2022 | 024 HEALTH AND MEDICAL RESEARCH IN RURAL, REGIONAL & AUSTRALIAREMOTE
Deakin University, Edith Cowan University and the University of Western Australia showcase community related solutions around diet, food and the importance of a good quality drinking water supply.
The recent climate changes have proved difficult for those living in our more remote areas and so mental health has become a major issue.
Around 7 million people – or 28% of the Australian population – live in rural and remote areas, which encompass many diverse locations and communities. These Australians face unique challenges due to their geographic location and often have poorer health outcomes than people living in metropolitan areas. Data show that people living in rural and remote areas have higher rates of hospitalisations, deaths, injury and have poorer access to, and use of, primary health care services, than people living in major cities.
Currently the NHMRC, one of the major government funds for health and medical research, allocates a miniscule percentage of its investment towards research that is targeted towards improving rural health outcomes. Without better coordination of Australia’s funding we will continue to see breaks in the pipeline, inefficiencies, and exclusions. Strategic, national coordination of Australia’s investment in health and medical research will ensure this valuable funding reaches all Australians, particularly our rural and remote areas who tend to be most Australiansneglected.living
This issue highlights how our remote rural areas are doing it tough and how many of our researchers are working with the community to create projects that are creating better health, lifestyle choices and improving the mental health of our farmers – projects that are benefitting their communities.
Deakin University and the University of South Australia address some of these Healthchallenges.andmedical research in our more remote and rural landscape is incredibly important to this country, and with so many amazing and inspirational stories about the work that is being done around this country, we are so pleased to be able to bring you our largest ever Aissue.common theme across all these articles is the relationships between the researchers, organisations and the community. The success of these projects is only possible because of the understanding between all the participants and the trust they have in each other and their ability to search more and find a Thesolution.recent University Roundtable focused on the factors affecting EMCRs at universities with a specific focus on HMR, a topic that will be explored further in September. While Obesity and its consequences was the topic for discussion with our Health Economics Roundtable Inparticipants.thisissue, we start a new tradition of profiling some of our newest members. Please welcome to Research Australia’s family – Asthma Australia, Crohn’s Colitis Cure, DUG Technology Australia, FAST Australia, and Neuroblastoma Australia. Of course, I can’t finish without mentioning our 19th Health and Medical Research Awards, this year being held on December 8th at the Metropolis in Southbank, Victoria. You are still able to nominate your star researcher via our website. We have already received a number of nominations for our biggest and brightest – we have to start closing the nominations so get moving! Best wishes, Nadia and the Research Australia Team CEO & Managing Director –Research Australia
in remote and very remote areas experience health workforce shortages, despite having a greater need for medical services and practitioners with a broader scope of practice. Deakin University, Flinders University Rural Health SA and James Cook University tell us about some of the ways that they are working towards combating these Storiesshortages.of how we are working with our ATSI communities to bring better screening, diagnostics and treatments for injuries and diseases are highlighted in articles from NARI, James Cook University and the Sax WeInstitute.always think that living in the country is a healthy lifestyle, however research shows that many people have difficulties in accessing clean water and balancing a healthy diet.
Normally navigation of the health and medical research landscape is hazardous and fraught with obstacles but in a land as vast and diverse as ours those obstacles are multiplied a thousand-fold when you look at our regional, rural and remote areas.
2 INSPIRE 024 | 2022
All photos of First Nations People have been published with their permission.
Being able to access services and assistance in a major city is difficult enough, but can you imagine trying to do it when your nearest medical facility is literally thousands of miles away?
Thursday 8
Southbank,MetropolisDecemberBallroomMelbourne
Australian Health & Medical Research & Innovation CONTENTS 08Eventsoverview RESEARCH AUSTRALIA 1410 RESEARCH AUSTRALIA EDITH COWAN UNIVERSITY Healing Right WayNew members 20 UNIVERSITY OF QUEENSLAND Building a medicalsustainablemoreruralworkforce 4 INSPIRE 024 | 2022
Publisher Research Australia Ltd Art Direction Matthew Ware p +61 403 844 763 e matt@objktive.com For Advertising enquiries please contact the Research Australia office on p 02 9295 8546 or e admin@researchaustralia.org researchaustralia.org INSPIRE ONLINE issuu.com/researchaustralia INSPIRE is a publication of Research Australia Ltd ABN 28 095 324 379 384 Victoria Street Darlinghurst NSW 2010 Who can submit articles? Any current member of Research Australia who would like to share a relevant story that affects their organisation including, philanthropic donations and their outcomes, research findings, and any other related health and medical research topic that affects the Australian population. Submission guidelines & deadlines For information regarding how to submit and publishing deadlines visit the Research Australia website Disclaimer The opinions expressed in INSPIRE do not necessarily represent the views of Research Australia. Whilst every effort has been made to ensure accuracy, no responsibility can be accepted by Research Australia for omissions, typographical or inaccuracies that may have taken place after publication. All rights reserved. The editorial material published in INSPIRE is copyright. No part of the editorial contents may be reproduced or copied in any form without the prior permission from Research Australia. © Research Australia 2020. My Twitter : @chriskereCHRISTOPHE KEREBELCHRISTOPHE KEREBEL My Twitter : @chriskere 16KeepingElders Strong and Connected NATIONAL AGEING RESEARCH INSTITUTE 32Puttingaspotlightonpoorqualitydrinkingwater UNIVERSITY OF WESTERN AUSTRALIA 18 Improving social and emotional wellbeing in Indigenous communities SAX INSTITUTE 22ORCHIDstudy THE RURAL CLINICAL SCHOOL OF WA 26Community-centredsolutionstodiet-relatedhealthinequitiesinruralandregionalAustralia DEAKIN UNIVERSITY 30FoodCommunityproject EDITH COWAN UNIVERSITY 24Growingaworkforce from, with and for the bush JAMES COOK UNIVERSITY
40Growingfarmers’wellbeing UNIVERSITY OF SOUTH AUSTRALIA 38Fillingamental health service gap in rural farming communities DEAKIN UNIVERSITY 66Dementiapreventionoutsidecities UNIVERSITY OF THE SUNSHINE COAST 48Researchin and across regional hospital and health systems –connecting for impact JAMES COOK UNIVERSITY 52AgedCareand Telehealth across COVID Borders UNIVERSITY OF NOTRE DAME Australian Health & Medical Research & Innovation CONTENTS 56Puttingthevoice of rural and remote communities at the centre of healthcare MACQUARIE UNIVERSITY 34Researchinthecontextof a global pandemic EDITH COWAN UNIVERSITY 6 INSPIRE 023 | 2021
60 62 You never know what the future holds Mito community unites with researchers to legalise mitochondrial donation 46Telehealthdeliversmorecancerservicesclosertohome TOWNSVILLE CANCER CENTRE 42Flexible,individualisedandonline FLINDERS UNIVERSITY MID NORTH COAST LOCAL HEALTH DISTRICT MITO FOUNDATION 7270 64 68 Closing the Gap requires a new approach to researchtraumasOvercomingofthe past AirRater App Crucial During Bushfire Emergency Safer sleeping for babies TELETHON KIDS INSTITUTEUNIVERSITY OF THE SUNSHINE COASTUNIVERSITY OF THE SUNSHINE COAST UNIVERSITY OF TASMANIA THE LAST WORD 44ORCHIDstudy THE RURAL CLINICAL SCHOOL OF WA 2022 | INSPIRE 024 7 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Research Australia convenes regular special-interest roundtables throughout the year to gain insights from key experts and refine our focus on the issues that matter most to our members.
ECONOMICS
The Research Australia University Roundtable provides a forum for Research Australia’s university members to discuss issues relating to health and medical research which are particular to universities. Membership of the Roundtable consists of individuals nominated by their university. The Roundtable meets three to four times each year. The challenges facing early to mid career researchers (EMCRs) in terms of wellbeing, career structure and employment have been a focus of Research Australia for some time, and in particular a topic raised and discussed several times at the Research Australia University Roundtable. The Roundtable on 18 May included EMCRs nominated by their universities as well as the usual more senior university representatives. The starting point for the conversation was a presentation on a survey of EMCRS conducted at Monash and Melbourne universities. The ensuing discussion focused on the factors affecting EMCRs at universities with a specific focus on HMR. It highlighted a number of different initiatives and approaches at different universities and a significant opportunity to learn more from each other and to cooperate on programs and initiatives. The topic will be explored further at the next Roundtable in September. If you would like more information, please contact Greg Mullins, Head of Policy, at greg.mullins@researchaustralia.org
HEALTH
Research Australia’s tenth Health Economics Roundtable held in June focused on the health economics of obesity. There is a key role for research in implementing the Australian Government’s National Obesity Strategy 20222023 which was announced in March 2022. Speakers took a deep dive into the role of health economics in implementing the National Obesity Strategy and the economic arguments for both lifestyle and therapeutic interventions for obesity. The Roundtable was attended by over 70 representatives from the health and medical research sector. Guests spanned the entire pipeline across academia, medical research institutes, pharmaceutical companies, health systems and government, and their disciplines ranged from health services researchers, implementation scientists and clinician researchers. Guests heard from leaders across the health and medical research pipeline and from government agencies. Novo Nordisk provided an industry perspective of the National Obesity Strategy and the five areas that are key to the successful implementation of the Strategy. Professor Louise Baur AM who is an internationally recognised researcher and paediatrician discussed her work and the research needed for the prevention and management of obesity in children and young people. The Roundtable also heard from emerging researcher, Jaithri Ananthapavan from the Institute of Health Transformation at Deakin University, who discussed her work evaluating long term obesity prevention interventions. Vanessa Prescott from the Australian Institute of Health and Welfare (AIHW) concluded the Roundtable presenting AIHW’s regular monitoring of overweight and obesity in Australia and provided her perspective on how the health and medical research community can collaborate to ensure AIHW has access to useful data. Research Australia has begun planning for the second Health Economics Roundtable of 2022, discussing possible focus areas such as the Health Technology Assessment Review or the Private Health Insurance Rebate.
UNIVERSITY ROUNDTABLE 8 INSPIRE 024 | 2022
ROUND-UPROUNDTABLEROUNDTABLE
2022 | INSPIRE 024 9 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
MEMBERS In this issue of INSPIRE we introduce you to our six newest members, Asthma Australia, Crohn's & Colitis Cure, DUG Technology Australia, FAST Australia, Neuroblastoma Australia, and The Translational Research Institute (TRI) NEW 10 INSPIRE 024 | 2022
2022 | INSPIRE 024 11 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
The charity also provides valuable information to families affected by neuroblastoma and supports them through resources on our website and through the opportunity to connect to other families at events and through social networking. There is also an on-line Family Support Group to connect parents who have a child on treatment for neuroblastoma. Parents can discuss their experiences, talk about their children, the impacts of treatment, share tips and connect with those who understand their situation most. The sessions are facilitated by an experienced social worker. The charity is also funding research in the area of psycho-social support based on feedback from parents. For additional information about Neuroblastoma Australia, please contact info@nb.org.au.
The Translational Research Institute (TRI) is a leading Australian medical research, development and translation facility. It is home to a broad range of cutting-edge research into cancer, chronic diseases, mental health conditions, immunology, genetics, dermatology and more. Situated on Brisbane’s Princess Alexandra Hospital precinct, TRI is a joint venture between Queensland Health, The University of Queensland, the Queensland University of Technology and Mater Research.
TRI has two clinical trial facilities, one based at the Princess Alexandra Hospital and the other at the Centre for Children’s Health Research next to the Queensland Children’s Hospital. The Institute also houses a range state-of-the-art core facilities, including microscopy, flow cytometry, histology, and clinical and pre-clinical imaging.
NEUROBLASTOMA AUSTRALIA
Through events, donations and community outreach, the charity raises vital funds for preclinical research. Neuroblastoma Australia has funded over 11 leading research projects since its inception. A world class Scientific Advisory Board assesses applications for funding to ensure investment is made into research which has clear potential to bring about a difference in the future and which is also in line with lowering toxicity. The charity’s Research Grants Round runs every 2 to 3 years with the grants selected by the charity’s Scientific Advisory Board which is comprised of global experts from the UK and US.
Neuroblastoma Australia is a registered charity started in 2010 by families affected by neuroblastoma. Its main mission is to raise awareness of neuroblastoma childhood cancer and to increase research funding in this area so better and safer treatments can be developed. Neuroblastoma is an aggressive childhood cancer with survival rates being approximately 50% for the more aggressive types. The average age of diagnosis is just two years of age. For those who do survive, a third experience long term effects from their actual treatments, as the treatments themselves are toxic and extensive. The charity supports research which is focused on reducing the amount of toxicity children have to endure as part of their treatment.
TRI houses more than 1000 leading researchers, support staff, students, and innovative MedTech start-ups – including Vaxxas and Microba – as well as industry bodies. The Institute’s priority is partnering scientific development with clinicians and the MedTech sector to ensure new discoveries progress quickly and improve patient outcomes and commercial return. To this end, TRI is at the interface of science, medicine and industry. The Institute’s vision is Exceptional Science, Healthier Lives.
TRI’s CEO is Professor Scott Bell, who is also a Senior Thoracic Physician at Brisbane’s Prince Charles Hospital. Professor Bell co-led the development of a new global blueprint for the care of people with cystic fibrosis. His work will help the 3500 Australians with the incurable condition to live decades longer.
TRANSLATIONAL RESEARCH INSTITUTE (TRI)
TRI has been awarded up to $60 million in funding from the Queensland Government to build a new medical manufacturing facility known as Translational Manufacturing@TRI (TM@TRI). The facility will support early-stage companies that are developing new vaccines, medicines and devices by providing high-tech manufacturing suitable for clinical trials.
DUG TECHNOLOGY AUSTRALIA (DUG)
Our constant focus on research and development combined with a wealth of industry experience has equipped us with the technical excellence to support a diverse industrial client-base that includes life sciences and healthcare, biotech, medtech, as well as the resources, government and education sectors. We continue to invest and innovate at the forefront of HPC, working towards a climate-positive future. Please feel free to reach out to us at info@dug. com for more information or to speak with one of our dedicated support team.
DUG Technology is an ASX-listed technology company headquartered in Australia, specialising in reliable, green high-performance computing (HPC). Built on a strong foundation of applied science and a history of converting research into practical, real-world solutions, we support and enable our clients to leverage big data and solve complex problems. We are proud to design, own, and operate a network of some of the largest and greenest supercomputing installations on Earth.
Part of building research capacity in Australia includes our major project, the Global Angelman Syndrome Registry, an online caregiver-initiated registry that collects data from individuals in over 70 countries, we also collaborate and cofunded global research. Research into Angelman syndrome has exploded in the last ten years. There is real optimism for treatments in the near future. Multiple clinical trials are underway internationally and more are in development, Building infrastructure and expertise in Australia to allow Australian families the opportunity to participate in trials is our immediate priority, this infrastructure enable the delivery of a uniform standard of care to all Australian individuals diagnosed with AS and also helps to address the large underdiagnosis rate.
Utilising our patented immersion-cooling technology, we offer green, cost-effective compute to our clients. Coupled with our focus on data sovereignty and security, a dedicated Australian-based HPC support team and domainspecific expertise, we empower our clients to focus 100% on what matters most to them, helping them accelerate the translation of their research and data sets and commercialisation of their intellectual property assets.
FAST Australia launched in September 2010. Inspired by the mission and energy of FAST in the United States we are driven to address the lack of research and understanding of Angelman syndrome in Australia. We are dedicated to assisting individuals living with Angelman syndrome to realise their full potential and quality of life through funding research, education, and advocacy.
12 INSPIRE 024 | 2022
THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST AUSTRALIA)
Angelman Syndrome (AS) is a rare neurogenetic disorder that affects approximately 1700 people in Australia. Unfortunately, it is largely undiagnosed. Caused by the lack of just one functional gene, AS has devastating effects including global developmental delay, problems with movement and balance, lack of speech, seizures, severe cognitive impairment, and feeding and sleep difficulties.
Crohn’s Colitis Cure’s (CCCs) dual purpose is to ‘transform patient outcomes’ in Inflammatory Bowel Disease (IBD) and be ‘instrumental in finding a cure’
ASTHMA AUSTRALIA IS A FOR-PURPOSE, CONSUMER ORGANISATION WITH A HISTORY OF IMPROVING THE LIVES OF PEOPLE WITH ASTHMA. While we have come a long way in our understanding and management of asthma thanks to the work of outstanding researchers, we still have a long way to go to reduce the impact of asthma on Australians, the healthcare system and society in general. We hope Asthma Australia supported research will lead us to a time where preventative measures for asthma are well-known and routinely adopted by the health industry and policy makers alike. We want those living with asthma to be empowered with the best tools to manage their condition based on individual needs. While uncontrollable environmental triggers may still exist, we want people living with asthma to have adequate support, resources and information to manage them more easily. We also need to increase our investment into the short, medium and long term impacts of the changing environment on people with asthma in order to pursue the change we all hope for, and which people with asthma need.
CROHN'S COLITIS CURE
What has followed over the last 10 years is the development of a cloud-based software tool (Crohn’s Colitis Care – CCCare), which benefits from very informed & bought-in clinical/ community expertise in the initial and ongoing design. This knowledge-based, physical “asset” (CCCare) differentiates us from most healthfocused charities. It is this asset which enables ongoing collection, refresh and use of patient data for research into IBD. Learn more about CCCare by visiting https://c-c-cure.org/cccare/.
CCC is at a ‘pivot point’ in its’ journey, having recently completed the development of a 3-year strategy aimed at transforming both our ambition and trajectory. In line with our stated purpose and ambition, we are moving from a primary focus on the ongoing development of our technology core, to placing the majority of our effort on the research component. We are in ongoing conversations to expand our partner base and welcome additional discussions from organisations who share our vision to transform patient outcomes and be instrumental in finding a cure to IBD.
2022 | INSPIRE 024 13 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
CCC began its life in 2011 with a goal to create a technology asset that would make patient care more efficient, provide better outcomes for patients and clinicians, and develop a database which could be used to facilitate research into potential cures for Crohn’s Disease and Ulcerative Colitis.
Healing Right Way Aboriginal Brain Injury Coordinator Rebecca Clinch with stroke survivor Justin Kickett
14 INSPIRE 024 | 2022
With 70% of Aboriginal people with brain injury living in rural and remote areas of Australia, where rehabilitation services are scarce, the new and unique role of the Aboriginal Brain Injury Coordinator is contributing to models for improving accessibility of rehabilitation services and support for Aboriginal brain injury survivors and their families.
Healing Right Way (NHMRC funded 2017-2022) is the first clinical trial to address these issues, aiming to enhance rehabilitation services and ultimately quality of life for Aboriginal people with brain injury. With a large team of Aboriginal and non-Aboriginal researchers and clinical and community partners across the state, the study is based on the recommendations of Aboriginal survivors of brain injury and their families provided in our previous studies. These included having more guidance, information and care coordination whilst in hospital and for the months following discharge. The recommendation that this be provided by an Aboriginal health professional was repeatedly emphasised. Further improvements in nonAboriginal health staff’s knowledge and skills surrounding respectful and culturally responsive communication were also seen as vital.
The first clinical trial aiming to improve rehabilitation services and quality of life for Aboriginal people with acquired brain injury.
To address this, Healing Right Way delivered a twopronged intervention in eight regional and metropolitan hospitals across WA. This included cultural security workshops for 250 hospital staff facilitated by local Aboriginal cultural experts and a study team member with clinical expertise in brain injury. The workshops used case studies to focus on ways to enhance access to rehabilitation services via improved communication and culturally responsive practices. Responses from workshop participants included the following:
ABI disproportionately affects Aboriginal people in Australia. ABI is experienced up to three times more frequently by Aboriginal people than non-Aboriginal people. While nation-wide data is scarce, the team behind the novel Healing Right Way study has previously found that 70-80% of Aboriginal people with brain injury in Western Australia (WA) live in rural and remote areas.
An acquired brain injury (ABI) can change lives overnight. Through a stroke or traumatic brain injury after a car accident, fall or assault, a person can be left with communication, physical and/or cognitive difficulties that can significantly impact their everyday function and their relationships. Families and communities surrounding the person with the brain injury are also affected as they try to support their loved one in their recovery journey, with long-term carer strain well documented.
WAYRIGHTHEALING
Access to brain injury rehabilitation services for Aboriginal people is frequently hindered by complex medical systems and lack of culturally secure service delivery. This is further complicated by huge distances between peoples’ place of residence and rehabilitation services. For many Aboriginal people with ABI, accessing rehabilitation often means being flown thousands of miles away from Country to an unfamiliar hospital environment in a metropolitan area.
2022 | INSPIRE 024 15 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Translation of the Healing Right Way findings will incorporate learnings from the experience of implementing the study’s intervention across rural and metropolitan areas, particularly in the context of the COVID-19 pandemic. Translation includes exploration of the Aboriginal Brain Injury Coordinator role in a variety of organisations including primary care; disseminating brain injury related materials for ongoing cultural security training; and increasing awareness of ABI in rural and remote communities. Healing Right Way will inform services and researchers alike regarding advocating for and developing rehabilitation models that are informed and led by Aboriginal people.
People get forgotten about.”
The second component of Healing Right Way was the implementation of the novel Aboriginal Brain Injury Coordinator role. This international-first saw the employment of nine Aboriginal health professionals to provide much needed advocacy, education and support services to Aboriginal brain injury survivors from the acute phase to six months after their injury. The Coordinators were employed by study partners across the state and collectively provided a service to people in metropolitan, rural and remote areas of WA.
The model for the Coordinator was based on a communitybased neurological care nurse role established by one the study partners (the Neurological Council of WA). It was expanded to reflect an Aboriginal model of health whilst also focussing on brain injury and rehabilitation needs.
The work of the Aboriginal Brain Injury Coordinators was varied and responded to the needs faced by the brain injury survivors (aged between 19-85 years) and their families. The Coordinators brought a vital cultural knowledge that helped support the person in a holistic way and identify gaps in care. One of the Coordinators shared her surprise at the lack of services for people with brain injury: and it’s still hard to get services now.
Author: Professor Beth Armstrong is Foundation Chair in Speech Pathology at Edith Cowan University in Perth. She leads a multidisciplinary team of Aboriginal and nonAboriginal researchers focused on improving service delivery and quality of life for Aboriginal people after brain injury. Her research is based on collaborative community and health service provider partnerships including those with WA Aboriginal and Community Controlled Health Services, the WA Department of Health, the Neurological Council of WA and the Stroke Foundation. Professor Armstrong has attracted ongoing funding from the NHMRC to support this program of research. Such amazing training with lots of opportunities to see real life case studies and practically think through and plan what you would do as a clinician to help the person. I already feel empowered to start making changes to supporting Aboriginal people myself and improving the policies for this in the hospital.”
Coordinator activity was aimed at easing the transition points in the rehabilitation journey e.g., from acute care to rehabilitation, and from rehabilitation to home or residential care. Coordinators often went beyond usual health-based connections and liaised across sectors with government and non-government agencies dealing with housing, finances, Guardianship, criminal justice.
(Physiotherapist)
Three art centres were central to leading the research: Mangkaja Arts Resource Agency on Bunuba Country
Researchers employed by the three academic institutions were invited by their co-researchers at the centres to sit down with and travel alongside staff, artists and directors from 2017 to 2019. During this period, researchers spent time with artists and staff in each centre, accompanied staff on their visits to artists living in residential aged care facilities and outlying communities, travelled with artists to collect grass for weaving, helped with transporting older artists and directors to and from the studio, and made countless cups of tea along the way.
KEEPING ELDERS STRONG AND CONNECTED 16 INSPIRE 024 | 2022
– Fitzroy Crossing, Western Australia; Ikuntji Artists on Pintubi-Luritja Country – Haasts Bluff, Northern Territory; and Tjanpi Desert Weavers of the Ngaanyatjarra Pitjantjatjara and Yankunytjatjara Lands of NPY Women’s Council (Aboriginal Corporation), working across the tri-state border lands of Northern Territory, South Australia and Western Australia. The collaboration also included Tjungu Aged and Disability Service of NPY Women’s Council; Kimberley Aged and Community Services of WA Country Health Services; the National Ageing Research Institute, The University of Western Australia, and Flinders University.
There are about 90 Aboriginal and Torres Strait Islander community-controlled art centres located across the many Countries that comprise what is now referred to as Australia.
Most of the centres are in located in geographically remote locations far from urban density, and it is in three of these centres where the participatory research collaboration took Formedplace.in2016, the research collaboration was successful in attracting a Dementia and Aged Care innovation grant through the Department of Health (2017-2021). The initial aims were to explore how three Aboriginal community controlled art centres were supporting older people and if they were collaborating with their local aged care providers.
IMMERSION AND REVELATION
Aboriginal and Torres Strait Islander Community Controlled Art Centres
The research outcomes respond to specific recommendations from the recent Royal Commission into Aged Care Quality and Safety. These include prompting Aged Care Providers to find ways for older Aboriginal and Torres Strait Islander Australians to remain on, and maintain a connection with, Country and their communities, and to partner with Aboriginal and Torres Strait Islander controlled organisations to deliver appropriate care.
During this period, the research expanded from exploring how the art centres supported older people to consider how the older people themselves, many of whom were Elders in their community, were supporting their centres.
2022 | INSPIRE 024 17 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Ms. Mackell said, “we let go of labels such as ‘dementia’ and ‘older people’, and a model of care firmly embedded within each of the centres was identified.” This holistic model is one in which an older person’s role and belonging to their centre, community and the cultural protocols of the Country where they are situated is central. As Mangkaja artist Annette Lormada explains “it’s not only good for us, but the younger ones coming behind… for young to old, to be together”.
Our collaboration calls on governments, and health and aged care providers, to recognise and resource the vital work art centres do in their communities. Art centres have been established by their communities, and we need to listen, value, and learn from their expertise,” Ms Mackell says.
Additionally, the research supports calls from Aboriginal and Torres Strait Islander health experts to shift from models of care that focus on individual and predominantly biomedical aspects of care, to ones that consider collective wellbeing and centralise culture, intergenerational connection, and the cultural and social determinants of health.
Authorship and Research team: Paulene Mackell, Frances Batchelor, Kathryn Squires, Briony Dow, Jessica Cecil, Scott Fraser, Roslyn Malay, Maree Meredith, Lynley Nargoodah, Belinda Cook, Margaret Smith, Michelle Young, Douglas Multa, Chrischona Schmidt. These immersive experiences, coupled with 99 semistructured interviews, and a national survey of art centres, revealed the ways in which art centres located across Australia support the physical, cognitive, social, emotional, economic, and cultural wellbeing of older people every day. The art centre staff were also observed assisting older people, many of whom speak English as a second, third or fourth language, to navigate access to aged and health care services.
Lead author: Paulene Mackell is a Research Fellow at the National Ageing Research Institute and a PhD Candidate at RMIT University. She has been privileged to work alongside all collaborators to generate this innovative evidence base.
Paulene Mackell, from the National Ageing Research Institute, said “it was striking that this support is carried out in a context that receives no recognition or resourcing from health or aged care policy or funding frameworks. It became apparent we had a lot to learn from what was working well in each centre”.
To hear directly from the artists, staff and researchers involved in the research, watch the film Art Centres Keep our Elders Connected, which was showcased on SBS during NAIDOC week in July 2022 and is now available on demand
ROLE OF ELDERS UPHELD Expanding the research revealed that art centres are safe places for older artists to fulfil their roles as Elders, facilitating the transfer of knowledge and culture to younger generations within their communities. The team learnt that these roles are upheld in the context of multiple morbidities including dementia, and in many instances after admission to residential aged care. They also learnt of several partnerships between art centres and aged care providers that assist each organisation fulfil their overall goals.
For more information and to watch the film, click here Penny K Lyons and Lynley Nargoodah, Mangkaja Arts Resource Agency,Crossing,Fitzroy2019
SOCIAL
IMPROVING AND COMMUNITIESINDIGENOUSWELLBEINGEMOTIONALIN
Aboriginal Community Controlled Health Services are exploring new ways to support social and emotional wellbeing and chronic disease in Aboriginal communities, in partnership with the Sax Institute.
18 INSPIRE 024 | 2022
Using culturally adapted tools, yarning circles and selfreported information on the impacts of COVID-19, the project is capturing important data. At the same time, ACCHS staff are being invited to participate in programs designed to build skills to support their own social and emotional wellbeing, and that of others.
SUPPORTING HEALTH CARE WORKERS IN ACCHSS
The Indigenous Led Evaluation of Aboriginal Programs (ILEAP) project is evaluating three programs designed and led by Aboriginal Community Controlled Health Services, with the aim of identifying effective approaches in critical health areas, such as social and emotional wellbeing and chronic ACCHSdisease.havedeveloped
These early findings, together with analyses to come on areas of greatest need and the effectiveness of interventions, are being used by ACCHSs to improve service planning and programs both locally and across the state.
The outcome of this project is likely to see increased Aboriginal-led evaluation of programs and better translation of evidence into practice in ACCHSs, increasing access to essential primary care services. The work will provide valuable insights into the parts of each program that are working well and the opportunities to further strengthen and build on what’s been established.
Author: Dr Martin McNamara is Deputy CEO of the Sax Institute and Sandra Bailey is Senior Advisor in Aboriginal Health, Sax Institute
They have identified concern among health care workers and their community around the risk of infection, and high levels of community distress during times of peak infection. Most staff have reported high levels of job satisfaction and resilience, along with relatively low levels of emotional exhaustion, despite the challenges of dealing with the pandemic. A smaller but significant group, however, are more severely challenged by the impact of COVID-19 and require additional support.
PROGRAM EVALUATION
The Sax Institute is an independent, not-for-profit organisation that improves health and wellbeing by driving better use of evidence in policies, programs and services. The Institute works with governments, health organisations, research organisations and a network of experts nationwide to analyse policy problems and find the best evidence-based solutions.
The project takes an Aboriginal community-led approach, working closely with ACCHS health workers. The ACCHSs control how the research is conducted using culturally adapted tools and yarning circles and take the lead in finding ways to support their wellbeing that works for them and their communities.
The pressures of the pandemic have been stressful for much of the health workforce and have negative impacts on mental health, but little is known about how to best support health care workers in the pandemic era.
Two ongoing projects, focused on mental health and the impact of innovative programs in Aboriginal communities across NSW, typify this collaborative approach.
The ILEAP project is being conducted in close collaboration with Aboriginal leaders, primary care workers and the community. It is founded on the Institute’s strong, long-term collaborations with the Aboriginal health sector, including the Tharawal Aboriginal Corporation in Campbelltown, Orange Aboriginal Medical Service in rural NSW, Walgett Aboriginal Medical Service in remote NSW, and the Aboriginal Health & Medical Research Council.
2022 | INSPIRE 024 19 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
The Sax Institute has longstanding partnerships with Aboriginal Community Controlled Health Services (ACCHSs) to support and develop health research that will make a real difference to outcomes. In these partnerships, the ACCHSs nominate their research priorities, control how the research is conducted and take the lead in determining what works for them and their communities. The data collected is immediately available to the ACCHSs for use in planning.
One of these projects, funded by a NSW Health COVID-19 research grant, is focused on the social and emotional wellbeing of health care workers in ACCHSs in remote, regional and urban communities in NSW. Health professionals have been at the forefront of managing COVID-19 and its flow-on effects in their communities.
a range of innovative primary care programs that directly support their communities.
In order to share the knowledge developed from these innovative programs, evaluation is essential and this new grant is enabling this to occur.
This is set to change, as research underway through the partnership is testing community-nominated strategies for supporting ACCHS workers as well as monitoring changes in the social and emotional wellbeing of ACCHS staff over an 18-month period.
Early and as yet unpublished findings have documented major shifts in the work and work practices of ACCHS staff as they support their communities through different phases of the pandemic.
These research projects are just two examples of the inspiring work at the Institute made possible thanks to our long-running partnerships with Aboriginal Community Controlled Health Services.
In another project, much-needed evidence about the effectiveness of innovative Aboriginal-led health programs is being produced.
WORKFORCERURALSUSTAINABLEMEDICAL New Australian research from 10 universities supporting rural medical training demonstrates the value of meaningful exposure to living and working in regional, rural and remote areas to growing the medical workforce 20ABUILDINGMOREINSPIRE024 | 2022
“Tree at Pomi with Wagga in distance” is the view from Pomingalarna Reserve (Wiradjuri Country) with the outskirts of Wagga Wagga in the distance. 2022 | INSPIRE 024 21 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
COMBINED DATA ON GRADUATE OUTCOMES
While individual universities had already been collecting and publishing their graduate outcomes in terms of rural practice, there was a need to combine data from multiple universities to get a broader, less biased sense of the effectiveness of government incentives on the recruitment and retention of medical practitioners in non-metropolitan Inareas.arecent study published in the Medical Journal of Australia1, combined data from the majority (n=10) of universities who belong to the Federation of Rural Australian Medical Educators (FRAME) showed that eight years after graduation, graduates with rural backgrounds and those who participated in extended undergraduate rural training were significantly more likely to be both practising and remaining in regional and rural areas.
The funding of a national program of Rural Clinical Schools (RCS) and complementary University Departments of Rural Health (non-medical health professionals) has provided the infrastructure and academic networks necessary for local teaching that can foster and sustain a rural medical workforce.
Such programs aim to grow the rural workforce through improved selection, targeting rurally interested students; and providing meaningful exposure to both living and working in rural areas during medical training.
This study’s evidence also supports Australia’s expansion of ‘end to end’ medical pathways, whereby the majority of training for doctors occurs outside metropolitan areas and increased selection of local students is desired. Whilst a 12-month period remains the standard model of rural exposure, most universities now strive to offer longer options, along with more targeted selection processes, due to the demonstrated stronger rural workforce outcome.
Finally, this study demonstrated a continued movement towards smaller rural and remote areas between 5 and 8 years after graduation. This likely relates to both some medical graduates completing their specialty training and thus having less obligation to be in metropolitan settings for their training, as well as general practice trainees being relatively unrestricted in their work location. This locational trend is encouraging and supports the premise that many graduates may be required to initially complete training in metropolitan and large regional centres but are still choosing to move to smaller centres once they complete vocational training elements that cannot be done locally.
The COVID-19 pandemic has further exacerbated the situation through trends including larger movement of people from urban centres to rural and regional areas and reduced ability to fill (rural) workforce shortages through international recruitment, thus placing increased pressure on the already stretched rural medical workforce struggling to meet community demand.
Several government strategies have been supported for 20+ years in an effort to increase the number of doctors working in rural, remote and regional Australia to address workforce shortages in these areas.
While it is possible to undertake general practice training in most locations, only a select few specialities currently offer extended periods of vocational training in regional and rural areas.
22 INSPIRE 024 | 2022
Rural Australians have long experienced reduced access to both generalist and specialist doctors and higher rates of chronic disease with subsequent poorer health outcomes.
Retention in rural practice was higher among graduates with extended rural training regardless of their background. Graduates with an urban background who participated in extended rural training (RCS placement) were twice as likely to remain in regional, rural and remote areas between 5 and 8 years after graduation as urban background students who did not participate in extended rural training. This highlights that student selection and rural training opportunities during medical school are having prolonged influence beyond the early post-graduate years.
2022 | INSPIRE 024 23 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Although eight years is a substantial follow-up period, it is still considered a short period for completing all components of the extensive post-graduate vocational training requirements in Australia.
We are currently collecting data on the 10-year practice locations of the 2011 graduating class, in addition to their specialty completion data, most of which involves training in metropolitan tertiary centres. At this point, most graduates will no longer be bound by restrictions created by limited specialist training locations. This will provide an even more informative snapshot of RCS graduates’ destinations, adjusted by specialty type.
Author: Dr Alexa Seal is a research fellow at the School of Medicine Sydney (Wagga Wagga Rural Clinical School), The University of Notre Dame Australia. A/Prof Matthew McGrail is an associate professor at the Rural Clinical School, University of Queensland.
1Seal AN, Playford D, McGrail M, Fuller L, Allen P, Burrows J, Wright J, Bain-Donohue S, Garne D, Major L and Luscombe G. (2022). Influence of rural clinical school experience and rural origin on practising in rural communities five and eight years after graduation. Medical Journal of Australia. 216(11):572-577.
Our findings complement other research demonstrating the importance of building the capacity of medical training in regional and rural areas across all stages, in supporting a more sustainable rural medical workforce.
The key issue is sustainability of the regional, rural and remote medical workforce. Results from our recent study showed evidence of a promising rural stability. One of the strengths of this study is that we are tracking the career trajectory of individual graduates over time, without bias of single university evidence.
View of Wagga Wagga from Explorer Park.
Data show health outcomes for people living in RRR communities fall below those of their urban counterparts with shorter life expectancy and a greater burden of disease. Understanding factors contributing to these disparities is essential to addressing them.
24 INSPIRE 024 | 2022
REGIONALRURAL, AND REMOTE FORFROM,WORKFORCEGROWINGRESEARCH:HEALTHAWITHANDTHEBUSH
Health professionals living and working in RRR communities share a passion for improving the health outcomes of their communities and are well placed to
Bringing rural, regional and remote (RRR) health and health services to levels equivalent to those experienced in Australian cities requires rural health researchers.
Landscape shot outside Charters Towers taken by Meryl Churchill ,QLD. Below: JCU Cohort Doctoral Studies Program candidates attending a Cohort workshop. Left to right – Ms Louisa D’Arrietta, Ms Jenifer Darr, Ms Amy Brown.
The CDSP has operated at JCU since 2011 with over 100 completions, a retention rate between 82 and 90%, and an average completion time of 3.35 full-time equivalent years. The Cohort model brings research candidates together in groups to commence and journey through their degrees as interacting cohorts. This model provides a peer group which is essential for remotely located, external, part-time candidates. The candidates benefit from collegial networking, peer support and Theirlearning.research education goes beyond their own research focus and is enhanced by learning about their peers’ research, often leading to unique problem solving approaches stimulated by exposure to a diverse array of research methods and topics.
Author: A/Prof Melissa Crowe is the Head of the Cohort Doctoral Studies Program at James Cook University. Melissa is enthusiastic about improving the higher degree by research experience, particularly for external, part-time candidates.
ADDRESSING THE CHALLENGE OF UNDERTAKING RESEARCH TRAINING
Upskilling RRR health professionals to undertake research whilst living and working in a RRR community is a model that has been successfully implemented by the James Cook University (JCU) Cohort Doctoral Studies Program
REMOTELY
COMMUNITY BENEFIT
The CDSP has a strong emphasis on publishing research and research translation. Writing circles and retreats are offered regularly along with publicationfocused training. Cohort candidates are encouraged to contemplate their target audience (community, health professionals, policy makers, researchers) and multiple dissemination mediums (conferences, community forums, social and mainstream media, professional publications, journals).
The CDSP also encourages candidates to consider research translation into practice. Just some of the many examples are research leading to the development of a national culturally-sensitive smoking cessation program for pregnant Aboriginal and Torres Strait Islander women; research influencing NSW Health tuberculosis policies for inclusivity of Aboriginal Australians; and research examining at-home infusion pump drug delivery in the tropics which resulted in alterations to practice . Research supervisors of Cohort candidates have the advantage of working on innovative projects in geographical areas of need where research outcomes are orientated towards solving local health problems. Health professionals undertaking a research degree within the CDSP benefit from their supervisors’ expertise and from the rich research environment provided by their peers and Cohort Researchmentors.engagement of health professionals who live and work in RRR communities has many benefits beyond the educational gains of the individual. These health professionals not only understand the health needs of their communities, they also have important links in the community and are likely to remain in the Thiscommunity.Harnessing solutions that arise in rural and regional areas for local problems builds regional capacity, often has implications for health care more broadly, and avoids one size fits all solutions.
Recent research comparing CDSP candidates with comparable part-time and full-time non-CDSP candidates demonstrated that CDSP candidates were significantly more likely to publish four or more peerreviewed publications from their PhD research, and there were no Cohort candidates who did not publish their research.
Cohort candidates also benefit from regular research education delivered on-campus in two one-week blocks each year to facilitate attendance by working health Theprofessionals.research education workshops are mapped to candidate progress, covering topics targeted to their training needs and stage of candidature. Another important feature of the CDSP is the support offered by experienced academic mentors with diverse research backgrounds and skills. Cohort mentors work alongside the candidates and their supervisors, providing guidance on research processes and policies. Mentors also provide pastoral support, helping candidates maintain research motivation when other life priorities demand their attention. Candidate feedback indicates that the mentor and peer support are important contributing factors to the program’s high retention rate.
2022 | INSPIRE 024 25 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
identify research gaps, and undertaking a research degree is an effective way to facilitate research whilst developing research skills.
This(CDSP).innovative program supports working health professionals to complete a research degree. Candidates include professionals working in allied health, medicine, nursing, dentistry and pharmacy in regional and remote areas of NSW, NT and QLD (including the Torres Strait).
However, undertaking a part-time research degree whilst working in a RRR location poses several challenges, including access to supervisors, education opportunities, university experts and services, along with difficulties navigating university systems and connecting with other research candidates. These challenges result in lower completion rates for external, part-time candidates.
Young adults living in rural and disadvantaged communities have the lowest intakes, presenting a high risk for ongoing rural health disparities as this generation ages1,6,7. Despite this, research and funding investment to improve diets in these high risk populations is scarce9,10
If every Australian ate an additional half cup of vegetables/ day, health expenditure would reduce by AUD$100M/ year5. The benefits of eating more vegetables are clear, yet fewer than 10% of Australians meet recommendations for vegetable intake8
As a result, rural health care systems are burdened by higher rates of risk factors for chronic diseases, such as high blood pressure and obesity2. Poor diet is the leading modifiable risk factor for chronic disease3 and that attributed to heart disease alone costs the Australian economy $27 billion per year4. By improving diets there is significant potential to prevent burden on health care systems and save hundreds of lives each year in rural Australia.
26 INSPIRE 024 | 2022
Australians living in rural and regional communities (referred to as ‘rural’ herein) are more likely to die early and experience higher rates of preventable disease than those living in the cities1. There is an unacceptable gap in access to health services in these areas and multiple barriers to preventative and clinical care exist.
ANDHEALTHSOLUTIONSCOMMUNITY-CENTREDTODIET-RELATEDINEQUITIESINRURALREGIONALAUSTRALIA
SOLUTION
Our participatory research design:
We wish to acknowledge the young adults, local government and non-government organisations involved in this research, as well as our diverse academic team from across Deakin University, Sydney University, Edith Cowen University and CSIRO.
3. Afshin A, Sur P, Fay K, Cornaby L, Ferrara G, Salama J, et al. Health effects of dietary risks in 195 countries, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. The Lancet. 2019;393:1958-72.
To date, our co-design workshops with young adults, local government and non-government organisations show a strong need for a multi-pronged solution at the individual and community-level. We look forward to sharing more of these findings once published.
4. Deloitte Access Economics. ACS in Perspective: The importance of secondary prevention 2011 [Available from: Report%20ACS%20in%20Perspective%20Nov%202011.pdf].deloitteaccesseconomics.com.au/uploads/File/Final%20https://www.
8. Australian Bureau of Statistics. National Health Survey 2017-18: First results 2018 [Available from: results/latest-release].health/health-conditions-and-risks/national-health-survey-first-https://www.abs.gov.au/statistics/
9. Alston L, Partridge SR. Limited dietary interventions in rural Australian communities: A systematic review. Nutr Diet. 10.2020;78(1):57-68.AlstonL,JiaS,Raeside R, SR P. Under-investment in nutrition research for at-risk populations: An analysis of research funding awarded in Australia from 2014-2021. Accepted to Nutrition & Dietetics. 2022.
• facilitates collaboration across policy makers, nongovernment organisations and academic disciplines
• ensures that our partners are included throughout, supporting the rapid translation of outcomes into community settings
We are deeply grateful for the support from the Victorian and Western Australian communities participating in this project and are encouraged by the positive feedback from participants:
5. Deloitte Access Economics. The impact of increasing vegetable consumption on health expenditure 2016 [Available from: vegetable-consumption-health-expenditure-impact.html].www2.deloitte.com/au/en/pages/economics/articles/increasing-https://
INSPIRE 024 27 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
6. Alston L, Walker T, Kent K. Characterizing Dietary Intakes in Rural Australian Adults: A Systematic Literature Review. Nutrients. 2020;12(11):3515.
11. Chisholm M, Russell D, Humphreys J. Measuring rural allied health workforce turnover and retention: what are the patterns, determinants and costs? Aust J Rural Health. 2011;19(2):81-8.
Author: Lead: Dr Katherine Livingstone, Registered Nutritionist and NHMRC Emerging Leadership Fellow in the Institute for Physical Activity and Nutrition (IPAN) at Deakin University. Co-lead: Dr Laura Alston, Accredited Practising Dietitian and National Heart Foundation Postdoctoral Research Fellow in the Institute for Health Transformation at Deakin University. 2022 |
Rural communities are characterised as visiting their GPs less often and have reduced access to nutrition professionals than metropolitan communities, mostly due to health care workforce challenges and geographical barriers11. Digital health solutions, such as tele-health and web-applications, offer an accessible and inexpensive delivery model for rapid translation of interventions into rural communities that can be personalised to meet the needs of the user12.
A PERSONALISED DIGITAL HEALTH
And for me, the same, getting the opportunity to participate and say what can work for us, ‘cause sometimes you get like the little handouts and magazines and stuff and you look at them and you’re like, “Oh, man, that’s not gonna work for us,” and then you don’t glance at it, whereas now, just being able to be involved in it and then see how it evolves would be really exciting.”
12. O’Connor S, Hanlon P, O’Donnell CA, Garcia S, Glanville J, Mair FS. Understanding factors affecting patient and public engagement and recruitment to digital health interventions: a systematic review of qualitative studies. BMC Med Inform Decis Mak. 2016;16(1):120.
1. Australian Institute of Health Welfare. Rural and remote health 2019 [Available from: australians/rural-remote-health].https://www.aihw.gov.au/reports/rural-remote-
Our Deakin University-led research aims to co-design a community-centred and personalised digital health solution to increase vegetable intake and variety in young adults living in rural communities. We aim to help address diet and health inequities in these communities and to provide real-world evidence to support full translation into policy, practice and local rural health systems.
2. Alston L, Allender S, Peterson K, Jacobs J, Nichols M. Rural Inequalities in the Australian Burden of Ischaemic Heart Disease: A Systematic Review. Heart Lung Circ. 2017;26(2):122-33.
7. Livingstone KM, Burton M, Brown AK, McNaughton SA. Exploring barriers to meeting recommendations for fruit and vegetable intake among adults in regional areas: A mixed-methods analysis of variations across socio-demographics. Appetite. 2020;153:104750.
• involves consumers in every stage of the research process to ensure the intervention will meet the needs of people who will use it
“We have been assessing food security and dietary intake to inform interventions on the APY Lands since 1986 and, despite everyone’s efforts, nutrition and diet-related health had been getting worse, reflecting the dominance of unhealthy products and rising food insecurity in broader Australia,” Professor Lee said.
“But since this concerted intervention in 2018, participating stores have improved the number, range, quality and price of fresh fruits and vegetables, lean meats and wholegrain cereals, improved product placement and promotion, and provided healthy takeaways, to help make healthier choices the easiest choices.”
“The amazing results included the first decrease in over 40 years of energy intake from unhealthy food and drinks – down from 45% to 39%. We saw a reduction in sales of sugary drinks from 60% to 40% of all drinks, and a 45% increase in sales of fruit and vegetables. These results were consistent with a similar project run by the Minjilang community in Arnhem Land in the 1980s, where biomedical indicators of nutritional status were also assessed every three months, which showed dramatic improvements including reversal of diabetes, reduction in heart disease risk, and normalisation of body mass index (BMI).”
28 INSPIRE 024 | 2022
Professor Lee said it was important for the decisionmaking to remain with the communities, to build on vast local and traditional knowledge and ensure data sovereignty.
Funded by the Medical Research Future Fund (MRFF), the project harnessed community leadership to implement strategies to improve food supply, and practical activities – such as cooking demonstrations, development of recipe posters, and food preparation with kids – to fuel demand for healthy choices.
Results of an innovative research project with remote communities have demonstrated how rapid, effective improvements can be made to reduce risk of diet-related chronic disease.
The increasing cost of living in Australia has put a new spotlight on the issue of food security – when all people, at all times, have physical, economic and social access to sufficient, safe, and nutritious food to meet their dietary needs and food preferences for an active and healthy life.
The project co-designed by Ngaanyatjarra Pitjantjatjara Yankunytjatjara (NPY) Women’s Council, Nganampa Health Council, Mai Wiru Regional Stores Aboriginal Corporation and The Australian Prevention Partnership Centre targeted availability, affordability, accessibility and promotion of healthy food to improve diets and food security in the APY Lands.
A collaborative research project with remote Aboriginal communities on the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands in South Australia saw an increase in the amount and proportion of healthy foods and drinks sold – the first such improvement in over 40 years.
Professor Amanda Lee who was involved in the project said because most remote Aboriginal communities have a single food outlet, store sales turnover data is a good indicator of community members’ dietary intake. She explained this study provided insights into broader nutrition issues.
This renewed focus also highlights that remote Aboriginal communities continue to be most impacted by food insecurity which is a significant contributor to poor health, underscored by ongoing effects of colonisation, entrenched poverty, social disadvantage and systemic failures. Investing in Aboriginal nutrition and improving food security, particularly in remote areas, will be key to closing the gap on health and life expectancy.
REVERSING THE TREND
FOODHUNGRYCOMMUNITIESABORIGINALFORSECURITY
implemented nationally at scale. Importantly, the project took a strengths-based approach and built on Indigenous knowledges. The main dietary message was to “eat store foods that are most like bush foods”. All organisations worked with the communities to improve capacity and build on traditional food knowledge and skills.
Craig Woods shopping in the Ininti store, Mutijulu
Author: Professor Amanda Lee is a Chief Investigator with The Australian Prevention Partnership Centre. She is Professor of Public Health Policy at The University of Queensland, an Affiliate Professor at the UQ Poche Centre for Indigenous Health, and Nutrition Consultant for Nganampa Health Council and the NPY Women’s Council
“The key was to work collaboratively to strengthen store nutrition policy, monitor implementation, feed results back regularly, and support community activities to increase demand for healthier options,” she said.
The project showed there was a direct relationship between product placement, price and promotion in food outlets and dietary intake in the communities. Drink fridges were moved to the rear of the store, and no longer stocked large sizes of sugary drinks. The price of healthy choices, such as fresh vegetables and fruit, lean meats and water was cross-subsidised. While food remained expensive relative to the very low incomes in remote communities, families could save over $50 per week by switching to a healthy diet.
2022 | INSPIRE 024 29 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
For more information visit the project page
This study confirmed that multi-strategy, communitylead nutrition projects focusing on both supply and demand can improve Aboriginal food security and diet rapidly, providing more evidence that they should be
Strengthening food security action through system change. PROJECTCOMMUNITYFOOD Dr GodrichStephanie 30 INSPIRE 024 | 2022
The next stage, ‘Address’, included facilitation of an action-planning participant workshop to review results and co-design food security action plans to enhance the effectiveness of current initiatives. We also discussed new initiative ideas to support food security action in the Theseregion. new initiatives aimed to fill gaps not covered by existing initiatives, and were based on the explore, map and learn stages. The final stage, ‘Share’, included embedding the results map into a purpose-built Food Community website to connect and upskill the network.
‘Learn’ (stage 4) included reviewing information, including identifying windows of opportunities that could be harnessed through initiative and system changes.
Regional and remote communities can face intermittent food availability, higher food costs and lower food quality. In addition, we lack understanding of how initiatives addressing these challenges function as a system.
2022 | INSPIRE 024 31 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
The South West Food Community was implemented 2018 in South West Western Australia (WA). This groundbreaking work presents a unique opportunity to improve community-level food security action in rural and remote areas, where many are vulnerable to food security issues.
‘Form’ (stage 1) included formation of a core team and reference group. ‘Explore’ (stage 2) included stakeholder engagement and interviews with 52 initiative owners (i.e. staff, volunteers) to collect in-depth information about food security initiatives and assess initiatives against the 36 characteristics focusing on transformative change. ‘Map’ (stage 3) included entering interview data into Wicked Lab’s online Tool for Systemic Change, to graphically depict where initiatives possessed system change characteristics, and where windows of opportunity existed that could be strengthened. It also included data on initiatives’ network of partners.
The project has been featured as a case study across several documents and platforms including a 2020 OECD report, a book chapter (In Press), and on the Heart Foundation’s award-winning Healthy Active by Design Wewebsite.have published five academic papers, created a Facebook page (@ecufoodcommunity) and built a purpose-built website – www.foodcommunity.com.au –to connect and inform the network. We have produced twelve recorded webinars for the Food Community website, collectively viewed almost 9,000 times; and delivered 13 invited presentations locally, nationally and internationally. Recently, the Food Community project was showcased on the Foodies in the Field national podcast
EVALUATING SYSTEM TRANSITIONS
We conducted an evaluation six months after our actionplanning workshop and identified 25 changes across a sample of initiatives. These changes addressed system change characteristics identified by the Food Community project as ‘windows of opportunity’ that could be harnessed to enhance food security action.
SHARING OUR LEARNINGS ACROSS MULTIPLE PLATFORMS
The project aimed to increase the understanding of how South West WA food initiatives, addressing one or more determinants of food security, functioned as a system to drive food security action. We adapted the organisation Wicked Lab’s Systemic Innovation Lab approach to progress through a six-stage approach.
THE JOURNEY CONTINUES…STATEWIDE
We are now scaling up Food Community across WA! Thanks to funding from Healthway, we will create Food Communities across the Kimberley, Pilbara, Midwest (including Gascoyne), Goldfields, Wheatbelt and Great Southern regions. While our general approach will follow the South West Food Community pilot model, we will work with local stakeholders to contextualise the process to ensure it is relevant for each region.
Author: Food Community Project Coordinator Dr Stephanie Godrich is a public health nutritionist with 16 years’ experience in practice, research and consultancy.
Exemplar changes included staff/volunteers from one initiative creating a new community network addressing food availability and accessibility; several community organisations worked closely with their local governments, highlighting the need to address food security in such policies. One participant advocated to their local government to incorporate strategies into the Public Health Plan, which progressed through to implementation. implemented various projects that aligned with local government strategies, which subsequently gained support from their local government. Another encouraged Elected Members to use community ideas, leading to local government sharing information about food initiatives in the area.
The Western Desert Kidney Health Project involved 10 remote communities and local and state organisations looking at reducing diabetes and kidney disease in WA’s Goldfields and Western Desert, an area bigger than the state of Victoria.
“The communities were small and in very remote areas, with extremes of temperature, so the practical challenges were great,” Dr Jeffries-Stokes said.
Her sister-in-law, Annette Stokes AM, a senior woman of the three main tribal groups for the region – the Wongutha, Mulba-Ngadu and Anagu tribes – played an important role in the research. An accomplished artist and musician, Ms Stokes’ cultural standing meant she was able to talk frankly to senior members and elders as the groundbreaking study was scoped out.
Researchers found the risk factors for kidney disease and type 2 diabetes were present across all ages, including children as young as two, with no significant difference between Aboriginal and non-Aboriginal children, suggesting common exposures might be to blame, rather than ethnicity.
32 INSPIRE 024 | 2022
(L-R) Dr Christine Jeffries-Stokes, Mark Stokes and Annette Stokes engaged in artwork during the Western Desert Kidney Health Project as part of their interaction with the community Image: Poppy Van Ord Granger
High levels of acid and blood in the urine of participants suggested factors contributing to chronic metabolic acidosis and inflammation or irritation of the urinary tract needed to be explored, with drinking water of particular “Inconcern.most of our study areas, drinking water is heavily contaminated with nitrates and, in at least one community, uranium,” Dr Jeffries-Stokes said.
PUTTING
Dr Christine Jeffries-Stokes from UWA’s Medical School and the Rural Clinical School of WA said Type 2 diabetes was the leading cause of avoidable mortality for Aboriginal people in the region, accounting for 20 per cent of deaths.
Between 2010 and 2014, the team visited more than 30 communities from Norseman to Tjuntjuntjara, assessing 597 adults and 502 children, including almost 80 per cent of the local Aboriginal population.
“For kidney disease it’s six per cent, the second highest rate in Australia,” she said.
WATERDRINKINGQUALITYONSPOTLIGHTAPOOR
One of the effects of uranium ingestion is kidney inflammation and damage, which is exacerbated by the presence of nitrate and the formation of uranyl nitrate.
“In two communities – Mulga Queen and Mount Margaret – a 2020 review by the Western Australian Auditor General showed there’d been no improvement in water quality over the past five years, and nitrate levels remained above international and Australian health guidelines.”
Fremantle Docker Sam Switkwoski (in his final year of an environmental engineering degree at RMIT University) is part of a team from Optimos, D2K Information, RMIT, UWA and the University of Queensland now designing and testing pilot technologies to remove nitrate from drinking water.
Dr Jeffries-Stokes said the project has had far-reaching benefits.
Our aim was also to develop research skills in the community, while developing community capacity to combat these diseases and contribute to ‘Pulkurlkpa’ – a deeply soul-felt sense of joy, hope, optimism and resilience. I hope we achieved that.”
2022 | INSPIRE 024 33 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
RESEARCH IN THE CONTEXT OF A PANDEMICGLOBAL Advantages for rural and regional participants 34 INSPIRE 024 | 2022
2022 | INSPIRE 024 35 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
“But I don’t live in Perth! How can I be involved when I live in the country, and I can’t travel as I can’t afford it and I have to meet my kids at the school bus?” said a potential study participant on the phone. Here was a person living with multiple sclerosis who wanted to contribute to research into neurological conditions and help us set research priorities but could not come to Perth for the data collection. Living in the largest state covering 2.646 million km2 posed a challenge for the group of researchers in the Systematic Profiling in Neurological Conditions (SPIN) Research Program in Western Australia (WA).
36 INSPIRE 024 | 2022
REGISTRY SPIN Registry, our flagship study, uses quantitative and qualitative methods to assess changes in the clinical, biological and lifestyle status of individuals living with a neurological condition, as well as their changing perspectives.
Just a couple of months after that phone call the whole world came to know about the COVID-19 virus as we entered a global pandemic. Restrictions and lockdowns impacted the lives of all Australians and brought a pause to most research data collection involving human participants. As we became familiar with life under different conditions it became clear that researchers had to change how we collected data in order to keep research activities going. The ‘hard’ borders in WA meant that in comparison to the rest of Australia the numbers of infections remained low and within the state lockdowns and other restrictions were minimal. Researchers, however, still had to introduce protocols to comply with WA Public Health guidelines. Particular attention had to be paid to protecting participants who had increased vulnerability due to their chronic neurological condition. Innovative changes that were made to study protocols to ensure participant safety and continued data collection through virtual and other means have now been implemented to extend the reach to participants in regional and remote areas.
Through our data collection activities, we have found that people living with neurological conditions see the participation in research as an opportunity to ‘give back’ and to contribute to the greater good.
Author: Associate Professor Mandy Stanley. Mandy is an experienced occupational therapy academic who is known for expertise in the use of qualitative research methodologies. Her research focuses on gaining the perspective of the person with lived experience with particular interests in choice and control and the dignity of risk.
ENLIGHTIND
This is important for people living with a condition that in the majority of cases is progressive and degenerative and when they are adapting to many losses. Until recently the opportunity for people living in regional and remote areas to participate in research has been very limited.
Participant researcherconferencespeakingtherapypicturedRegistryparticipatesGeorgeinSPINproject,holdinglightglasseswhileviavideowithSPINLaura. 2022 | INSPIRE 024 37 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Now with the development of new procedures, often as a result of the need to address social distancing requirements, the opportunities have increased. Given the well documented health inequities between people living in urban centres and those living in regional and remote areas it is important to engage people living at a distance from cities in research. Whilst different ways of collecting data are not without disadvantages they do open up new data collection possibilities. We will continue to provide these opportunities in future projects and engage with people living in regional and remote areas to identify specific needs that might not relate to those living elsewhere.
The utility of the intervention is examined using online questionnaires as well as a wrist-worn monitor and small sensor sent via registered email. Remote delivery ensured safe administration of the intervention and enabled Australia wide engagement from people living with chronic stroke and multiple sclerosis.
A sample of participants agreed to participate in the qualitative component of SPIN Registry, which explored the experience of people living with a neurological condition over time. Participants engage in semistructured interviews which typically last 60-90 minutes. Interviews were able to continue with the use of Teams video conferencing. This enables people to participate from home although it does make it harder to develop rapport and manage participant discomfort, and restricts participation to those who are able (have access and capability) to connect online.
The information collected is provided back to participants and their nominated healthcare provider to help optimise care. The pandemic triggered a transition to remotely delivery assessments including the formulation of a telehealth cognitive battery, as well as the development of an online questionnaire battery and new processes for the reliable collection of biological samples. These changes not only enabled the team to continue safely recruiting individuals but also provided an opportunity for people living in remote and regional areas of WA to engage with this flagship study.
The ENLighTIND trials within the Research Program explore the usefulness of green-blue light therapy plus sleep hygiene recommendations for combating fatigue and sleep issues in individuals living with chronic stroke and multiple sclerosis. These trials were specifically designed to support remote delivery. Green-blue light therapy glasses and sleep hygiene recommendations were delivered via registered mail and telehealth conference.
FILLING A MENTAL 38COMMUNITIESRURALSERVICEHEALTHGAPINFARMINGINSPIRE024 | 2022
Even when support is available through face-to-face, flyin fly-out or telehealth services, what is on offer does not always reflect local values and needs. Farmers report not trusting ‘outside’ professionals who don’t understand farming life and work. Adding another layer of difficulty, after a negative experience of seeking support, farmers often choose not to try to re-engage with mental health support services.
PEER-LED APPROACH
We know that farmers face a higher risk of suicide when compared to the general population, yet access to mental health support in Australia’s farming communities is generally poor—with limited numbers of mental health professionals, long wait times and a culture of avoiding seeking help for poor mental health.
The study involves researchers from Deakin University, Western District Health Service, La Trobe University, the University of South Australia and the University of Melbourne; working alongside lived experience and community members from Victoria’s Great South Coast BAregion.isan evidenced-based therapy for the treatment of the symptoms of depression. By focusing on increasing behaviours that people enjoy or create a sense of meaning or achievement and reducing avoidance behaviours, people can ‘activate’ a positive emotional state. BA also helps people avoid declining into an increasingly negative emotional state of engaging in behaviours that make them feel bad. We know that (i) non-health workers can learn to deliver BA, and (ii) peer-delivered approaches to mental health support reduce relapse, improves engagement and supports empowerment and recovery. Working with farmers to deliver BA to their peers—and enabling the context and competency to ‘walk in their shoes’—has the potential to overcome barriers to support in farming communities and improve mental health outcomes.
The research team have since been working with farmers and industry stakeholders to co-produce and pilot a training program—ensuring clear and relatable language, content and imagery, and an interactive format delivered in person (where possible) by people with an understanding of farm life and work.
Through a series of co-design workshops with farmers and farming community stakeholders, the research team established initial support for a peer-led BA program, and found this to be a concept that resonated with the practical, solution-focused approach of farmers. Farmers like to help farmers. There’s a really strong community spirit” “Farmers are looking for a practical solution they can do each day.”
I’ll try and encourage farmers to go in and see a psychiatrist or psychologist, and their line is, ’it didn’t work last time; it won’t work this time’. It’s really hard to explain to them...[that] just because you didn’t click with one doesn’t mean you won’t click with another one.”
With funding support from the Western Victoria PHN’s Great South Coast suicide prevention place-based trial, the National Centre for Farmer Health has been leading the co-design of a framework for delivering peer-led Behavioural Activation (BA) in farming communities.
As with all research, the co-design workshops and pilot training raised new areas for investigation—including how to ensure program sustainability, and how to maintain the safety of peers and community members seeking support. This prompted a series of interviews with Australian organisations already delivering peer-led programs— providing insights to inform effective recruitment strategies, boundaries and supervision structures, ongoing professional development requirements, reporting and management of risk, and recognition and remuneration of lay Workingworkers.withcommunity to seek solutions to this ‘wicked problem’ has identified peer-led BA in Australia’s farming populations could have a range of potential applications— including prevention, treatment and relapse prevention following a mental health crisis. This is the first step in developing a response to help fill the gap in accessible, effective and appropriate mental health support for this at risk population.
The team would like to thank our farming community members who shared their time and insights to help inform this project—it is their voices that are included as quotes in this article.
Author: Associate Professor Alison Kennedy (Project Lead) – National Centre for Farmer Health / Deakin University 2022
“When [my son] died, I went into my local town, and four people came to me that [said] they had depression. I’d never ever heard anybody tell me this before, and I was heartbroken, that this is all hidden.”
| INSPIRE 024 39 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Improving the resilience of the agricultural sector by enabling farmers to better cope with things they can’t control. WELLBEINGFARMERS’GROWING
40 INSPIRE 024 | 2022
Mr Michael Kowald and Dr Kate Gunn at Mr Kowald’s Adelaide Hills property that was affected by fires in December 2019
Farmers die of suicide at twice the rate of other employed people and are half as likely to have seen a GP or mental health professional in the last 6 months compared to their non-farming rural counterparts. Not only do they have reduced access to services due to geographic isolation, farmers also face barriers such as stoicism, stigma, inability to spend time away from the farm and concerns about privacy in tight-knit, small communities.
The second initiative will test the feasibility and impact of farmers learning from other farmers about wellbeingrelated issues. Entitled, ‘The farmer, the psychologist and the comedian’, this project will identify topics of importance to farmers, develop workshop content based on psychological science and humour, then upskill local farmers to deliver the workshops to their community.
Community members can also invite a mate to sign-up.
In 2022, thanks to funding from the Federal Drought Fund, two exciting new initiatives are being launched to help increase the reach of ifarmwell and the strategies it teaches.
Additionally, new content has been added in response to changing needs; modules are now available via podcast, and a module to help fire-affected farmers prepare psychologically for future fires is currently being co-designed with assistance from farmers like Michael Kowald, an Adelaide Hills dairy farmer whose property was burnt in December 2019, pictured here with Dr Gunn.
Since the drought of 2008, Dr Gunn and the core ifarmwell team including Prof Deborah Turnbull, A/Prof Jim Dollman, Prof Susan Brumby, Dr Andrew Vincent, Dr Camille Short and Dr Gemma Skaczkowski, have examined these issues and what can be done to help.
“The ifarmwell website equips farmers with extra coping skills, practical tips and feedback on their level of wellbeing, as well as advice on seeking professional mental health help. To keep farmers engaged, ifarmwell also uses short videos, cartoons and text message Evaluationreminders.”
of the website (paper under review) has shown that completion of the modules is associated with increases in psychological wellbeing and decreases in distress, that are maintained for at least 6 months following completion of the final module.
“There appears to be increased awareness of mental health issues in our farming communities in recent years. This is great, but it is important that this awareness is met with practical, accessible ways people can improve their wellbeing if they want to, which is where we see the freely available resources on ifarmwell, playing a vital role” said Dr Gunn.
The free website guides users through five 30-minute modules, to learn new ways of coping with the types of stress that farmers commonly endure. “While farmers are generally very good problem solvers, much of their stress is caused by things beyond their control like the weather or commodity prices – things they can’t just fix,” Dr Gunn says.
Author: Article written by Dr Kate Gunn and Dr Gemma Skaczkowski
Having grown up on a farm in remote South Australia, Dr Kate Gunn knows firsthand the impact that events such as drought and fires can have on a farmer’s wellbeing.
A Clinical Psychologist and Senior Research Fellow in the Department of Rural Health at the University of South Australia, Dr Gunn has led the development of www.ifarmwell.com.au; a farmer-focused online and text message-based wellbeing program, specifically designed to help farmers learn new tools to cope with things beyond their control, like the weather.
Industry supporters and stakeholders, such as Rural Financial Counsellors, have highlighted the value of ifarmwell.com.au sound financial decision making. Based on this, additional features on a recently re-developed platform include an option for people working with farmers to refer their clients to ifarmwell, and to monitor and encourage their progress.
2022 | INSPIRE 024 41 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
A key finding is that something that separates farmers who do not become distressed in times of drought from those who do is their ability to accept things they cannot control, and not give up on the things they can. Additionally, a lack of understanding of the agricultural industry from outsiders (including health professionals), adds to stress and acts as a barrier to help-seeking. These findings directly led to the development of www. ifarmwell.com.au, which delivers accessible, evidencebased wellbeing education and support. Its uniqueness lies in the fact that it was co-designed with Australian farmers and incorporates evidence-based strategies (largely Acceptance and Commitment Therapy-based), to ensure meaningful, sustained impact on farmers’ wellbeing.
NEW INITIATIVES
The first is a social networking intervention called ‘Vocal Locals’, based in Loxton, South Australia. Vocal Locals builds on the success of a musical production ‘Kick off ya boots’ that was written by Loxton grain grower John Gladigau and incorporated many of the key ifarmwell Vocalmessages.Locals is continuing that mental health and wellbeing conversation by upskilling 10 prominent Loxton community members to progress their own wellbeingrelated goals, and share what they learn on social media and local radio, to reach other community members.
PATIENT CARDIACCENTREDREHABILITATION: When traditional cardiac rehabilitation support is difficult to access due to geographical barriers, alternative delivery models via technology can improve health outcomes in rural and remote regions. ANDINDIVIDUALISEDFLEXIBLE,ONLINE42INSPIRE024 | 2022
2022 | INSPIRE 024 43 CHRISTOPHE KEREBEL CHRISTOPHE
Authors: Ms Katie Nesbitt, Dr Alline Beleigoli, Professor Robyn Clark Consumers usability testing the CATCH web cardiac rehabilitation program in regional South Australia usability of the completed website, where the design participants interacted with the completed web program. They thought the program attractive and useful, and although not able to deliver a similar experience to faceto-face interaction, they felt it was comprehensive, and celebrated in the work they had designed.
My Twitter : @chriskere
To combat this, researchers developed a web-based cardiac rehabilitation program, to be undertaken at home, with a flexible approach to program completion. The website’s educational and support information is standardised clinical content, providing 10 modules for completion, managed by a cardiac rehabilitation clinician. The essential component to the successful development of this program was the collaboration with clinicians, patients, and their families in designing the website. Researchers sought to understand the face-to-face cardiac rehabilitation experience, what participants liked about it, and what they thought needed to be included online to achieve positive outcomes.
The project provided a window into the information technology literacy, social media engagement and smart device usage of the older population, who represent a large proportion of the population living with a cardiovascular condition.
The Country Heart Attack Prevention (CHAP) Project, led by Flinders University Caring Futures Institute Researcher Professor Robyn Clark with funding from the National Health and Medical Research Council, has completed the co-design of a web-based cardiac rehabilitation program after undertaking development and usability testing workshops with regional and rural consumers in South CardiacAustralia.rehabilitation programs deliver education and support regarding lifestyle changes to diet, physical activity, smoking and other risk factors that can contribute to reoccurring cardiac events. Traditionally this program is delivered either face to face or via telephone services over 6-8 weeks with a cardiac rehabilitation clinician. Despite its proven effectiveness in preventing reoccurring cardiovascular events, only 20-50% of those referred attend cardiac rehabilitation. This non-attendance is both complex and multifaceted, with geographical isolation a significant contributor.
Overwhelmingly participants wanted to see it made available, irrespective of program choice, as a bridge between diagnosis/hospital discharge and commencing a formal cardiac rehabilitation program. Having the power to relive fear in the early, unknown days, particularly for those in geographical isolation, was considered a real benefit.
Over a 12-month period co-design workshops sought to develop the website and test its usability. Participants in six regional local health networks in South Australia who had completed a face-to-face cardiac rehabilitation program designed the program, CATCH Web.
Despite often being perceived as disengaged with information technology, the workshop co-designers used smart phones, were active on social media, and conducted much of their lives online, emphasising that age is not necessarily a barrier to accessing health care interventions online.
CATCH Web was launched on July 1, 2021 for rural and remote South Australians referred to cardiac rehabilitation who opt to do a web-based program. Co-designing a cardiac rehabilitation website has delivered a consumer ready product, maximising program engagement and empowering effective and enduring lifestyle changes. KEREBEL KEREBEL
During web-development workshops participants provided feedback on and developed design specifications from high fidelity prototypes. These were given to the website developer to be incorporated into the final design. The process was repeated across all development Researchersworkshops.returnedthree months later to test the
CHRISTOPHE
CO-DESIGN APPROACH
Support for patients and their families can be addressed by increasing the range of telehealth services, particularly the availability of webbased programs.
From left, Emma Jamieson (Research Fellow, RCSWA), Professor Julia Marley (Senior Principal Research Fellow, RCSWA), Janelle Dillon (Midwife and Diabetes educator at Bega Garnbirringu Health Service), Erica Spry (Research Fellow, RCSWA and Research Officer, KAMS)
STUDYORCHID
44 INSPIRE 024 | 2022
“Babies have increased risk for obesity and altered glucose metabolism in childhood and for mums it can mean increased risk for future diabetes and cardiovascular Shedisease.”said testing was usually done via an oral glucose tolerance test, also known as the sugar drink test, at 24-28 weeks, however previous research had shown limitations with this method.
Optimisation of screening and management of hyperglycaemia in pregnancy in rural and remote Australia.
• Addressed glucose instability in blood collection tubes.
While early screening and active management through pregnancy is vital, it’s an often difficult task in remote communities, said Professor Julia Marley, a Senior Principal Research Fellow at UWA’s Medical School and the Rural Clinical School of WA (RCSWA). “High blood glucose in pregnancy increases babies’ risk of birth defects, being born premature and by caesarean, with low blood glucose levels and difficulty breathing,” she said.
A collaboration between RCSWA, Kimberley Aboriginal Medical Services and their member services, Diabetes WA and WA Country Health Services, the project recently received a $3.2 million boost from the Australian Government’s Medical Research Future Fund.
• Improved detection of the 30% of Aboriginal women expected to have HIP (15% detected <20 weeks gestation and another 15% detected at 24–28 weeks gestation).
• An estimation of the effect of the program on reducing the number of Aboriginal women with a large for gestational age newborn.
The fastest growing type of diabetes in Australia, gestational diabetes, or high blood sugar in pregnancy, is a far-reaching issue that disproportionately impacts the lives of Aboriginal people in regional areas.
Ms Erica Spry, Bardi Jawi traditional owner and cochief investigator from the Kimberley Aboriginal Medical Services and RCSWA, said the study was about empowering Aboriginal women and their families to make positive lifestyle choices “aimed at improving birth outcomes and health for subsequent pregnancies and preventing or delaying progression to chronic disease”.
• Co-designed and piloted HIP self-management strategies with Aboriginal women, their families and health professionals.
COMMUNITY BASED AND PARTICIPATORY APPROACH
The ORCHID Study operates within a community-based participatory research approach, which brings together community and academic worlds, as well as Indigenous and Western methodologies. The vision is to enable provision of culturally secure, targeted healthcare for regional, rural and remote Aboriginal women at high risk of adverse birth outcomes by simplifying HIP screening, addressing blood glucose sample stability issues, and codesigning and trialling HIP self-management strategies.
By the end of this project, across rural, and remote WA ORCHID will have:
“You have to fast for eight hours before taking the drink and blood is taken before the sugar drink, one hour later and finally two hours after the drink,” she explained.
• Implemented consistent and simplified HIP screening protocols for Aboriginal women.
Many women don’t like doing it because of side effects like nausea and vomiting and there are other issues such as logistical difficulties in getting to health service clinics.” As Chief Investigator of the large-scale Optimisation of Rural Clinical & Haematological Indicators of Diabetes (ORCHID) study, Professor Marley has been leading a team looking at simpler, more cost-effective ways to carry out the screening, including the potential use of the haemoglobin A1c test (HbA1c) to accurately reflect glucose levels early in pregnancy and identify mums at risk.
Author: Erica Spry (Bardi Jawi Traditional Owner, Research Fellow, Kimberley Aboriginal Medical Services 1, Research Officer, The Rural Clinical School of WA; Emma Jamieson, Research Fellow, 2The Rural Clinical School of WA; Julia V Marley, Senior Principal Research Fellow, The Rural Clinical School of WA 2) 2022
| INSPIRE 024 45 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
CLOSERCANCERDELIVERSTELEHEALTHMORESERVICESTOHOME
Professor Sabe Sabesan
Cancer patients in rural and remote areas are able to access cancer services closer to home thanks to tele-oncology models of care developed by Townsville Hospital and Health Service in partnership with James Cook University.
Motivated by this additional hardship experienced by rural and remote cancer patients, Townsville Hospital oncologist Professor Sabe Sabesan has worked with
For many cancer patients in rural and remote Australia, accessing treatment involves travelling long distances to a major regional or metropolitan hospital for what might be a five-minute consultation with their oncologist or a 30-minute weekly chemotherapy session. For patients already experiencing the symptoms of cancer and the side effects of chemotherapy, this long-distance travel can be financially, emotionally and physically draining.
46 INSPIRE 024 | 2022
Professor Sabesan is confident of the safety and efficacy of the telehealth model.
“What we have found is that many types of chemotherapy can be delivered in rural centres by tele-oncology models of care without compromising safety and quality of care.”
“Through the use of telehealth, rural patients can gain access to selected chemotherapy and other complex cancer therapies similar to that of urban patients without the need to travel to a major centre.”
When asked what might be next to improve cancer treatment for rural and remote patients, Professor Sabesan said access to clinical trials was a critical next step in ensuring rural and remote cancer patients have access to the same level of care as their metropolitan counterparts.
To this end, Professor Sabesan has played a major role in the design and implementation of the Australasian Teletrial model, developed in collaboration with MTP Connect, governments of Victoria, New South Wales and Queensland, Medicine Australia and several cancer centres. This model enhances regional and rural access to clinical trials involving new chemotherapy, biotherapy and immunotherapy agents.
The success of the North Queensland Teleoncology Network has led to the roll-out of the model state-wide, with Professor Sabesan instrumental in the telehealth governance committee and authorship of the Queensland guidelines for the safe provision of chemotherapy under a remote supervision model. The work of the North Queensland Teleoncology Network has also had a national impact, with Professor Sabesan sitting on the Council of the Clinical Oncology Society of Australia (COSA) and responsible for the development of COSA teleoncology clinical practice guidelines.
Participation in clinical trials by regional and rural patients is lower than their metropolitan counterparts. If we really want to lift our game and address survival rates and disparity between rural, remote and metropolitan areas, access to clinical trials is key.”
Professor Sabesan co-chairs the Australian Teletrial Program, in partnership with the six states and territories and led by the Health Innovation, Investment and Research Office of Queensland Health.
Author: Professor Sabe Sabesan BMBS (Flinders) PhD FRCAP, Clinical Director, Statewide Regional Clinical Trial Coordinating Centre, Clinical Dean of the Townsville Hospital and Health Service Medical Training Network and Senior Medical Oncologist, Department of Medical Oncology, Townsville Cancer Centre 2022
health systems researchers at James Cook University to develop new telehealth models of care to bring specialist cancer services to rural hospitals.
Mount Isa Base Hospital cancer clinic nurse unit manager Nicole Williams agrees. Telehealth helps bridge the health inequalities between the city and country. Our patients are grateful that they are able to access high quality, safe and effective cancer treatment in their own region, without having to fund and plan for long-distance travel.”
Following a successful pilot project, the Australian Government has recently adopted the Teletrial model and allocated nearly $125 million for a national roll-out.
| INSPIRE 024 47 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Professor Sabesan said the model also delivered financial savings on patient travel costs and these savings are able to be reinvested in rural health services. For example, enough money was saved by reducing travel from Mount Isa to Townsville to recruit a trainee doctor in Mount Isa to care for oncology patients.
The North Queensland Teleoncology Network allows rural and remote cancer patients to access specialist cancer care via telehealth. In this model, consultations with an oncologist are performed via videoconference with support from local doctors, nurses and allied health professionals. Patients who are fit for chemotherapy receive treatment locally with the help of suitably trained Thenurses.remote supervision of chemotherapy has been demonstrated to be as safe as traditional models of chemotherapy and high satisfaction with the process has been demonstrated among health care providers and cancer patients, including Indigenous cancer patients.
The North Queensland Teleoncology Network has made a significant impact in the region. In the Townsville Hospital and Health Service alone, during 2014 to 2018, 9,542 consultations were conducted using telemedicine and 842 cycles of chemotherapy were delivered through remote supervision models. During 2014 to 2016, 62 patients (38 males and 24 females) of whom 8 identified as Indigenous, received 327 cycles of chemotherapy across 6 sites at Cooktown, Thursday Island, Weipa, Bowen, Hughenden and Ingham.
Connecting research and health systems in regional settings is key to meet priority health challenges within those settings. RESEARCH IN AND ACROSS 48FOR–HEALTHHOSPITALREGIONALANDSYSTEMSCONNECTINGIMPACTINSPIRE024 | 2022
The KidGen Collaborative is a national translational genomics program whose coordination hub is based at Townsville in northern Australia. It aims to improve diagnostic and clinical outcomes of patients and families affected by genetic kidney disease via personalised application of novel genomic approaches. It seeks to increase the genetic diagnosis rate towards 70% by 2025, which will open up new clinical treatments and pathways for affected families and accelerate translation and integration of genomics knowledge and technology into clinical practice.
With funding from the Medical Research Future Fund, the collaborative (in partnership with Australian Genomics
Across northern Australia, advances in our understanding of the underlying genetic causes of kidney disease and the development of new collaborative partnerships is driving better and more effective healthcare for people with kidney disease. For 10-20% of adults and 50% of children affected by kidney disease, there may be an underlying genetic cause.
2022 | INSPIRE 024 49 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Kidney disease is a major health challenge in northern Australia. Disease prevalence is growing and is of particular concern amongst the region’s many Aboriginal and Torres Strait Islander communities. Compared to the general population, Aboriginal and Torres Strait Islander people are five times more likely to develop kidney disease and four times more likely to die from kidney disease; in remote and very remote areas of Australia, the incidence of kidney failure is up to 20 times higher among Aboriginal and Torres Strait Islander people. Across all population groups, hospitalisations and deaths from chronic kidney disease are also highest in regional and remote areas. In these communities providing care at the early stages of the disease, where there may be opportunities to slow progression, is more difficult than in metropolitan areas with greater health infrastructure. There are also challenges in providing life sustaining and complex kidney replacement therapies if kidney failure ensues. Patients can lose 90% of kidney function without any apparent symptoms and kidney replacement therapies such as dialysis can cost more than $80,000 per patient per year. This signals the urgency to better identify those at risk and pivot towards healthcare models that can deliver impact at the earliest possible stage in disease progression.
In northern Queensland, the KidGen-affiliated Queensland Conjoint Renal Genetics Service has avidly adopted telehealth so that all Queenslanders, whether in Brisbane or Bamaga, Red Hill or Richmond, can equitably access specialist care.
Townsville Hospital and Health Service (HHS) is a founding member of the Tropical Australian Academic Health Centre (TAAHC). Accredited by the National Health and Medical Research Council via its Research Translation Centre initiative, TAAHC connects the five HHSs in northern Queensland, the Northern Queensland Primary Health Network, Queensland Aboriginal and Islander Health Council, and James Cook University (JCU). This creates an integrated culture of research, innovation and evidence-based practice across the university and health sectors to deliver improvements in health and health care for northern Queensland.
COMBINED CAPABILITIES DELIVER TANGIBLE BENEFITS
Townsville HHS, JCU and Townsville City Council have also established the TropIQ health and knowledge precinct in Townsville. TropIQ leverages the co-location of JCU and the HHS to deliver an integrated academic health centre campus that fosters the translation of research into It is through the combined capabilities of Townsville University Hospital, TAAHC and TropIQ that consortia such as KidGen are able to operate and lead effectively from northern Australia, ensuring that those in urban, regional, rural and remote settings have access to the cutting edge clinical care and research opportunities that pave the way for optimal health outcomes for all NorthernAustralians.Australia is fast developing as a centre for research and innovation of local, national and global significance. The critical mass of clinical and research capabilities in Townsville and across northern Queensland provides clear opportunities for discovery, translation and collaboration to improve patient and community outcomes and realise workforce and service provision benefits for regional health services. The increasing networks of health researchers, such as those in the kidney health space, are now positioned to generate impact for those living with these conditions in equitable and impactful ways.
50 INSPIRE 024 | 2022
Northern Australia arguably experiences some of the greatest impacts of kidney disease and collaboration and partnership is critical to delivering on the aims of the KidGen Collaborative. This is facilitated by location of the collaborative national coordination hub at Townsville University Hospital and the significant health and research infrastructure present in the region.
Authors: Professor Andrew J. Mallett 1,2,3,4 , Bonnie Eklom1,2 , Emeritus Professor Rhondda Jones1,2 1 James Cook University, Townsville, Queensland 2 Tropical Australian Academic Health Centre, Townsville, Queensland 3 Townsville University Hospital, Townsville, 4QueenslandInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland introduction of Medicare Benefits Schedule item numbers from July 2022 for publicly funded genetic testing.
2022 | INSPIRE 024 51 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
52 INSPIRE 024 | 2022
BORDERSACROSSTELEHEALTHANDCOVID
To control the spread of COVID-19, the Western Australian and Commonwealth governments restricted visitor access into the Kimberley region of Western Australia from 26 March to 5 June 2020.
AGED CARE
Graphic representation of project themes and findings 2022 | INSPIRE 024 53 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Further restrictions within the Kimberley limited movement between the three Kimberley shires. Travel to remote Aboriginal communities was also restricted to health personnel. As was the case globally, these restrictions delayed the flow of resources and services into communities, including aged care services.
Funded by the WA Department of Jobs, Tourism, Science, and Innovation, researchers from the University of Notre Dame and Majarlin Kimberley Centre for Remote Health undertook a project aimed at exploring barriers and enablers to providing care, impacts upon staff delivering care, and effectiveness of providing care and preventing social isolation for the Kimberley’s older population during SurveysCOVID-19.and interviews with service providers took place from June through to September 2021. Interviews were held virtually, on the phone, or in person. Service providers described experiencing rapid changes as they quickly incorporated new restrictions and government requirements into their service. They also expressed continual concern for patients’ long-term physical and emotional health as care was changed and delayed, and social activities limited. Importance of community delivery of care as many elders chose to return to Country as the pandemic worsened, and providers acknowledged the importance of considering community and cultural factors in delivering aged care services. traditional medicines [for] boosting the immunity of our Elders.” Service providers described obstacles and enablers to service delivery. For example, travel restrictions had an immediate and drastic effect on care delivery. Faceto-face patient visits ceased, or were governed by strict COVID-19 safety protocols. In response, service providers often used telehealth services such as video/audioconferencing to hold appointments. It was challenging and much more labour intensive to provide the services due to all the extra travel and cleaning involved. Staff recruitment was a huge issue”
1School of Nursing, Midwifery, Health Sciences, and Physiotherapy (SoNMHSP), University of Notre Dame, Australia
2Majarlin Kimberley Centre for Remote Health, Broome, Australia 3Institute of Health Research, University of Notre Dame, Fremantle, Australia A shortage of culturally trained and skilled staff was experienced across the region, coupled with staff burnout and isolation. Consequently, telehealth was used to enhance resources, staff training, and support. Our data showed that for patients and health professionals, telehealth plays a key role in maintaining community engagement and support networks. Particularly as the experience of isolation – accentuated during the pandemic – has considerable, negative impacts upon the wellbeing of residents, patients, and carers.
Word Cloud from project consultation 54 INSPIRE 024 | 2022
Authors: Professor K. Clark-Burg1 (Chief Investigator), Professor C. Bulsara1 , Dr C. Josif1 , M. Morgan2 , Dr A. Timler3 , J. Gaspar1 , E. Myers1
During the COVID-19 restriction period, many of the aged care and disability clients became more isolated due to care providers being unable to visit them face to face.” Several key recommendations were made based on the project findings. Firstly, the need to improve service provider access to elderly patients in remote communities (e.g. exemptions for health professionals to travel across border restrictions, better transport infrastructure). Also of key importance was the need for more culturally trained and skilled staff, along with better infrastructure and capacity for telehealth. Targeted funding to support aged care services during health emergencies was another recommendation as was enacting earlier lockdown measures within aged care facilities to better assess the situation and develop strategies to protect residents and staff. Finally, as for all recommendations, these should be tailored for particular areas rather than a ‘one size fits all’ approach to service Thisdelivery.project provides valuable insight into the experience of those providing aged care during the period of COVIDrelated travel restrictions in the Kimberley and the ways in which service providers dealt with the many and often unique challenges they faced.
The unexpectedness of pandemics such as COVID-19 drives an imperative to develop strategies that work effectively across sectors and service providers. Hopefully, the project findings and recommendations can be used to improve aged care service providers’ support in pandemic scenarios, and that subsequently this improves health and wellbeing outcomes for older community members.
2022 | INSPIRE 024 55 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
PUTTING THE VOICE OF RURAL AND 56OFATCOMMUNITIESREMOTETHECENTREHEALTHCAREINSPIRE024 | 2022
2022 | INSPIRE 024 57 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Around 7 million people live in rural and remote Australian communities, many facing daily challenges when navigating healthcare systems. While people living in these areas generally have poorer health outcomes than city-dwellers, more can be done to reduce the divide. It all starts with listening. Researchers from the Australian Institute of Health Innovation (AIHI), Macquarie University, have focussed on understanding the experience of adults using the health system in these regions. We have also been working on a program to improve access to care for children in regional and remote areas. Both efforts have benefited from fruitful partnerships and a shared vision to embed the consumer voice and experience at the centre of health system improvement initiatives.
ABOUT AUSTRALIA’S LARGEST HEALTH CONSUMER SENTIMENT SURVEY
This was a joint project of the Consumers Health Forum of Australia, AIHI and the National Health and Medical Research Council Partnership Centre for Health System Sustainability. Supported by the Commonwealth Department of Health and the Australian Commission on Safety and Quality in Heath Care, the survey is a barometer of opinions and experiences of healthcare across Australia and a unique resource to inform policy and practice. It is purpose-designed to help identify critical A commitment to listening to the views and experiences of health consumers has revealed new insights for researchers at the Australian Institute of Health Innovation.
In order to contribute to a safer, more accessible and equitable healthcare system, we listened to the views of 5100 Australians on the health system. The Australian Health Consumers Sentiment Survey included Australians aged 18-92 years, based on representative quotas generalisable to the population. Approximately 11% of respondents identified as Aboriginal and/or Torres Strait Islander, and we deliberately oversampled people living outside of metropolitan areas.
to note that when asked: “Do you feel that you have been discriminated against or disrespected when receiving healthcare in the last 12 months?” one in five respondents answered “yes”. Of these, 81% identified as Aboriginal and/or Torres Strait Islander. This shows a need to build capacity into the health system to ensure safe, quality care for all.
In rural and remote regions, people were significantly more likely to access telehealth, to receive healthcare advice from a pharmacist, and to receive their COVID-19 vaccination in a GP clinic. They were more likely to access specialist care privately but fewer people in rural and remote regions had private health insurance.
SUCCESSFUL PROGRAM IMPROVES CARE FOR KIDS
In related research, Associate Professor Zurynski and colleagues evaluated the Sydney Children’s Hospitals Network (SCHN) Kids Guided Personalised Service (KidsGPS) program which was co-designed with families and clinicians. The KidsGPS is a program that draws together all the services required for the integrated care of a patient including a care coordinator, shared care plans, Emergency Department avoidance plans, a smartphone app for information sharing and streamlining of appointments, telehealth consultations and a 24 hour advice hot-line for families.
Pleasingly, the evaluation of KidsGPS demonstrated benefits to the health system, children and families.
With more than one third of Australian children experiencing long term health conditions and requiring ongoing healthcare, this is particularly challenging for families in rural or remote areas. Children who have chronic and complex health conditions (such as poorly controlled asthma, diabetes or complex chromosomal disorders) often need access to interdisciplinary teams of specialists, GPs and allied health professionals. For families far from the city, travelling to SCHN can be a time consuming and costly experience.
Research lead and AIHI Founding Director Professor Jeffrey Braithwaite said “Many Australians are struggling to access or afford healthcare, with 24% reporting that they did not fill a prescription or omitted doses of medicine. Clever use of digital health technology such as telehealth and better integration of health services so that people can access the care they need, where they need it, will be key to delivering a better future for all Australians.”
Approximately $2.5 million per year in savings were
AIHI’s Associate Professor Yvonne Zurynski and her team co-designed the survey with consumer researchers from CHF, and said the results raise important questions about equitable treatment of people from vulnerable populations.
improvements, such as in affordability and equitable access to care.
Affordability of care is a concern across Australia and is amplified in rural areas, with significantly more people living in rural/remote regions reporting not visiting a dentist because of cost and being unable to pay for needed Itmedicine.wasdisquieting
58 INSPIRE 024 | 2022
WHAT AUSTRALIANS IN RURAL AND REMOTE AREAS TOLD US More than half of all Australians living in rural and remote regions of Australia say they need more access to health professionals. While 37% of respondents said they had used telehealth services during the pandemic, the need for well supported healthcare workers on the ground in these communities remains.
Authors: Associate Professor Yvonne Zurynski is Associate Professor for Health System Sustainability at the Australian Institute of Health Innovation, Macquarie University. Professor Jeffrey Braithwaite is Founding Director of the Australian Institute of Health Innovation, Macquarie University. identified due to averted hospital encounters. For rural families, fewer trips were needed to the city which meant fewer school absences, fewer days off work for parents and reduced associated costs (travel, accommodation, meals, childcare). The successful outcomes of KidsGPS led to a NSW Health Translational Research Grants Scheme being awarded to a collaboration involving the SCHN, University of NSW and AIHI, to implement the model at scale in rural regions. RuralKidsGPS is currently being implemented in four rural local health districts (Murrumbidgee, Southern NSW, Western NSW and Northern NSW). The implementation evaluation has been designed to support the continuous improvement and sustainability of the model of care.
2022 | INSPIRE 024 59 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
YOU 60HOLDSTHEKNOWNEVERWHATFUTUREINSPIRE024 | 2022
There was great engagement with these sessions with over 600 clinicians attending, demonstrating a clear need within the professionals for further training.
Early trends have shown that by educating health professionals and engaging patients and family members, the uptake of ACD’s across the district has significantly Throughincreased.concordance patients tend to die in their preferred place of choice, no participants were admitted to Intensive care and end–of–life treatments were predominantly for symptom management and comfort Tocare.further address the public health need to improve Advance Care Planning, increase promotion, education and support active engagement using ACD’s throughout the district. We have developed a “one stop” easy access web page point for Advance Care Planning.
| INSPIRE 024 61 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
The Advance Care Planning process eased the family’s burden of responsibility for decision making, and engaged families to talk to one another with potentially difficult circumstances. They reflected that there was a need to get the whole family together to talk about doing advance care planning and understood the importance in it.
For those who completed an ACD, the project aimed to guide the upload of these, to My Health Record in order to facilitate the timely access to and use of ACD’s by health professionals. This Facilitated continuity of information both internal and external to the health department enabling clinicians to view and follow the directive.
Authors: Beverley Morris, Advance Care Planning CNC. Graeme Mooney, Advance Care Planning Social Work. Prof Leigh Kinsman, Newcastle University. Prof Gail Whiteford, Charles Stuart University. 2022
Our web page covers the main aspects of ADC’s and includes helpful videos that provide straight forward information on Advance Care Planning, how to complete an Advance Care Directive and where to store your ACD as well as links to helpful resource sites.
Although ACD’s can improve patient and career outcomes, very few patients hospitalised in their last months of life have an ACD. There are several barriers to the uptake of Advance Care Directives across the Health District. Limited knowledge of our clinicians, patients and families, lack of time and confidence in End-of-Life planning by some providers, while others hesitate to talk about Advance Care Planning as they do not wish to distress the patient or deprive them of hope.
This project sought to reduce these barriers and increase the uptake and quality of ADC’s in the district by providing additional staff training, clinical governance, promotion and professional networking.
Field researchers consisting of clinical nurse consultants and a social worker held education sessions focused on upskilling clinician’s knowledge and the ways to integrate advance care planning into their routine practice.
Although a step by step guide was prepared to support patients in uploading their own document, very few had the confidence, knowledge and /or Information technology availability. Field researchers were available to support as requested. IT remains a major barrier to uploading ACD to My Health record. the Advance Care Planning journey and the completion of ACD’s. Family members reflected that the completion and utilisation of ACD’s was very beneficial, needed and reduced their distress.
Each family has a unique journey through end-of-life that is characterised by, at different times: uncertainty; varying levels of support; feelings of being unready, overwhelmed and/or stressed; and eventual acceptance.
All patients and family members referred to the project were offered face to face consultations about how ACD’s could be used, to support, educate and discuss their end of life care wishes, these discussions were conducted in patients homes, outpatient and inpatient settings, with home visits most widely preferred.
Clinicians from many specialties attended including, nurses, doctors and allied health representatives across hospitals and community settings. These were delivered both face to face, and virtually highlighting the adaptability of the team and participants during COVID-19.
The Mid North Coast Local Health District (MNCLHD) and participating partners, NSW Regional Health Partners, University of Newcastle, Charles Sturt University and the University of New England, have conducted the largest study on the uptake of Advance Care Directives (ACD’s) in Australia: Enhancing Advance Care Planning systems to facilitate patient centred care towards the endof-life, has focused on, quality and availability of Advance Care Directives, concordance between patients end-of-life preferences and the care that they actually receive.
DONATIONMITOCHONDRIALTORESEARCHERSUNITESCOMMUNITYWITHLEGALISE
Australian scientists explained what was involved in the technique and ethicists weighed in on some controversial aspects of the debate. In just the last two years of the campaign we estimate over 1,000 media items reached over 28 million people.
allows women with mitochondrial DNA disease to have children without passing on their faulty gene. The technique involves removing the nuclear DNA from a patient’s egg containing faulty mitochondria and inserting it into a healthy donor egg, which has had its nuclear DNA removed.
Over the next six years, there were approximately 200 face to face meetings, 500 phone calls and text messages and 2000 emails with Australian parliamentarians. Experts from the UK shared their experiences with the Australian mito community members, clinicians and researchers.
Mitochondrial disease (mito) is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure. There is no cure.
“It seemed to me to be naive in the extreme. To think that we would somehow progress a bill through Parliament –both houses – with a conservative government, to amend, of all things, the human cloning laws? It was too much to aspire to. A mito community advocate on how they felt when the campaign began.
Current treatments aim to decrease the impact of symptoms but do not change the course of the disease.
The clinical trial of this assisted reproductive technology is set to commence in 2023. This is the culmination of years of advocacy led by the Mito Foundation.
More often than not, mito is caused by a change in the mitochondrial DNA, which is passed down the maternal line, rather than by changes in regular nuclear genes.
INSPIRE 024 | 2022
Mitochondrial donation is an IVF-based technique that 62
MITO
The use of mitochondrial donation was approved by the UK Parliament in 2015, after a campaign led by the Wellcome Trust and the Lily Foundation. Until now, that was the only jurisdiction to legislate specifically for the Thetechnique.Australian mito community had identified mitochondrial donation as an aspiration in 2013, but it was in 2016 that the community, led by Mito Foundation, truly began its campaign to change Australia’s legislation to allow families to access this technology.
The various community views on mitochondrial donation were considered through a citizen’s jury, two Senate
The media played a strong role in the campaign. TV, radio and print articles profiled the stories of Australians living with mito who were advocating for access to the technology to build their own families.
In March 2022 the Australian Senate voted in favour of the Mitochondrial Donation Law Reform Bill after a robust debate and conscience vote in both houses of parliament.
One in 5,000 Australian babies will develop a severely disabling form of mitochondrial disease that can cause death in infancy, childhood or adulthood. That is, more than one baby born every week.
In these forums, advocates from the mito community bravely shared their stories alongside individuals and groups who had reservations about the technique.
inquiries, a multi-faceted NHMRC public consultation, and a Department of Health legislative review.
Author: Clare Stuart, Mito Foundation, and Professor David Thorburn, Murdoch Children’s Research Institute.
The research community supported the campaign through advising the Mito Foundation, media appearances, publications, and submissions to various inquiries.
The legislation permits licences to be given for running a clinical trial to pilot mitochondrial donation. This pilot is being funded through a $15 million Medical Research Future Fund opportunity.
A multi-stage carefully designed regulatory and licensing system will ensure that Australia’s expertise in assisted reproductive treatments continues while granting Australian families access to mitochondrial donation and their children to appropriate health monitoring.
Signatories included leaders of medical research institutes, professional organisations, the Australian Academy of Science and the Australian Academy of Health & Medical ThoseSciences.involved in the campaign credit its success to the patient and persistent advocacy of the mito community. It was their stories, their hopes and their fears that drove the campaign and motivated their representatives to support the legislation. They were assisted by the research and medical community throughout the process. The results are not only access to this technique but also markedly improved awareness of the devastating impacts of mito and the importance of ongoing research towards treatments and cures for this disease.
As the legislation was being debated in Parliament, 60 Australian doctors, medical researchers, ethicists and health experts with a long interest in the treatment and prevention of inherited disease, wrote an open letter to express their strong support for the legislative changes.
A milestone was reached in March 2021 when the Hon Greg Hunt, Minister for Health at the time, introduced the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 into Parliament. Mr Hunt made a heartfelt speech and acknowledged young Maeve Hood who lives with mito and after whom the Bill was named. It was announced that MPs and Senators would be allowed a conscience vote on the Bill.
“One day I will hold my grandbaby, and they will be free of mito. It is inconceivable to me, but tonight the wildest dream became a reality.” Mito community advocate on 30 March 2022 Maeve Hood, after whom the Bill was named, lives diseasemitochondrialwith
2022 | INSPIRE 024 63 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Partly due to COVID related disruptions, it was not until 12 months later that the Bill became law.
EMERGENCYBUSHFIREDURINGAPPAIRRATERCRUCIAL
64 INSPIRE 024 | 2022
T he University of Tasmania’s Menzies Institute for Medical Research has developed the free AirRater app to provide real-time, accurate air quality data to help people manage their health and activities as air quality fluctuates.
Environmental conditions such as poor air quality and weather affect millions of Australians by making existing illnesses, such as asthma, allergies and hay fever worse. During the Black Summer bushfires of 2019/20, AirRater experienced extreme demand as Australians struggled to cope with severe bushfire smoke pollution. The app was downloaded over 50,000 times during the fires, helping people keep up to date as smoke levels fluctuated across Researchcommunities.by the Menzies team shows that the app had an impact. A survey after the fires found that the app helped people to make decisions about daily activities during the smoke-affected period: such as staying inside, rescheduling outdoor activities, changing locations, and deciding when to take their medication. As climate change increases the frequency and severity of bushfire smoke events, AirRater will continue to be a vital tool for Australian communities.
At the same time, the app requests symptom data from individuals who have asthma, allergic rhinitis, chronic lung disease or any condition they might want to track to see if it has an environmental trigger.
In the wake of the Black Summer bushfires, the Menzies Institute also performed a health impact assessment of the smoke that affected over 80% of Australians over the bushfire-affected months.
The total cost was well above the next highest estimate of AU$566 million for the bushfires in 2002–03, and more than nine times the median costs associated with bushfire smoke for the previous 19 fire seasons of AU$211 million.
The research used a conservative approach to the modelling and almost certainly underestimates the true burden. The analysis only counted the cost of premature deaths, hospital admissions for respiratory and cardiovascular disease, and emergency department attendances for asthma. It excluded other health outcomes that can be affected by smoke (such as mental health and diabetes), and also excluded the costs of reduced productivity that affected much of the working population, who had to care for themselves or others affected by the smoke.
The Royal Commission and parliamentary inquiries used this evidence and it has shaped the foundations of policy changes, such as standardising how air quality is reported across the country. AirRater has also had policy impact in Victoria by contributing to the implementation of the Victorian Thunderstorm Asthma monitoring system in 2017 (including by providing instruments and training staff).
2022 | INSPIRE 024 65 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
including 429 smoke-related premature deaths, 3,230 hospital admissions for cardiovascular and respiratory disorders and 1,523 emergency attendances for asthma.
There is also a ‘smoke reporting tool’ to crowd source reports of smoke from bushfires and planned burns. The information is gathered through an extensive monitoring network and provided to users through an easy-to-use smartphone app interface.
On 14 November 2017 the Tasmanian Department of Health and Human Services issued the first thunderstorm asthma alert for Tasmania based on AirRater data and advice. The AirRater team also contributed to nationallevel developments in pollen monitoring by devising the surveillance standard for the Australian Airborne Pollen and Spore Monitoring Network Interim Standard and Protocols.
The team estimated that the smoke-related health costs reached almost $2 billion. These costs reflected impacts
HOW DOES AIRRATER WORK?
AirRater is an innovative, award-winning data platform and smartphone app that helps reduce the impacts of pollen, air pollution and extreme weather conditions on public health. AirRater does this by providing both community members and agencies with easy access to real-time, local information on air pollutants, pollen and other environmental hazards.
The AirRater team are currently undertaking a major redevelopment of the app – stay posted for a new, improved version with new features, including air quality and pollen forecast information.
COUNTING THE HIDDEN HEALTH COSTS OF THE BLACK SUMMER BUSHFIRES
The research, published in that the most impacted states were New South Wales (AU$1.07 billion), followed by Victoria (AU$493 million) and Queensland (AU$224 million).
The app uses these data to develop a statistical model, which allows users to understand associations between their symptoms and environmental conditions over time. Overall, this supports users to identify their personal environmental triggers and ultimately take preventative action to reduce their exposure.
Many Australians living outside metropolitan areas face unique challenges due to geographic location, and often experience poorer health outcomes than people living in Schaumberg
ost dementia prevention research in Australia, and indeed the world is primarily based in metropolitan areas. Understanding the unique needs of rural, regional and remote communities is a knowledge gap that requires attention and solutions for dementia prevention that are appropriate, accessible, and innovative.
66 INSPIRE 024 | 2022
Almost 50 percent of dementia risk is preventable, highlighting the need for research, equitable public health approaches and targeted lifestyle interventions for all Australians – regardless of where they live.
CITIESOUTSIDEPREVENTIONDEMENTIA
Dr Mia
Evidence suggests that up to 48% of dementia cases could be prevented by addressing physical inactivity, midlife obesity and hypertension, some of the greatest contributors to modifiable risk in Australia.
M
Detrimental changes in physical and mental health during/ following menopause are well documented.
FUTURE FOCUS: TARGETING MENOPAUSE AS A CRITICAL WINDOW TO REDUCE DEMENTIA RISK
‘For example, what risk factors for dementia are most concerning in regional Australia? What interventions may be most impactful for key risk factors? How can we attract and retain specialist clinicians and dementia researchers to work in regional, rural and remote communities?’
Public health approaches and targeted lifestyle interventions can address multiple risk factors for dementia, including emerging influences such as smoking, hearing loss and sleep. It is therefore important that everyone has access to dementia prevention efforts, including those who live outside the cities.
A recent call-to-action by the NHMRC National Institute for Dementia Research, Dementia Prevention Special Interest Group, published in the Medical Journal of Australia, proposes an eight-item, multi-layered dementia prevention action plan for Australia.
DEMENTIA PREVENTION CALL TO ACTION
MEMORY CLINICS AND OTHER RESEARCH-LED APPROACHES
Community translation needs to be a key priority in the latest efforts to develop dementia prevention strategies.
This particular project is working towards dementia prevention innovations that are impactful and improve health and wellbeing outcomes for older Australians and their families living in these areas.’
As someone who grew up in regional Australia, Dr Mia Schaumberg, Senior Lecturer in Physiology at the, University of the Sunshine Coast has experienced firsthand the challenges that come from living away from the ‘Fromcity. greater distances to travel, fewer services and opportunities, and internet/phone connectivity issues, there can be barriers to receiving equitable access to healthcare around every long, winding dirt-road turn.
The under-representation of women in health and medical research may contribute to poorer health outcomes for women across the lifespan. This includes a greater risk and prevalence of dementia in later life, with almost 70 per cent of cases worldwide occurring in women.
starts with gaining greater insight into the needs outside metropolitan areas.
With evidence to suggest that lifestyle factors such as poorer sleep, reduced physical activity and increased sitting time contribute to an increased risk of developing dementia later in life, there is a need for an integrated lifestyle approach to address dementia risk in women across Australia, regardless of where they live.
Author: Dr Mia Schaumberg, Senior Lecturer in Physiology, University of the Sunshine Coast’s School of Health and Behavioural Sciences.
metropolitan areas.
The plan draws on Australia’s strengths in clinical research, the quality of our health system and our diverse communities and environments.
Dr Schaumberg is co-leading this project within the Regional Australia Mental Health Research and Training Institute, a collaboration of the Regional Universities Network.
Almost 490,000 Australians live with dementia, and an estimated 1.6 million people are involved in the care of someone living with dementia, ensuring the disease is front-of-mind for many. Dementia prevention needs to be a key Australian public health area of focus.
The Regional Australia Dementia Prevention Hub is shining a light on dementia prevention in rural and regional areas.
Another initiative, within the Sunshine Coast Hospital and Health Service, is to build capacity of regional clinicians and memory clinics to contribute data to the Australian Dementia Network (ADNet) to monitor and enhance the quality of care and patient outcomes for people with dementia or mild cognitive impairment. In turn, this will increase access to services, new diagnostics and secondary prevention approaches for regional Australians with memory complaints.
In addition,the Group suggests more flexible and accessible delivery of dementia prevention efforts, including novel methods to deliver lifestyle interventions in a way that increases access to services such as telehealth, remote delivery, pop-up or travelling memory clinics, and home-based care.
2022 | INSPIRE 024 67 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
For older Australians living rurally, access to dementia prevention and treatment can be extremely difficult. Merely receiving a diagnosis can be challenging, expensive and Tacklingtime-consuming.’thesechallenges
The sudden and unexpected death of an infant is a tragedy with life-changing impacts for the bereaved family.
Preventing future deaths is the aim of the Queensland Pēpi-Pod® Program. It is underpinned by the principles of protection, participation and partnership, and comprises three core elements: • a dedicated portable sleep space suitable for a shared sleep environment in the parent’s bed that provides a zone of physical protection for a baby, who is at increased risk of suffocation;personalised education about infant breathing and how to protect it; and • partnership with families-as-peers to share with their community what they have learned about infant breathing and safer sleep.
Approximately 1 in 2700 babies tragically die suddenly and unexpectedly each year in Australia. Sudden unexpected deaths in infancy (SUDI), including sudden infant death syndrome (SIDS) and fatal sleeping accidents, remain the leading category of death in infants aged one month to one year.
And some are at greater risk than others. Families experiencing considerable social vulnerabilities associated with poor social determinants of health are overrepresented in these statistics.
INVESTIGATING PREVENTATIVE APPROACHES
The program began in late 2010 as a collaboration between Professor Jeanine Young from USC and
68 INSPIRE 024 | 2022
Despite achieving an 85 per cent reduction in SUDI-related infant mortality (IM) since the first Australian ‘Reduce the risk of SIDS campaign’ launched in 1991, preventable sleep-related infant mortality remains a problem, with improvements slowing during the last decade.
Babies born in regional and remote areas experience mortality twice that of their metropolitan counterparts, while First Nations babies experience SUDI rates four times higher than non-Aboriginal and Torres Strait Islander babies.
SAFER SLEEPING FOR BABIES
The program has extended its reach by building influential networks in communities through a series of projects.
We sincerely appreciate partner health services and families, the stakeholders invested in reducing infant mortality who offered support, and the generous philanthropists who made this possible.
2022 | INSPIRE 024 69 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
ACKNOWELDGMENTS
Stephanie Cowan, Managing Director, Change for our Children New Zealand, and is now celebrating a decade of impact in the lives of Queensland families.
An ‘implementation phase’ commenced in July 2017 funded by the former Department of Communities, Child Safety and Disability, which led to the Pēpi-Pod® Program partnering with 600 families and their services within Queensland areas identified with higher infant mortality.
THE FUTURE
The team is currently seeking government and stakeholder support to embed the program state-wide.
Author: Professor Jeanine Young AM is Professor of Nursing and Deputy Head of School, School of Nursing, Midwifery and Paramedicine, University of the Sunshine Coast and member, Queensland Child Death Review Board. Jeanine is a registered nurse, midwife, neonatal nurse and research academic. Her research program focusses on evidence-based strategies to assist health professionals in sharing Safe Sleep messages with families and reducing First Nations infant mortality. She is a committed parent advocate for public health messaging that achieves safe, nurturing care for babies.
The program achieved the main goal of decoupling shared sleeping and babies exposed to antenatal smoke exposure by providing an alternative sleep space. The program is targeted specifically to babies who are more vulnerable to suffocation and includes babies who have experienced smoke exposure, prematurity and low birth weight. Family and health professional feedback was very positive, indicating the program was culturally appropriate, feasible, accessible, and safe. Importantly, it built local workforce capacity, with integration into current service models. The Rural Doctors Association of Queensland Foundation’s generous philanthropy facilitated continuity for the program and provided a further 100 families with the opportunity to participate in early 2017, while the partnering research and service teams lobbied for program continuation.
In-principle support from the Office of the State Coroner, Office of Fair Trading Department of Product Safety, Kidsafe Queensland and the Queensland Family and Child Commission have been integral.
Financial support from the National Partnership Agreement Intensive Early Childhood Development initiative, philanthropic support from Perpetual Philanthropy, former SIDS and Kids and the Rural Doctors Association of Queensland Foundation, together with in-kind support from USC and Change for our Children, has enabled the establishment and monitoring of outcomes associated with this Program during the last decade.
The program’s success is due to partnership and collaboration. Researchers and social innovators, maternal and child health service professionals and the families they care for, along with government and nongovernment agencies and policy makers, have united to advocate for and support the common goal of protecting babies as they sleep.
The initial research program (2012-2016) partnered with selected communities experiencing socioeconomic disadvantage, mainly Aboriginal and Torres Strait Islander families living in remote or regional areas. Families engaged in the program through First Nations controlled health services, the Royal Flying Doctors service, Primary Health Networks and government maternal and child health services.
The team has proposed a minimum eight-year program to embed a sustainable structure for support and incremental expansion of the Pēpi-Pod ® Program into existing maternity and child health care pathways. This will be implemented within both government and community-controlled models in Queensland and allow for evaluations of mortality benefit and process outcomes. Researchers are committed to upholding the original codesign processes in planning and implementation to meet the needs of regional and remote health services and the families they care for.
They unite around a simple message: ‘If it’s safe to breathe, it’s safe to sleep’.
CUMULATIVE BUT ALSO IND IVIDUALISTIC
“If you see or experience traumatic events on a regular basis – say as an ambulance officer attending five or six traumatic events in a shift – it has a negative impact on the function of the brain. That’s why we see this concentration in certain occupations. “What is also true, however, is that PTSD can be incredibly individualistic. Sometimes a person involved in a car accident might not suffer significant trauma, but a person
“Many had fled war torn situations in Liberia and the Ivory Coast. All around me were neighbours and colleagues experiencing PTSD, but I didn’t fully recognise how the condition presented itself at that time.
With the creation of a National Post-Traumatic Stress Disorder (PTSD) Centre at the USC’s Thompson Institute, Cyrana and other impassioned researchers will be given a boost in their quest to counter the condition.
“People were treated for malaria, but not for mental health conditions.
While PTSD is particularly prominent for those involved in combat zones and emergency situations, it can also occur following sexual abuse, vehicle and workplace accidents, and physical confrontations.
“While a lot of things are still unknown about PTSD, one thing we do know is that trauma has a cumulative effect,” Professor Lagopoulos says.
A multimillion-dollar national PTSD Centre is set to be established at the University of the Sunshine Coast’s Thompson Institute, following an allocation of $8.3 million in the most recent federal budget, and $6 million from local philanthropists Roy and Nola Thompson.
“We will have a more peaceful society if people can get access to the help they need.”
“Sometimes, people processing a traumatic event may think that escaping to somewhere peaceful and serene will free them of their troubles. But that’s not necessarily the case.”
Thompson Institute Director Professor Jim Lagopoulos says the current prevalence of PTSD in Australian society is around eight per cent of the broader population. That figure is doubled for people working as front-line responders such as ambulance officers, paramedics, firefighters and military personnel. Indeed, in particularly trying circumstances the rate of PTSD can be 20 percent for particular professions.
“I worked with refugees and asylum seekers at a camp in Ghana, West Africa” Ms Gallay says.
“It’s such a beautiful, sun-filled, coastal place which feels like paradise to many,” Ms Gallay says.
70 INSPIRE 024 | 2022
The experience of living in a West African refugee camp inspired PhD student Cyrana Gallay to transition careers from international relations to mental health and neurobiology.
“It’s a very meaningful passion of mine now to find lowcost, non-invasive treatments for PTSD, which offer lowside effect profiles and are highly effective.
OFTRAUMASOVERCOMINGTHEPAST
And while the regional areas of the Sunshine Coast and Moreton Bay may seem a world removed from the circumstances of a refugee camp, the issue of PTSD has particular relevance there too.
“If those signs last more than three months it is chronic and can be a lot harder to treat by the time the person reaches out for help.”
“PTSD is very individualistic and there are consequences for us all.”
Author: Director, Professor Jim Lagopoulous has published more than 300 peer-reviewed articles, with particular focus on PTSD, health brain ageing, youth mental health and suicide prevention.
Cyrana Gallay and Gracy Forsyth, PTSD researchers at US’s Thompson Institute
2022 | INSPIRE 024 71 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
walking on the other side of the road in the distance might witness the accident and develop PTSD.
Low-dose ketamine has proven to be a particularly promising avenue of investigation.
Something which isn’t widely understood is that traumatic incidents actually result in the loss of brain cells in particular regions of the brain.
Thompson Institute colleague Grace Forsyth believes there are two important aspects to consider when assessing the communal impacts of PTSD.
The institute is named after local philanthropists Roy and Nola Thompson, who donated A$7 million to building the project in 2015, followed by a further A$3.6 million for MRI imaging equipment. They contributed an additional $6 million for the establishment of the PTSD centre.
Firstly, it is important to consider the myriad ways in which PTSD may impact someone’s daily life; whether that be an inability to maintain a steady job, extreme avoidance of public places, problems regulating emotions, or difficulty forming close relationships.
Secondly, loved ones in immediate proximity to someone suffering from PTSD are often highly impacted but don’t receive adequate information or resources for support.
If a person goes undiagnosed with PTSD, those around them might start to question why they have become more aggressive or depressive, for instance,” Grace says.
It can alleviate pain and suffering which may otherwise continue for decades. “PTSD symptoms can be mild to start with and people don’t think much of it,” Professor Lagopoulos says.
“The impacts can range from that person no longer participating in their family or engaging with their community, to the economic consequences of a reduced workforce and an overloaded medical care system.
NEW TREATMENTS
“One of the key things we are looking at in our research, and where we are confident of finding answers, is ways to promote the regeneration cells in the affected areas of the brain.”
Historically used as an anaesthetic, ketamine engages a specific brain receptor which has subsequent positive effects on cell regeneration and ultimately cerebral processing. Participants have reported life-changing responses and negligible side effects.
“It might commence as a few sleepless nights, a mood dysregulation, feeling sadder than usual.
THE LAST WORD
CLOSING THE GAP REQUIRES A APPROACH TO RESEARCH
But how to do this? The unfortunate reality is that the history of health research in rural and remote First Nations communities is patchy at best. There are many examples of poor practice in the past that arose from a combination of ignorance, power imbalance, cultural nonalignment and academic drive, with its associated time pressures. This sometimes played out as non-First Nations researchers conducting pretty superficial consultation with selected individuals in First Nations communities to gain ethics approval, undertaking research without
NEW
72 INSPIRE 024 | 2022
Any issue dedicated to rural and remote health must include a focus on First Nations people living in those regions. And the same is true for rural and remote health researchers, or research organisations.
Most recently we launched our Standards for the Conduct of Aboriginal Health Research. These provide clear guidance about how to navigate through each stage of the research process, from formulating the question through to translation and evaluation of the outcomes – at all times ensuring the highest quality of Aboriginal governance and relationships.Itisourexpectation that all our research in First Nations health operates according to these standards. I would implore every researcher, and every research organisation, to set similar standards and ensure that they are met. That is the only way that health research will make a meaningful contribution to Closing the Gap.
Author: Professor Jonathan Carapetis AM is Executive Director of the Telethon Kids Institute, a Professor at The University of Western Australia, a consultant paediatrician at Perth Children’s Hospital, and a past President of the Association of Australian Medical Research Institutes (AAMRI). His research interests include acute rheumatic fever (ARF) and rheumatic heart disease (RHD); other group A streptococcal diseases; vaccine-preventable disease; Aboriginal child health; child and youth health, development and education; and skin sores and scabies. He is the global leader in ARF and RHD research and led development of the Endgame Strategy – an evidence-based blueprint to eliminate RHD in Australia by 2031.
2022 | INSPIRE 024 73 CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL My Twitter : @chriskere
Over the past decade we have embraced the concept that First Nations health is everybody’s business and have formalised this with a Commitment to Aboriginal Children and Families, an Aboriginal Employment and Career Development Strategy, embarking on an Aboriginal Health Grand Challenge, appointing a number of Elder Co-Researchers, and much more.
I have worked in First Nations health research for 29 years, most of those based at two medical research institutes with a major focus on First Nations health – Menzies School of Health Research and Telethon Kids Institute.
Not only did that sort of approach do untold reputational damage to the very idea of research in many communities, but it also rarely led to significant change on the ground, let alone improvement to lives in communities. Even more damning is the fact that First Nations leaders have been telling us for decades that there is a better way – one that welcomes First Nations ownership and leadership of First Nations research, that acknowledges First Nations data sovereignty, that develops genuine partnerships involving local communities right from the start, and that ensures cultural security for all. For many of us, those messages fell on deaf ears.
We cannot continue to ignore or accept the continued disparity between First Nations people and other Australians. What does that mean for us as health researchers?
genuine involvement of local people or any local capacity building, and then focusing more on publication or other academic outputs than on communication and translation back to those communities. Calling it a naïve approach is far too generous – all too often it was institutional racism.
I too have reflected deeply on what I have learned over this time, and two things are clear. Firstly, you can’t dabble. The challenges faced by First Nations families and children require us to be all in, rather than treating First Nations health as an add-on to a much broader program of work. And secondly, you can’t do it on your own – there is no substitute for working in a place with an institutional commitment to First Nations health research, with Indigenous leadership and providing the right support and guidance for its researchers.
At Telethon Kids Institute, we have a 32-year history of working in partnership with First Nations communities.
