Leading Team:  Leah Brennan

The National Eating Disorders Collaboration (NEDC) ‘is an initiative of the Australian eating disorder sector funded by the Australian Government Department of Health and Aged Care and dedicated to developing and implementing a nationally consistent, evidence-based system of care for the prevention and treatment of eating disorders’. In 2023, the NEDC published the National Eating Disorders Strategy, co-developed by those with lived experience, clinicians, researchers, an Aboriginal Advisory Committee, and the National Strategy Expert Group, which includes La Trobe Professor Leah Brennan, who is also a member of the National Strategy Implementation Network.

One of the most consistent messages from those with lived experience of eating disorders, their families, carers and supports, is the need for safe messaging to be delivered across healthcare, education, community services, sport, workplaces and social media. The first three priority actions in the National Eating Disorders Strategy therefore identify the need for the establishment of Eating Disorder Safe Practice Principles.

Following the recommendations of the strategy, the National Eating Disorder Safe Practice Principles were subsequently created by the NEDC in collaboration with La Trobe and based on underpinning research carried out by La Trobe researcher Professor Leah Brennan and student researchers Nina Grdjan andSachi Liston.

Launched in July 2024, the Eating Disorder Safe Practice Principles include 19 interrelated vision statements related to Health, Food, Mind, Body and Harm Minimisation. How-To Guides offer practical implementation guidance for individuals and families, frontline workers, service managers and planners, researchers and policymakers, and media platforms and employers, including action plan templates and an Eating Disorder Safe Self-check toolkit.

Since July 2024, the NEDC has carried out 38 consultations with state education departments, psychosis, health and wellbeing services, dance schools and other providers on how to apply the Eating Disorder Safe Practice Principles within their settings. Evaluation of the efficacy and impact  of changes implemented based on the Strategy will be carried out using the NEDC’s Evaluation Toolkit.

View the National Eating Disorder Safe Practice Principles

Leading Team: Ali Lakhani and Rwth Stuckey

Younger people with life-limiting conditions are often ineligible for the NDIS and experience critical gaps in care. Services such as in-home support and appropriate accommodation are often insufficient or inaccessible. Moreover, service access varies across different states and territories, with some regions offering very limited or no options for people under 65, requiring them to access aged care services as a last resort.

Research by La Trobe’s Dr Ali Lakhani and Dr Rwth Stuckey has uncovered the systemic failures responsible for this shortfall in support. A lack of service sector integration between health, disability, non-clinical in-home care and housing services results in delays, uncertainty, and inconsistent policies. Recommendations from the study include more flexible eligibility criteria, increased investment in home-based and community care services, and enhanced policy alignment to ensure younger people with life-limiting conditions receive appropriate, person-centred care.

The findings have informed national discussions within multiple service sectors, helping shape more inclusive support frameworks for younger people with life-limiting conditions. The study has also provided critical evidence for advocacy groups and service providers to lobby for improved access, funding, and coordination of care, ultimately aiming to improve quality of life and end-of-life experiences for this vulnerable population.

Visit the program website

Leading Team: Amy Dennett

Thank you to Eastern Health for developing and sharing the content for this impact summary

Research shows that exercise benefits most people with cancer before, during and after treatment, and can help to reduce fatigue, regain strength, and relieve stress, anxiety and depression. The availability of exercise programs for people with cancer, however, is very scarce, with only 200 programs available nationally. And for many patients, attendance at face-to-face programs is not possible if they are immunocompromised or geographically distant.

Over the last 5 years, with funding from Medibank, the Victorian Cancer Agency and the Eastern Health Foundation, Eastern Health physiotherapist and La Trobe Researcher Amy Dennett has developed, piloted and implemented an eight-week physiotherapy program that is specifically designed for cancer patients and delivered through telehealth. Cancer patients involved in the TeleCaRe program – co-developed with consumers and practitioners – have reported a  significant improvement in quality of life, and the program has become standard practice as part of the Eastern Health Community Health service.

View a video showing the impact of the program on patients’ lives

Leading Team: Evelien Spelten, Fiona Dangerfield, Leigh Kinsman, Jo Adams

The Rural Health Consumer Panel (RHCP) is a pioneering initiative empowering rural health consumers to co-design solutions that meet their healthcare needs. By prioritizing consumer perspectives, the RHCP builds a robust evidence base for rural healthcare, informing policy and practice to drive tangible improvements in health outcomes. An advisory committee including consumers, service providers, Murray Primary Health Network (PHN), National Rural Health Alliance (NRHA) and Consumers Health Forum of Australia (CHF) provides strategic direction.

Since its launch in May 2022, the RHCP has made significant strides in engaging rural consumers, researchers, and healthcare professionals in meaningful dialogue and collaboration. Examples of projects at La Trobe informed by the RHCP include shaping the direction of future research in areas of long COVID (La Trobe Institute for Molecular Science), building AI technology in rural healthcare (School of Psychology and Public Health), exercise interventions in rural people (Holsworth Research Initiative), and a rural telehealth hub in Mildura (John Richards Centre). External bodies utilising the services of the RHCP have included Consumers Health Forum of Australia, National Rural Health Alliance, Victorian Comprehensive Cancer Centre (VCCC) Alliance, National Mental Health Commission, Bendigo Health, Loddon Mallee Public Health Unit, Nexus Primary Health and Grampians Community Health.

For more information: Dr Fiona Dangerfield, Senior Research Fellow, Violet Vines Marshman Centre for Rural Health Research fiona.dangerfield@latrobe.edu.au

Visit the RHCP Website

Leading Team: Tiffani Howell, Vanessa Rohlf, Pauleen Bennett, Tanya Serry

Animal-assisted education, whereby an animal is integrated into a goal-oriented educational program to enhance academic or developmental outcomes, are increasingly common in school settings, and the 2023/2024 Victorian state budget allocated $4.8 million to integrate more therapy animals into the government school community. Evidence shows that these programs can be effective, but that different approaches to program delivery (e.g., animal/handler training type and extent; the nature of the interactions between students and animals) and risk management can influence their efficacy. With funding from the Victorian Government, a multi-disciplinary team at La Trobe have developed guidelines for implementing animal-assisted programs in schools. They have also developed an online short course Implementing Animal Assisted School Programs so that educational professionals can obtain continuing professional development in animal-assisted programs for schoolchildren to ensure safety for staff, students, and animals, and to enhance outcomes for students.

Visit the short course website

Leading Team: Nora Shields, Rachel Kennedy, Georgia McKenzie

One in ten young Australians live with a disability. Despite recognising the benefits of exercise and wanting to participate, many do not attend a gym. Building on the FitSkills program, designed by La Trobe’s Prof. Nora Shields, VicHealth funded GYM-SPARC, provides fitness professionals with practical advice to improve the gym experience of young adults with disability.

GYM-SPARC stands for Getting Young Adults Moving by Supporting Participation and Access to Recreation Centres. GYM-SPARC identified eight social support strategies for gym owners, fitness trainers and health professionals. A range of resources, including industry workshops and posters for display around the gym, are freely available through the GYM-SPARC website.

Visit the GYM-SPARC website

Leading Team: John Pierce

An estimated 140,000 Australians currently live with APHASIA following a stroke. People with aphasia who do not speak English, are bilingual or are from culturally and linguistically diverse backgrounds face additional disadvantages. A non-English speaking person with aphasia typically receives therapy in English only, as the majority of speech pathologists in Australia are monolingual English speakers. Language therapy resources available in languages other than English are also extremely limited and most often completely unavailable. The result is that non-English speaking and bilingual people with aphasia receive substandard care and minimal language rehabilitation in their preferred language(s), which compromises their recovery compared to English speaking peers. Rehabilitation Speech Pathologist and La Trobe researcher John Pierce – a member of La Trobe’s Centre for Research Excellence in Aphasia Recovery and Rehabilitation – developed a free, online aphasia therapy website in 2013 which allows people to access language therapy for aphasia at no cost, on any device, in multiple languages. With funding from the Telematics Trust, the resource – which already exists in English, Portuguese, Arabic, Spanish, Turkish and Urdu – is being translated into Greek, Vietnamese and Mandarin. In 2023, the site was used by over 47,000 people from 155 different countries in seven different languages. Recent user testing in Germany by a German Masters student, Lena Werner, highlighted the platform’s usability, with 18 people with aphasia evaluating the site. The majority found it enjoyable and easy to use independently, and it received a high usability score. Users reported feeling confident navigating the website after a brief introduction, citing the user-friendly design and clear exercises as ideal for self-guided training. Feedback from Turkish speech pathologists also received positive evaluations on its usability and relevance for their clients with aphasia.

View the online aphasia therapy website

Leading Team: Graham Brown, Jennifer Power, Anthony Lyons, Gosia Mikolajczak

Successful HIV treatments have transformed HIV into a chronic condition. However, research has shown that People Living with HIV (PLHIV) with poor mental health and/or experiencing stigma are less likely to adhere to treatment, and that improving health outcomes through viral suppression does not by itself ensure quality of life. Improving the quality of life of PLHIV is essential for successful lifelong health outcomes and has been prioritised by the Australian National HIV Strategy as well as globally.

Treatment for HIV extends beyond pharmaceutical interventions, to non-medical interventions such as peer programs, community and welfare services, and HIV policy and strategies. But to measure the impact of these interventions, as well as strengthen engagement with people with HIV, requires a scale which is scientifically robust, practical for use in a clinical setting, and seen as relevant by those people living with HIV. With funding and collaboration from the National Association of People with HIV Australia (NAPWHA) and ViiV Healthcare, researcher Graham Brown led a team from La Trobe’s Australia Research Centre in Sex, Health and Society (ARCSHS) to co-develop PozQoL, a validated quality of life measurement scale designed for and by people living with HIV (PLHIV).

PozQoL is free to use and unique in its adoption across clinical, research, policy and community settings. As a result of its development, Australia is now one of the only countries in the world to include a quality-of-life target in its National HIV Strategy, and this target is measured against data collected through ARCSHS’ HIV Futures survey series using the PozQoL scale. The continued expansion and use of PozQoL is being supported by peer organisations, the pharmaceutical industry (ViiV Healthcare and Gilead Sciences), clinical associations, researchers, and clinical and non-clinical practice partners.

PozQoL is used in clinical and community settings as a client reported measure to assess and engage with patients, in research studies and clinical trials, and by community and peer organisations to measure and track the quality of life of HIV-positive clients. The scale has been translated into 30 languages and has been used in clinical research in 11 countries, as well as in community services and clinics across Australia.

Read about how people have benefitted from using PozQoL across the world

Leading Team: Andrea Grindrod

While death is often thought of as a medical event, health providers cannot address the non-medical needs of recipients of end-of-life care, or their families, carers and friends. These needs – coordinating personal care, childcare, transport, shopping, food, social connection, pets, funerals - are often the source of significant stress.

In 2016, La Trobe researchers Andrea Grindrod and Bruce Rumbold published the community resource and planning tool Healthy End of Life Program (HELP): offering, asking for and accepting help. The intent of the program was to develop a person-centred, collaborative community culture around end-of-life care, where death is understood as a social rather than medical event, and community support is seen as being as important as medical care. The 3-step planning resource was based around identifying the support needs of carers, family and the person receiving care, mapping personal social networks, identifying gaps in support and mapping community help. In 2020, HELP featured in the World Health Organisation’s Global Atlas in Palliative Care and in 2024, the importance of this form of social prescription was recognised in Standard 2 of the 2024 National Palliative Care Standards as a new service delivery model in palliative care.

With funding from the Wicking Trust and the Victorian Department of Health, and in partnership with Palliative Care Australia, the HELP model has now been digitised into the HELP App. Working with multiple industry partners across Australia, both within and external to the health care system, referrals are made to patients, clients, carers and families to mobilise their social support systems through the HELP App, thereby connecting formal care service delivery with informal community-based care networks. The App allows ‘coordinators’ – often family members of those receiving care, carers or recipients of end-of-life care themselves – to set up digital networks to ask for exactly what they need, through the creation of tasks and for these tasks to be coordinated through the network. It also provides tips and resources to promote and support healthy end of life planning for the maximum benefit.

Networks have been created in every state and territory in Australia, with palliative care, healthcare, social, welfare and community services issuing referrals to use the App, to improve social connectedness, reduce stress and avoid carer burnout and isolation, while supporting out-of-hospital end-of-life care. The data collected via the HELP App is generating a new national community-based end-of-life care dataset, offering fresh insights into how everyday Australians show up and support one another at the end of life. This Palliative Care Social Prescribing Service Model will shape policy and practice, in partnership with the palliative care and health sector, to engage the wider community and increase informal social and practical supports that people receive at the end of life. There are also plans to celebrate stories of community support in end-of-life care through a Citizen Science project.

Over the course of developing the HELP program, Andrea Grindrod has become a lived experience researcher, caring for her husband who has stage 4 terminal cancer. Through a film created at their home, Andrea is using their own experience as a way of promoting the need for people to offer, ask for and accept help.

The HELP App