Each of our 15 Partners has a proven record of pioneering advancements across healthcare research, innovation and education. It is the fusion of these different entities into one potent force that makes The Partnership unique - the whole is greater than the sum of the parts.
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.
Interim Executive Director: Professor Robert Gorkin
Operations Manager: Elizabeth Henness
Editorial Committee
Linda Music (Editor/Chief Writer)
Bianca Badolato (Sub-editor)
Brigitte Gerstl
Mehna Alacozy
Sophie Gates
Maf Hasan (contributing writer)
Stephanie Macmillan Front
(istock
It is a privilege to introduce this issue of In-SPHERE, which highlights research that is making a real difference for culturally and linguistically diverse (CALD) communities. Across every story, a single theme emerges: when we partner with communities as equal collaborators, healthcare becomes more accessible, equitable, and meaningful.
The research featured here illustrates the many ways this principle is being put into practice. Work on lung cancer outcomes among CALD populations, for example, is uncovering how cultural and communication barriers can affect diagnosis, treatment, and access to care. By linking national and state datasets, researchers are identifying patterns and gaps that can guide interventions, ensuring early detection and effective treatment are available to all patients, regardless of their background.
Similarly, in cancer clinical trials, Associate Professor Abhijit Pal and his team are breaking down longstanding inequities in participation. By embedding language, culture, and trust into their approach, they are helping patients from CALD communities engage more fully in conversations about research and treatment, so that innovations in cancer care can benefit everyone.
This issue also celebrates projects grounded in community leadership, showing how local knowledge and leadership can drive meaningful change. The Natural Helper Project, which began with grassroots
SPHERE Fellowship funding, has grown into a finalist for the NSW Health Excellence in Multicultural Healthcare Award, demonstrating how trusted community members can support people to navigate the healthcare system and access care when they need it. My Toddler and Me builds on the same ethos, providing in-language health and development videos to support CALD families with toddlers.
Across Sydney and beyond, programs addressing chronic disease in Pasifika communities are tailoring prevention and management strategies to cultural contexts, with the guidance of consumer advocate Sala Ronda Thompson, showing the impact of research that listens as much as it informs.
The voices of those leading this change are also central to this issue. Making Choices, led by Dr Alex Hawkey at Western Sydney University, explores how system complexity and language barriers shape women’s reproductive health decisions, highlighting the importance of co-designing solutions with the communities involved. Profiles like Professor Pandora Patterson’s, whose work has strengthened multicultural health services in Fairfield, further illustrate the tangible outcomes of research informed by lived experience and cultural understanding.
Together, these stories demonstrate that equity in healthcare is not just an aspiration but a practice, realised when researchers, clinicians, and communities collaborate to design solutions that are relevant,
inclusive, and sustainable. This issue of In-SPHERE highlights that work and shows the importance of research that reaches all communities, ensuring that advancements in healthcare benefit everyone, regardless of language, culture, or background.
As we look ahead, the challenge and opportunity are clear: to embed Consumer and Community Involvement at every stage of research, from setting priorities and shaping methods to interpreting findings and translating them into practice. When communities have a genuine voice and shared ownership in research, we don’t just improve outcomes we build a stronger, fairer health system for all.
Professor Robert Gorkin
In Australia’s increasingly multicultural landscape, ensuring equitable access to cancer care remains a pressing challenge. For Dr Vikneswary Batumalai from The George Institute for Global Health, and her colleagues, the question is not simply how we detect and treat cancer, but who gets access to these opportunities and when. Their latest research, funded by a UNSW Health Systems Research Theme Collaborative Grant, is shining new light on inequities in lung cancer outcomes among culturally and linguistically diverse (CALD) populations.
Lung cancer is the leading cause of cancer-related deaths globally, including in Australia, with people from CALD backgrounds experiencing poorer outcomes. This project aims to understand the drivers of these disparities and how they can be addressed.
At the heart of this research is a powerful linked dataset made possible through the efforts of Associate Professor Mei Ling Yap from UNSW and SWSLHD, whose earlier NHMRC Investigator Grant focused on cancer control for migrant and refugee populations.
“A/Prof Yap secured access to a huge linked dataset from the Person Level Integrated Data Asset (PLIDA). That data will be linked to the New South Wales cancer data, including cancer registration, radiotherapy, oncology, admitted patient and emergency department data. The questions we can now ask with this data are really limitless.”
Using this rich resource, the team is analysing differences between CALD and non-CALD populations across several stages of the cancer care pathway. They are comparing diagnosis rates, exploring whether patients
are identified through GP visits or emergency hospital admissions, and assessing waiting times for treatment in public versus private care. Another focus is the interval from symptom presentation to diagnosis and treatment: key points where delays can have devastating effects.
The researchers are also exploring how GP consultation types may influence outcomes.
“Bulk-billed GP consultations are often short,” Dr Batumalai notes. “Patients might not be given enough time to discuss their symptoms, especially if they can’t speak English. We wanted to look at the types and durations of GP consultations and whether this differs between the CALD and non-CALD community.”
The timing of this research aligns with the recent rollout of Australia’s national lung cancer screening
program, which offers eligible people access to low-dose CT scans. While early detection rates are expected to rise, Dr Batumalai warns that without targeted strategies, inequities could widen.
“We are expecting better outcomes for Australians by detecting lung cancer early with this screening program, but at the same time, we don’t know what the impact will be on CALD populations who may not be aware of, or have enough information to access the screening program.”
Beyond patient-level barriers like language and health literacy, Dr Batumalai argues that deeper systemic issues play a major role.
“Our health system is not designed with cultural sensitivity in mind,” she explains. “For refugees, for example, trauma-informed care is often lacking, which means patients may face significant trust barriers before they even seek help. There’s also a broader gap in understanding among health professionals about the unique needs and experiences of these patients.”
One of the most significant challenges, she adds, is that ethnicity
is not routinely recorded in Australian health data.
“In the UK, it’s compulsory to collect this data, so they can track outcomes by ethnic group. But in Australia, it’s not compulsory.”
To address this, the team is using proxy indicators such as country of birth, language spoken at home and migration history, and they are advocating for ethnicity data collection to become standard practice.
For Dr Batumalai, this work is both professional and personal.
“Being a migrant myself, I feel strongly about supporting this community in getting equal access to treatment and care,” she says.
Ultimately, the goal is to see research like this drive lasting policy change.
“Our program of work is focused on equity in cancer control: nationally, locally and internationally. We want to see equal outcomes for priority populations when it comes to cancer control.”
By exposing the systemic blind spots that leave CALD patients behind, this research could help shape a fairer and more culturally responsive health system: one where background, language or visa status no longer determines a person’s chance of surviving cancer.
By LINDA MUSIC
By
When physiotherapist and researcher, Associate Professor Bernadette (Bernie) Brady, began working at Fairfield Hospital almost 20 years ago, she noticed something she couldn’t quite explain. Despite applying the same evidence-based treatments, some patients simply weren’t getting better.
“Patients from certain communities weren’t responding to treatment,” she recalls. “Initially, I thought I just needed to be a better physio.”
Determined to improve, Bernie pursued a clinical master’s degree to strengthen her technical skills and expand her understanding of rehabilitation. When she returned to work, she found herself splitting her time between Fairfield Hospital, where she treated patients largely from migrant and refugee backgrounds, and a private clinic in another part of Sydney, where her clientele was more affluent and English-speaking.
That contrast was stark and confronting.
“I was the same physio with the same skills achieving completely different results,” she says.
“The patients in private practice improved much faster. It made me think deeply about what role culture, language and socioeconomic status play and what we, as clinicians, can do about it,” Bernie says.
At the heart of that reflection lies her guiding principle of health equity.
“Your postcode, your ability to speak English or your education level should not dictate your health, But in Australia, they still do.”
Fast forward several years, and Bernie is now leading one of the most innovative community-led health programs in the country: the Natural Helper Project.
The idea, developed over five years, is deceptively simple: train volunteers from culturally and linguistically diverse (CALD) communities to act as mentors for others living with chronic conditions.
“These are people who’ve walked the same path,” Bernie explains.
“They’ve successfully managed their diabetes, chronic pain or heart disease and can share their experience in their own language and cultural context.”
The project began as a SPHERE Fellowship in 2019 and evolved rapidly during the COVID-19 pandemic.
“COVID forced us to rethink how we engage with communities,” she says.
“We had to find new ways to communicate: digitally, by phone, through community leaders. It actually made the model stronger and more adaptable.”
The success of that early work helped Bernie and her collaborators
secure a Medical Research Future Fund (MRFF) Consumer-Led Research Grant, enabling them to expand across multiple clinics in South Western Sydney and even test the model in Victoria.
Over 240 patients took part in the cluster randomised controlled trial, across 16 clinics treating chronic conditions such as diabetes and cardiovascular disease. Half the participants received standard care; the others were paired with a trained mentor.
“Mentors were volunteers, often past patients, who had learned how to manage their condition well,” Bernie says.
“We were very clear that we didn’t want them to become substitute health professionals. Their value lay in being authentic. That’s what people responded to.”
Mentors guided their peers through everyday challenges including how to interpret medical advice, how to talk to doctors, or how to adjust their diet and exercise routines while honouring cultural traditions.
The results were striking. Patients who received mentoring showed significant improvements in activation and self-efficacy: their confidence, knowledge and skills to manage their condition.
“We know that activation is a key predictor of long-term health outcomes. If people feel confident and understand why they need to do things, they’re more likely to sustain those behaviours.”
While quality-of-life improvements were modest, the outcomes were powerful enough for South Western Sydney Local Health District’s
Multicultural Health Service to embed the program permanently.
“They now employ a coordinator to oversee the mentors, and more clinics want to take part.”
The Natural Helper Project also reshaped what “consumer-led research” can look like in practice. Because the MRFF grant required strong consumer involvement, Bernie’s team created structures to ensure people from target communities were engaged at every stage, not just as participants, but as collaborators.
“We established a consumer advisory group made up of people who were from CALD backgrounds, had chronic conditions, and understood the systems we were studying,” she says.
“They helped us refine our research questions, choose meaningful outcomes and make sure everything was culturally relevant.”
This co-design process revealed important cultural insights. Many of the participants came from collectivist cultures, where health decisions are made with family or community input.
“Understanding that changed how we approached recruitment and communication.”
Such engagement requires time, trust and humility.
“You can’t rush relationshipbuilding. If you want people to feel valued, you need to train and support them so they can contribute meaningfully. It’s more work but it leads to better, more grounded research.”
For Bernie, the Natural Helper
Project is just the beginning. She sees enormous potential for the model to be adapted for other communities and conditions, especially in primary care and cancer survivorship, where cultural factors profoundly influence outcomes.
For her, the motivation remains personal and unwavering.
“I think my biggest driver is advancing health equity,” she says.
“Your ability to speak English or where you live shouldn’t determine whether you live or die. If we can design systems that acknowledge and address the social and cultural determinants influencing health, we can make healthcare fairer for everyone.”
Through programs like the Natural Helper Project, that vision is steadily becoming reality, one culturallyattuned conversation at a time.
The Natural Helper project is a finalist for NSW Health’s Excellence in Multicultural Health Award.
By LINDA MUSIC
Astudy from Western Sydney University is flipping the script on how we talk about reproductive decisionmaking among migrant and refugee women.
Led by Dr Alex Hawkey, Senior Research Fellow at the Translational Health Research Institute (THRI) and the School of Medicine, at Western Sydney University, Making Choices dives deep into the lived
experiences of women from culturally and linguistically diverse (CALD) communities, revealing not just personal stories, but systemic failures.
Far from the usual assumptions and stereotypes, this project explores how language barriers, lack of access, and complex health systems, not culture or religion alone, shape women’s reproductive choices. And in a powerful shift, the research is being shaped not about these women, but
with them.
The Making Choices study builds on prior research, challenging oversimplified assumptions about the reproductive behaviours of CALD women, such as attributing large families or contraception aversion solely to cultural or religious beliefs. Instead, this research emphasises the systemic barriers women
Credit:
“Add the hurdles of speaking a different language, accessing interpreters, and navigating a system that isn’t built for you, and the complexity becomes overwhelming.”
face, such as navigating complex healthcare systems, accessing reliable information, and overcoming language barriers.
“There’s a common discourse that CALD women don’t use contraception because they lack knowledge or education,” Dr Hawkey explains.
“While this is part of the story, we’re moving beyond that, using a reproductive justice framework to explore the broader systemic issues that prevent equitable access.”
What sets this study apart is its codesign methodology, which involves women from the communities being studied as co-researchers rather than just ‘interpreters’. To date, 93 women have participated in the study from across Iraqi, Afghan, Rohingya, Karen, and South Sudanese communities. These co-researchers actively shape every aspect of the project, from consent forms to interview methods, ensuring culturally sensitive and meaningful engagement tailored to each community.
Data collection is conducted primarily in participants’ preferred languages and involves the artsbased method of body mapping and qualitative interviews. Participants create life-sized outlines of their bodies and use colours, shapes, and textures to represent physical and emotional experiences, such as sideeffects from contraception or the impact of sociocultural expectations. This innovative approach has proven therapeutic for many participants, offering a safe space to express thoughts and emotions often left unspoken.
The study aims to fill critical gaps in existing research, focusing on underexplored topics like reproductive coercion, abortion decision-making, and emergency contraception. These are areas where systemic barriers, such as limited knowledge of healthcare services, cost, and language challenges, disproportionately affect CALD women.
“For example, finding a clinic for abortion services is challenging for any woman. Add the hurdles of speaking a different language, accessing interpreters, and navigating a system that isn’t built for you, and the complexity becomes overwhelming.”
The study’s use of visual methods serves a dual purpose: as a
Dr Alex Hawkey
research tool and as a platform for advocacy. The team plans to curate an exhibition featuring participants’ body maps and narratives, presenting these personal experiences to policymakers and healthcare providers. This strengths-based approach highlights community resilience while advocating for systemic change.
Making Choices represents a bold step forward in addressing inequities in sexual and reproductive health. By amplifying the voices of CALD women and translating their experiences into actionable insights, the study not only contributes to the academic discourse but also paves the way for more inclusive public health policies and practices. In doing so, it transforms research from a distant observation into a collaborative force for justice.
By LINDA MUSIC
In the cancer wards of South Western Sydney (SWSLHD) and South Eastern Sydney Local Health Districts (SESLHD), an innovative approach is reshaping how clinical trials are delivered to culturally and linguistically diverse (CALD) communities. Led by medical oncologist and researcher, Associate Professor Abhijit Pal, this work is addressing longstanding inequities in cancer care and research participation, using a model that puts language, culture, and trust at the forefront.
A/Prof Pal’s interest in equity in clinical research began far from Sydney, during a early phase clinical trials fellowship at the Drug Deevlopment Unit at the internationally renowned Royal Marsden Hospital, London.
“When I was there, I was doing some work on informed consent, and we looked at the demographics of the participants in those trials. They were all Caucasian, university educated, spoke English very well, and were quite wealthy,” he recalls.
This observation sparked a realisation that inequity in clinical research was not confined to one health system.
“I realised that the core of all this is that there’s an inequity in the types of people who are enrolled in clinical research all over the world, not just in cancer. When I stepped into the literature, I realised this finding had been documented for over three decades, all over the world. Not only is this unfair and unjust, it also leads to poor science. The results are not generalisable to the community when only a certain segment are included in research.”
Returning to Australia, A/Prof Pal began exploring what inequity in cancer research participation looked like locally. Australia is home to one of the best publicly-funded cancer care systems in the world, with access to world-leading clinical trials and therapies. Yet, as repeated studies have shown, certain groups do not access these innovations at the same rate as others.
Surveys of cancer trial professionals and clinicians across the country revealed a similar pattern of barriers: a lack of time to discuss trials with patients, limited interpreter availability, and assumptions that non-English-speaking patients weren’t interested in participating. The result was an invisible divide, one where those who might benefit most from new cancer treatments were least likely to be offered them.
While disparities have been documented for decades, there are far fewer reported solutions. To begin addressing this divide locally, A/Prof Pal and his team developed the Arabic Clinical Trial Navigator Pilot Program, funded by the Cancer Institute NSW and implemented at the Liverpool Cancer Therapy Centre and Bankstown Cancer Centre. Serving one of the most culturally diverse areas in Australia, the program provides Arabic-speaking patients with dedicated bilingual educators who help them understand their diagnosis, treatment, and the role of research.
A/Prof Pal says Arabic was chosen as the first language for the navigator program because it allowed the team to focus deeply on one community within a single health district.
“We wanted to start with one culture in one jurisdiction, to really understand the barriers and
opportunities before trying to scale it up,” A/Prof Pal explains.
“When we talk about CALD, we often lump everyone together, but that’s not right. Each community is different. They each have different needs, different beliefs, and different ways of engaging with healthcare. What works for one group may not work for another.”
“We found that many Arabicspeaking patients diagnosed with cancer, particularly those with low English proficiency, are often confused or unsure of what’s happening,” A/Prof Pal says.
“The oncologist may not be able to communicate everything, and the interpreter isn’t always available. The navigator spends one to three hours with the patient to explain cancer and research literacy: what cancer stage means, what a biopsy is, how research works, and what questions to ask.”
The focus isn’t on convincing patients to join a clinical trial, but on empowering them to take part in the conversation.
“Our main goal was to help them participate in the conversation about research. We wanted to empower them with knowledge, not to convince
them, but to give them the confidence to ask questions.”
Through these sessions, many patients discovered the human side of research for the first time. Navigators used real examples, translated resources, and culturally appropriate discussions to break down complex medical information. They also uncovered common misconceptions such as fear of being treated as “test subjects” or concerns about the ethics of pharmaceutical trials.
Beyond patient education, the program also illuminated the systemic barriers clinicians face.
“It was eye-opening. We heard things like ‘I don’t have enough time.’ ‘I can’t find an interpreter.’ ‘I don’t think they want to know.’ ‘It’s just too hard.’”
By introducing a dedicated bilingual navigator, clinicians could refer patients to someone who would spend time building understanding. The navigator then reported back to the oncologist, creating a seamless loop of education and support. The results of the initial co-design component of this work were presented at the Clinical Oncology Society of Australia 2025 meeting. The pilot has now been completed and the results are in preparation.
“We are incredibly proud of this program. It has created a bridge between the healthcare community and improved the visibility of the Arabic speaking community in South West Sydney cancer services. We have strong relations with the bilingual navigators and the multicultural health services, and we believe this close collaboration and cooperation is the foundation for a culturally safe cancer service. The navigator is only one example of a solution, but we expect more solutions such as Arabic specific cancer support groups, to emerge from this work.”
Building on the learnings of the Arabic program, A/Prof Pal’s team is now expanding their focus to Chinese-speaking communities in both SWSLHD and SESLHD. This ambitious new project, funded through a SPHERE’s Cancer Theme’s Clinical Trial Capacity Building Grant, aims to design a system-wide approach to addressing cancer inequity, not just through navigation, but by embedding equity into the structure of cancer services themselves.
At the heart of this project is the creation of a Cancer Inequity Officer at two major cancer services: one in SWSLHD and one in SESLHD. These officers will work closely with clinicians and health service leaders to understand and map inequities across their catchment areas. Their role is to collect detailed data on patients’ cultural, linguistic, and social backgrounds, then co-design interventions to reduce disparities in care.
Specifically, A/Prof Pal explains that the project also acknowledges that inequity exists within communities, not just between them.
“Some Chinese communities are more established, wealthier, and have better access to healthcare literacy. Others, particularly first-generation migrants, have limited English and less time to engage with the system. These are the groups most at risk of missing out.”
A three-phase, experience-based co-design methodology guides the project. Phase one involves community workshops to understand concerns, values, and needs related to research participation. Phase two generates language-specific audiovisual research literacy toolkits and
prototypes navigator strategies. Phase three refines these resources through follow-up workshops. Once finalised, the navigator strategy and toolkits will be embedded in clinics and evaluated over six months to assess trial participation readiness and outcomes. The program’s evaluation framework will assess readiness for trial participation before and after the intervention, helping to measure the real-world impact of these efforts on patient understanding and engagement.
Another important element of the SPHERE grant is the improvement of data capture in cancer services. Current cancer datasets often record only basic demographic details such as nationality or language spoken at home. This limited information makes it difficult to fully understand inequities in access and outcomes.
The new initiative will pilot a standardised set of sociocultural and research literacy data fields, including ancestry, ethnicity, visa category, and English proficiency. Cancer Inequity Officers will oversee this process, with monthly audits and feedback to ensure data completeness and quality. Over time, this richer dataset will help identify patterns of underrepresentation and guide targeted interventions.
A/Prof Pal describes this as a critical step toward culture change.
“If we can start capturing meaningful data about who is and isn’t being reached, we can design the right interventions, not guesswork, but evidence-based solutions.”
The lessons from these initiatives extend far beyond cancer research.
They demonstrate that inequity is not simply a matter of access, but of understanding, communication, and trust. By embedding equity principles into data systems, workforce roles, and community partnerships, these programs provide a roadmap for other clinical disciplines and research areas.
“Our ultimate goal is to deliver the right intervention to the right group at the right time,” A/Prof Pal says. “We don’t want a broad-brush model; different communities have different needs. Those most at risk are often the ones with low English proficiency and lower socioeconomic status.”
The model being developed in SWSLHD and SESLHD could ultimately be adapted for other CALD populations, ensuring that the innovations of modern cancer care are shared equitably across all communities.
With the Arabic Navigator Program continuing to inform new approaches, and the Chinese equity initiative now underway, A/Prof Pal and his team
are helping to shape a new standard for culturally-safe, inclusive cancer research. Their work will feed into the forthcoming Australian Centre for Cancer Equity, a state-wide collaboration dedicated to embedding equity at the heart of cancer care and research.
“The SPHERE grant has been a huge step forward for us as we continue to build on this larger vision of culturally-safe cancer care where culture specific services work side by side with cancer professionals,” A/ Prof Pal says.
“We have incredible technology and resources, but that technology isn’t evenly shared. It’s up to us as researchers and clinicians to make sure the groups that have always missed out don’t miss out again.”
Through persistence, collaboration, and community partnership, this work is not only transforming how clinical trials are delivered, but ensuring that every patient, regardless of language or background, has the opportunity to benefit from cancer clinical trials.
A/Prof Pal and his team are looking to expand this work and collaborate with others interested in promoting equitable cancer care and equitable research participation.
Through SPHERE’s partnerships, anyone interested in understanding how cultural and language differences influence healthcare, or in developing culturally safe research programs, is encouraged to get in touch.
“There is still much to learn, and working together could help apply these strategies in other communities and settings. We aim to move beyond disparity documentation to solution implementation.”
Contact A/Prof Pal at:
abhijit.pal@health.nsw.gov.au
What started as a small project in South Western Sydney to support culturally and linguistically diverse (CALD) parents has become a resource that any family can now access, showing how a local idea, rooted in community need, can be scaled to help so many others.
South West Sydney is home to many culturally and linguistically diverse families, particularly Vietnamese and Arabic-speaking
communities. At Karitane, the Communities Team works directly with families in the first years of life through supported playgroups, parenting groups and outreach events. Over time, a common challenge emerged: parents wanted practical ways to support their toddlers’ emotions and behaviour, but frontline workers didn’t always have the specialist training to provide this guidance.
“There was actually an identified
need from communities and families,” said Associate Professor Jane Kohlhoff, clinical psychologist and Director of Research at Karitane.
“Parents were really struggling to know how to support their toddlers’ emotions and behaviour, and bilingual workers didn’t have the training to deliver live coaching. We needed another solution.”
With funding from the Australian Chinese Charitable Foundation,
a generous donor, and Karitane, the team co-designed four short, animated videos: My Toddler and Me, based on evidence-informed parenting strategies. Every detail, from the choice of imagery to the translations, was developed in consultation with bilingual workers and local families.
“We wanted to make sure the characters in the videos were inclusive, represented a range of different cultures, and that the language was simple and translatable,” A/Prof Kohlhoff explained.
“The process was very collaborative. Families and communities were at the centre of shaping the content.”
The videos were launched in English, Vietnamese, Arabic and Simplified Chinese earlier this year, with strong interest in translating them into further languages as funding allows.
SPHERE’s Early Life Determinants of Health Clinical Theme provided seed funding to evaluate the project. In a randomised controlled trial with more than 140 parents, researchers found that those who watched the videos felt more confident in supporting their toddlers and better able to understand their children’s emotions.
“We saw some amazing changes,” A/Prof Kohlhoff said.
“Parents who watched the videos felt more confident in providing supportive caregiving for their toddlers, and more understanding of their children’s emotions.”
Encouraged by these results, the Raising Children Network, Australia’s most widely accessed parenting website, reviewed and endorsed the videos, making them available nationally and internationally.
“It’s actually one of the first externally-produced video series
“We wanted to make sure the characters in the videos were inclusive, represented a range of different cultures, and that the language was simple and translatable.” Associate Professor Jane Kohlhoff
they’ve put on their website.Now families anywhere in Australia, and even overseas, can access them.”
The project’s innovation and impact was also recognised locally, with the initiative named a finalist in the 2025 South Western Sydney Local Health District Quality Awards. This acknowledgment highlights the project’s potential to improve health outcomes across diverse populations.
What began as a simple idea in South West Sydney has grown into an internationally accessible tool for parents. And with the model now proven, there is potential to expand even further: adding new languages and reaching more families worldwide with resources designed to reflect the unique needs of each community.
English:
https://youtube.com/playlist?list=PL11hLg2egxcF2rQp_ Wet9qo9dQa4s1kWZ&si=DqEWbqm56J2NPkK8 Vietnamese:
https://youtube.com/playlist?list=PL11hLg2egxcFDuLGb8F5HeElPJDLZEleQ&si=B6cdKQTTIeaSV5_g Arabic:
https://youtube.com/ playlist?list=PL11hLg2egxcFC5ldan8vrorLM8NiZxARq&si=urooDAmQT9Wa_kxa
Raising Children Network: https://raisingchildren.net.au/ toddlers/videos
By MAF HASAN
In Western Sydney, where more than half the population speak a language other than English at home, many residents face significant barriers navigating the healthcare system, and accessing and understanding health information. For many people in culturally and linguistically diverse (CALD) communities, information is only trusted when it feels clear, respectful and rooted in their cultural context.
The Statewide Health Literacy Hub at Western Sydney Local Health District (WSLHD), in partnership with the University of Sydney, was established in 2017 to address this
challenge. Since then, their work has expanded statewide, ensuring NSW Health consumers have equitable access to health information.
According to the Australian Bureau of Statistics nearly 60% of adults have inadequate health literacy. This affects their ability to navigate the health system, understand information provided to them, and make decisions about their care.
Research led by the Hub has even linked low health literacy with higher rates of ED representation and hospital readmissions within 28 days.
“Health literacy isn’t just about translating information into another language. It’s about having the ability to read the information, understand it and then apply it to make safe decisions about your health. In the absence of health literacy approaches and awareness, evidence confirms, up to 80% of what is shared in a consultation is forgotten within 48 hours,” explains Dana Mouwad, Director of the Hub.
The Hub grounds its work in equity and cultural responsiveness.
“CALD communities often make health decisions collectively, within families, faith groups, and networks
of trust. Health systems must adapt to this reality,” says Dipti Zachariah, Deputy Director of the Hub.
She describes this approach as “distributed health literacy”, which recognises that health knowledge is rarely held by one person alone, but shared across families, communities, and networks of trust. By treating health literacy as a collective resource, services can better support CALD communities where decisions are often made together, rather than individually.
A powerful example of distributed health literacy in action emerged during the pandemic, when Western Sydney’s diverse communities needed clear and trusted information in the face of uncertainty. The Hub, together with WSLHD Multicultural Health, local organisations, and community leaders, supported a coordinated response that enabled community and faith leaders, bilingual community educators’ leaders, and trusted voices to share accurate health messages in more than 20 languages through community networks, local media, and culturally familiar settings.
Grounded in plain language, cultural
relevance, and collaboration, this collective approach turned information into understanding and action. It strengthened confidence and trust during a pivotal period and continues to inform how health literacy and equity are embedded across communication, service design, and consumer engagement within NSW Health.
Another example of the Hub’s work is its support for the Standing Tall App, an evidence-based program designed to reduce falls among older adults. Developed by Neuroscience Research Australia (NeuRA), the app provides simple, personalised balance exercises. With assistance from the Hub, Standing Tall is now being culturally and linguistically adapted so it can be available in some of the top community languages, making it easier for older people from CALD backgrounds to access, understand and use. By making Standing Tall culturally and linguistically accessible, the Hub is helping to bridge the gap between innovation and real-world use, while embedding equity into every stage of health system design.
The Hub continues to advocate for health literacy to be recognised as a foundation for safe and equitable care and effective communication. Advocates argue that health literacy
should be built into a systematised approach that would see digital platforms, Undergraduate training of health professionals, executive and board level training, and even hospital funding models to reflect the additional needs of people with lower levels of health literacy.
As Dana explains, “Australia is changing. Our health system must change with it. We cannot treat communities as if they are the same as they were 50 years ago, predominantly white, AngloSaxon, and English-speaking. They are diverse, multilingual, and have distinct needs that require tailored approaches. Health literacy is how we honour and adapt our healthcare system to that reality.”
By LINDA MUSIC
Type 2 diabetes is a growing health challenge across Australia, but for Pasifika communities the burden is particularly heavy. Research shows Samoan people are seven times more likely to be hospitalised for diabetesrelated complications than the general population. Barriers such as long working hours, financial pressure and a lack of cultural competence in health services, have resulted in disparities in engagement with mainstream health services between Pasifika and other communities, making diabetes prevention especially difficult.
That’s where the Pasifika Preventing Diabetes Program (PPDP) comes in. Co-led by Professors David Simmons and Freya MacMillan from Western Sydney University and their team, the program works directly with Pasifika churches, important hubs of culture, family, and community, to tackle the growing diabetes problem.
What began as a small pilot with just three churches has grown into
an ambitious program involving 48 churches across Greater Western Sydney and South Eastern Sydney. So far, 36 churches are actively involved, with the rest soon to follow.
“The pilot project showed that people were more physically active, eating healthier, and even lowering their HbA1c levels, the key measure of long-term blood sugar,” said Dr Tina Naumovski, Senior Research Fellow and PPDP Coordinator.
“That’s when the team realised this could really make a difference if we scaled it up.”
At its core, the PPDP meets people where they are. Community activators visit churches, explain the program to leaders, and guide congregations through the process. Once a church agrees, the team, including keen volunteer students from Western Sydney University and other organisations, set up health checks onsite, measuring blood
sugar, blood pressure, body fat, height, weight, waist circumference and a range of questionnaires to explore other areas of health and wellbeing. Results are explained immediately in a culturally-safe manner, and participants with unusual readings are encouraged to follow up with their GP. The volunteers find the experience rewarding while supporting their own broader educational needs.
Importantly, the program doesn’t stop at testing. Churches are then supported to run peer support groups for their congregants, led by volunteer members trained as peer support facilitators. These facilitators are given practical resources including healthy living handbooks, pedometers, exercise bands and scales, and are guided to share 12 healthy lifestyle messages focusing on physical activity and diet with their communities. Training and support by “community activators”, skilled in community development from Local Health Districts and Western Sydney University, ensure
that any problems are prevented or caught early.
“The peer support facilitators are not there to provide medical advice. Their role is about learning and supporting people to make small, achievable changes such as drinking more water, choosing healthier foods, reducing time spent sitting and being more physically active,” Dr Naumovski explains.
The results are already showing great promise. Some churches have banned sugary soft drinks at gatherings. Others are trialling portion control at communal meals. Peer support facilitators are encouraging healthier choices within their families and expanding this to the wider congregation.
The program is tailored to the realities of Pasifika life. Many families juggle multiple jobs, care for large households, and rely on affordable, convenient foods that are often high in sugar and fat. Cultural factors also
play a role, with illness sometimes viewed as inevitable or beyond one’s control.
By embedding prevention directly into trusted community spaces, the PPDP overcomes barriers that traditional healthcare struggles to bridge.
“It’s a program that adapts to the community’s needs and their pace. We go in when the church invites us, and we work with their leaders to make change possible.”
The program runs until 2027, and the early signs are promising. Beyond healthier habits, PPDP is fostering a sense of ownership, pride and collective responsibility for wellbeing. The PPDP team have also helped the Pasifika community and health services respond to public health issues such as COVID-19 and tuberculosis.
Looking ahead, the program carries a clear vision: to lower diabetes risk, strengthen community knowledge, better connect with health services
and improve long-term wellbeing for Pasifika people.
“What we hope to see is healthier, happier communities: children growing up with safer habits, families making positive changes, and people living longer, healthier lives,” says Dr Naumovski.
At its core, it is about creating a shift where health maintenance and self-management are not something added on, but something woven into daily life, faith, and family. By empowering churches to lead and communities to take ownership, the initiative has the potential to spark change that reaches beyond individual outcomes, nurturing resilience, pride, and healthier futures for generations to come.
If you would like to volunteer for the data collections or enquire about student placement/work experience, please contact Dr Tina Naumovski at:
ppdp@westernsydney.edu.au
When Ronda Thompson first stepped into the world of health research, it wasn’t through a traditional pathway. A proud Samoan, she had built a career in finance as a bank manager, while also carrying with her a deep understanding of community, faith, and family shaped by her culture and traditions. When the opportunity came to work on the Western Sydney University, Le Taeao Afua Diabetes pilot project, she immediately recognised both the challenges and the possibilities. The successful pilot project was then extended to the Pasifika Preventing Diabetes Programme (PPDP).
“Health isn’t separate from who we are. It’s woven into our stories, our way of life, our faith,” she explains.
As the bilingual facilitator and now Lead Community Activator for the PPDP, Ronda has become a bridge between health research and Pacific communities. Her fluency in Samoan, including the respectful oratorical language used to address elders, enables her to connect with communities in a way that feels natural, safe, and empowering.
“This is foreign to a Pasifika community, let alone to a church environment, to now include a health program in a religious space. But we
are breaking barriers safely because of the knowledge we have, not just as employees of the university and research, but as community members as well.”
The strength of the program lies in the relationships it builds. Connections with church communities extend over one to three years, allowing trust to develop naturally. Activities are carefully paced to ensure the community feels supported rather than pressured, with a focus on encouragement, education, and lasting engagement.
Her cultural leadership is also formally recognised. Ronda holds three High Chief titles in the Samoan Matai system, a responsibility that extends far beyond ceremony.
“These titles are acknowledged by the community, granting the voice to build trust and foster engagement across Samoan and broader Pasifika communities, especially in health spaces where cultural safety is often overlooked.”
Ronda has a gift for turning complex medical information into words and metaphors that resonate with her people. She often uses an umbrella to explain diabetes complications.
“Diabetes is the umbrella. Underneath are the spokes: heart disease, stroke, kidney disease. Once I
start naming those conditions, you see so many aha moments. Because those are part of our family history. And I always say to the community, we don’t have to normalise this anymore.”
Sessions are deliberately bilingual, with English used on slides and Samoan or Tongan during delivery. This approach helps the community become familiar with health language while keeping the content culturally accessible.
For Ronda, this work is deeply personal. Her husband lives with chronic diabetes and heart failure. Last year, she nearly lost him twice.
“There were times I told my daughters, ‘If I can’t save your father’s life, how am I going to reach a whole community?’ But my daughters said to me, ‘Mum, now more than ever is your time to keep pushing through this role, because we understand too well.’”
That experience has given her role a new urgency.
“For every one person we reach, we’re sparing a family, a church, a whole village from grief. The suffering of one person with diabetes impacts a hundred others in their life.”
It is this blend of personal lived experience and professional leadership that makes her role as a consumer advocate so powerful.
One of the most rewarding outcomes is turning research into real-life care. When we collect data, it becomes a health check for our community.
Ronda carries the dignity of her Samoan heritage, holding titles within the Matai (chiefly) system. It gives her both authority and responsibility in how she speaks to community leaders.
“I stand in front of church leaders and say boldly, ‘Let’s stop losing our people. Let’s understand diabetes.’ But I do it in a way that’s respectful of our culture and traditions.”
She is careful, too, about how she carries her professional role.
“Yes, I sit with professors at the university, but I’m here to serve the community. I tell my team we are here to serve, not to be put on a pedestal.”
And the reward, she adds, is not in accolades but in transformation.
“One of the most rewarding outcomes is turning research into real-life care. When we collect data, it becomes a health check for our community. And when we translate that data, we see the urgency, especially how language barriers affect understanding and access. The stories of change, the newfound knowledge, the empowerment, that’s the reward.”
Despite the impact she has had, Ronda remains humble.
“I’m not one for recognition,” she admitted. “I like to move the mountain
from behind the scenes.”
Looking ahead, her hopes for the program are bold yet grounded.
“Our vision is clear: lower diabetes risk, strengthen community knowledge, and improve long-term wellbeing for Pasifika people. It’s about empowering churches to lead, families to act, and communities to thrive.”
For Ronda, the story is not about her: it’s about her people. Sharing her journey is a way to honour the responsibility she carries. And in doing so, she continues what she set out to achieve from the very beginning: inspiring change, sparing grief, and giving her community the knowledge to live healthier, longer lives.
For Professor Pandora Patterson, research has never been something to leave on the shelf. With over 30 years of experience across the not-forprofit, government, and academic sectors, she has built a career on translating evidence into action. Now, as Chief Executive Officer of Fair Foundations (formerly Community First Step) in Fairfield, she is harnessing her three-fold background as researcher, clinician, and executive to bring world-class ideas into one of Australia’s most culturally diverse and disadvantaged communities.
“One of my hats is that of scientist-practitioner psychologist. My career journey has essentially been one entailing a long-standing commitment to the issue of health equity and service innovation with priority populations,” Pandora says.
That commitment is backed by formidable credentials. A registered psychologist with a PhD in psychology, Pandora is an Adjunct Professor with the Translational Health Research Institute at Western Sydney University. She has also served as an Adjunct Associate Professor with the University of Sydney’s Faculty of Medicine and Health and as a Visiting Professor with Coventry University in the UK. Her extensive research in
youth health and psycho-oncology, and her leadership of Australia’s Youth Cancer Service, which helped secure sustained government investment and establish nationally consistent standards of care, has influenced national cancer policy, best-practice guidelines, government funding decisions, and clinical service models across Australia and internationally. Together, this work has driven tangible improvements in health services and outcomes for young people and their families.
Pandora’s early career began in youth and disability services, followed by seven years with the Infant, Child, Adolescent Mental Health Service (ICAMHS) at South Western Sydney Local Health District. More recently, she served as Executive General Manager of Research, Policy and Patient Programs at Canteen, where she provided national and international leadership on the impact of cancer on young people.
Now, she has come full circle.
“I’ve come back to Southwest Sydney as CEO of a place-based organisation in one of the most culturally diverse areas in Australia. I’ve lived here for over 20 years, I come from a migrant household, and now I have the privilege of leading an organisation in this community.”
One of Fair Foundations’ most ambitious projects is a three-year research collaboration with the Sydney Policy Lab at the University of Sydney, funded by the Ramsay Hospital Research Foundation. The focus: helping refugee and migrant women in Southwest Sydney navigate the complex web of health and community services, particularly around mental health.
“It’s about empowering culturally diverse women from under-resourced communities, and to help them shape the solutions that support their mental wellbeing and their access to care,” Pandora explains.
The project takes a co-design approach, involving women directly in conversations about what works, what doesn’t, and what is missing from current services. Rather than creating programs in isolation, the team are embedding the work in trusted local organisations that already have relationships with the community.
“I believe that by co-designing and embedding initiatives within a trusted, place-based service ecosystem, we can effectively engage communities experiencing complex disadvantage and create sustainable, positive outcomes.”
The research is still in its early stages, but its design reflects her philosophy: co-designing with communities and embedding programs in trusted local organisations to drive sustainable change.
If navigating health systems is one hurdle, digital exclusion is another.
“Fairfield is this really interesting juxtaposition. It’s culturally rich and diverse, but at the same time, it’s one of the most socioeconomically disadvantaged regions. And on top of that, it’s also digitally disadvantaged.”
Fair Foundations’ Digital Empowerment Initiative tackled this head-on. Being digitally disadvantaged isn’t just an inconvenience. It means missing out on access to human services, education, employment, and even everyday essentials like paying bills or booking appointments. Without digital access, people risk being left behind.
The program went beyond teaching computer skills. It addressed affordability and access by providing
laptops and 12 months of free internet, alongside wraparound supports such as childcare, transport, food, and inlanguage program delivery.
“What we did with this program was make it about digital access and affordability alongside digital literacy, and we recognised that wrap-around supports are essential enablers of participation.”
The impact has been clear. The outcomes reported significant improvements in people’s ability to use digital devices, navigate the internet, and access essential online services independently.
“Many participants told us they now feel more empowered to manage things like paying bills online and applying for jobs,” Pandora explains.
Now, the challenge is turning success into sustainability. With a new grant from the University of New South Wales, Pandora and her team, along with UNSW researchers, are developing a digital inclusion framework to guide future work in this space.
“It’s about creating an evidencebased model to scale and sustain digital inclusion programs, so they remain culturally relevant and adaptable to community needs. We’re asking ourselves: how do we scale? How do we establish systems that support sustainability? How do we make sure programs are embedded and not just one-off? And how do we keep them responsive to community needs?”
What makes Pandora’s approach distinctive is her ability to blend rigorous research with grassroots implementation.
Both the navigation and digital empowerment projects reflect that vision: evidence-based, co-designed, and deeply rooted in local realities. For Pandora, it comes down to partnership.
“We’re not just delivering programs: we’re building capability, strengthening voices and working alongside communities to create lasting change.”
Maridulu Budyari Gumal, Sydney Partnership for Health, Education, Research and Enterprise (SPHERE)
1 Campbell Street, Liverpool NSW 2170
www.thesphere.com.au
