SHINING A LIGHT ON MENOPAUSE SHINING A LIGHT ON MENOPAUSE
SPIDER VENOM
SPIDER VENOM
HEART DRUG SET FOR CLINICAL TRIALS
HEART DRUG SET FOR CLINICAL TRIALS
The official research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health,
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IN THIS ISSUE:
In-SPHERE, published three times a year, is the official research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health Education Research and Enterprise (SPHERE).
In-SPHERE showcases the work of our Clinical Themes and Platforms as well as our Partner Organisations.
Executive Director:
Professor Christopher White
Operations Manager: Elizabeth Henness
Editorial Committee
Linda Music (Editor/Chief Writer)
Bianca Badolato
Mehna Alacozy (Sub-Editor)
Sophie Gates
Brigitte Gerstl
Maf Hasan
Stephanie Macmillan
Natalie Walsh
Professor Chris White
Much like choosing a car in 2025, where you have options ranging from traditional combustion engines to fully electric vehicles or hybrid models, navigating the landscape of medical research involves selecting the right ‘engine’ for the job.
Over a decade ago, we conducted an initial review of the medical research landscape, laying the groundwork for our ongoing health-academic partnership. Just as cars evolve with new technologies, SPHERE is now peering under the hood once again. It’s time to assess our research priorities— what needs fine-tuning, what requires a fresh approach, and how we can navigate the fast-paced changes ahead.
The earlier external review by Thomas Barlow emphasised the need for greater collaboration across SPHERE Themes and Platforms to achieve our strategic objectives. Our most recent Big Ideas Health Service Research Grants (HSRG) brought together 13 applications involving 198 researchers including 13 as consumers with community engagement (CCE) and 57 EMCR (44 as CIs, four as CIA) from 12 SPHERE members with engagement from new partners in NSWH, other LHDs, academic institutions and Industry. $450K in seed funding has been awarded to three projects integrating work in mental health, physical activity,
A word from our Executive Director
virtual health solutions and the built environment with Industry partners. Updates as these initiatives report their progress will undoubtedly feature in future issues of In-SPHERE
Our collaborations extend beyond this bid building activity. Key initiatives highlighted in this issue emphasise CCE and Technology Enabled Collaborations in Health (TECH) including Standing Tall, and amplification of the seminal data and discovery driven work from PIPEMC and VCCRI. Transformational leadership in Omics by David Thomas supports our research impact by expanding personalised medicine clinics locally and SPHERE Women’s Health led submissions to the parliamentary inquiry into menopause that contributed to evidence-based policy changes, including PBS reimbursement and extended GP consultation times.
SPHERE must remain agile amid a shifting landscape and dynamics for change. Health Research & Innovation Precincts, largely in their planning stage at inception have been built adding complexity but potentially replicating some of the collaborations supported by SPHERE, at least locally. The NHMRC’s initial and emerging role in supporting RTCs nationally has fostered organisational collaboration, reduced competition and leveraged national expertise. The skilled leadership from Professor John
Prins (HTQ) has been instrumental in securing increased NHMRC funding for HSR, with a focus on CCE and EMCR involvement. Unfortunately, the objectives of their most recent scheme did not align with projects led by our institutional investigators, so the Big Ideas model as a template for HSRG success will need to be reviewed.
Looking ahead as we chart a new strategy that will take us to 2029, we must stay focused on Why, What and How.
The “Why” remains unchanged— overcoming barriers is best achieved collectively. The “What” is what are we recalibrating based on past success, emerging opportunities and new priorities. The “How” depends on assessing the resources available, the intersecting priorities of our partners and confirming the new approaches that will be needed to advance our mission.
SPHERE can either remain the best last version of an RTC conceived and designed in a previous decade, or the first new RTC of its generation notwithstanding the risk “buying an EV” might incur. A hybrid solution as we merge the best of the past with our future direction, ideally using both at the relevant time might be the most likely immediate outcome as we navigate this challenge.
Transforming falls prevention with an app
A decade-long research journey has led to the creation of an innovative app, StandingTall, designed to reduce fall-related injuries. By Linda Music
Adecade-long research journey has culminated in the creation of StandingTall – an innovative app designed to reduce fall-related injuries among older Australians. Supported by SPHERE’s Age and Ageing Clinical Theme and the Innovation and Industry Platform, StandingTall was developed through extensive co-design with older adults.
Bridging the Gap Between Evidence and Practice
Balance-challenging exercises are the single most effective strategy to prevent falls. While research clearly
outlines how balance exercises can drastically reduce fall risks, widespread adoption remains challenging. Barriers such as limited access to physiotherapists, insufficient exercise classes, and personal preferences against group sessions often prevent older people from engaging in regular exercise. Recognising these challenges, Professor Kim Delbaere and her team at NeuRA, set out to bridge the gap between evidence and action.
“We know what works. The issue is making it easy and accessible for people to do it,” she explains.
“We don’t have the workforce for widespread supervised programs, so we explored how technology could provide a scalable, user-friendly solution.”
Co-Designing With the Community
From the outset, older adults were at the heart of the app’s development. Their input shaped every aspect—from user-friendly navigation and clear fonts to high-contrast colours that accommodate age-related vision changes. Beyond improved mobility and balance, participants also sought
cognitive stimulation, reflecting growing awareness of dementia and cognitive decline.
Evidence-Based Success
The app’s effectiveness was validated through two clinical trials. The first, involving a low-risk group aged 70 and older, showed a 20% reduction in fall-related injuries over two years. At the end of the two-year trial, 52% of participants were still using the app at the recommended two hours per week without any ongoing support—a retention rate rarely seen in exercise programs.
Encouraged by these results, the team adapted the app for a higher-risk group—those aged 65 and older with recent falls or significant concerns about falling. This trial, conducted during the COVID-19 pandemic, required a shift to telehealth delivery. Despite these challenges, the approach was feasible and was able to confirm findings of the previous trial in relation to reduction of fall-related injuries.
The Next Chapter: Scaling Up for Impact
To date, StandingTall has informed virtual care at over 85 health services across Australia and the UK through three implementation trials and five ongoing clinical trials. Over 300 clinicians have been trained to
implement it into practice, enhancing digital health integration in aged care.
Until now, access to the Standing Tall app was limited to participants involved in clinical trials or research projects. Thanks to an NHMRC Development Grant, the app has now been refined into a streamlined, commercial-ready product. It will be available on iOS and Google Play App Store in April. Looking ahead, the vision is to work with health care providers and government agencies, to make the app accessible to all Australians seeking to improve their balance. Given that balance begins to decline from the age of 40–45, and the risk of falling increases significantly from age 65, the team hopes StandingTall will become a widely used tool to help older adults stay active and independent.
New directions
Building on its success in fall prevention, there is growing interest in expanding the app’s reach beyond this initial purpose. Prof Delbaere and her team are now focused on adapting the app for outpatient rehabilitation, supported by an MRFF-funded grant
later this year. This new direction aims to assist people aged 50 and over recovering from an acute health event such as a fracture, stroke, or joint replacement. By addressing common barriers to accessing outpatient rehabilitation - like transportation challenges, scheduling delays and limited local availability - StandingTall’s personalised exercise programs can deliver much-needed rehabilitation support directly to patients at home. Its adaptable algorithms, originally developed to improve balance, have been expanded to include a broader range of exercises addressing heart health and strength, coupled with newly developed behavioural change strategies to boost recovery motivation.
As the need for accessible, effective fall prevention and rehabilitation solutions continues to grow, StandingTall stands out as a vital tool for older adults. With proven results across multiple clinical trials, high user acceptance, and adaptability for broader health applications, it is wellpositioned to make a lasting impact on the health and independence of Australia’s ageing population.
Professor Kim Delbaere
Shining a light on Peri-/ menopause in Australia
For many women, the journey through peri-/menopause can be a challenging transition, yet it remains one of the most misunderstood and under-discussed health experiences. By
Linda Music
Despite its inevitability, peri-/ menopause remains a hidden condition, shrouded in stigma, embarrassment, and lack of public awareness. This is even though its impacts—ranging from depression and executive function issues to increased risks of lifelong diseases like cardiac conditions, diabetes, osteoporosis, and dementia—affect millions of lives.
VITAL, the Virtual registry of peri-/ menopause in Australia, is the world’s first community-targeted registry designed to address these challenges head-on. Launched in late 2023, VITAL is a groundbreaking initiative led by Associate Professor Erin Morton of Bespoke Clinical Research, and member of SPHERE’s Clinical Trials & Data Steering Committee.
Suffering perimeno symptoms in her early 40s, Erin was surprised that even as a medical researcher of 20 years, she struggled to find relevant information and care.
“My professional career conducting national registries and leading
international trials to improve health outcomes and change patient experiences meant that I knew we could do better. The decades’ long history of ignoring women’s health and stigma associated with menopause, determined that broad and openminded data collection was where we needed to start,” she explains.
Community driven design
What sets VITAL apart is its community-driven co-design. Unlike traditional registries, VITAL allows participants—not just clinicians and researchers—to decide what information is collected, how detailed it should be, and how it can be used. Through universal feedback opportunities, the community becomes the “voice” of VITAL, defining what peri-/menopause truly means, its hidden impacts, and the changes needed in research, education, and policy.
“Any medical research should be concentrating on what matters most
to those affected by it, for example, clinicians or researchers may be fascinated by improving pain levels in those with arthritis, but if patients care more about lack of function and mobility then that’s an important distinction. Menopause has such a range of symptoms, immediate impacts on life, and potential longterm health outcomes, multiplied by our diversity of life in Australia both culturally and geographically, that it’s incredibly important we start by concentrating on the aspects of most
Associate Professor Erin Morton
interest to all Australians, not just those most easily invited into clinical trials or limited non-anonymous surveys.”
VITAL making an impact
Since its inception, VITAL has achieved remarkable milestones. Over 1,500 participants from every state and territory in Australia have joined the registry. More than 5,000 comments of lived experience have been shared by the peri-/menopause community, including and as well as researchers, clinicians, workplace colleagues, and policymakers. A staggering 700,000 data points have been collected to date. VITAL has also earned recognition at major conferences, including the 2024 World Congress on Menopause, with presentations on knowledge translation, work impact, and diverse
lived experiences in Australia and New Zealand.
The Vision for Change
VITAL aims to translate its extensive data into real-world outcomes, driving policy and practice changes that improve health outcomes for those experiencing peri-/menopause. It leverages cutting-edge virtual data infrastructure, a consortium of experts, and a nationwide geographic footprint to ensure open, accessible, and confidential participation.
“VITAL is already enabling us to examine early trends in Australian data even now, for example, is clinical/ research expertise actually making a difference for patients in the areas they care about, how is employment impacted and how might that vary in different situations, or for those undergoing surgical menopause
under 50-years old, are they being prescribed MHT in compliance with clinical guideline recommendations, and if not why?”
“By providing a platform for community to share their real-world experiences and concerns, and for us to ask and answer relevant ethicallyapproved questions including those from clinicians and decision-makers, VITAL can and will direct policymakers and funding bodies to support exploration of the perimeno-areas that can make the most differencephysically, psychologically, socially, and economically.
To learn more: https://bespokeclinicalresearch. com.au/vitalimpact/
MAKING MENTAL HEALTH TRAINING CHILD’S PLAY MAKING MENTAL HEALTH TRAINING CHILD’S PLAY
The power of play in mental health
A playful digital platform is helping kids build resilience and develop essential mental health skills through interactive, research-backed experiences. By
Linda Music
Australia’s acute mental health services are under mounting pressure, with recent data revealing a 50% surge in conditions such as social anxiety and ADHD among children aged six to 12 over the past two years. The findings highlight the urgent need for early intervention to curb the growing mental health crisis.
But there’s hope on the horizon. A new digital platform, Evolving Play, is set to change the way mental health support is delivered to children at risk. Backed by SPHERE’s Innovation & Industry Platform (TECH), Evolving Play offers an experiential learning environment that brings together cutting-edge digital therapeutics in a user-friendly format. The platform empowers children to define
and manage their own mental wellbeing journeys, providing early and targeted assistance before conditions become entrenched.
“Waiting for mental illness to manifest in adulthood sends our children down paths that evidence has shown can be prevented,” says Jamie Anderson, CEO of Evolving Play
“Mental wellbeing isn’t something that simply emerges over time; it requires the development of foundational skills during childhood. By transforming evidencebased research into playful interactive experiences, this platform provides a pathway for children to build resilience and confidence offering a hopeful step forward in tackling the growing mental health crisis
amongst young Australians.”
How it began
The project builds on six years of research which began with a European Union grant in 2018 focusing on researching cognitive processes and learning acquisition. Collaborating extensively with academics from universities around the world, including the University of Cambridge’s Department of Play, The University of Southern California, UC San Diego and the Australian Research Council, researchers moved on to explore how play can effectively simulate cognitive skills retention over time.
With an innovation grant from the
Credit: Chomplearn
NSW Government and support from the National Youth Mental Health Foundation (Headspace), the project evolved to incorporate research-backed cognitive development strategies with hands-on therapeutic approaches. Over time, the focus expanded to include digital technologies, creating immersive learning experiences beyond traditional play settings.
Evolving Play
Until now, there hasn’t been a way to turn clinically proven mental health therapies into engaging digital experiences for at-risk children. Evolving Play changes that by combining research-backed skillbuilding with interactive learning.
This play-based digital platform helps children develop emotional, cognitive, and physical skills through therapeutic games—without adding to the workload of busy healthcare professionals. Each game focuses on a key therapy skill, like mindfulness through meditation or fostering compassion by reframing thoughts. Childre track their emotions and challenges, receiving research-based feedback to support their growth and daily routines. All interactions inform practitioners, parents, and children about progress.
Initially developed for children ages three to nine, ongoing research shifted the focus to older children (nine to 17) who are more likely to experience anxiety, depression ADHD and behaviour issues.
Child-centred focus
The Evolving Play platform is designed to be child-centered, aligning with the National Children’s Mental Health and Wellbeing Strategy 2021 (NCMHWS). This strategy outlined key challenges in
preventing mental health issues, including gaps in research application, therapy in vulnerable communities, and barriers to access, quality care, practitioner support, early warning detection, and data collection.
To address the child mental health crisis, the strategy emphasised the need for digital services that are child-centred, prevention-focused, widely accessible, evidence-based, and guided by early intervention and individual needs rather than diagnosis. Evolving Play fits the bill perfectly.
“Our approach remains child-centred, focusing on understanding the child’s preferences, how to motivate them, and incorporating insights from academic and practitioner research,” explains Jamie.
Applying the Research
Evolving Play partnered with Headspace to provide alternative support strategies for young people who were resistant to traditional therapy. Many were dealing with anxiety, depression, or ADHD and psychologists faced challenges engaging them. To address this, an interactive program was developed, focusing on immersive experiences rather than conventional therapy. It was specifically designed for those already working with therapists who could benefit from learning practical strategies to manage stress, pressure, failure, and emotional regulation.
A tailored curriculum was also designed in partnership with Mission Australia to assist newly arrived refugees with complex needs, as well as children at risk of mental illness. Participants came from schools in low socio-economic areas, often facing significant social, emotional, and learning challenges alongside complex home lives. The program took into account
neuropsychological needs, particularly for those who had experienced early-life trauma, ensuring a compassionate and flexible approach.
“Many of these children were not diagnosed with mental health conditions but were considered vulnerable and in need of extra support,” explains Jamie.
Feedback from Mission Australia indicated that 80-90% of the 134 participants gained practical mental health skills through the program.
SPHERE involvement
Recognising the importance of the Evolving Play platform, SPHERE’s Innovation & Industry Platform is providing its support through resources and connections.
“SPHERE’s Innovation & Industry platform, co-led by researchers from three partner universities—University of New South Wales, Western Sydney University, and University of Technology Sydney—is driving the technology translation of Evolving Play through trials, evaluations, and community engagement,” explains Dr Jiao Jiao Li from UTS. “We hope to support the evolution of this technology and its implementation in the community to enable early intervention for at-risk children, and bring real benefits for our patients, caregivers and practitioners.”
Jamie believes that SPHERE provides the perfect partner to further improve and expand Evolving Play
“Our belief is that there’s an effective solution to the rising rates of preventable mental health issues among young people through collaboration between academia, healthcare and technology. SPHERE helps us do that.”
https://evolvingplay.org
ENHANCING PERINATAL MENTAL HEALTH
By equipping clinicians with the tools they need, PIPE-MC aims to support efforts to prevent the escalation of mental illness, mitigate the risk of maternal suicide, and reduce the potential long-term impact of poor maternal mental health on children.
Credit: Eva HM
Healthcare professionals— including midwives, obstetricians, general practitioners, social workers, and perinatal mental health staff—are on the frontline of supporting new mothers, yet many feel unprepared to address a critical issue: perinatal mental health.
Researchers at Western Sydney University found that these professionals often lack the skills and confidence to provide essential care for women facing mental health challenges after birth. With around 300,000 women giving birth in Australia each year and 60,000 experiencing mental health concerns—suicide remains one of the leading causes of maternal death—this gap in care has serious consequences. Social factors such as poverty, inadequate housing, and domestic violence further compound these challenges.
Introducing PIPE-MC
To address these critical gaps in care, researchers from the School of Nursing and Midwifery at Western Sydney University, together with people with lived experience, developed the Perinatal Interprofessional Education – Mental Health and Complex Care (PIPE-MC) program. The program, initiated by PhD candidate and experienced clinician Louise Everitt in collaboration with Professor Virginia Schmied, is an innovative, traumainformed training initiative designed to enhance healthcare professionals’ skills and confidence in supporting women with perinatal mental health and psychosocial concerns.
“By equipping clinicians with the tools they need, PIPE-MC aims to support efforts to prevent the escalation of mental illness, mitigate the risk of maternal suicide, and reduce the potential long-term impact of poor maternal mental health on children,” explains Prof Schmied.
Co-Design
The PIPE-MC program was codesigned with individuals who have lived experience of perinatal mental health concerns and healthcare professionals specialising in maternity and perinatal mental health. Traumainformed care principles are embedded throughout the program, which includes an online module on trauma-informed care and interactive workshop.
“The program uses immersive technologies, such as 360° videos, to help participants engage with realistic clinical scenarios, promoting empathy and social awareness,” explains Prof Schmied.
Testing the program
Between May 2022 and October 2023, PIPE-MC was trialled across 14 sites in New South Wales, Queensland, the Northern Territory, and Western Australia. A total of 305 clinicians from 11 different disciplines participated in 28 workshops, providing invaluable feedback. This input was used to refine and develop a Facilitator Training Program to ensure consistency in training delivery.
Taking the program nationwide
The next step is scaling up the
program nationwide. A facilitator training initiative has been launched to equip professionals with the knowledge and skills to implement PIPE-MC in their own workplaces. To date, 46 facilitators have been trained, ensuring the program’s ongoing reach and sustainability.
Additional funding from the Commonwealth Government has expanded the initiative to the ACT, Victoria, Tasmania, and South Australia, further increasing accessibility to this essential training.
The Future of Perinatal Mental Health Care
PIPE-MC is broadening the scope of education offered to health and community professionals. With practical, evidence-based training, the program is not only bridging critical gaps in care but also paving the way for a future where no woman faces perinatal mental health challenges alone. With its national rollout underway, PIPE-MC holds the promise of transforming how care is delivered—ensuring that more women receive the support they need when they need it most, ultimately shaping healthier futures for mothers, babies, and families across the country.
FROM OUR PARTNER: WESTERN SYDNEY UNIVERSITY
Professor Virginia Schmied
IMB’s Professor Glenn King, University of Queensland
Spider Venom Heart Drug Set for Clinical Trials
How can spider venom help heart attack victims and boost heart transplants.
By Professor Bob Graham Victor Chang Cardiac Research Institute
First-in-human trials of a new treatment that could revolutionise heart transplants and save more lives after a heart attack could start in mid-2025.
Scientists at the Victor Chang Cardiac Research Institute and the University of Queensland are working on a protein, Hi1a, derived from the venom of one of the world’s deadliest spiders, the K’gari funnel-web spider.
In 2024, the team received $17.8 million in funding from the Medical Research Future Fund (MRFF) to begin a four-year trial to assess the potential of Hi1a as a treatment to prevent heart damage during a heart attack or after procurement of a donor heart for transplantation.
How could spider venom help people having a heart attack?
Damage to the heart after a heart attack is caused by a lack of oxygen and also a build-up of lactic acid. The lactic acid build-up triggers a suicide message that causes additional heart cells to die, which markedly and irreversibly increases the amount of tissue damaged.
Discovered by Professor Glenn King at the University of Queensland (UQ), Professor Peter Macdonald and Professor Bob Graham at the Victor Chang Cardiac Research Institute have been collaborating with Professor King and A/Prof Nathan Palpant, also at
Professor Bob Graham
UQ’s Institute of Molecular Biology (IMB) to develop a drug derived from the protein in the spider venom called Hi1a. It works by blocking the acid-
FROM OUR PARTNER: VICTOR CHANG CARDIAC RESEARCH INSTITUTE
sensing ion channels in the heart that are activated by the build-up of lactic acid after a heart attack, so the death message is blocked and the progressive expansion of tissue damage is averted.
It is hoped the new drug could be administered to heart attack victims by first responders to prevent long-term damage to the heart. This would be a massive breakthrough as at present there are no drugs available to protect heart muscle cells from damage after a heart attack.
The new therapy could also revolutionise heart transplant surgery. By stopping the death signal in the heart cells, the donor hearts will remain ‘healthy’ for longer.
“This could increase the number of hearts available for transplant by 30%. For people who are literally on death’s door, this could be life-changing,” says Professor Macdonald.
Human trials of Hi1a
Hi1a is a large protein (bigger than insulin) and therefore difficult to manufacture. To circumvent this problem, a peptide about 1/6 of the size of Hi1a has been developed. Importantly, it still retains the potency and specificity of Hi1a for blocking the ion channel, acid sensing ion channel1a (ASIC-1a), which is how it works to limit damage after a heart attack or stroke, and to limit deterioration of donor hearts for transplantation.
The drug has already been tested on beating heart cells and has shown promise in vital pre-clinical studies.
Professor Graham says: “We have a unique opportunity to develop a ground-breaking therapeutic based on cutting-edge Australian innovation that could transform the treatment of heart attacks and heart transplants.
“It is incredible to note that the entire team moving ahead with the
project is composed of internationally renowned Australian scientists and clinicians, the initial clinical trials will be undertaken primarily in Australia and the treatment was also developed here too.”
The MRFF funding will enable the Institute’s scientists to move ahead with first-in-human clinical safety trials to evaluate the drug’s safety.
It is anticipated that these trials will start around mid-2025, with the safety trial involving approximately 100 healthy subjects. The findings from this trial will be applicable to both subsequent phase IIa heart attack and heart transplantation efficacy studies.
The project is being led by IMB and also involves researchers from the Baker Heart & Diabetes Institute as well as clinicians at St Vincent’s Hospital in Sydney, the Alfred Hospital in Melbourne and The Prince Charles Hospital in Brisbane.
Photo credit: Everlock (iStock)
VCCRI’s Dr Jeanette Villaneueva
Profile: Professor David Thomas
When Professor David Thomas was starting university over 40 years ago, it was his love of history and English literature that compelled him to choose an Arts degree. Despite seeing himself as a “humanities guy”, he quickly realised that a degree in the Arts, whilst fulfilling his passion, would not fulfil his desire to do something useful. With this need to be ‘useful’ firmly set in his mind, Prof Thomas made the huge leap from Arts to Medicine. What has transpired has revolutionised Australia’s cancer research and treatment landscape and earnt Prof Thomas the prestigious 2024 NSW Premier’s Award for Most Outstanding Cancer Researcher.
Early days
As a young resident, Prof Thomas found the most compelling work was in oncology and palliative care. Embarking on a PhD which fused cancer and endocrinology, he found his calling.
“I fell in love with science. I realised very early on that what I wanted to do with the rest of my life was a mix of research and clinical practice.”
A post-doctorate examining the key protein critical for bone sarcoma development followed, cementing his interest in cancer.
An idea takes form
Prof Thomas explains that his early fascination with the potential of
molecular biology and genetics was due largely to the enormous strides occurring in cancer research.
“Back in the 1990s, it was clear there were going to be enormous advances in oncology,” he explains.
“The drivers of that—molecular and cellular biology, cancer genomics, and rational drug development—gave us the tools to understand the circuitry of cancer. For the first time, we could profile a patient’s individual cancer to identify drug targets.”
However, while the technology was developing quickly, the pathway of how best to connect that technology to treatment was unclear.
In 2011, supported by a Victorian Cancer Agency project grant, Prof Thomas helped set up genomic profiling tools in five cancer centres in Victoria. His work involved going into pathology labs, supporting clinicians and doing genomic profiling of tumours. When he moved to NSW in 2014 he had one proviso.
“I came to NSW on the condition that we could start to build on the treatments along with the profiling we had started in Victoria. My aim was to start systematically working on developing clinical trials of agents that we could deploy based on molecular screening in individual patients.”
The program in NSW thrived. Patients from all over the country came to NSW to take part and it quickly became apparent that there was a need for the service on a national
level.
A successful MRFF grant saw the need answered and a national program was set up offering precision oncology based around genomic profiling and matched therapies through clinical trials.
OMICO is Born
Prof Thomas’s vision for transforming cancer treatment through precision oncology took shape with the establishment of OMICO, which he founded.
Instead of following a traditional model, OMICO adopted a novel approach inspired by corporate structures to ensure nationwide impact. By creating a not-for-profit entity that reflected a public health mission, OMICO became the cornerstone of a national program. Initially spanning eight cancer centres—one in each state and territory—OMICO facilitated direct access to cutting-edge therapies tailored to individual genomic profiles.
“We realised early on that OMICO wasn’t just about conducting trials; it was about revolutionising care delivery,” he explains.
“It became a pivotal tool to operationalise our vision of precision oncology at the point of care across Australia.”
Supported by a successful MRFF grant, OMICO quickly evolved into a pivotal hub for managing funds, governance, and strategic
Prof Thomas is the inaugural Director of the Centre for Molecular Oncology at UNSW, and the former Director of the Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute of Medical Research. (2014-21). Prof Thomas founded the Australasian Sarcoma Study Group, which has supported Australian clinical trials and translational research into sarcomas.
He founded the International Sarcoma Kindred Study, the largest global study of genetic factors in sarcoma, involving 23 centres in seven countries. He led the first study of denosumab in Giant Cell Tumor of bone, leading to FDA, EMA and TGA approval, and PBS reimbursement.
He also co-led a meta-analysis of whole body MRI screening for patients with Li-Fraumeni syndrome, changing clinical practice guidelines internationally, and led the listing on the MBS. He founded the Australian Genomic Cancer Medicine Centre (Omico), a Federally-funded national precision oncology platform which has enabled more than 20,000 Australians with advanced cancer to access genomic profiling, and matched targeted therapies.
He has published over 270 research papers, including first or last author papers in Science, Cancer Cell, Molecular Cell, JAMA Oncology, Lancet Oncology, Journal of Clinical Oncology, Cancer Discovery, Journal of Clinical Investigation and Nature Communications. His work has been cited more than 20,000 times, with an H-index of 67 (Google Scholar). In 2018, he was the president of the Connective Tissue Oncology Society, the peak body in his field.
partnerships. Its incorporation provided flexibility, enabling productive collaborations with pharmaceutical industries crucial for accessing essential drugs and building clinical trial capacity.
“Our partnerships with pharmaceutical industries were essential,” Prof Thomas emphasises.
“They not only provided critical drugs but also supported the expansion of clinical trials, significantly exceeding our initial projections.”
By leveraging diverse funding sources, OMICO surpassed expectations, enrolling over 8,300 patients—more than doubling the anticipated numbers—within its first five years.
Two key areas of genomics and precision medicine research
Prof Thomas’s research is centred on two major areas: using genomics to improve cancer treatment and leveraging genomics to understand and prevent cancer. On the treatment side, he is focused on integrating precision oncology into mainstream healthcare, ensuring that Australian patients have access to cutting-edge,
targeted therapies. While many of these treatments are already approved overseas, particularly in the U.S., they often face delays in Australia due to outdated approval and funding processes. Prof Thomas’ work involves advocating for systemic change, bringing new cancer drugs and clinical trials into the country, and pushing for reforms to the way treatments are evaluated and funded.
“We are working to ensure that breakthroughs in cancer treatment are integrated into healthcare and become standard practice.”
The second half of his work focuses on understanding why cancers develop and how to identify people at the highest risk. By studying inherited genetic factors and other molecular markers, his team has contributed to the development of tools that can detect cancers early, when they are still curable. One key success was securing Medicare coverage for whole-body MRI screening, allowing high-risk individuals to access this lifesaving technology as part of routine care. This work extends beyond diagnosis—it also explores how risk can be managed to prevent cancer deaths and improve long-term outcomes for patients and their families.
Prof Thomas founded the Australasian Sarcoma Study Group, which has supported Australian clinical trials and translational research into sarcomas.
Credit: Mohammed Haneefa Nizmudeen
Prof Thomas’s overarching vision is to bring these advances—both in cancer treatment and prevention— out of the lab and into the healthcare system, making them accessible to all Australians. Work towards this vision is well underway with Prof Thomas’ longstanding research and work in omics forming the backbone of the Precision Care Clinic, established in 2024. The clinic, based at the Prince of Wales Hospital in Sydney, integrates genomic profiling with advanced clinical strategies to deliver tailored cancer therapies.
Over the next five years, Prof Thomas’ focus is on closing the gap between research and real-world clinical practice by integrating these technologies into routine care. If successful, these efforts could fundamentally reshape cancer care and, by 2040, potentially cut cancer mortality rates in half.
“I hope to still be alive when this happens but until then it is my job to set things up so this goal can be achieved.”
SPHERE’s role in -omics research
SPHERE’s Cancer Clinical Theme has made ‘Bringing Omics into Clinical Practice’ a key focus area, recognising that genomics and other omics
technologies are rapidly transforming cancer care. Led by Prof Thomas, this initiative is about ensuring that clinicians within SPHERE’s network have access to cutting-edge molecular tools that can directly impact patient outcomes. With this focus, the Cancer Clinical Theme is helping to bridge the gap between research and realworld application, allowing clinicians to use advanced omics insights in daily practice.
“This focus has also supported early-career researchers like SPHERE Fellow, Dr. Frank Lin, who is exploring new ways to apply these technologies in clinical settings. At its core, this initiative is about making sure the latest scientific advancements benefit patients now—not years down the line,” he explains.
NSW Outstanding Cancer Researcher of the Year
At the end of 2024, Prof Thomas received the Outstanding Cancer Researcher of the Year Award at the NSW Premier’s Awards for Outstanding Cancer Research. This prestigious award acknowledges researchers who have made significant and lasting contributions to cancer research in the state, improving outcomes for people affected by cancer.
“The most important thing about winning this award is that we are starting to get public recognition for this vision. We’re reaching the point where we’re at the cusp of permanently changing clinical management of cancer patients and this award gives me hope that we will be able to get equitable access to the promise of science for all Australians.”
A promising future for cancer patients
As a young man, Professor Thomas took a bold leap from the Arts to Medicine—a decision that changed the course of his life and, more importantly, the lives of countless cancer patients. While the literary world may have lost a potential great, the field of cancer research gained a visionary. His pioneering work in precision oncology and cancer genomics has not only advanced treatment options but is also shaping the future of cancer care, giving patients access to cutting-edge therapies and life-saving innovations. Thankfully for cancer patients, he chose science over storytelling— though his impact on medicine tells a remarkable story of its own.
More information: https://www.unsw. edu.au/staff/david-thomas
NHMRC Ten of the Best. Fellowship elected as one of the 10 best NHMRC investments for 2009
President, Connective Tissue Oncology Society Named honor: Desai Thomas Award for Excellence in Sarcoma Research (inaugurated 2018)
21st Herman Suit lecturer, CTOS. 2021 PWC Pearls Series: Emerging leaders in Sydney’s business community
Australian and New Zealand Sarcoma Association, Outstanding Lifetime Contribution Award
2024 National Press Club address: Cancer: the modern plague NSW Premier’s Outstanding Cancer Researcher Award French-Australian Award for Health and Wellbeing
Kathryn Leaney
A
relentless advocate for consumer involvement in cancer research
Kathryn Leaney’s journey into cancer research advocacy began in 2012 with a personal battle—her diagnosis of Ductal Carcinoma In Situ (DCIS). Although she avoided chemotherapy and radiation, her experience was anything but simple. Multiple surgeries, including a mastectomy, left her frustrated with the fragmented communication among medical professionals. Seeking answers, she found herself navigating a maze of specialists who rarely provided the clarity she needed.
“I was the one putting the pieces together, trying to make sense of it all. I thought, surely we can do better than this.”
This experience ignited a passion that would shape her future: ensuring that patients have a voice in cancer research and healthcare decisionmaking.
Her search for a way to make a difference led her to a Cancer Council NSW training program for consumer involvement in research. There, she found her calling.
“I realised that if I could help researchers understand what patients really go through, maybe I could make a difference.”
Changing the role of consumers in research
Kathryn joined Cancer Voices, a leading organisation championing consumer participation in cancer research, and quickly became a
dedicated advocate.
“When researchers genuinely engage with consumers, the whole dynamic changes,” she explains.
“They start seeing us not just as people with lived experience but as partners who can shape research in meaningful ways”
“When researchers genuinely engage with consumers, the whole dynamic changes. They start seeing us not just as people with lived experience but as partners who can shape research in meaningful ways”
Over the years, Kathryn’s influence has grown. She has worked alongside leading researchers at the University of New South Wales (UNSW) and the Translational Cancer Research Network (TCRN), contributing to cancer research projects including MRFF-funded research, and more.
“I don’t limit myself to just breast cancer,” she explains. “Cancer affects so many lives in so many ways. If I can help improve research across multiple areas, that’s what I want to do.”
When Kathryn first started in consumer advocacy, researchers often viewed consumer representatives as token additions to grant applications.
“I had one researcher who was eager to include me in their proposal, but the moment they got funding, they said they didn’t need a consumer any more!
“Then, several years later, the same researcher tried to list me on another grant application — without even asking me first. That’s when I knew we needed to push for genuine engagement, not just box-ticking.”
Thanks to advocates like Kathryn, this mindset is shifting. Earlycareer researchers are increasingly recognising the value of integrating consumer perspectives from the outset. Kathryn takes every opportunity to talk to PhD students and postdocs about engaging with consumers, and they actually want to listen.
“They’re asking, ‘How do we do this right?’ And that gives me hope.”
A recognised leader in consumer engagement
Kathryn’s contributions to consumer involvement in research are widely recognised. She is a valued member of the Consumer Advisory Panel for SPHERE’s Cancer Clinical Theme and has served on Consumer Review Panels for the National Breast Cancer Foundation (NBCF), the Medical Research Future Fund (MRFF), Cancer Institute NSW, and Cancer Council NSW. Until early
2024, she was an executive committee member of Cancer Voices, overseeing its Consumer Involvement in Research (CIR) Program. Last year she was a finalist for the Premier’s Award Consumer Engagement in Cancer Research award.
Driving meaningful change
Kathryn envisions a future where medical and research training includes a strong emphasis on patient perspectives, ensuring that future clinicians and scientists truly understand the human impact of their work. She believes that before entering laboratories or clinical
practice, students should engage with people who have experienced serious illnesses, like cancer, to grasp the emotional and physical challenges of diagnosis and treatment. Reflecting on a forum at UNSW in 2018, where high school students and medical students interacted with consumers, she recalls how a medical student was shocked as she described her experiences as a cancer patient.
“To me, it just seems like common sense to have patients come in and talk to medical students about what it’s like to be diagnosed with an illness and go through treatment. It would give
students a much better understanding of how their future work will impact people’s lives.”
A legacy of advocacy
From a frustrated patient seeking answers to a leading advocate shaping cancer research, Kathryn Leaney embodies the power of consumer involvement in medical research.
“At the end of the day, research isn’t just about data and outcomes,” she says. “It’s about people. And as long as I have a voice, I’ll keep making sure it’s heard.”
“At the end of the day, research isn’t just about data and outcomes. It’s about people. And as long as I have a voice, I’ll keep making sure it’s heard.”
