In-SPHERE Winter 2024

In-SPHERE

The official research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE)

WINTER 2024

CANCER SPECIAL: UNDERSTANDING DATA PRECISION CARE CLINIC BULLYING: THE HIDDEN BATTLE OF CHILDHOOD CANCER SURVIVORS ... and more

A.I. TO IMPROVE CARE FOR OLDER IMPROVING PEOPLE

ACCESS TO CHILD AND FAMILY SERVICES FOR MIGRANT FAMILIES

BODY MAPPING IN RESEARCH INTEGRATED DIABETES CARE

Our Partners

Each of our 15 Partners has a proven record of pioneering advancements across healthcare research, innovation and education.

It is this fusion of these different entities into one potent force that makes The Partnership unique - the whole is greater than the sum of the parts.

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IN THIS ISSUE: WINTER 2024 4

In brief

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Foreword by Professor Chris White

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Harnessing AI to improve care for older people

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Integrated care model improving diabetes outcomes

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Power of body mapping in research

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CANCER SPECIAL: Precision Care Clinic

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CANCER SPECIAL: A patient’s experience of precision

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medicine

CANCER SPECIAL: Understanding data to improve

cancer treatment

CANCER SPECIAL: Bullying - hidden battle of childhood

cancer survivors

23 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) Natalie Walsh (Sub-Editor) Mehna Alacozy Bianca Badolato Kristine Concepcion Sophie Gates Stephanie Macmillan

CANCER SPECIAL: Profile - Dmitrii Shek Want to find out how to get an article about your research published in In-SPHERE? Contact l.music@unsw.edu.au

NOTE: The information in this magazine is intended as a general introduction to the research being conducted by SPHERE Clinical Themes, Platforms and Partner Organisations. All care is taken to ensure that the information contained herein is free from error and/or omissions.

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IN BRIEF

A word from our Executive Director medicine program for which Natalie Taylor (p 15) has been successful in obtaining funding. Two years later, and it is with no less sense of excitement, to report in In-SPHERE how the program has evolved and the successes it has achieved. Clinical practice can never be the same again.

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Professor Chris White

here are moments when you know life will never be the same again.

They leave an indelible mark, a fork in the road, to which any number of seminal events can be traced. Neil Armstrong made “one small step for man and one giant leap for mankind.” Or other contemporary milestones, joyous or feared, sometimes the inverse of each other. Inventiveness often occurs at the intersection of the greatest tensions. The crucibles of necessity and fear can fire the most imaginative solutions.

In this edition of In-SPHERE, Dmitrii Shek (p 23) describes his motivations for his personal crusade to make cancer curable. We highlight Georgina Kennedy’s data exploration journey (p 18), necessary to achieve safer, more equitable, and evidence-informed outcomes. Whilst the perspectives of the patient, the clinician, the geneticist and the researchers are shared in describing the rapid applied research translation of ‘omics’ into practice (p 15).

Before stepping into this executive role, I had the privilege of consulting this new kind of research-driven personalised

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Personalised medicine will no doubt mean something different to each of the members of the team, not least for the patients like Rosemary (p 16) whose lives have been dramatically changed.

The challenge remains delivering these types of advances in an equitable and consistent manner. But it is here to stay, and like Julius Caesar’s crossing of the Rubicon, there will be no turning back.

Therein lies the rub. How do we ensure equitable access to the same opportunities for all, within tolerable limits of variation, when increasingly personalised medicine considers the biological and social uniqueness of our personas?

While that challenge remains ahead of us, this edition of In-SPHERE presents the tripartite tensions between how we map ourselves in health and disease, personalise the response to illness and ensure the health system response is within acceptable limits of uncertainty or variation.

SPHERE’s mission is to empower the next generation of researchers to meet the challenge with confidence and enthusiasm and to equip them with the resources and frameworks that can be rapidly applied for the benefit of our communities.

New Chair for SPHERE Professor Rod McClure has been appointed as the new Chair of the SPHERE Council. Professor McClure is a distinguished leader in the fields of higher education, health, and research, bringing an extensive background and a wealth of experience to this role.

“Following on from the stewardship of our previous chairs, Ian Jacobs and Amanda Larkin during SPHERE’s induction and re-accreditation, Rod’s appointment brings the right blend of experience and clinicalacademic oversight our Research Translation Centre needs at this time,” says SPHERE Executive Director, Professor Chris White.

Professor McClure’s career spans significant roles across the higher education, government, and industry sectors including Division Director at the Centers for Disease Control and Prevention (CDC), and Dean of Medicine and Health at the University of New England, where he played a crucial role in the operations of the Rural Health Partners RTC in Newcastle.

Currently serving as the Dean of the School of Medicine and Pro-Vice Chancellor Health Futures at Western Sydney University (WSU), Professor McClure is committed to the vision and purpose of SPHERE. “I am honoured to be serving Maridulu Budyari Gumal - Sydney Partnership for Health Education, Research and Enterprise (SPHERE) as the new Council Chair. SPHERE has a clarity of purpose that focuses collaborative effort, and a clear road map for translating health research to improved community health outcomes. I am looking forward to being part of a team that brings innovation to life,” says Professor McClure.

IN BRIEF

Harnessing AI to improve care for older people “The goal of this research is to enable older people to maintain independence, functionality, and diminish disability and deterioration by delivering the right care in the right place at the right time.”

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ach year, a substantial number of Australians aged over 65 seek urgent medical attention, with up to 41% of them visiting Emergency Departments (ED). Alarmingly, nearly half of these cases result in hospital admissions, exposing older people to heightened health risks and adverse outcomes. However, research suggests that a considerable number of these visits could be prevented.

the community, thereby diverting unnecessary ED visits and hospital admissions.

With these statistics in mind, SPHERE has funded an AI project which aims to transform care for older people by detecting those at risk of hospitalisation at an early stage. AI algorithms that can predict ED visits and ED return visits in the general population, as well as in age and disease-specific groups exist, and it is these algorithms that the new research will harness to make a significant difference in the healthcare of older people.

“Recognising that the Emergency Department may not always be the most suitable setting, the project employs AI to develop an algorithm that identifies older people at risk of preventable ED presentations who can be effectively cared for within the community. The outcomes will inform early intervention approaches, fostering empowerment and integration within community and primary care.”

Using these algorithms, the project identifies older people who can receive effective care within

“The goal of this research is to enable older people to maintain independence, functionality, and diminish disability and deterioration by delivering the right care in the right place at the right time,” explains the project leader, NICM Health Research Institute, Western Sydney University Associate Professor, Genevieve Steiner-Lim.

A key factor in the success of this project is the strong cooperation between universities and local health

districts. The multi-disciplinary team from SPHERE’s Age and Ageing Clinical Theme comprises experts from Western Sydney University, University of NSW, South Western Sydney Local Health District, South Western Sydney Primary Health Network, South East Sydney Local Health District, HammondCare, Carers NSW, and Ambulance NSW. The multidisciplinary team includes experts from fields such as neuroscience, data science, software development, health economics, and clinical care. By integrating diverse perspectives and expertise, the project aims to create a comprehensive framework for improving elderly care.

SPHERE Executive Director, Professor Chris White explains that the implications of this project extend far beyond healthcare delivery.

“Through early intervention and promoting integration within primary care settings, the initiative holds the promise of enhancing the quality of life for elderly residents,” he explained.

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Credit: JacobLund

Integrated care model improving diabetes outcomes

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anaging diabetes is complex and often requires a multi-faceted approach. Recognising this, SPHERE’s Diabetes, Obesity, and Metabolic Disease Theme (DOM) developed the Integrated Diabetes Action Group in 2018. This group identified a critical gap in services and policy: the need to transform diabetes care delivery by improving integration between primary and specialist care.

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By Linda Music

The Problem Traditionally, patients diagnosed with Type 2 diabetes are managed primarily by their General Practitioners (GPs). GPs have the skills to manage less complex cases and should only refer patients to diabetes specialist services when cases become more complicated and require specialist input from an endocrinologist. These specialist services, typically based

in hospitals, offer a comprehensive, multidisciplinary approach to supporting people with diabetes.

When newly diagnosed, less complex Type 2 diabetes patients are referred to hospital services before starting medication or receiving education on managing their condition, these specialist services can become overwhelmed, leading to long wait times of eight months or more.

“The incidence of diabetes is

DIABETES

“GPs have reported increased confidence and competence in managing diabetes, while patients have provided positive feedback on their experiences increasing substantially, particularly in South Western Sydney. If we continue with the traditional model, our services will become even more overwhelmed.”

Robyn Barnes, Diabetes Coordinator for South Western Sydney Local Health District (SWSLHD) explains.

Pioneering Case Conferencing To address this growing problem, Diabetes Case Conferencing was developed as a priority. The initial model, launched in Wollondilly in 2017 and then across South West Sydney, involved face-to-face consultations between the GP, a diabetes educator or practice nurse, and an endocrinologist, without the patient present.

“The rationale behind not having the patient attend was to maintain the GP and primary care team as the care providers, with the specialist team being an invisible support, albeit with the patient’s prior consent,” says Professor David Simmons, co-Director of the DOM theme and initiator of the program.

A study published in the International Journal of Integrative Care last year examined the clinical outcomes of this program by analysing data from 645 patients with an average age of 64 years. The results were compelling. Patients showed significant improvements in key health metrics, including reduced HbA1c levels, blood pressure, weight, and body mass index (BMI).

“GPs have reported increased confidence and competence in managing diabetes, while patients have provided positive feedback on their experiences. Although formal analysis and publication of this new model’s results are still pending, initial outcomes are promising, showing significant improvements in HbA1c, blood pressure, and cholesterol levels,” explains Robyn.

Advancing Case Conferencing

The innovative approach to managing diabetes highlights the transformative potential of integrated care models in diabetes management. By fostering closer collaboration between primary and specialist care, these initiatives have not only improved patient outcomes but also empowered GPs with the skills and confidence to manage diabetes more effectively. This integrated approach offers a promising pathway to alleviate the burden on specialist services while ensuring patients receive timely and effective care

Building on this success, the SWS Primary Health Network (PHN) proposed a model with greater collaboration involving the endocrinologist and diabetes educator visiting the GP practice and meeting face-to-face with the GP and patient.

Patients are then reviewed again at six months. This model has been met with high acceptance and enthusiasm, evidenced by it being fully booked until the end of the year.

“This also allowed guidance to be provided in less time and discussion of more cases.”

This model proved highly effective.

The endocrinologist assisted the GP with a management plan including appropriate medication changes, while the diabetes educator promoted necessary behavioural changes. The dual approach not only enhanced patient care but also upskilled the GPs, empowering them to manage diabetes more effectively. With COVID, this case conferencing moved to a telephone approach which has continued to this day helping to reduce travel time.

Credit: Halfpoint, istock Photos

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Credit: Penny Shapter, Hidden Colours of the Invisible, 2022, Acrylic on calico, 156cm x 187cm

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KNOWLEDGE TRANSLATION PLATFORM

Unlocking insights: the power of body mapping in research How can tracing the outline of a body unlock profound insights into personal and communal experiences? We spoke to SPHERE’s Knowledge Translation Platform to find out more about body mapping, an innovative arts-based research method which has benefits across a variety of areas.

By Linda Music

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magine participants sprawled out on expansive canvases, their body shapes emerging as blank templates ready to be filled. Through drawing, painting, collage, sewing, and writing, these outlines transform into vivid tapestries of individual and collective narratives.

Body mapping not only captures the contours of our physical form but also delves deep into the stories, emotions, and histories that reside within, offering researchers a unique lens through which to explore the complexities of human experience. Two exemplars of this unique approach include using art to explore impacts of climate change on mental health, and body mapping to illuminate women’s experiences of stigma and discrimination.

An arts-based approach to climate change and mental health In an innovative collaboration to mitigate the mental health impacts of climate change, Dr. Chloe Watfern and Dr. Priya Vaughan are leading an artsbased approach, which includes body mapping, at the Black Dog Institute and the SPHERE KT Platform.

Their work aims to address the growing mental health crisis linked to climate distress through creative and community-oriented interventions.

recounting her acute distress during the Black Summer bushfires while pregnant.

“I felt intense grief and anxiety about the future world my unborn child would inherit,” she revealed.

This personal experience drove her to focus on climate change and its mental health impacts, highlighting the need for effective support mechanisms.

Impact on Mental Health

Personal Motivation and Climate Distress

The research conducted by Dr. Watfern, Dr. Vaughan, and others has revealed troubling impacts of climate change on mental health.

Dr. Watfern shared her personal motivation for engaging in this work,

“Climate distress, including fears or worries about climate change or In-SPHERE

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KNOWLEDGE TRANSLATION PLATFORM

climate events, can cause feelings of helplessness, panic attacks, insomnia, anxiety, depression, and even thoughts of suicide,” noted Dr. Vaughan.

Research indicates that one in four Australians directly impacted by climate events suffer from posttraumatic stress disorder (PTSD), and even those indirectly affected can experience symptoms of trauma, with women and young people being the most affected.

In response to these findings, Dr. Watfern and Dr. Vaughan have initiated creative and collective interventions to support individuals experiencing climate distress.

“People work together, make art, and think creatively, which can help surface complex discussions about climate emotions and turn anxious feelings into positive action,” explained Dr. Vaughan.

One example of their work involved a body mapping exercise, where participants used natural materials to create life-sized artworks reflecting their emotions and fears related to the environment and climate change. https://www.tandfonline.com/doi/full/1 0.1080/1472586X.2024.2328603.

“Creative practices have helped me understand and harness my climate distress, and I’ve learned how to help others do the same,” said Dr. Watfern.

Other research projects led by their team have shown that arts-based interventions can significantly reduce anxiety and increase well-being, providing a non-clinical, communitybased approach to mental health support. For example, Culture Dose for Kids was co-developed by the Art Gallery of New South Wales and Black Dog Institute. The program has been delivered in regional communities affected by climate-fuelled natural disasters across NSW, and the results of a randomised controlled trial show promising benefits for participants.

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Future Directions Dr. Watfern and Dr. Vaughan are seeking funding to expand their preliminary work into a large-scale pilot project, aiming to support 5,000 people initially and eventually reach 50,000 Australians impacted by climate distress. They plan to collaborate with priority populations, including First Nations communities, rural and remote young people, and LGBTQ+ individuals, to ensure their interventions are inclusive and effective.

The Women and Body Mapping project In this project, researchers set out to illuminate women’s experiences of stigma and discrimination, particularly those stemming from mental distress, disability, and refugee backgrounds.

The deep-seated impacts of such stigma can ripple through every aspect of life, from health and employment to basic access to healthcare.

Why body mapping?

“Traditional methods often fall short in capturing these nuanced experiences, so we turned to body mapping, a creative and reflective research technique, to delve deeper into these stories,” says Principal Investigator, Professor Katherine Boydell, Black Dog Institute, UNSW, and Lead of the SPHERE Knowledge Translation Platform.

Participants were invited to engage in online art workshops, where they created personal body maps under the guidance of facilitators. They traced their bodies on large sheets and used a mix of artistic methods to depict their encounters with stigma and the sources of their resilience. This creative process not only provided a unique means of expression but also served as a catalyst for powerful

storytelling. Once their maps were complete, participants participated in one-on-one interviews, offering deeper insights into the emotions and ideas their artwork represented. These interviews, combined with the body maps, created a rich tapestry of data for analysis.

“Body mapping revealed profound insights into the effects of stigma and discrimination. It served as a powerful mnemonic during interviews, helping participants recall and articulate buried memories. The artistic process also made participants feel safe and in control, allowing them to share their stories comfortably,” explained Professor Boydell.

The participant experience Jane (not her real name), a participant with autism agreed, “Sometimes I don’t have the words for things… [art was] a really alternative way to express something without having to necessarily have the words for it.”

Ultimately, body mapping was not just a research tool but an empowering experience.

“It’s empowering for everybody to have a voice [through art] and to be able to tell their story. That’s powerful,” explained another participant.

To see the body maps created during this project and to read artist statements click the following link see https://unsworks.unsw.edu.au/entities/ publication/06153110-c928-433e849c-a81a3028e9d6. *In this project, the term ‘women’ was used as an inclusive, collective term, welcoming participation from any individual who identified with the designation of woman, including cisgender, transgender, non-binary, or feminine-identifying individuals.

Kathy McCormick, I’m Gazing Back, 2021, Acrylic on calico, 188cm x 136cm

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CANCER SPECIAL Driven by committed researchers and clinicians, cancer research and treatment is advancing rapidly, offering not only hope but also improved patient outcomes.

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Credit: CI Photos, istockphoto

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Credit: Artemis Diana, istockphoto

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CANCER SPECIAL: PRECISION MEDICINE

New Precision Care Clinic transforms cancer treatment

Ushering in a new era of cancer treatment, the Prince of Wales Hospital (POWH) in Sydney has opened a state-of-the-art Precision Care Clinic that leverages the latest genetic research tailoring cancer therapies to individual patients.

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he new clinic, a collaboration between NSW Health, UNSW, and national partners, promises to transform how cancer is diagnosed and treated, offering hope for better outcomes and personalised care. The clinic’s uniqueness lies in its role as a support service for oncologists and cancer specialists across Australia, providing detailed treatment recommendations for referred patients, based on their genetic profiling.

Research implementation: the backbone of the clinic “Bringing together the core clinical research team was the crucial first step in setting up the Precision Care Clinic, ensuring the right balance of expertise

By Linda Music and engagement” explains Lead Researcher for the Precision Care Initiative and Director of SPHERE’s Implementation Science Platform and Deputy Director of SPHERE’s Cancer Theme, UNSW Scientia Associate Professor Natalie Taylor.

From Genetic Testing to Tailored Care

“Designing the research protocol, which incorporates a range of clinical and implementation science methodologies, required flexibility to maintain validity and effectiveness in the fast-evolving field of precision medicine,” she says.

The process often begins with a patient having had tumour profiling, arranged by their treating oncologist, to identify any gene faults present that may inform treatment and, in some situations, diagnosis. Depending on the complexity of the findings and/or uncertainty around the next best management options, patients may be referred to the clinic for a comprehensive review of the evidence base to support decision-making by them and their oncologist.

This research-driven approach is essential not only for establishing the clinic but also for its ongoing operations, enabling continuous adaptation and improvement in patient care.

At the heart of the Precision Care Clinic’s approach is the integration of genomic profiling of tumours with medical oncology and cancer genetics.

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CANCER SPECIAL; PRECISION MEDICINE

“This crucial step determines whether the gene fault is unique to the tumour or an inherited risk, which can have significant implications for the patient’s family.”

The importance of genetic counsellors is important in this process.

Lead Researcher, Precision Care Initiative Scientia Associate Professor Natalie Taylor

“Discussing the potential implications of inherited gene faults with patients and their families is vital. It helps them understand the risks and make informed decisions about their health and that of their relatives.”

“Tumour profiling also provides an opportunity to identify potentially inherited gene faults that predisposes individuals to developing cancers. If such a suspicious gene fault is found, we investigate whether it is inherited by conducting germline testing (genetic testing on non-tumour DNA),” explains Dr Milita Zaheed, a Cancer Genetic Specialist at the clinic.

The traditional approach to identifying patients with an inherited cancer predisposing condition often relies on patients meeting specific criteria to be eligible for genetic testing. For example, young patients with breast or bowel cancer might be referred for genetic testing if there is a suspicion of an inherited cancer. However, this approach can miss cases where the genetic predisposition does not

manifest in the patient’s family history, leaving some gene faults undetected.

The Precision Care Clinic upends this model by using tumour profiling to identify genetic predispositions regardless of family history or cancer type. This means that even if a patient has no apparent family history of cancer, their tumour’s genetic profile can reveal inherited risks that might otherwise go unnoticed.

In some cases, tumour profiling has revealed that a patient’s cancer shares genetic features with a completely different type of cancer, leading to a change in treatment strategy and improved outcomes.

Beyond Treatment The benefits of the Precision Care Clinic extend beyond immediate treatment. By identifying hereditary gene faults, the clinic helps families understand their cancer risks and take

A patient’s experience

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osemary Stevens exemplifies how precision cancer technology can dramatically alter a patient’s treatment trajectory, especially when conventional therapies fail. In December 2021, Rosemary began losing her voice and was eventually diagnosed with Parathyroid Carcinoma (PC), a rare endocrine malignancy with only six cases per 10 million people.

Despite undergoing surgery to remove the tumour which had enveloped around her left vocal cord nerve and left thyroid, as well as undergoing radiation treatment, the cancer spread to her lymph nodes, hip bone, lungs and brain. Her calcium levels climbed dangerously high, and multiple infusions and emergency admissions became

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necessary. Chemotherapy tablets were ineffective, leaving Rosemary with severe side effects and no energy.

Facing limited options, Rosemary’s doctor enrolled her in the Molecular Screening and Therapeutics (MoST) study. Genetic testing revealed a significant tumour mutation burden and an MSH2 gene mutation, indicating potential responsiveness to immunotherapy. This discovery led to a new treatment plan involving immunotherapy infusions every four weeks. The impact was remarkable.

“After just two weeks of immunotherapy, my energy started to return, and my calcium levels dropped.

I could eat again,” Rosemary recalls.

After 10 months of treatment, Rosemary is improving daily.

“The treatments worked incredibly well. My last PET scan showed no cancer in my hip or lungs. I am now back to how I felt two years ago, doing all the activities I was doing then. It feels miraculous and I now have a new lease on life,” says Rosemary.

It is anticipated that Rosemary’s treatment will continue for the next two years.

“We’ve seen hard-to-treat cancers, like pancreatic cancer, respond to immunotherapy when we find the right genetic targets.”

Credit: CI Photos, istockphoto

preventive measures.

“If we discover an inherited risk, it doesn’t just impact the patient’s care. It can inform family members about their own risks and guide them in making proactive health decisions,” Dr Zaheed explains.

The Role of Precision Oncology Dr Frank Lin, a medical oncologist at the clinic, highlights the advances that have made precision oncology possible.

“Over the last two decades, we’ve gained a much deeper understanding of the biology of cancer. We are seeing more and more drugs being designed to target specific cancer mechanisms,” he explains.

Modern genomic technology plays a pivotal role in this transformation and creates significant complexity in cancer care. By sequencing the genetic makeup of tumours, clinicians can identify mutations that serve as targets for new drugs. These drugs, designed to exploit the tumour’s vulnerabilities, represent a significant advancement in cancer treatment.

While precision oncology has led to

some remarkable successes, it faces increasing challenges. A major barrier is dealing with the rapid advances in knowledge from constantly changing evidence, increasing number of options, and managing the logistics of treatments and clinical trials—all of which need to be carefully considered at the bedside.

“We’ve seen hard-to-treat cancers, like pancreatic cancer, respond to treatments when we find the right genetic targets. However, a perpetual challenge is always in ‘separating the wheat from the chaff’,” he says.

The clinic’s multidisciplinary team (MDT), comprising oncologists, pathologists, and geneticists, reviews each case in depth.

“This collaborative approach ensures that no stone is left unturned in the quest to pinpoint the most appropriate treatment at the right time of the patient’s cancer journey. We are building a new type of information service that supports the primary treating oncologists by adding tailored information enhanced by new technologies in cancer diagnostics, while strictly grounding this on evidence-based best practice,” Dr Lin adds.

A New Model of Care

The Precision Care Clinic integrates molecular evidence into cancer care, optimising precision treatment for patients who benefit from targeted therapies or risk management.

The clinic is expected to provide consultation for 400 to 600 patients this year. To manage this scale, the clinic was carefully piloted and inhouse processes refined to ensure full operational capacity before launching nationwide.

“Implementation scientists have been closely monitoring and documenting real-time barriers, learnings, and adaptations to inform a precision care clinic scale-up toolkit,” says A/Prof Taylor.

Following this inital trial, the next phase will involve scoping additional hospital sites and applying this toolkit to establish similar clinics across the country.

“The ultimate goal is to have a sustainable model informed by integrated research evidence that becomes routine care and is available to all patients who need it.”

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Credit: Mongkol Onnuan (istockphoto.com)

Understanding data to improve cancer treatment

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ancer treatment in realworld clinical settings frequently strays from the rigid protocols established in clinical trials. This deviation is driven by the unique and complex needs of patients, along with the practical challenges clinicians encounter daily.

While these necessary adjustments aim to better serve patients, they complicate the understanding of their effects on outcomes. This is where the CaVa (Cancer Variation) initiative comes in.

CaVa, a collaborative effort involving

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By Linda Music

UNSW Sydney, the Ingham Institute of Applied Medical Research, South Western Sydney Local Health District, and SPHERE’s Cancer Clinical Theme, seeks to bridge this critical gap. By harnessing real-world data, CaVa aims to transform cancer care and refine treatment options, ensuring patients receive the most effective and personalised therapies.

The Challenge of RealWorld Cancer Treatment While clinical trials form the

backbone of standardised cancer care protocols, the reality in clinical practice can be quite different. Factors such as drug side effects, the specific healthcare environment, the availability of resources, and the unpredictable nature of the disease, all contribute to variations in treatment. For instance, the administration of chemotherapy, known for its severe side effects, often requires adjustments. Clinicians may reduce dosages, extend treatment intervals, or even drop certain agents to alleviate these burdens. However, these decisions are often made without

CANCER SPECIAL: DATA

robust data to inform them, as the necessary data simply does not exist in many cases.

Addressing the Data Gap Georgina Kennedy, a technical architect and researcher who is part of the team delivering the CaVa initiative, highlights the need for data to inform these critical decisions. Patients experiencing severe side effects from chemotherapy need to understand the potential impact of altering their treatment.

“We are working to fill that gap and trying to help the patients with their decision-making,” she explains.

“The discrepancies between clinical trial protocols and real-world practices highlight the importance of observational data in the decisionmaking process. Expecting adherence to protocols in all cases is unrealistic, making it crucial to study the variations that occur in practice.”

One major challenge is the reliance on scant cancer registry data, which often lacks detailed information on dosing and treatment adjustments.

Administrative datasets can indicate whether a patient received chemotherapy or not but fall short of providing insights into treatment modifications. To address this, it is essential to delve into clinical data and ensure its quality and usability.

sensitive medical records, allowing for the safe handling of detailed patient information.

Dr. Kennedy utilises advanced machine learning techniques on ERICA’s platform to analyse cancer treatment data from NSW clinics.

Machine learning and natural language processing enable the extraction of insights from handwritten clinical notes, providing a level of detail previously unattainable. This enhanced data analysis supports data-driven decision-making by augmenting and cleaning the data to make it more interpretable and useful for research.

CaVa’s findings have already caught the attention of frontline clinicians eager to apply these insights in their daily practice. In lung cancer treatment in South West Sydney Local Health District (SWSLHD), for example, multidisciplinary teams have long engaged in data-driven decisionmaking, albeit through laborious manual processes. Under a Cancer Institute grant, CaVa will support automation of these processes, thereby extending its benefits to other clinical areas.

Dr Georgina Kennedy

“My goal is to enable and tool up clinical research teams to lower the barrier to entry for the use of these data,” says Georgina Kennedy.

“The initiative holds significant potential to uplift day-to-day clinical practice, providing clinicians with the tools and insights necessary to tailor treatments more effectively for their patients.”

The Role of CaVa By streamlining the process of data collection and analysis, while leaving the control of data with the local health districts, CaVa aims to lower the barriers faced by individual researchers as well as clinicians seeking to inform their practice via data-driven evidence. The initiative employs ERICA, a secure computing platform that ensures the privacy of

Credit: ipopba (istockphoto.com)

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Credit:KatarzynaBialasiewicz, istock photo

CANCER SPECIAL; CHILDREN’S CANCER

Overcoming bullying: The hidden battle of childhood cancer survivors Surviving childhood cancer is a significant achievement, but for many young survivors, the battle doesn’t end with remission.

By Linda Music

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eturning to school and reintegrating into social circles can present a whole new set of challenges, including the unfortunate reality of bullying. A study published this year in the Journal of Psychosocial Oncology, dives into the experiences of bullying among childhood cancer survivors, highlighting the profound social difficulties they face and offering insights into potential solutions.

The study, led by Joanna Fardell, SPHERE’s Cancer Clinical Theme Research Fellow, surveyed 73 cancer survivors aged between 8 and 25, and their parents to uncover the extent and nature of bullying these young people encounter. A significant finding was that nearly half of the survivors

reported some degree of being bullied, a figure that starkly highlights the struggles they endure even after overcoming such a significant health crisis.

“Bullying among childhood cancer survivors often manifests as verbal teasing or social exclusion. These negative interactions frequently stem from misunderstandings or ignorance about the survivors’ physical or psychological differences,” explains Joanna.

Survivors, having spent significant time away from school for treatment, may struggle with social skills, making them more vulnerable to being targeted. Physical changes such as hair loss, scarring, or altered mobility can

also make them stand out in ways that draw negative attention.

While the cancer experience can see young people rapidly mature and grow in independence, for some the emotional and social toll of bullying on childhood cancer survivors are significant. Readjusting to life and returning to school after cancer can be challenging, and survivors often face poorer social and emotional functioning, which can hinder their academic performance and overall well-being.

“This is why it is essential for schools, families, and healthcare providers to work together in creating a supportive environment for these young survivors.”

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“[He] does this thing where he rubs his hands together…it’s a little anxiety or a way he deals with emotions…so the kids would laugh or tease him [about that].” (parent of an 11-year-old survivor)

One critical insight from the study is the discrepancy between survivor and parent reports. Survivors were more likely to report instances of bullying compared to their parents.

This gap suggests that parents might not always be fully aware of the extent of their child’s suffering, emphasising the need for better communication and supportive environments that facilitate open communication between students, parents and teachers.

The study also identified factors that can help protect survivors from bullying. Actions of both parents and schools can make a real difference

to preventing bullying and fostering support through friends and teachers.

Having proactive parents who support maintaining and engaging with their child’s peers and social environment can buffer against bullying.

Additionally, programs that educate peers about cancer and its impacts, facilitate friendships, and directly address bullying behaviors can make a considerable difference.

“We know from other research that students who report feeling well supported and well connected to their school community experience better outcomes socially, emotionally and academically. One promising

approach to protect against bullying is by implementing coordinated communication and support systems that involve survivors, their families, medical teams, and educational institutions. Programs that raise awareness among peers about the challenges faced by cancer survivors can foster a more inclusive and empathetic school culture, especially when they are sensitive to the wishes of the young person returning to their life after cancer.

“Additionally, structured opportunities for socialisation and skill-building can help survivors reintegrate more smoothly.”

Credit: Mark Piovesan istock photo

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From personal tragedy to pioneering research His grandfather’s death from cholangiocarcinoma sparked this young doctor to travel across the world to research better treatment options for cancer patients

By Linda Music

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ometimes in life, there are moments that make us stop to reassess our lives and then send us on a new trajectory. For Dmitrii Shek, such a moment unfolded in an oncologist’s office where he and his family confronted the harsh reality of his grandfather’s cholangiocarcinoma diagnosis, and the grim prognosis he would most likely die within the month.

With no treatment options offered, the finality of the prognosis left Dmitrii and his family with no hope. That moment affected Dmitrii so deeply that it set him on a mission which has

seen him travel across the world in an effort to find the answers to improved treatment options for people with cancer.

When Dmitrii’s grandfather was diagnosed, Dmitrii was a final year medical student with a keen interest in pursuing a career in immunology. After his death, Dmitrii decided to turn his attention to oncology.

“Because I was fascinated with immunology, I decided I would combine this interest with oncology.

I began to read everything I could in

the field of cancer immunology which was still a relatively new field,” explains Dmitrii.

“I began exploring research opportunities worldwide and travelled to Sydney to conduct postgraduate research.”

Having completed his Master of Research (Immunology) in 2020, Dmitrii has gone on to further studies and is currently a PhD candidate at Western Sydney University’s Liver Immunology Group, led by Professor Golo Ahlenstiel. His research, known In-SPHERE

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PROFILE: DMITRII SHEK

as the ICEMELT trial, is concentrated on identifying clinical and biological indicators of immunotherapy-induced toxicity in cancer patients.

Immunotherapy has come a long way since its initial approval for cancer treatment around 13 years ago.

“With immunotherapy we can shrink the tumour to such an extent that it doesn’t develop any further.”

However, up to 60% of patients report adverse events, some so severe that they can be life-threatening. This means that many people need to cease this potentially life-saving treatment.

“Because these patients must stop immunotherapy and undergo immunosuppression, their cancer often progresses. So, I wanted to look at what immunological aspects are changing in people who have these toxic side effects.

“We hope that by identifying the markers of immunotherapy toxicity, we will be able to predict the development of these side effects and therefore adjust the immunotherapy at the outset of treatment.

“By doing this we hope to prolong the duration of immunotherapy and consequently improve the quality of life for the patient and increase survival rates.

“While this treatment wasn’t available when my grandfather was diagnosed, I hope in the near future children will be able to enjoy a longer time with their grandparents after a cancer diagnosis.”

Dmitrii is one of 12 recipients of SPHERE’s Cancer PhD top-up scholarship in 2022.

“I am grateful to SPHERE for their financial support which has made a huge difference in helping me to continue my research. It’s not easy

for international students, who are living on a PhD scholarship as their main income, but this additional funding has significantly eased the burden of the cost of living,” he said.

During his PhD, Dmitrii has published five papers.

In 2022, he won the 3-Minute Thesis competition at Western Sydney University.

In 2023 he presented preliminary data from the ICEMELT trial at NSW Cancer Conference, where he received the Best PhD Oral Presentation Award.

In addition, Dmitrii was recognised with the Early Career Researcher Award for Excellence by the AustralAsian GastroIntestinal Trials Group (AGITG) and has received Travel Grants from EMBL Australia and Cancer Institute NSW.

evidence to outcomes, discovery to practice, and innovation to life.

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Credit: Professor Lisa Jackson

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