration. The way you manufacture must be equivalent to your commercial process or you will be asked to justify why not. And, at the end of that journey, you’re required to submit your clinical data for the regulators to decide your fate.

As a country, we need to rethink the way we look at these significant investments in medtech infrastructure. Even once you’ve established manufacturing, there is always an inherent risk your technology may fail; your regulatory approach may not be accepted; you may be overtaken by a competing technology; or the market may just not be ready for you. However, if we invest in the infrastructure for a technology that did not reach its potential, this should not be considered a ‘fail’ but rather a ‘start’.

Building manufacturing capability closes the loop on research and encourages further innovation. It stimulates

universities and builds on sovereign skills in regulatory, quality, engineering and science. The opportunity cost of not taking the risk, is that you will never see the generational types of revenue that will allow you to build an industry. If your first medtech venture fails, you have still built infrastructure, you have still developed knowledge and you have still created a workforce that will enable manufacturing of the next technology.

The challenge is to change the mindset of investors to look beyond just one company or technology to the collective and encourage governments to support and build their own investment in the future.

I’ve had many instances in the past where I wanted to explore a process methodology or test the suitability of a machine or process. Invariably, most of the companies and their machinery and processes were in Europe or the United States with little or no representation in Australia making access difficult and expensive. Out of necessity, we developed our own home-grown solutions separated from the conventions of others. We created our own IP and added value to our businesses. We turned these challenges into opportunities.

I had a situation where a large multinational company approached us with the intention of selling us their manufacturing technology. Their perception may have been that, isolated from the major technology powers, we needed their assistance. After seeing what we had developed, they walked away with a different perception.

The bottom line is, that the challenges of medtech manufacturing are the very things that make it worthwhile. A unique ability to conquer technical, quality and regulatory hurdles will make you and your product very valuable and provide a platform of knowledge, resources and infrastructure for taking the next (and next!) technology leap easy.

Author: Michael Junger, Senior Vice President, Advanced Technology, Vaxxas

1 https://www.statista.com/statistics/314566/leading-global-vaccine-products-by-revenue/

Investing in medtech manufacturing now, will help to change the view that the Australian economy is based purely on mining and resources, and that we are more than capable of competing on the global stage.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

GRATITUDE AND HOPE INSPIRE A TRANSFORMATIONAL GIFT TO CANCER RESEARCH

As a hospital dedicated solely to treating and researching cancer, Chris O’Brien Lifehouse is often at the intersection of grief and gratitude.

Dr Eva TomaskovicCrook, Senior Research Scientist in the Arto Hardy Family Biomedical Innovation Hub, operating the bioprinter.

Often, where these meet, there is also hope, borne out of the desire to give back and to make a difference. This was the genesis of the Arto Hardy Family Biomedical Innovation Hub.

Research underpins the Chris O’Brien Lifehouse model of care, enabled by clinicians who are also scientists, searching for ground-breaking discoveries while treating patients. Playing a key role in the hospital’s research success is philanthropy. Donations are made with a clear and genuine purpose – to support research that improves cancer treatment and saves lives.

For the Arto Hardy family, making a gift to cancer research was a way to honour the memory of a loved one. The family approached this gift with determination, trust and an open heart – determination to fund research of the highest calibre that would improve the lives of others; trust in the scientists and doctors to present them with a vision that was both compelling and achievable; and willingness to believe in that vision.

For Chris O’Brien Lifehouse Director of Research, Professor Lisa Horvath, this was both a great privilege and an extraordinary opportunity. It enabled Lisa to ask the question, “What do we need to do to take the biggest strides and make the most meaningful difference?”

The answer was a new biomedical research laboratory, bridging medical science, engineering, and industry to foster and fast-track innovative biomedical research for precision cancer treatment. This would be the first of its kind in Australia – integrated within a cancer hospital, facilitating access for patients to treatment breakthroughs, and access for researchers to the clinical teams treating patients.

Inspired by this vision, the Arto Hardy family made a generous commitment to support this work for five years. The first step, and the one upon which success would hinge, was to appoint the multidisciplinary team of scientists and engineers who would lead and drive the work.

“The team was key,” Professor Horvath says. “And most key was the scientist who would develop and lead this program. We needed an outstanding biomedical engineer with a vast skill set; someone with a track record in successful research translation and commercialisation; a leader both in the field and of people; someone who could bring together all the various strands of biomedical research across Chris O’Brien Lifehouse and take them through proof-of-concept, clinical trial, and translation to patient care.”

At the helm of the Arto Hardy Family Biomedical Innovation Hub is Professor Jeremy Crook, an internationallyrecognised researcher who wears multiple hats across multiple institutions – a Professorial Fellow in Biomedical Engineering, University of Wollongong; conjoint Arto Hardy Family Chair of Biomedical Innovation, University

of Sydney; and Director of Biomedical Innovation at Chris O’Brien Lifehouse. Not only at the forefront of his field, encompassing tissue engineering, disease modelling and regenerative medicine, Professor Crook has the experience and industry know-how to move discoveries and novel concepts from the laboratory to clinical practice and through the process of commercialisation.

With the key role of Chair appointed, Jeremy and Lisa could then build the team that would provide the expertise and experience to drive each of the Hub’s research focus areas, a skill set that included cell biology, materials science, 3D printing, biotechnology, intellectual property, quality and regulatory management – just to name a few. “We needed experts across multiple disciplines,” Jeremy says. “And all with the ability to think outside the box and work within the Hub’s core purpose, which is innovation.”

The first port of call was the team already on site in the hospital’s radiobiology lab, adding expertise in cancer cell biology and materials physics. They established clinician and researcher collaborations and recruited senior and junior research scientists to add experience and support in areas such as stem cell biology, tissue engineering, bioand electro-materials, and additive manufacturing. Jeremy also engages with PhD candidates, Masters, and Honours students to work on discrete projects and harness their specialised skills.

The Arto Hardy family’s incredible gift has enabled us to build an exceptional team and a world-class pointof-care research facility at Chris O’Brien Lifehouse,” says Professor Crook.

“It means that we’re going to be able to do something with impact, something that is going to make a difference and transform how we treat cancer. Already, we are protecting IP arising from research and trademarking products intended for clinical use.”

Making a difference is at the heart of the Arto Hardy family’s gift. Gratitude is there as well, certainly from the Chris O’Brien Lifehouse team for the family’s generosity, but also from the family who sees the potential the research holds to improve the lives of many. “What a gift to be able to give,” says Lina Arto Hardy. “It is a privilege to accelerate a more hopeful future for people facing cancer.”

Authors: Leanne Hodgkiss, Development Manager at Chris O’Brien Lifehouse. Professor Jeremy Crook, Arto Hardy Family Chair of Biomedical Innovation, The University of Sydney; Director of Biomedical Innovation, Chris O’Brien Lifehouse.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

THE IMPACT THAT PHILANTHROPICBASED RESEARCH FUNDING CAN HAVE AND SOME OF THE CHALLENGES AND OPPORTUNITIES CURRENTLY FACING CLINICAL RESEARCH ACADEMICS.

Professor Andrew Mallett at the Townsville Institute of Health Research & Innovation, Townsville University Hospital.

Q: HOW HAS A DONATION OR FUNDING MADE A DIFFERENCE TO YOUR INNOVATIVE RESEARCH?

Research funding has been just absolutely critical to my research, including that from philanthropic funders such as RACP Foundation, in addition Qld Healthand national funders such as NHMRC, MRFF-.

It has enabled myself and my collaborators’ to focus our thoughts and plans into specific and tangible propositions, which is immensely helpful for developing successful grant applications, as well as learning from our unsuccessful grant applications.

The resourcing that I have attained has enabled me to bring my research ideas to life. Now, I am leading a clinical trial (never thought I’d be doing that!), part of exciting wet and dry lab research, undertaking translational genomic research, and understanding the epidemiology and implementation of genomics into everyday practice.

Q: HOW ARE YOU PLANNING FOR YOUR FUTURE WORKFORCE.

I envisage a future workforce that directly supports the development of clinician-researchers of all varieties.

I do this by helping to identify those who are interested in research, and if their interest might grow and develop, which it very often does!

I also help to provide opportunity for those who hadn’t previously thought that they wanted to do research. We provide an opportunity to do research, so that they can “dip their toe in the water and give it a go”. This is just so critical! “The key to getting ahead is to get started”.

I also provide mentorship, supervision, support, and encouragement to developing clinician-researchers across the career spectrum. From those who are students in their primary degrees, considering doing Honours or ad-hoc projects, to junior medical and non-medical clinicians, right the way through to specialty trainees and mid-senior career clinicians. I actively support interest in research for those around me.

I get joy from seeing those I supervise, work with, and mentor to grow and succeed. There is just nothing quite like it!

Q: WHAT CHALLENGES AND OPPORTUNITIES WILL HEALTH AND MEDICAL RESEARCH FACE IN THE FUTURE?

In healthcare we are always seeking to do more, better and with the same or functionally restricted resources. Achieving these efficiency and productivity dividends to provide health benefits to patients and the community is THE challenge for Health and Medical Research in the future.

So, what does this mean in Australia? I think that it means ensuring a strong and balanced portfolio of research across the country, which is responsive to patient and community needs whilst also being diversified enough to ensure that we are generating new knowledge and discovery whilst enabling the translation of those discoveries.

Identifying sustainable ways for those researcher career pathways to thrive and be supported without undue threat or excessive anxiety is going to be key to generating creativity, innovation, productivity and positive growth of direct and indirect research.

A major opportunity will be collaboration. We are also now operating in a world where our geography matters less than ever before in terms of limiting or restricting collaboration. I collaborate effectively and substantially with colleagues in North America, the UK and Europe, very substantially supported by virtual meeting platforms and a plethora of handy online time zone convertors! Also, collaboration means partnering with patients, consumers as well as diverse clinicians as well as industry and academic partners. The more we can effectively be supported to do this and achieve vibrant collaborative groups and consortia, the more robust, responsive and resilient our research programs are likely to become.

Q: HOW ARE YOU PLANNING TO OVERCOME THESE OBSTACLES?

I will continue to train, mentor and support as many clinician-researchers as I can. The future will be transformed by them, and the degree to which we can transform that future depends upon having enough clinician-researchers to do it.

Australian and Aotearoa-New Zealand working together with our innovation and ingenuity in health and medical research is key. I’m thinking about the big ideas that bring together new and enlarged groups of colleagues, which means embracing meeting new clinicians and researchers both in Australia and overseas. I’m trying (and mostly failing) to also dedicate time to thinking about the big challenges, what might be done and what new research questions and approaches could be possible. It is an exciting time!

Being in a regional area with strong urban and rural connections is just amazing. From this vantage point, I can get perspective on a breadth of issues and opportunities that I don’t think I could have seen before. Working together with collaborators across and breaking these traditional geographical divides is both very rewarding but also a tangible way to unlock new research capacity and impact.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

DIGITAL INTERVENTIONS OFFER A COST-SAVING APPROACH IN PROMOTING LONG-TERM RECOVERY IN FIRST EPISODE PSYCHOSIS PATIENTS

and educational attainment – core components of social recovery. Just recently, the intervention was also evaluated for its cost-effectiveness, showing that it provides good value for money and results in large net budget savings to the Australian healthcare system.

Cost-effectiveness evidence is crucial in guiding resource allocation decisions in health care, where resources are limited.

Psychotic disorders, which include conditions such as schizophrenia and bipolar disorder with psychotic features, impose a considerable burden on individuals affected by these disorders, as well as their families and society as a whole.

Psychosis involves a loss of contact with reality, leading to symptoms such as hallucinations, delusions, disorganized thinking, and impaired social functioning.

The early course of psychosis is characterized by recurrent relapses; up to 80% of first episode psychosis patients will experience a psychotic relapse within 5 years of remission from the initial episode. A relapse refers to the re-emergence of psychotic symptoms after a period of remission or improvement. It means that despite some initial recovery, individuals with psychosis are at a high risk of experiencing a relapse, which can significantly disrupt their lives.

Digital interventions have potential applications in promoting long-term recovery and improving outcomes in first episode psychosis patients. A novel online social therapy, called MOST, has recently been developed by a team of leading youth mental health experts and by young people with lived experience of mental ill-health at Orygen. MOST integrates peer-to-peer online social networking with theory-driven, evidence-informed therapeutic interventions targeting social functioning, vocational recovery and relapse prevention.

It is supported by peer workers, clinicians, and vocational professionals, with the aim of supporting young people with first episode psychosis following two years of specialised support.

As part of the Horyzons project, a randomised controlled trial of 170 young people aged 16-27 years following discharge from first episode psychosis services demonstrated that the digital intervention MOST was effective in improving vocational recovery or job prospects

By considering cost-effectiveness evidence, decisionmakers can prioritize interventions that provide good value by comparing the costs of implementing an intervention with the health benefits it produces, thereby prioritizing interventions with the greatest potential to improve health outcomes while considering the economic impact of those decisions.

The economic evaluation of the MOST intervention encompassed two evaluation frameworks: a costeffectiveness analysis, which evaluated outcomes by assessing changes in the social functioning of study participants, and a cost-utility analysis that specifically examined quality-adjusted life years (QALYs).

QALYs represent a way to measure and quantify both the length of life and the quality of life experienced by individuals and is a useful metric in health economics to compare cost-effectiveness evidence across disease areas and population groups.

Using data from the Horysons randomised controlled trial, the MOST intervention was compared to treatment as usual in terms of costs and benefits. Costs were measured from a healthcare sector perspective and a broader societal perspective, which also included productivity impacts and non-health services, such as vocational services.

The analysis revealed that over the 18-month study period, the cost of delivering the MOST intervention to study participants was estimated at $2,004 per participant. While this represents a significant cost, the analysis also showed that there were important cost-savings observed in the intervention arm compared with the control group, especially for emergency department presentations, hospital admissions and use of specialised mental health clinical services.

Cost-effectiveness findings of a novel online social therapy to maintain treatment effects in young people with first episode psychosis after discharge from early intervention services.

The differences in total costs between the intervention and the control group were estimated at $4,790 from a healthcare sector perspective and $5,131 from a societal perspective, showing that MOST was cost saving. Extrapolated to all eligible patients with psychosis aged 16-25 years in Australia, the expected net budget savings were estimated at $6.3 million under the healthcare perspective and $7.5 million under the societal perspective in year one ($788,164 and $939,312 in subsequent years, respectively).

The results also showed that the online intervention resulted in small improvements in social functioning but yielded fewer QALYs. However, there was a significant uncertainty observed in the outcome data that reflected the heterogeneity of user engagement with the online intervention.

When exploring the costs and outcomes by level of user engagement, it was shown that young people who engaged more with the platform reported better outcomes and lower costs. Therefore, the more young people used the platform, the more cost-effective it was.

Overall, the results indicate that Horyzons offers a cost-saving and likely a cost-effective approach for improving social functioning in young people with first episode psychosis after they are discharged from specialised services.

These findings have important implications for delivering first episode psychosis services in Australia and internationally, highlighting the value of online interventions for young people experiencing ill-mental health. Improving long-term recovery is a critical global research and clinical priority in psychosis treatment and across youth mental health. The MOST intervention provides a novel, promising, engaging, and cost-effective intervention to do so.

Authors: Dr Lidia Engel, Senior Research Fellow, Monash University Health Economics Group, Monash University. Prof Cathy Mihalopoulos, Head of the Monash University Health Economics Group, Monash University. Prof Mario AlvarezJimenez, Chief of Orygen Digital, Orygen.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

BEYOND BORDERS:

THE GAME-CHANGING PROMISE OF A GLOBAL PATIENT REGISTRY IN SHAPING RARE DISEASE RESEARCH

A Multilingual Registry enabling participation, empowering research, and enhancing understanding for Angelman syndrome. A global and multilingual patient registry is essential for advancing research and gaining a better understanding of rare diseases. Angelman syndrome (AS) is a rare neurogenetic disorder affecting around 500,000 individuals worldwide.

Caused by a loss of function in the UBE3A gene on the maternal 15th chromosome, AS often manifests in individuals with impaired motor skills, balance issues, debilitating seizures, limited mobility, and disrupted sleep patterns. Individuals with AS require constant care and cannot live independently. They exhibit distinct behavioural traits, such as a joyful disposition, frequent laughter, smiles, and excitability.

Traditionally, rare disease data has been collected at specialty clinics, which have played a crucial role in gathering information. Whilst clinician entered data remains critical to understanding rare disease populations, the limited prevalence of rare diseases and concentrated clinics in specific regions pose challenges in obtaining large scale, comprehensive and diverse data.

Global disease registries are vital for capturing standardised patient information and enabling patients and their families to provide data in a safe, accessible, and engaging manner. The Global Angelman Syndrome Registry (GASR) is an exemplary web-based, multilingual platform that allows caregivers worldwide to take part. The registry collects data through online modules, including baseline and longitudinal assessments.

The Trial-Ready Registry (TRRF) Framework, an opensource infrastructure supporting GASR, evolved from the Rare Disease Registry Framework developed by the Centre for Comparative Genomics at Murdoch University. It represents an adaptation of the original framework to meet the unique demands of conducting clinical trials for rare diseases. The open-source framework offers transparency, collaboration, long-term sustainability, and fosters innovation and knowledge sharing. This framework enables the sharing of development efforts and features across multiple patient registries, resulting in enhanced cost-effectiveness.

Rare disease registries face challenges such as low participation rates (relative to expected disease prevalence), achieving full completion rates, changing data privacy regulations, and the emergence of new studies leading to additional data silos. GASR adopts an ongoing comprehensive approach to mitigate and address these challenges including raising awareness, enhancing accessibility, reducing participant burden, ensuring data privacy compliance, fostering collaboration, and engaging with patient communities and advocacy groups.

Language barriers often hinder participation in global digital health platforms, as English is typically the default language. To overcome this, GASR implemented crowdsourcing and machine translation tools, making the

platform accessible in Spanish, Traditional Chinese, Italian, and Hindi. This approach significantly increased enrolments and expanded data contributions from various regions worldwide.

Collaboration with the Rare Disease Cures AcceleratorData and Analytics Platform (RDCA-DAP®) further enhances GASR’s impact. Through this collaboration, GASR contributes deidentified data to a larger cohort of rare diseases, accelerating research and facilitating the development of treatments and cures. By pooling resources and data from different rare diseases, this partnership drives advancements in rare disease therapeutics.

The GASR has many opportunities for growth, including expanding translations to reach a wider audience and integrating clinical trial and clinician-entered data from other Angelman syndrome studies. The comprehensive approach employed by the GASR creates opportunities for utilising patient data as controls in future studies and trials. By collecting and analysing a wide range of patient data, the registry can potentially contribute to the development of control groups in future research and clinical trials.

In summary, the GASR is an innovative platform that revolutionises data collection and analysis for AS. It serves as a global, multilingual patient registry that empowers caregivers to contribute valuable information in a secure and user-friendly manner. By leveraging an open-source framework, GASR not only facilitates collaboration, continuous development, and innovation but also ensures that data is freely and openly available for anyone wishing to advance research and understanding in Angelman syndrome. Through comprehensive approaches including translations, collaborations, and data integration, the registry serves as an exemplar model, significantly contributing to our knowledge of rare diseases, including their causes, disease trajectory, and treatment.

Further information – www.angelmanregistry.info

Author: Meagan Cross is the founder, and Chief Executive Officer of the Foundation for Angelman Syndrome Therapeutics Australia. With personal experience as a parent of a child diagnosed with Angelman syndrome, she passionately advocated for creating a global webbased platform.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

NATIONAL ASTHMA RESEARCH AGENDA:

WHAT QUESTIONS DO END-USERS WANT ANSWERED?

The NAS identified research as a key enabler of progress in Australia but emphasised there is a lack of overarching strategic direction.

Thus, the primary focus was to develop a research agenda to understand and support investment in the areas that are most important to end users of asthma research. End users of asthma research include people with asthma, carers, healthcare professionals and policy makers.

NATIONAL ASTHMA RESEARCH AGENDA: WHAT QUESTIONS DO END-USERS WANT ANSWERED?

In Australia, one in nine people are living with asthma, and it has a major impact on individuals, their carers and the health system.2,3 Asthma is responsible for more than 30,000 hospitalizations2 and approximately 400 deaths each year in Australia.2

The 2018 National Asthma Strategy (NAS) highlighted the need for a National Asthma Research Agenda to help “focus, coordinate and translate quality health research into policy and practice.”1 The NAS identified research as a key enabler of progress in Australia but emphasised there is a lack of overarching strategic direction.1

The National Asthma Research Agenda project was established, which aimed to adopt a model developed and implemented internationally, known as the James Lind Alliance (JLA) priority setting partnership model.4 This model embeds the research ‘end-user’ at its core and in doing so arrives at priorities most important to them,

1 https://asthma.org.au/wp-content/uploads/About_Us/NationalAsthma-Strategy-2018.pdf

2 Australian Bureau of Statistics. A National Health Survey 2020–2021: asthma. Canberra:ABS2022. Available from https:// www.abs.gov.au/statistics/health/health-conditions-and-risks/ asthma/2020-21

3 Australian Institute of Health and Welfare. Australian Burden of Disease Study: impact and causes of illness and death in Australia 2018. Australian Burden of Disease Study Series no. 23. Cat. no. BOD 29. Canberra: AIHW; 2021.

4 https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps. htm

The 2018 National Asthma Strategy (NAS) highlighted the need for a National Asthma Research Agenda to help “focus, coordinate and translate quality health research into policy and practice.”1

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

independent of the views, preferences and influences of the research sector. Asthma Australia proposes this agenda to be the focus of asthma research investment, collaboration, and translation across Australia.

“We want to know what really matters to people who live with asthma, who care for someone with asthma, or who treat people with asthma”, National Asthma Research Agenda executive committee.

SO WHAT DID THIS INVOLVE?

The research priority setting exercise was a partnershipbased process involving end-users at each stage. An online survey was sent to Asthma Australia’s consumer and health professional databases, and shared by peak professional societies and organisations across Australia through email and social media. The survey included demographic questions and two free-text questions:

• What would you like to see answered by research to improve living with asthma on a day-to-day basis?

• Are there any other issues you’d like to see answered by research, in addition to the above?

593 people responded to the survey which included people with asthma or a personal connection to somebody with asthma (91%), and healthcare professionals (HCP) or policy makers (9%).

This outcome was a strength of the survey, which ensured a proportionate representation of HCPs in this process, compared with the ratio of HCPs to people with asthma in Australia.

The results of the survey were thematically analysed, resulting in a shortlist of 18 themes which were then taken to a series of 3 online consensus workshops. These workshops were mostly made up of people with asthma or their carers, from a range of backgrounds, as well as a significant number of HCPs or policy makers (approx. 30%). The purpose of these workshops was to gain consensus on the priority importance of the 18 themes.

The workshops were facilitated by a skilled advisor with experience in using a modified JLA process. She guided

the sessions and prioritisation based on an adapted nominal group technique (NGT) approach, which is a wellestablished and well-documented approach to decisionmaking in community-based action research. Each workshop resulted in a prioritised list. These lists were then collated and averaged, resulting in a final ranked priority list which reflected and balanced the weight of priorities between the three groups. This process was completed independently by three members of the research team to confirm each resulted in the same outcomes.

AUSTRALIA’S NATIONAL ASTHMA RESEARCH AGENDA:

Figure 1 The top key research themes as prioritised in the priority setting workshops with the highest frequency research questions within themes.

Our results revealed broad themes reflecting a range of existing challenges faced by people with asthma, their carers and the insights and challenges faced by the people who care for them. Whilst they appear broad and arguably well researched when presented as themes, the questions posed

within the themes point to the perseverance of fundamental issues faced by people with asthma and reinforce the evidence-practice gap highlighted in the 2018 National Asthma Strategy.1 Programs of research addressing these priorities have the potential to reduce the burden of asthma on the people with the disease, which is significant.

WHAT DOES THIS MEAN FOR RESEARCHERS?

Asthma Australia are working with partners, collaborators, and the broader stakeholder community to embed this set of priorities front and centre in institutional planning around asthma-related research. People with asthma are waiting for Asthma Australia to join forces with the research sector to deliver a targeted program of research activities that lead to tangible policy and practice outcomes against these priorities.

Author: Anthony Flynn, Senior Manager Research and Evaluation, Asthma Australia.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL My Twitter : @chriskere

AN INSIDER VIEW:

LIVED-EXPERIENCE RESEARCHERS IN THE HEALTH AND MEDICAL RESEARCH WORKFORCE

THE ALIVE NATIONAL CENTRE FOR MENTAL HEALTH RESEARCH TRANSLATION

Australia has had research policy support for the active involvement of health consumers and the community in research for over two decades, as reflected in the Statement on Consumer and Community Involvement in Health and Medical Research. This recognises and centres the importance of a lived experience of a health condition in research and translation. Over that time, major funding schemes have changed their grant application criteria to require some form of active consumer and carer involvement as part of methodological rigour.

As research practice has evolved in response to this shift, a new health and medical research workforce role has emerged, the Lived-Experience Researcher. LivedExperience Researchers use our own experience of health conditions, system access and ongoing impacts of experiences such as trauma and violence, alongside learned knowledge.

These roles are the fullest form of centring of lived experience as critical research expertise, shifting control of topics, design, conduct and translation and increasing the likelihood of relevant research with impact. Embedded Lived-Experience Researcher roles also create structures for other forms of consumer and community involvement, by bridging lived and learned knowledge communities.

Research careers do, however, carry some unique challenges for Lived-Experience Researchers. Motivation and confidence can be impacted by scarce opportunities to apply for funding, due to alternative career trajectories where traditional research outputs are not in focus.

The highly competitive and hierarchical nature of health and medical research is also fertile ground for stigma and discrimination. Open identification is central to LivedExperience Researcher roles, and functions to combat the

stigma associated with our experiences. Paradoxically, this automatic disclosure often increases the potential for stigmatising attitudes and discriminatory practices, undermining perceptions of competence and affecting career paths.

Coupled with other common research workforce challenges such as high levels of job insecurity, methodological and discipline silos, hierarchies of university-versus community-based research, and often isolated working conditions, there is a great need for a dedicated focus on Lived-Experience Researcher workforce capacity-building.

THE ALIVE NATIONAL CENTRE FOR MENTAL HEALTH RESEARCH TRANSLATION LIVED-EXPERIENCE RESEARCH COLLECTIVE

The ALIVE National Centre for Mental Health Research Translation was created in 2021, funded by a $10 million National Health and Medical Research Council Special Initiative in Mental Health. Investigators span 17 Australian universities, across health and medical disciplines, social science, the creative arts, humanities, health services research, primary care and community settings, Aboriginal and Torres Strait Islander research and health economics, with founding partner organisations across mental health service delivery, clinical innovation in health care, mental health policy advocacy and translational research.

Lived expertise is one of the ALIVE National Centre core values, demonstrated across our operations. We use “lived experience” to refer both to people with their own experience of mental ill-health and carer, family and kinship group members.

Our governance committees are co-chaired by people with lived-experience, and we operate an embedded model of lived-experience in research). The model places lived-experience at the heart of the National Centre and

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

creates the scaffolding necessary to meet our goal of integrated lived-experience knowledge and expertise in mental health research translation and systems change.

Central to our embedded model is the Lived-Experience Research Collective, a dedicated research capacitybuilding initiative, focused on tailored training, mentorship, and career pathways.

We apply an inclusive, community-led approach to lived-experience, allowing people and communities to self-identify and define lived-experience to ensure a shared understanding. Currently 177 members strong, our Collective includes people in research roles across universities and community and/ or government sectors.

The Collective aims to address the major challenges facing LivedExperience Researchers. Members participate in bi-monthly gatherings for peer connection, mentoring, collaboration, and career development.

We also offer intensive research skills-training, through short courses, paid research roles to collaborate on Centre projects, and an exchange program that matches Lived-Experience Researchers with traditional academic researchers for mutual learning.

The Collective leads an ALIVE National Centre flagship project, The Long Conversation, which is entirely designed and led by Lived-Experience Researchers. It aims to establish the who, what, where and how of livedexperience mental health research in Australia and will inform our development of a National Strategy for LivedExperience in Mental Health Research.

TOWARDS A NATIONAL STRATEGY FOR LIVED-EXPERIENCE IN MENTAL HEALTH RESEARCH

Literature indicates that existing initiatives that have advanced Lived-Experience in mental health research within universities are scarce and largely isolated. Given the diverse roots of Lived-Experience Researcher identities, and gaps in capacity-building, for growth and continuity there is a need for a National Strategy for LivedExperience in Mental Health Research.

The Strategy will provide critical lived-experience guidance to the health and medical research sector more broadly on how these roles are defined and not defined in the literature, the impacts on research and translation, and guidance to grow and support the emerging LivedExperience Researcher workforce to progress effective centring of consumer and community perspectives. Further information: https://alivenetwork.com.au/

Author: Michelle Banfield, Co-Director and Lived-Experience Research Lead Victoria J Palmer, Co-Director and Co-Design Living Labs Lead

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere

THE LAST WORD

ENABLING AN INNOVATIVE WORKFORCE FOR RESEARCH SUCCESS

and researchers, who actively participate in the day-to-day delivery of care, as well as working on research to inform better outcomes for patients.

As a leading healthcare provider, Calvary recognises that to ensure ongoing research activities we must have an organisational strategy that attracts, retains and supports innovation among our workforce.

We need to be competitive in securing researchers to our team first, and then putting in place measures that provides the researcher and their undertakings the right technical and infrastructure supports, as well as and the competitive advantage of having access to geographic and demographic expanse on a national scale.

Calvary provides healthcare to about 300,000 people a year across the country from birth to end of life and everything in between, through hospitals, community and aged care services, and virtual care. Through our Mission, Calvary has more than 18,000 people delivering quality, responsive and compassionate care and this includes a well-recognised research workforce that contributes to our strong reputation.

Improvements in healthcare are underpinned by research, and the patients, residents and clients of Calvary facilities benefit from the interwoven relationships of our services

At some of our sites, research and innovation is already contributing to major changes in healthcare delivery. This includes oncology and haematology, neurodegenerative diseases, and in palliative and end-of-life care. These health studies involve a mix of our Calvary medical, nursing, allied health staff and volunteers, and are often undertaken in partnership with education institutions, research organisations and philanthropic groups from our facilities with the participation of our patients, clients and residents. We have achieved some outstanding results, often with many long-term partners.

But we know we can still do more and do it better, and beyond accessing funding and grants for the research itself. Calvary is looking at how it can make changes to its workforce strategy to support the ongoing development and growth of innovative healthcare exploration.

Research is not simply a result of driven individuals looking to do things better, they need to be enabled by those they work with to find ways to ensure the right supports are in place. The benefits of Calvary being a national organisation is that we can provide our workforce portability. For researchers, the opportunity to apply and share their research across different sites can not only help to widen and improve their data collection, but it ultimately assists with generating wider recognition of their

Thomas A Edison once said:

“There’s a way to do it better –find it”.

research. And we’re currently looking at ways to enhance our policies in areas including relocation guidelines and key worker accommodation.

Being part of an organisation with touch-points in five states and two territories across Australia, also means we can use our digital capabilities to help researchers and their teams collaborate across multiple sites and truly gain the benefits of national translational research and healthcare. This includes creating in-person and on-line opportunities for our people across various disciplines and working across different streams to come together and promote better health outcomes through the application of our research.

Calvary also recognises the importance of industry collaboration in meeting the growing needs for quality healthcare. Our relationships with higher education institutions are important for our existing and future workforce, healthcare outcomes and research. We already have Memorandums of Understanding with Australian Catholic University, Australian National University, University of Sydney and University of Canberra.

These partnerships support our vision to harness and grow an innovative workforce to pursue models of care and research outcomes that meet the emerging health and social needs of the communities we serve. The universities offer us the ability to explore opportunities to upskill Calvary’s existing team members with tailored professional development, while at the same time engaging our workforce of the future through clinical placements and collaboration in research, translation and implementation science.

We already know many of our people at Calvary are interested in being research-active in the workplace, and we are working hard to develop the right national strategies to enable that participation and encourage innovative engagement to benefit those we care for across all of our facilities. We also know that with streamlined national systems, we can extend access to the expertise

of our already outstanding research workforce and create new opportunities to an interested and future innovative workforce, and contribute to even greater research success from across our organisation and with our strategic partners.

All healthcare providers want to achieve improved outcomes for their patients, and it is absolutely critical that we enable our nurses, doctors, allied health professionals, aged care workers, data analysts and health scientists to find better ways to carry out research to achieve the necessary results at the bedside.

For more information, visit www.calvarycare.org.au.

Author: Kerryn Vine-Camp, Calvary National Director People & Corporate Services.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere