SPHERE 2023 Annual Report by IN-SPHERE

2023 Annual Report

Our Partners

Contents A word from our Interim Chair

Implementation Science

Acting Executive Director’s Foreword

Knowledge Translation

Strategy and Performance

Reports from our Clinical Academic Groups Aboriginal Health and Wellbeing

Understanding reception of care technology for healthy ageing at home

Age and Ageing

Collaborate 9

Cancer

Cardiac and Vascular Health

Diabetes, Obesity and Metabolic Disease

Early Life Determinants of Health

Frontiers Technology

Genome Connect

Healthy Urban Environments

Infectious Disease, Immunity and Inflammation

Kids to Adults (K2A)

Maternal and Women’s Health

Musculoskeletal Health

Collaborate 7

Using artificial intelligence to promote integrated care quality for older people by reducing preventable ED presentations

Amplify

Data driven health care initiative - RICH

Amplify

SPHERE Implementation Science Collaborative launched

Transform

Submission to the House of Representatives Standing Committee on Health Aged Care and Sport on diabetes

Transform

Transforming Healthcare: ACCELERATE_PLUS

Impact

Integrated Kids Connect Program addressing inequities in service access in the early years Clinical Trial for a home-based treatment of anorectal disorders

Neuroscience, Mental Health and Addiction 48 Palliative Care

Respiratory, Sleep, Environmental and Occupational Health

Report from our Women’s Health Research Network 53 Future Directions

Reports from our Strategic Platforms Clinical Trials

Consumer and Community Involvement

A word from our

Interim Chair Welcome to the 2023 Annual Report for Maridulu Budyari Gumal, The Sydney Partnership for Health Education Research and Enterprise (SPHERE). Established in 2016, SPHERE undertook an external review in 2021 that acknowledged the early gains made in creating partnerships between our members that had not previously existed, coming together to solve problems in ways that had not been previously done. This creative energy and initiative led to several important expansion milestones being reached including engagement with the Cancer Institute of NSW in 2022 and reaccreditation by the NHMRC in 2023, as one of 11 established Research Translation Centres across the nation. But more is expected and required before the mission to “revolutionise healthcare” can be achieved. Our populations are getting older and their pathologies more complex. Our current models of care are based on historical ways of delivering care and are increasingly challenged. Discoveries outpace our capacity to implement them into meaningful healthcare benefits, equitably and safely. The planet is getting warmer, and an increasingly diverse and expanding population aggregated in its coastal cities demonstrate disparities in wealth and health that do not translate to better health for all. Priority populations including Culturally and Linguistically Diverse (CALD), Aboriginal & Torres Strait Islanders and mental health patients are particularly vulnerable. Big Ideas are going to be needed to solve some of our largest problems and our Clinical Academic Groups (CAGs) and Platforms are collaborating to generate these ideas. The original disease based/research enabler framework has matured to an aggregation model, equitably resourced to support the original investigator-initiated model of enquiry and health service priorities. Moreover, the collaborative energies of the CAGs have been harnessed to acquire resources and influence policies external to 4

the organisation rather than relying on it. In this regard, SPHERE has always been and will possibly remain for the remainder of this strategy, inherently and purposefully disruptive. In a good way. In the next 12 months, SPHERE will revisit its governance and executive structure and membership, aiming to streamline its operations into a sustainable platform without sacrificing its collaborative and innovative intent. A new prospectus will be developed, and investment cycle confirmed beyond the current strategy to which all members have confirmed their commitment. The executive team have committed to defining SPHERE’s impact measurement framework in the first half of 2024 in readiness for our mid-term review by the NHMRC. We will retain leadership positions in the involvement of our consumers in our research priorities, developing our mid and early career researchers especially women, clinical trials and data integration and implementation of discovery into practice as quickly and equitably as possible. We will continue to Build Big Ideas, and seed fund or support the priorities and opportunities brought forward by our Research Translation Committee. In this Annual Report, you’ll recognise elements reflecting SPHERE’s origins and its ongoing transition. To this point I must acknowledge Amanda Larkin who stepped down as Chair during 2023. Amanda led through the commencement of this change process, constantly striving to ensure the best outcome for SPHERE and all its partners. The change process, overseen by the Council and directed by the executive, ensures SPHERE’s commitment to innovation and implementation of proven practices continues to benefit our communities. Tobi Wilson Interim Chair SPHERE Council

A word from our

Acting Executive Director the policies we need to influence and the impact we need to make. In this, our first Annual Report to our members, we have followed the pillars of our Strategy endorsed by Council to illustrate the unique collaborations we have made that extend us beyond our borders, the activities we amplified, and the transformations and impacts made. These examples are just a few of the stories selected from the breadth of outstanding performances reported by our Clinical Academic Groups and Platforms, included as a comprehensive review of SPHERE’s activity in 2023.

Professor Chris White

Everyone has a story to tell and like moths to candlelight we are often drawn to dreams and storytellers, hearing or watching stories unfold. Many imagined, some are true and others tall. Maridulu Budyari Gumal, The Sydney Partnership for Health Education Research and Enterprise (SPHERE) uses scientific methodologies to create bodies of evidence that sort the known from the fanciful, and the important from the less so. And whatever the artistic medium used to tell these stories, the best plots have a twist and a revelation that leads to an “Aha” moment. A eureka event. It is something a scientist, often on a herculean, and at times, lonely voyage of discovery experiences rarely but frequently enough to feed their addiction. Science has a powerful narcotic embedded within it. Something never seen before. Newness.

As the first chapters of SPHERE closed, our communication strategy will be to use social media, newsletters and quarterly reports as serial instalments that inform a yearly almanac of collective experiences and achievements. New horizons are opening, and as SPHERE evolves as a research social network, like all good stories, the plot has thickened in a way that has us waiting for the next instalment. Professor Chris White Acting Executive Director

SPHERE’s DNA is to use the stories from our communities to frame the questions they want us to ask, the results we need to disseminate, 5

Strategy and Performance In 2023, we initiated the implementation of our Strategic Plan (2023-2026), building upon the principles established in 2016 which were last reported on in 2021. The focus is on refining operational approaches to better position SPHERE for the future and uphold our commitment to improving health outcomes in the communities we serve. The strategic evolution centres around four pillars: Collaborate, Amplify, Transform, and Create Impact. Below is a summary of our key performance achievements while the case studies in this report offer insights into our initiatives and achievements across these pillars.

Collaboration

Transformations underway

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SPHERE has undergone significant transformation since the last report. Previously wholly Investigator-Initiated we have introduced balance between Health Service priorities and Investigator Initiated/ NHMRC priorities. In addition, we have achieved sustainable in kind and cash co-contribution funding models for future growth. Our Clinical Themes have led significant pieces of work focused on improving patient outcomes and quality improvement. A number of these are detailed in the report, including: • Stanford Quality Improvement program (p.50) • ACCELERATE + (p.22) • Integrated Kids Connect Program (p.15) In addition to these we have expanded our case-based learning to include Menopause in the MenoECHO Program.

•

• • •

Impact measurements •

Amplification

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• • • •

$1M seed funding “Building Big Ideas” 177 coinvestigators aggregating around five health service priorities across 10 clinical themes and six platforms. 28% from sites beyond our traditional membership Clinical Theme & Platform restructure including Healthy Populations & Environments, an Innovation & Industry Platform and expansion of the Clinical Trials Platform to include Data (Clinical Trials and Data Platform) Monthly newsletter reaching 298 members includes news, events and opportunities. Collaborations with NSWH. CINSW support for Cancer Theme and OHMR engagement with the CTHD Platform National collaborations with AHRA via Women’s Health research network ($690k) and Consumer and Community Involvement in Research ($40k) and advocacy for up to $15M NHMRC Health Services grants (open competitive)

$3.5M leveraged partnership support including $3M partnership research grants and $500K rapid applied research grant funding returned to members 40% of CIs Building Big Ideas were EMCR Sponsorship of Fellowships for Women in Health (4) Continued training in GCP: face-to-face and online Four major seminars and conferences supported (Cancer NSW and Palliative Care, HEmiSPHERE, Diabetes Tech and Talk)

• • • • •

Three Quarterly Activity reports and one Annual Activity and Impact Report. One Parliamentary launch (Child UnLimited) Two Submissions to parliamentary enquiries NHMRC reaccreditation Two Commercialisation opportunities Established an account on LinkedIn building the number of followers to 200 in less than six months. Increased our followers on Twitter to over 500 followers Three issues of In-SPHERE research magazine with an average of 850 individual reads and close to 4000 impressions per issue

Collaborate

Bringing people together through partnership across health, research and industry generating innovations and big ideas. Understanding reception of care technology for healthy ageing at home The population is ageing rapidly, and more so than ever, there is an increasing preference for people to stay in their homes instead of moving into care. To do that successfully, the recent Royal Commission into Aged Care Quality and Safety recommended the provision of goods, aids, equipment and services that promote a level of independence “to reduce risks of living safely at home.” Technologists believe that technology can improve quality of life, increase the efficiency of service delivery and reduce demand for acute

health care services. Such technology includes devices for monitoring activity and biometrics. While there is a strong case for the use of technology in aged care, it is essential to ensure that the application of technology meets the needs of end-users. Therefore, it makes sense to ask: What do ageing people, their families and professional carers think about using technology to support the delivery of aged care? Researchers are seeking to uncover the answer to this question in a SPHERE-funded project which brings together three SPHERE Strategic Platforms (Healthy Populations and Environment, Implementation Science and Knowledge Translation), the Age and Ageing Clinical Academic Group and SPHERE partner, South Eastern Sydney Local Health District (SESLHD).

This project is a significant entry point for intersectoral work between the planning system (which supplies housing for the ageing population) and the health system (which supports the health and wellbeing of the ageing population) and technologists (who enable new models of care).

This collaborative effort is further enhanced with external collaborators and supporters, including the UTS Institute for Sustainable Futures, NSW Smart Sensing Network (NSSN), University of Newcastle FASTlab, the Central Coast Research Institute (CCRI), and UNSW Tyree Foundation Institute of Health Engineering. “Realising the benefits of technology requires that the proposed technology is acceptable to ageing people, their families, and professional carers. However, without adequately understanding factors for acceptance, technology may be rejected or circumvented, leading to a loss of efficiency for service providers, wasted government funding, and with no benefits to recipients,” explains Chief Investigator, Professor Jason Prior. The project will codesign and run two surveys, followed by analysis and workshops for translation and implementation. In addition to researching the acceptability of technology-enabled aged care, the research will also look into the influencing variables which include technology aspects, role in the ecosystem, care tenure, dwelling type, regulation and zoning, locational settings, cultural background, and socioeconomics.

“We need knowledge and effective action on the relationship between ageing, housing, health, and technology. This project is a significant entry point for intersectoral work between the planning system (which supplies housing for the ageing population) and the health system (which supports the health and wellbeing of the ageing population) and technologists (which enables new models of care). This project also aims to directly inform policy as the ecosystem enters this period of rapid change,” explains Prof. Prior.

“The project aims to deeply understand which technology is, and is not, acceptable for monitoring and processing activity and biometric data, in supporting the delivery of aged care.” The proposed project will fill this knowledge gap and take the next step towards a real-world trial in SESLHD. The project outcomes will directly flow to existing initiatives in academia, industry, and NSW and federal governments.

Collaborate

Bringing people together through partnership across health, research and industry generating innovations and big ideas. Using artificial intelligence to promote integrated care quality for older people by reducing preventable ED presentations People aged 65 years and older constitute a significant portion, up to 41%, of Emergency Department (ED) presentations in Australia. Nearly half of these older individuals are subsequently admitted to hospitals, where they face an increased risk of adverse health outcomes such as delirium, falls, pressure injuries, functional decline, and mortality. However, research suggests that up to a quarter of these ED presentations could be preventable. This innovative SPHERE seed-funded project, will detect older people at-risk of hospitalisation,

empowering early intervention strategies, improving communication amongst partners, and integrating services to ultimately promote care for older people in the community. The overarching goal of this research being run by SPHERE’s Age and Ageing Clinical Academic Group is to enable older people to maintain independence, functionality, and diminish disability and deterioration by delivering timely and appropriate care. Recognising that the Emergency Department may not always be the most suitable setting, the project employs artificial intelligence (AI) to develop an algorithm that identifies older people at risk of preventable ED presentations who can be effectively cared for within the community. The outcomes will inform early intervention approaches, fostering empowerment and integration within community and primary care.

Crucial to the success of this project is the robust collaboration not only between SPHERE partners but also with external organisations. The cross-disciplinary team comprises experts from WSU, UNSW, SWSLHD, SESLHD, SWSPHN, HammondCare, Carers NSW, and Ambulance NSW. The team includes people with lived experience, experts in neuroscience, data science, software development, machine learning, health economics, knowledge translation, implementation science, innovation, change management, models of care for culturally and linguistically diverse (CALD) communities, and a diverse clinical team.

Innovative Approach The project’s innovation and ambition lie in the utilisation of cutting-edge methods, including AI-driven machine learning models.

Unlike other approaches that draw data from a single source and offer limited applicability, the project’s methodology incorporates biopsychosocial factors, links data from aged care service providers, compares older individuals across different care settings, Local Health Districts (LHDs), and cultural backgrounds, providing a holistic understanding of the complexities involved. By leveraging AI and fostering collaboration across various disciplines, this project is poised to revolutionise how we care for older individuals, ensuring that the right care is delivered at the right time and in the right place, ultimately enhancing their quality of life within the community.

Amplify

We amplify and uplift knowledge creation and embed a research and innovation culture. Data driven health care initiative RICH An exciting new expansion of our 2019 MRFFfunded Research Important Clinical problems with Health Outcomes (RICH) Program commenced this year. Originally, RICH aimed to facilitate research co-design and experiential learning through in-person RICH workshops which would encourage multidisciplinary teams to develop scientifically robust and socially relevant research proposals and implementation projects. Due to the COVID-19 pandemic, the proposed delivery of the program as a series of in-person workshops was cut short. Since then, we have pivoted to technological advancements to deliver the program’s objectives to support multi-disciplinary collaboration. “SPHERE is a complex organisation with different operating systems that reflect the diversity of academic and health service cultures that constitute its membership. Reimagining the way we collaborate to solve our biggest health problems, using modern methods of communicating with each other is a cornerstone of our strategy,” explains Acting Executive Director Professor Chris White.

We’re reimagining RICH Leveraging its size and established partnerships, SPHERE will lead research collaborations using a locally developed, cloud-native, distributed data platform: Research & Operational Data Environment (RODE). RODE facilitates data sharing, is compatible with various platforms, and supports data linkage and analysis through a federated querying system. This system allows data to be sourced from multiple locations and analysed locally. With local data governance approvals, RODE can query the NSW Health ethics reporting system (REGIS) to demonstrate a network of potential collaborations across contributing partners, identifying commonalities in research capacity and interest as well as developing new relationships and enablement according to clinical trial, grant-funded bid-building or policy developing initiatives. RODE’s ability to integrate REGIS data with workforce, grant management and equipment registries could complement and reimagine the collaborative energy RICH planned to harness and expand its horizons beyond that which the original proposal may have planned. “We will be RICHer by embodying the essence of our gifted name, Maridulu Budyari Gumal, which means working together for good health and wellbeing,” said Professor White.

Amplify

We amplify and uplift knowledge creation and embed a research and innovation culture. SPHERE Implementation Science Collaborative launched This year, the SPHERE Implementation Science Collaborative (formerly SPHERE Implementation Science Leaders’ Panel) was launched. As part of SPHERE’s Implementation Science Platform, this dynamic initiative is aimed at fostering collaboration and knowledge exchange among implementation scientists, clinicians, and leaders. This collaborative implementation scientist expert group, led by Associate Professor Natalie Taylor, is dedicated to supporting SPHERE members, including clinicians, researchers, clinician-researchers, and more.

SPHERE’s Implementation Science Collaborative

“As healthcare systems continue to work under increasingly dynamic and resource-constrained conditions, evidence-based approaches to implementation are essential to ensure that research investments maximise healthcare value and improve public health,” explains A/Prof Taylor.

A/Prof Natalie Taylor speaks at the Implementation Science launch

“Operating in dynamic and resource-challenged settings, we’re thrilled to launch this initiative, connecting implementation scientists with diverse backgrounds and a range of clinical and academic expertise with the many members of SPHERE. Our aim is clear: empower clinicians and researchers with the tools of implementation science, fostering successful partnerships and working together to embed evidence into clinical practice,” she said. “This initiative is the next step in our SPHERE Implementation Science Platform journey and aims to play an important role in bridging the gap between research and practice. We look forward to hearing about the multidisciplinary collaborations this initiative sparks between researchers and clinicians across SPHERE in the future,” said Professor Middleton, Leader of SPHERE’s Implementation Science Platform.

Transform We drive and accelerate the translation of evidence into value-based healthcare. Submission to the House of Representatives Standing Committee on Health Aged Care and Sport on diabetes Addressing the gaps in equity, access and delivery of diabetes care was the focus of SPHERE’s recent submission to the House of Representatives Standing Committee on Health, Aged Care and Sport on diabetes. Aligning with the Transform pillar of SPHERE’s strategic plan which aims to drive and accelerate the translation of evidence into value-based healthcare, the report provides evidence-based proposals for implementation as well as areas requiring further research. From ensuring culturally proficient health services for Indigenous communities to scaling innovative initiatives such as the Diabetes Contraception and Pre-Pregnancy Program (DCAPP), SPHERE is advocating for a transformative approach in diabetes care. The submission also recommends peer

support interventions for young adults, the augmentation of healthcare initiatives in rural areas, and proactive engagement with culturally and linguistically diverse (CALD) communities. In addition, the submission calls for enhanced accessibility to advanced technologies, such as subcutaneous insulin pumps and Continuous and Flash Glucose Monitoring devices and recommended the exploration of digital technologies for comprehensive metabolic and lifestyle screening. The report also calls for concerted efforts in cutting-edge research aimed at mitigating risks for individuals at the precipice of developing Type 2 Diabetes. “SPHERE is committed to translating our research knowledge and embedding it across NSW by addressing the prioritised diabetes healthcare challenges presented in the submission. A positive government response which takes action on our recommendations will help reduce the burden of disease, achieving better health outcomes for our communities,” said Acting Executive Director, Professor Chris White.

Transform We drive and accelerate the translation of evidence into value-based healthcare.

Transforming Healthcare: ACCELERATE_PLUS In 2022, SPHERE awarded the Big Ideas grant to Professor Sandy Middleton and Adjunct Professor Anna Thornton for their 24-month project, ACCELERATE_PLUS which has the potential to transform healthcare across Australia. ACCELERATE PLUS was designed to build upon the success of their 2019-2021 feasibility stepped wedge trial, ACCELERATE. This earlier trial established the feasibility and acceptability of an intervention to strengthen comprehensive nursing assessment and improve multidisciplinary clinical communication. It was conducted in nine wards at three hospitals: St Vincent’s Sydney, Prince of Wales, and St Vincent’s Melbourne. Results demonstrated the program improved timeliness and frequency of nurse-led clinical assessments and improved quality of team communication. ACCELERATE PLUS builds on this trial with an enhanced intervention in 24 wards across eight hospitals in NSW and Victoria.

The Challenge Delayed detection and response to patient deterioration have been identified as primary contributors to poor patient outcomes. Traditional models relying on ‘medical rescue’ processes often fall short, necessitating a paradigm shift in the existing approach. The Accelerate Plus trial aims to: • Reduce clinical deterioration, falls with injury, and stages >2 pressure injuries • Improve patient-reported perceptions of safety and hospital experience • Improve nurse and medical officer perceptions of interprofessional collaboration and safety culture • Improve nurse perceptions of (i) organisational readiness to change; (ii) barrier to physical assessment; and (iii) staff engagement. • Demonstrate economic values (versus usual care) using a cost-benefit analysis. The trial continued throughout 2023. The research team was announced Winner of the Australian Clinical Trials Alliance (ACTA) Consumer Involvement Award in November. Below: ACCELERATE PLUS at Fairfield Hospital

Impact Improving the health of our community and beyond. Integrated Kids Connect Program addressing inequities in service access in the early years The Integrated Kids Connect Program brings together three SPHERE Clinical Academic Groups (Early Life Determinants of Health, Kids UnLimited and Neuroscience, Mental Health and Addiction) and two Strategic Platforms (Knowledge Translation and Innovation), to transform the current child and family service system through an integrated and inclusive approach to addressing neurodevelopmental challenges in childhood. Every nine minutes, a child is born who is at risk of having a neurodevelopmental disorder (NDD) such as speech delay and autism.

Notably, one in five Australian children embarks on their educational journey without foundational developmental skills, a figure that rises to one in three among priority populations including socioeconomically disadvantaged and culturally and linguistically diverse (CALD) communities. This gives rise to a cascade of negative health outcomes, constituting approximately onethird of paediatric presentations and influencing detrimental life trajectories. Unfortunately, these challenges tend to escape identification until the onset of formal education or later, primarily due to suboptimal parental adherence (20-30%) to the recommended routine health and developmental checks outlined in the Personal Health Record, commonly known as the Blue Book. Compounding matters is what researchers

call the “inverse care law.” This phenomenon reveals a paradox where families hailing from the most disadvantaged backgrounds, with children facing the highest developmental risks, are the least likely to complete essential developmental assessments. Furthermore, researchers argue that the timely provision of support is impeded by the intricate, poorly-coordinated, and inefficient nature of the Australian child and family service system. This system is marked by fragmentation, duplication, and notable service delivery gaps, creating obstacles to accessing timely and coherent assistance. As a result, children often present after complexities/co-morbidities have set in, thereby missing early intervention opportunities leveraging the plasticity of the developing brain. Late intervention costs the Australian economy $15.2billion earch year due to additional health, education and welfare costs. The program’s lead, Professor Valsamma Eapen from the Early Life Determinants of Health Clinical Academic Group, explains that the program will address a “missing link” in the priority population’s service journey. “When we trialled the Watch Me Grow Electronic (WMG-E) weblink in the community (NSW Health COVID 19 grant) and in primary care (NHMRC Partnership Grant), a translation gap was identified in connecting the state system with community and primary care services. Currently primary health care professionals (PHCPs) are not reaching all, especially priority population children/families,” said Prof. Eapen.

“By empowering parents to engage with developmental surveillance program starting from pregnancy/birth, and providing proactive identification of needs, we will increase the service efficiency and integration so that no child is left behind.”

Making an impact The aim of the program is to transform the current child and family service system by systematising parental access and engagement with child developmental monitoring via an integrated, strengths based, blended (digital/ place based) service navigation and tiered care delivery program. “Leveraging the existing service infrastructure and resources and using the opportunistic contacts for immunisation (>90% uptake) and other routine service contacts from birth, the program will reach ‘all’, including ‘hard to reach’ families regardless of their language, culture, socioeconomic or geographic backgrounds,” said Prof. Eapen. “This will also fundamentally shift the focus from a risk/disorder focus to proactive services/ supports at the right place/time as per needs using strengths-based approaches.” Together, the program is expected to address the current evidence to implementation – translational – gap in service inequities and lead to timely identification of child developmental needs. At the same time, it will promote parental mental health and identify the psychosocial needs of families. “Building on our pilot study which showed WMG-E platform to be feasible and effective in engaging parents, this program will provide ongoing monitoring to identify developmental differences as they emerge, and deliver timely and appropriate intervention and supports, thereby reducing cost and service burden and improving health outcomes and intergenerational health and wellbeing.”

Impact Improving the health of our community and beyond. Clinical trial of a device for homebased treatment of anorectal disorders Anorectal biofeedback (BF) is a wellestablished and widely accepted therapy to treat the underlying causes of chronic constipation and faecal incontinence and could soon be treated in the privacy of one’s home if clinical trials are successful. The therapy uses neuromuscular feedback training to restore normal anorectal function. However, currently BF is limited to specialised clinics in major city hospitals. Led by Dr Jerry Zhou from Western Sydney University, this project, funded by SPHERE Frontiers Technology (FT) Clinical Academic Group includes two studies: a pilot feasibility study and a parallel arm randomised controlled trial. The proposed device will address access to treatment, the world’s biggest problem in treating defecation disorders. The impact of enabling hospital-grade treatment from home is more than a six-fold increase in efficiency for clinicians (one in-clinic session instead of six),

patient privacy and convenience, and access to treatment for previously isolated communities (rural, country, resident care). The proposed solution was validated with Royal Prince Alfred Hospital (RPAH). Funding from FT CAG directly led to financial investment from Western Ventures (WSU fund for potential start-ups). While the initial idea for the device wasn’t for commercialisation purposes, Dr Zhou realised that treatment can be more accessible if the device is commercialised. “We didn’t start this as a commercial project. We originally saw the need at Camden Hospital and wanted to create something in the lab to help the nurses providing the treatment. However, the more hospitals we spoke to the more we realised the potential for commercialisation because it is an unmet need.” The next phase of the project is establishing local manufacturing of market-ready device and TGA submission, with a plan to enter the Australian market soon. See Frontiers Technology highlights on page 35 for more information on this initiative. Below: Designing the anorectal biofeedback unit

Highlights from our Strategic Platforms and Clinical Academic Groups

Highlights

Clinical Trials Platform In 2023, the Clinical Trials Strategic Platform facilitated the establishment of new alliances across SPHERE, the broader health sector, its consumer representatives and with industry. It provided access to the skill-sets needed to meet the challenges and embrace the changes moving the NSW clinical trials environment forward. It brought new people to the conversations needed to drive change and supported voices that had previously not been at the SPHERE table.

Good Clinical Practice (GCP) training and the GCP Community of Practice (GCP CoP) With GCP trainer qualifications funded by SPHERE, members of the clinical trials workforce met the challenge of increased numbers of medical research personnel needing Good Clinical Practice (GCP) qualifications. In 2023, UTS, Sydney Children’s Hospitals Network (SCHN) and The George Institute (TGI) had new trainer positions funded. UTS and TGI continued to host regular, in-person, Introduction to GCP and Refresher GCP sessions. SPHERE also funded places for staff from TGI, Western Sydney University (WSU), St Vincents Hospital Network (SVHN) and the Black Dog Institute to attend in-person Introduction to GCP training. In addition, SPHERE members continued to access the free online training provided under licence with Sophie Mepham GCP (SMGCP). SPHERE facilitated monthly meetings in association with the GCP trainers from Sydney Health Partners, ensuring a Sydney-wide ‘think tank’ on GCP issues. Our trainers also thought ‘outside the box’ and proactively moved the training agenda forward. Responding to demand, the GCP CoP created a new, short session training program aimed at biostatisticians and

Participants at the GCP CoP meeting

data managers and The George Institute worked with SMGCP to develop GCP training for their sites in India, incorporating local regulatory requirements. Our GCP training community provided input into the revisions for ICH GCP (R2) and we are positioned to effectively implement ICH GCP (R3) across the partners once it has been adopted.

Ethics Exchange The SPHERE research ethics and governance community has proactively addressed the need to provide mechanisms that assist with ‘timely’ and ‘consistent’ ethics review processes and outcomes, not just within organisations but across the partners. Ethics Exchange is a new series of lunch-time discussion forums for low and greater-than-low risk ethics committee members. By hearing from experts and exchanging approaches, attendees can reflect on the approaches of their review colleagues as well as gain greater confidence in the decisions made by their own committees. Three sessions were held in 2023: • Consent in Challenging Circumstances • Paediatrics and Ethics Review • Registries and Ethics Review. 19

Highlights

Clinical Trials Platform Each session was recorded and made publicly available via the SPHERE Youtube channel, thereby building an ongoing knowledge repository for new and existing ethics committee members, ethics and governance officers, and researchers. Access to the recordings has grown steadily with over 200 views of the first session which was held in August.

Health Economics Workshop Held in November, the Health Economics Workshop was a huge success. Designed for non-economists, the workshop objectives were to: • provide a basic grounding in economics and economic evaluation concepts. •

enable individuals to critically appraise economic evaluation evidence and understand its strengths and limitations.

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provide guidance to researchers on how to incorporate health economics objectives in research project design.

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provide guidance, particularly for those working in public health, health policy and clinical settings to engage with health economists and establish the investment case for new programs and policies based on economic evidence.

SPHERE met its aim of creating a delegate mix of clinicians; those working in health policy and governance; consumer representatives; and both early career and established researchers. The workshop development and delivery was commissioned from The George Institute for Global Health; The Kirby Institute and The Centre for Health Economics Research and Evaluation (CHERE), UTS.

Highlights

Consumer & Community Involvement Platform SPHERE is co-leading a national collaborative effort with Australian Health Research Alliance (AHRA) members to accelerate the implementation of best practice Consumer and Community Involvement (CCI) in Australia. After five years of developing CCI capability and capacity, through grants and contributions by the Research Translation Centres (RTCs), AHRA received a $1 million grant from the Medical Research Future Fund. Led by SPHERE, Monash Partners and Western Australian Health Translation Network (WAHTN), research funded by the grant will build a network of engaged and upskilled consumers, including members of under-

represented community groups such as Aboriginal and Torres Strait Islander people. The knowledge hub will not only help to build a network of engaged and upskilled consumers but will also reflect the value of engaging consumers and community in research. The project also highlights the value of international and national collaboration in consumer and community involvement. “We have focused on sharing resources and expertise and avoiding duplication in an effort to add meaningful value and enhance the translation of research findings and discoveries into better clinical care,” said Acting Executive Director, Professor Chris White.

Highlights

Implementation Science Platform Clinician researcher pathway Nurses and midwives represent the largest proportion of health professionals (55%) and as providers of 24-hour direct care within acute care settings, are well-placed to lead and implement evidence-based practice change and deliver cost-effective health care. Research conducted by Australian nurses and midwives with research higher degrees, have delivered important care outcomes and cost savings: less frequent replacement of infusion sets saving $75 million in annual costs for central venous and peripheral arterial catheters, savings of >$560 per woman with the introduction of caseload midwifery, reductions in death and disability from stroke nursing protocols, with $65 million savings in health care costs. These examples reflect the potential for nurses and midwives to deliver evidence-based clinical and health system interventions that result in substantial cost savings. To further enable these opportunities to transform healthcare, we co-designed a Nursing and Midwifery Clinician Researcher Career Pathway which includes training and research career development. This pathway contains three major awards: Support Programs (Internship, Transitions, Mentorship), Training Opportunities (Scholarships for Honours, Masters by Research and Doctoral Studies) and Clinician Researcher Fellowships (Level 1 early career researcher to Level 4 established researcher/ Professorial Chair) (see Figure 1). Of note, the Pathway differs from previous nursing and midwifery research support initiatives in Australia in that it promotes fully-funded research opportunities, with no loss of salary. The Pathway is currently designed and costed for a 12-year period, with projections of 52 nurses and midwives with completed Research Higher Degrees, per metropolitan Local Health District (LHD), and 26 per rural and remote LHDs, over a proposed 12-year cycle.

Figure 1

The Pathway, supported by consumers, nursing and academic leaders, and aligned with existing UK and US models, is yet to be centrally funded in NSW. However, it provides a clear roadmap to expand the role of nurses and midwives to include clinician researcher training and support, furthering career choices, workforce retention and improving patient outcomes. The Pathway has formed the basis of a submission to the Special Commission of Inquiry into Healthcare Funding (October 2023) and is being prepared for submission as part of the 2023 National Nursing Workforce Strategy Consultation.

Highlights

Implementation Science Platform SPHERE Implementation Science Platform Webinar: Nursing Trailblazers talk about Implementation Science SPHERE's Implementation Science Platform, in conjunction with the Australian College of Nursing (ACN) and The Nursing Research Institute, hosted the recipients and finalists of the ACN’s, Health Minister’s 2022 Award for Nursing Trailblazers at this webinar. The Health Minister’s Award acknowledges nurse-led innovations and models of care which significantly improve health outcomes for the Australian community through evidence-based processes. Winner of the Award, Claire Lane, focussed her efforts on establishing the not-for-profit Save Our Supplies. Save Our Supplies partners with hospitals across Australia to collect clean, unused medical tools, garments and equipment for communities in need. Each year over $1.3M worth of medical supplies are sent to vulnerable communities and developing countries such as Papua New Guinea, Cambodia, Ethiopia and the Solomon Islands. Professor Josephine Chow, who is also a member of the SPHERE Nursing and Midwifery Implementation Science Academy, discussed how she and her team developed and successfully implemented the South Western Sydney Local Health District (SWSLHD) Clinical Nurse Consultant Research Quarantine Time Program, which remotely monitors COVID-19 patients in their homes.

The Nursing and Midwifery Implementation Science Academy. The Nursing and Midwifery Implementation Science Academy (The Academy) is a specialised subgroup of the Implementation Science Platform. It is a collective of nurses and midwives with a wealth of clinical and research expertise and experience enabling them to exert a substantial influence on patient outcomes, healthcare delivery, and health policy. A key aim of the Academy is to facilitate collaborative nurse/midwife-investigator initiated, multidisciplinary, multi-site implementation science research across the SPHERE network and within the Clinical 22

Academic Groups (CAGs). Two examples of impact in 2023 are: 1) The Assessment and Communication Excellence for Safe Patient Outcomes Plus Trial (ACCELERATE Plus). This successfully funded multi-site trial, led by Professor Sandy Middleton and Adjunct Professor Anna Thornton, is being conducted across eight hospitals and 24 wards in New South Wales (NSW) and Victoria. This steppedwedge cluster randomised trial includes a cost benefit analysis and process evaluation of an intervention encompassing nursing core physical assessment, patient-centered bedside handover, and improved multidisciplinary communication. 2) Formation of the Nursing and Midwifery Implementation Science Academy: Early Career Researcher (ECR) Group. Led by Dr Nicola Straiton, Research Fellow, SPHERE Implementation Science Platform, and Dr Helen Goldsmith, Research Development Manager, Sydney Children’s Hospitals Network, the Academy’s earlycareer researcher group seeks to strengthen connections between clinically based doctorallevel nurses and midwives and their academic counterparts, fostering a culture of collaborative research. The ECR group has a clear vision to promote the conduct of collaborative research projects across multiple sites within the SPHERE network and beyond.

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Knowledge Translation Platform VIVID 2023: Nourishing Health Organised and hosted by the SPHERE Knowledge Translation (KT) Strategic Platform, this event involved experts from the SPHERE Age and Ageing Clinical Academic Group and the UTS Disability Research Network, including health care consumers and their families (CCI). Alongside Maggie Beer AO, these experts shared their knowledge of food, memory, and the ageing process with VIVID attendees, including the impact of swallowing difficulties on food consumption. This event was part of the 2023 VIVID Ideas’ Human Nature Series to challenge the natural ways of thinking by exploring the ‘new normal’ across sex, relationships, body politics, and more.

Ethics Centre Residency: ‘Exploring Climate Emotions’ This project aimed to catalyse conversations – small and large, private and public – about how climate change is affecting the innermost thoughts and feelings of our communities. At its core, we are driven by an ethical proposition:

how can we live and act in a way that allows people and planet to flourish? During this residency Chloe Watfern and Priya Vaughan held a series of creative workshops with collaborators, including artists, psychologists,

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Knowledge Translation Platform

researchers and elders, to explore the ethical dilemmas at the heart of climate distress – from the dimensions of personal responsibility to issues of equity and the exacerbation of new and old social injustices.

UNSW Exhibition: ‘Care is a Relationship’

Brilliant Aged Care The Brilliant Aged Care project, funded by an Age in Ageing CAG grant, arose in response to research conducted by a multidisciplinary team of representatives of the academic and healthcare sectors within SPHERE, who collectively aimed to clarify what constitutes brilliant aged care. The challenge was not only to extract the essence of meanings embedded in the research findings, some of which were symbolic, cryptic, or poetic, but to bring them to life in the form of a compelling visual artwork. The artwork, created by artist Armelle Swan, is a combination of physical objects, 2D and 3D, in the form of paintings, assemblages and collage.

Care is a relationship was an exhibition drawing on four research projects led by the Arts-based Knowledge Translation Lab at the Black Dog Institute, SPHERE’s Knowledge Translation Strategic Platform, and UNSW’s 3C (Career Coaching for Carers) program. Each project explored different aspects of care, and the social, emotional and environmental relationships at the heart of health and wellbeing - from caring for a loved one with dementia, caring for our own and others’ mental health, to caring for country in the face of climate collapse. Each project used art as a tool to reflect and share knowledge and experiences for research and social change.

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Aboriginal Health and Wellbeing Disordered eating in Indigenous communities: a consumer driven co-production of a learning module for health professionals Indigenous people are at higher risk of developing eating disorders due to higher levels of psychological distress and lower mental health quality of life. Indigenous people score higher on measures of overvaluation, night feeding, and body image concerns compared to non-Indigenous populations. Although Indigenous people are at higher risk of having an eating disorder, they are not being screened or diagnosed for eating disorders due to comorbid health issues, an absence of culturally valid screening measures and a lack of clinical knowledge on EDs within Indigenous communities. There are no standards of culturally proficient ED practice for working with Indigenous people who are experiencing eating disorders or body image concerns. Community consultations with the staff of 23 Aboriginal Medical Services in 2022 highlighted a lack of knowledge on EDs and cultural proficiency among health practitioners. Consultation identified a need for further assistance to access services and educational resources for their staff and communities. The current project is developing a credentialled course in partnership with the Butterfly Foundation for clinicians to upskill and learn more about Indigenous communities and eating disorders, contributing to a more culturally proficient practice. Credentialing enables health professionals to identify a person with an eating disorder and enhances the effectiveness and consistency of treatment, increasing the chance of intervention.

Drug Health Indigenous Models Project Australian Aboriginal people score poorly on the majority of health indices. The Commonwealth and State Governments have targeted programs that aim to Close the Gap in health and wellbeing. Some of the most pressing disparities is the Gap in social and emotional wellbeing health determinants for Indigenous Peoples. A recognised opportunity for closing the gap is to ensure that health services for Indigenous Australians are provided by culturally proficient clinicians. Since the early 2000s, cultural proficiency training has been formally implemented into health education yet, two decades later, many Indigenous health consumers report experiences of discrimination and feelings of low trust when engaging with health services. This project is investigating practising Alcohol and Other Drugs (Drug Health) clinicians’ perspectives of the barriers and facilitators in implementing cultural proficient practices in their workplace. Data collection will be conducted using Nominal Group Technique (NGT) to generate findings from clinicians. The Yerin Dilly Indigenist framework will inform the values of the approach, and findings will be presented in coded themes through a constant comparative method. A clearer understanding of how clinicians perceive barriers and facilitators to cultural proficiency in their service can identify potential threats and opportunities to inclusive and culturally proficient care. Translating the results of this project into policy and practices that increase the cultural acceptability of Drug Health services will contribute towards more equitable health care environments for Indigenous Australians by increasing the perception of cultural safety.

The current project is developing a credentialled course in partnership with the Butterfly Foundation for clinicians to upskill and learn more about Indigenous communities and eating disorders, contributing to a more culturally proficient practice. 25

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Age and Ageing Consumer Council The Age and Ageing Clinical Academic Group (AAA CAG) has an engaged and productive Consumer Council. The Consumer Council brings together members of the community to provide healthcare consumer views, opinions, and experiences to the AAA CAG members. The aim is for all members to work together to help guide research projects, and to inform the community about research findings. In 2023, the Consumer Council reviewed nine research proposals and/or funding applications. Members of the Consumer Council have also joined four research teams as Consumer Chief Investigators. Ageing Institute The AAA CAG prepared a pitch for the Living Better Ageing Institute. The Institute aims to provide an implementation-focused think tank with key partners to support the integration of service providers, trainers, and academics to reduce fragmentation and build partnerships to implement positive changes to health and aged care in NSW. The process of preparing the pitch involved three rounds of consultation with over 70 stakeholders from consumer organisations, NSW Health, primary health networks, industry, and academia.

Project AI-ED The AAA CAG has been awarded SPHERE Seed Funding for Project AI-ED. The aim of this project is to enable older people to remain independent, functioning, and diminish disability and deterioration with the right care at the right time in the right place – which may not be the Emergency Department (ED). This will be achieved by using artificial intelligence to develop an algorithm that identifies older people at risk of potentially preventable ED presentations who can be safely and well-cared for in the community. The result will inform 26

early intervention approaches that empower and integrate community and primary care. The project is a partnership across the SPHERE network and beyond including Western Sydney University, UNSW, SWSLHD, SESLHD, SWSPHN, HammondCare, Carers NSW, and NSW Ambulance, and importantly, lived experience experts including consumers and carers.

Discovering Brilliance in Aged Care AAA CAG member Associate Professor Ann Dadich was awarded $27K for the project: ‘What constitutes a brilliant model of aged care?’ Findings from the study identified some commonalities in how people understand and demonstrate brilliant aged care. With a deep understanding of an older person, the study demonstrated perceptiveness and responsiveness in accommodating the older person’s changing needs and preferences. Another common ingredient in brilliant aged care was promoting choice for older people. Recognising and learning from people who contributed to brilliant aged care was only the first step of the study. A/Prof Dadich and the team then facilitated a series of workshops with experts to co-design a brilliant model of aged care. These workshops have enabled the team to identify what can be done in the aged care sector to promote brilliance, with the least effort and the most impact.

How can people with dementia and their caregivers be supported by the built environment? This project, led by Diana Karamacoska, determined how the built environment impacts the lives of people with dementia, which is an understudied component of care models. The project aimed to understand how the urban environment impacts the lives of people with dementia and their caregivers; and co-create

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Age and Ageing

and implement strategies to improve built environment design practices and enhance quality of life for people with dementia. Mixed methods research involving interviews, physical environmental evaluations, and one workshop, were held to inform an implementation plan for service providers to enhance quality of life among people with dementia through environmental design practices. Key outcomes included formally establishing the CanterburyBankstown Dementia Alliance and delivering 18 community-based presentations and events to raise awareness about dementia in five languages.

Co-designing a new implementation model for delivering support and education to carers of people living with dementia This project, led by Celia Harris, aimed to investigate the journey of carers of people with dementia from the point of diagnosis to navigation of the healthcare system and post-diagnostic support. The project was implementation-driven and translational in nature, as it was driven by objectives of developing feasible change for both clinical and community-led carer support. The project

aimed to generate a new co-designed model for delivering carer education and support in ways that best meet carer needs. This has implications for a range of sectors, as a wide range of disciplines are involved in the coordination of care for carers.

Improving bone health through use of the Co-designed OsteoPorosis Toolkit for culturally and linguistically diverse (CALD) communities (COPT-CALD) This project, led by Clarice Tang, aimed to expand the initial COPT-CALD tool to include information related to diagnosis, treatment commencement, and adherence phases of the care continuum for people from Vietnamese, Cantonese, and Mandarin speaking backgrounds, as well as to adapt the toolkit to include the Arabic-speaking communities. The outcomes of this project were achieved through three phases: (a) needs identification; (b) develop COPT-CALD 2.0; and (c) evaluate COPT-CALD 2.0 for the tool’s feasibility and acceptability. The pilot findings from this study have been used as background information for the 2023 MRFF consumer-led grant.

Highlights Cancer Recruitment of Mid-Career Research Fellows – Developing the next generation of future research leaders Through funding awarded via the Cancer Institute NSW Translational Research Capacity Building Grant, the Cancer CAG has recruited eight Mid-Career Research Fellows. Each Fellow is strategically aligned to the CAG’s Area of Focus: Poor Outcomes Cancers, Living Better With and After Cancer, Unwarranted Variation in Care and OMICS into Clinical Practice. To date, the Cancer CAG Mid-Career Research Fellows have produced significant research output including: • invited presentations and panels at international conferences including the American Society for Clinical Oncology (ASCO) and MEDInfo. • leading two BIG Ideas Workshops focused on Cancer Data and Cancer Nutrition, both workshops attracted national and international attendees. • awarded Seed Grant funding including a SPHERE Seed Grant to Dr Joanna Fardell • submitted multiple and collaborative grant applications. Each fellow will lead BIG ideas with key stakeholders, to develop ‘shovel ready’ projects, work with Area of Focus leads to build collaboration across the Areas of Focus, lead education initiatives aligned to their strategic focus, and drive their own research ideas forward. The Cancer CAG will support the Mid-Career Research Fellows with the development of a Leadership Program which will be bespoke to our fellows and their needs. This will include career coaching.

Building collaboration across the Cancer CAG and beyond The Mid-Career Research Fellows are working together across several projects and programs. These include: • Dr Frank Lin, in collaboration with Implementation Scientist Associate Professor Natalie Taylor and Head of Molecular Oncology at UNSW, Professor David Thomas, is leading the rollout of a novel precision medicine oncology clinic at Prince of Wales Hospital. The clinic combines both prevention for highrisk inherited cancer families and treatment for advanced cancer known as P-OMICs flow. The program will drive implementation of the P-OMICs flow model of care at Prince of Wales Hospital, leveraging existing Australian medical oncology and precision medicine projects. It will compare outcomes with other hospital settings, co-design and pilot test a scale-up model to enable local and national roll outs. The program is supported by an $6M MRFF RART grant awarded to A/Prof Natalie Taylor. • Dr Georgina Kennedy, in collaboration with Professor Geoff Delaney, Lead of the Cancer CAG, and Dr Tim Churches and Professor Louisa Jorm, Centre for Big Data Research in Health, is leading a cancer specific project within the $2.6M MRFF funded program to develop the next generation of clinical registries. Leveraging work already underway within the Cancer CAG using the Clinical Variations (CaVa) platform, the program will use advanced software engineering and artificial intelligence (AI) methods to transform near real-time data drawn directly from electronic medical records (EMRs) and other data, including imaging. The team is working with colleagues from other disciplines including orthopaedics and cardiovascular disease. They are also liaising with the state government on processes to streamline the consent process across NSW.

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Cancer

NSW Cancer Conference – Building Research Capacity across the state Held in Sydney in September, the second NSW Cancer Conference brought together over 440 cancer researchers, clinicians and consumers from across the state and beyond. The NSW Cancer Conference was co-chaired by SPHERE, Sydney Cancer Partners and NSW Regional Health Partners. SPHERE took on the role of lead coordinator. The two-day program was facilitated by an organising committee with representatives from each of the co-chairing organisations and Cancer Institute NSW. The program featured two international keynote speakers, over 20 national invited speakers and over 40 speakers invited to present from abstract. The program also featured over 200 poster presentations and multiple workshops. The presentations were from across the translational research continuum and featured a wide range of disciplines.

NSW Cancer Research Education Portal The development of the NSW CREd Portal was in response to stakeholder feedback and the need to have a centralised repository for educational resources developed by the three translational centres: SPHERE, Sydney Cancer Partners and the NSW Regional Cancer Research Network. In collaboration with the Cancer Institute NSW, the three translation centres developed a set of system requirements that would meet the needs of both internal and external stakeholders. The project commenced in May 2022 and SharePoint was determined by the Cancer Institute NSW, to be the most suitable platform for this stage of the project. The portal aims to be a platform where the three centres collaboratively produce and share content to support knowledge sharing between cancer researchers, clinicians, research administrators, and consumers. The portal which was launched in June also allows ‘on-demand’ access to resources. The statewide seminar series has been hosted on the platform since June.

Members of the Cancer Conference 2023 organising committee 29

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Cardiac and Vascular Health Major Impact Grant - A paradigm shift in the management of cardiovascular risk following hypertensive disorders in pregnancy using mini-hearts and patientderived stem cells This collaborative project spanned Cardiac and Vascular Health, Maternal and Women’s Health, Diabetes Obesity and Metabolic Disease, and Frontiers Technology CAGs in partnership with South Eastern Sydney Local Health District (SESLHD). Focusing on hypertensive disorders in pregnancy, the project employed in-vitro bioengineered models of the human heart to identify therapeutic targets, develop personalised treatments, and enhance patient management. The project’s outcomes have been presented at conferences, published, and paved the way for additional research avenues, securing additional funding from the Heart Foundation and MRFF.

Seed Grant - Care and management of existing cardiovascular disease for older people using community-based and residential aged care services There is increasing recognition of the importance of palliative care for patients with life-limiting cardiovascular conditions including heart failure (HF), associated with high morbidity and mortality with extensive use of health services. The study found outpatient palliative care was associated with lower emergency department visits (and associated intensive care admissions and invasive ventilation procedures) and lower in-hospital palliative care use, as well as increased GP visits. The collaboration with the Bankstown outreach team aims to disseminate these findings to target audiences and extend the research to encompass various cardiovascular conditions as well as regions.

NSW Research Translation Centres Cardiovascular Symposium Photo courtesy of Mim Phillipson, Sydney Health Partners

The NSW Research Translation Centres Cardiovascular Symposium Held in June, the Symposium united researchers and stakeholders from SPHERE, Sydney Health Partners, and NSW Regional Health Partners, along with government representatives and members of cardiovascular organisations. The sessions delved into statewide research priorities, the application of big data in clinical care, and the exploration of unmet needs through research discovery, innovation, and translation.

Seed Grant - A predictive model for nonadherence to guideline-recommended secondary prevention medications following an acute myocardial infarction (AMI) Blood pressure and cholesterol lowering medication is often prescribed after a heart attack to prevent subsequent events, but adherence can be low. A mixed methods study has been undertaken including data linkage with the Sax Institute 45 and Up Study and interviewing AMI survivors sourced from GP practices to develop a predictive model and clinical support tool for GPs to improve medication taking behaviour after AMI. Ongoing work is being undertaken to develop, test and refine the support tool.

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Diabetes, Obesity & Metabolic Disease Wollondilly Diabetes Program (WDP): Lifestyle Plus Diabetes mellitus poses a significant health burden, contributing to avoidable hospitalisations, amputations, cardiovascular events, renal failure, foetal malformations, and blindness. Challenges persist in fully implementing evidence-based diabetes care and adopting new approaches. The key to addressing the diabetes epidemic lies in prevention, achievable through lifestyle programs. Despite proven effectiveness, prevention programs have not been widely implemented in Australia. One area where a targeted prevention program has been introduced within Australia is Wollondilly. This is a rural area in South Western Sydney (SWS), and home to a pilot integrated diabetes care program (the Wollondilly Diabetes Program [WDP]). This program has brought specialist services and primary care together, alongside a local government

supported diabetes awareness and lifestyle prevention program, and incorporates a peer support framework. The diabetes awareness and lifestyle prevention program has been involved in multiple community events, and the piloting of outreach through Wollondilly Shire Council community services. The Hitachi Diabetes Prevention Program which has been implemented within the United Kingdom has been adapted to meet the needs of an Australian audience and is being delivered in the Wollondilly region. The project is supporting those at risk of diabetes to undertake a Diabetes Prevention Program that is supported by a Hitachi evidence-based diabetes prevention solution (app). Evaluation of Reach, Effectiveness (metabolic measures), Adoption, Implementation, and Maintenance (RE-AIM) of intervention components will test the sustainability of the framework to reduce the impact of diabetes, and its complications.

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Diabetes, Obesity and Metabolic Disease

Diabetes Contraception and Pre-Pregnancy Program High rates of congenital malformations exist in South Western Sydney in women with Type 1 and Type 2 diabetes (11% in Campbelltown and 6.8% in Liverpool compared with the background rate of 2%). The South Western Sydney Primary Health Network (SWSPHN) and South Western Sydney Local Health District (SWSLHD) are working together to implement the Diabetes Contraception and Pre-Pregnancy (DCAPP) program. This program aims to raise awareness of risk of unplanned pregnancy and contraception methods in health care professionals and women of childbearing age with Type 1 and Type 2 diabetes, while providing easy access to best practice pre-pregnancy care for women who have decided to become pregnant. It is estimated that serious malformations can be prevented each year in South Western Sydney, improving the lives of the families concerned and saving $10m of lifetime costs. To increase project sustainability the DCAPP project team has collaborated with Outcome Health to develop a prompt within a Decision Support Tool in General Practice Software to Identify women with type 1 or type 2 diabetes who are at risk of unplanned pregnancy and potentially avoidable foetal malformations, alerting the primary care team and providing simple guidance on next steps in management.

Apps and Peer support for a Healthy future and Living Well with Diabetes – Mental Health (APHLID-M) Forty to 60% of young people with Type 1 or Type 2 diabetes have a mental health condition, affecting their ability to self-manage their diabetes thereby reducing their quality of life while increasing the risk of complications. Therefore, hospitalisation for acute glycaemic events and ongoing high HbA1c are more common among those with mental health issues. Limited access to mental health services can aggravate the situation. This project seeks to create and test a technology-enabled model of care leveraging peer support, using a clinically-validated digital platform. The model combines (i) apps to address common mental health issues including anxiety, depression and eating disorders, (ii) linkage to digital tools to self-manage type 1 diabetes, (iii) a proven digital platform for day-to-day lifestyle and type 2 diabetes self-management, (iv) digital linkage with the healthcare team and (v) access to an online peer support network. The model will be evaluated rigorously and translated to the real world across seven hospitals and two regional Aboriginal Medical Services. A six-month randomised controlled trial of the model will compare the impact of the approach on distress, wellbeing, healthcare costs, glucose and weight management among 142 young adults living with diabetes and mental health conditions. A parallel cohort study among those without a mental health condition will study the effect of the approach on maintenance of good mental health. The project has pathways to scale through several public hospitals including Campbelltown, Westmead Children’s, St Vincent’s, St George Liverpool, Bankstown-Lidcombe Hospitals, the Australasian Diabetes Data Network, patient and other supporting organisations. The team have unique expertise in mental health included disordered eating, diabetes including the critical transition period, implementation science, health economics, statistics, qualitative evaluation, randomised clinical trials and consumers.

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Early Life Determinants of Health STARS for Kids program The Strengths-based, tiered, accessible resources and supports (STARS) for Kids Program, funded by a $1.9 million MRFF grant, aims to enhance early identification of child development, parental mental health, and family social care needs. By engaging children and families during opportunistic contacts with various service providers, both governmental and nongovernmental, the program will identify, link and navigate families to the right services at the right place and time. The initiative includes a tiered model of care and wrap-around social care for families with complex psychosocial needs. This model is currently being trialled in three diverse communities across Australia: a multicultural setting in Fairfield, South-Western Sydney; a regional/rural and Aboriginal community in Taree, NSW; and a low socioeconomic community in Wanneroo, WA. The ultimate goal is to scale up the program nationally.

Integrated Kids Hubs - Ensuring Equity of Access for Children Funded by a $850K TRGS grant from NSW Health, this project aims to determine if integrated Hubs are effective in increasing access to child and family services for disadvantaged urban and regional families with children aged three years and under, thus improving early identification of developmental vulnerability, parental wellbeing and capacity, and addressing unmet psychosocial needs. If these issues are not identified and addressed early, these children will go on to struggle in school and life. The project will produce the first large-scale Australian evidence on Hubs that support families in the first 1,000 days of their child’s life. By embedding a strong knowledge translation strategy into the project, this work will inform the scale-up of Hubs, nationwide.

Community consultation of the intervention hub (CCI) with culturally and linguistically diverse (CALD) students from Liverpool schools The aim of this project is to work with young people from South West Sydney, a substantially CALD community, to understand their perspectives on health-related problems they face at schools and in the community and how they can be effectively managed. A series of engagement sessions in partnership with Liverpool Girls High School are being run to co-consult several health-related topics relevant to children and young people including: (i) thoughts on mental health; (ii) getting parents on board about mental health; and (iii) perspectives on vaping among adolescents. This project is anticipated to embolden the voices of children and young people so that they may share their experience and perspectives widely with researchers, clinicians, policy makers and NGOs. With this knowledge and understanding, we can enhance future research and policy to suit the identified needs of children and young people.

Community consultation with CALD students

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Early Life Determinants of Health

First 2000 Days Care Connect (FDCC) FDCC is a child and family Hub where health and other agencies work together to help migrant and refugee women successfully move from maternity to Child and Family Health (CFH) services and attend CFH checks. The research aims to assess the impact of FDCC on CFH outcomes in comparison to current care. The evaluation focuses on three key measures: first, the percentage of children completing their CFH checks up to 12 months of age, with an emphasis on improving the identification of delayed development in children and supporting mothers’ wellbeing and social needs. Second, the study examines the process of implementing FDCC, assessing its feasibility, appropriateness, and acceptability for both consumers and services. Lastly, the research aims to determine the costeffectiveness of introducing FDCC in other locations, demonstrating potential health savings, including a reduction in hospital visits. FDCC is based in South Eastern Sydney Local Health District (Rockdale), South Western Sydney Local Health District (Miller) and Northern Sydney Local Health District (West Ryde).

Centre of Research Excellence in supporting child and family health for priority populations This $2.5 million NHMRC-funded Centre of Research Excellence (CRE) focuses on four key themes to empower parents to access timely and appropriate care, with a specific emphasis on service navigation support. These themes involve co-designing the STAR program framework with consumers and the community, as well as implementing and evaluating tailored tiered interventions. Additionally, they focus on utilising Knowledge Translation approaches and Health Economics analysis for policy and service translation, while simultaneously enhancing the health and medical research workforce capacity through novel training approaches. This project, supported by a National Health and Medical Research Council Centre of Research Excellence Grant for 2023-2026, aims to shift the assessment and delivery of care from a riskbased to a resilience-based clinical care model for priority populations, making it nationally and internationally relevant.

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Frontiers Technology Clinical trial of a new Internet-of-MedicalThings device for home-based treatment of anorectal disorders This clinical trial, led by Dr Jerry Zhou from Western Sydney University, aims to revolutionise the treatment of chronic constipation and faecal incontinence through an Internet-of-Medical-Things (IoMT) device designed for home-based anorectal biofeedback therapy. The aim of the project is to conduct two studies. The first is a pilot feasibility study currently being conducted at Camden Hospital in southwest Sydney. The study aims to determine if the new device can provide home-based biofeedback therapy with minimal direct clinician supervision. The second part of the project is a randomised parallel controlled trial to compare home biofeedback using the new device against conventional clinic-based biofeedback. This randomised controlled trial commenced in early 2023 at Royal Prince Alfred Hospital. “A secondary objective is to prospectively assess whether home biofeedback is a more costeffective alternative to the standard clinic-based therapy.” Dr Zhou acknowledges that this is not the first time that a home-based biofeedback device has been trialled in Australia. However, previous attempts such as the Peritron Perineometer (an analogue air-pressure probe connected to a numerical readout) were not successful as therapists found it challenging to ensure correct exercises were performed at home and lack of technology meant therapists were unable to monitor patients effectively. “With the internet of things and smart technology, we now have the technology to capture the data effectively and provide that

data to both patients and clinicians in real time. This includes capturing key outcome parameters such as training adhesion, muscle tone changes, bowel symptoms which allows for enhanced clinician review and treatment evaluation. “The acceptance of telehealth as a real alternative to face-to-face appointments has also helped to make this home-based treatment a reality.”

See Impact story on Page 17 for more about this inititative. 35

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Frontiers Technology

Virtual Cardiac Rehabilitation: Development and initial user testing This project led by Professor Kim Delbaere (NeuRA) was geared towards the development of a comprehensive, individually tailored cardiac rehabilitation program that can be delivered to hospital outpatients in their home. “TeleClinical Care – Exercise (TCC-Exercise)” is a smartphone application which connects to peripheral health monitoring devices, and remotely administers a personally tailored exercise rehabilitation program, including aerobic and dynamic resistive exercises to patients who have recently experienced a major cardiovascular event. It will contribute to the transformation away from the hospital-based model of care to community-based care and result in lasting health benefits by increasing physical activity levels and self-management of cardiovascular health. The ultimate goal is to integrate the virtual cardiac rehabilitation into

one complete user-experience. The proposed virtual cardiac rehabilitation program (TCCCR) will address issues beyond the unmet need associated with physical distancing during the pandemic. Through the TCC-Cardiac trials, positive impacts on patient wellbeing were observed. Patients became more aware of their health and much better at self-care, including taking medication regularly. In the future, the virtual care service and remote monitoring team will migrate to a TCC-Heart Failure implementation based on current TCC-Cardiac learnings. It is anticipated that this will become business as usual within SESLHD. TCC-Exercise will be used as part of the TCCCardiac trial, which is funded by NSW Health through a grant known as the NSW Translational Research/ Health Innovation Grant (2021 to 2024).

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Genome Connect GenomeConnect continues to be the premier genomic translational research group in NSW. The transition clinic results are being written up for publication, the genomic trainee program continues to flourish and the genomic course has been transferred successfully to an online Canvas system at UNSW with two courses already provided. There are additional translational innovative programs (outlined below) which are starting to show useful and interesting results.

Education and Online Genomic Analysis short course SPHERE GenomeConnect ran face-toface Clinical Genomics Courses in Sydney and in Hong Kong in 2018 and 2019 before the COVID pandemic. In collaboration with UNSW, GenomeConnect has now developed and delivered a combined online and faceto-face Clinical and Laboratory Diagnostic Genomics short course using Canvas. The course was offered in May 2023. The course comprised online self-paced lectures and face-to-face workshops. It was designed for people who are interested in gaining knowledge and an understanding of the tools and methods required for the clinical genomic diagnostic process. The course was targeted towards, and attended by multidisciplinary professionals including clinicians, scientists, allied health professionals, nurses, medical specialists and trainees, genetic counsellors, and researchers. Course content included introductory online lectures on genome structure, the basis of Mendelian mutations, variant analysis, and interpretation and genomic bioinformatic pipelines. Practical workshops in genomic analysis and related counselling issues were based on real world cases and provided an opportunity to analyse human genome data in a clinical setting.

Prenatal genomics - PreGen Seed funding from SPHERE helped to secure an MRRF PreGen Grant that aims to evaluate the impact of different forms of genomic testing on decision making for health care providers regarding diagnosis, counselling, management, and postnatal care and to develop and then implement genomic testing for foetal structural abnormalities. This multicentre, prospective project directly compares the pregnancy and neonatal outcomes of current diagnostic standard of care approaches (microarray) with genomic testing (WES or WGS) as well as the health economic, psychosocial and testing resolution in patients tested with WES or WGS. This information will be used to establish familycentric antenatal genomics management that includes health economic and psychological assessments to determine best management and the cost effectiveness of each approach. This will reduce perinatal delays to diagnoses and shift diagnoses to within pregnancy rather than in high cost NICU environments. PreGen data will then be used to promote a federal MBS item number for prenatal genomic testing which will have wide-ranging implications for perinatal care in Australia.

Development of a GenPhen database GenomeConnect with the Randwick Genomics Laboratory has developed a GenPhen 37

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Genome Connect

database which will store phenotypic and genotypic information from all families having diagnostic WES and WGS in both a research and clinical diagnostic capacity. Rare diseases affect hundreds of millions of people in the world. More than 50% of Mendelian diseases remain undiagnosed because of incomplete phenotype information and lack of searchable genomic databases. To overcome these issues, we developed a Genotype and Phenotype Atlas (GenPhen) containing the Human Phenotype Ontology (HPO) terms and the variant information. GenPhen is well designed to accommodate more than 100k samples. Currently, there are 5000 samples imported in GenPhen. A website is developed to query genotypes for phenotypes to improve gene identification and reporting, which represent major advances in genomics globally.

Upcoming projects Long-read sequencing (LRS) allows for the retrieval of >10,000bp sequencing reads compared to the 75-300bp obtained using short-read sequencing systems. These technologies provide several advantages for DNA and RNA sequencing over traditional short-read sequencing (SRS) techniques. An initial honours student is working on a non-invasive approach to prenatal diagnosis using digital droplet PCR. A second honours student is sought to assess the use of long read sequencing for phasing variants and a panel approach to gene expansion detection. AI systems to assist with genomic pipelines are being investigated through collaborations with the AI group at UNSW. Translational work to assess the movement of these technologies into a clinical service is ongoing.

Highlights

Healthy Urban Environments Special issue of Public Health Research & Practice Journal on the role of urban planning for health Over 18 months, the Healthy Populations and Environments Platform (previously called Healthy Urban Environments) worked collaboratively with the editorial team at Public Health Research & Practice, to collate a special issue on the role of urban planning for health. This special issue showcases the findings and impacts of eight Platform projects, to highlight the diverse roles urban planning plays in promoting and safeguarding health and wellbeing for its populations and environments. Topics covered include measuring and improving resilience to the effects of climate change, the role of emerging technologies in reconnecting urban-dwelling Aboriginal peoples to Country as cultural therapy, and the divergent outcomes of planning and policy on communities’ access to fresh and healthy food options. Public Health Research & Practice is Australia’s premier journal in the field of public health, environmental and occupational health. Published quarterly by the Sax Institute, it has wide readership across academia and practice in Australia and internationally. This special issue was published in December 2023.

infrastructure and services, as well as safety. Funded by the NSW Department of Planning, Housing and Infrastructure, this project involves five SPHERE partners, to investigate how city planning can help improve the sense of belonging, home and safety of our Lesbian, Gay, Bisexual, Trans and Gender Diverse, Queer, Intersex, Asexual and other sexual minority (LGBTQIA+) communities living in the Six Cities Region of NSW. Findings of a preceding pilot project, funded by the Healthy Populations and Environments Platform, highlights the policy oversight across many of Australia’s local government areas in considering the specific needs of the LGBTQIA+ communities. The project team has been invited to present at more than a dozen public and industry forums, emphasising governments and industry’s growing interest in inclusivities for health. It has led to change in practice, where operational policies on inclusivities have become more public, as well as further seed funding support from the UNSW Ageing Futures Institute.

Inclusive place-based planning for LGBTQIA+ communities There has been growing interest in recent years to recognise a broader range of factors that affect health and wellbeing both positively and negatively. This includes strategies to improve the inclusiveness of our urban environments as means to improving and facilitating access to 39

Highlights

Infectious Disease, Immunity and Inflammation Scale-up of point-of-care hepatitis C testing in Australia New point-of-care HCV testing technologies capable of detecting current HCV infection in one hour are a ‘game-changer’. These new tests enable diagnosis and treatment in a single visit, overcoming the barrier of multiple visits that frequently leads to loss to follow-up. Through our SPHERE-funded Triple I Seed Grant, we demonstrated high treatment uptake following point-of-care HCV RNA testing and same-visit treatment at a needle and syringe program compared to standard of care. We have leveraged the initial SPHERE funding to obtain >$20M in cash ($12.7M) and in-kind ($7.3M) funding [Australia Department of Health, $6.5M (cash); NHMRC, $2.9M (cash); MRFF, $2.1M (cash); Gilead Sciences, $1.3M (cash); Cepheid (industry), $5.6M (in-kind)].

We have now partnered with more than 150 consumer, practice, and policy stakeholders to deliver a government-funded national program to implement point-of-care HCV testing at 90 sites nationally, including community clinics and prisons. Our program has trained 213 providers, performed 15,603 tests across 367 services, treated 1,242 people (9% of all treatment in Australia now occurs through the program). Our evidence has informed regulatory approval in Europe and Australia and 2022 WHO and Australian Clinical Guidelines. This program is the first globally to evaluate scale-up of point-of-care HCV testing and treatment across settings, providing critical information on this approach to reduce prevalence.

Highlights

Infectious Disease, Immunity and Inflammation

Triple I Seed Grants

The Triple I UNSW Research Theme and SPHERE CAG extended their congratulations to the early/mid career researchers who were awarded the 2023 Triple I Seed Grants and to eight EMCRs who received their Skills Advancement Grants.

Immunology scRNAseq Workshop

This event not only enhanced participants’ technical proficiencies but also brought together a network of researchers from across Sydney, fostering the development of collaborative networks in SPHERE.

Cancer and Immunology Ideas Forum The Cancer and Immunology Ideas Forum, now in its third year, was held in November bringing together Cancer and Immunology researchers and clinicians from across Sydney. Spearheaded by Dr Sarah Sasson and Associate Professor Orazio Vittorio, the forum featured a notable interstate plenary by Dr Tess Gargett from the University of South Australia, complemented by engaging EMCR pitching sessions with industry-sponsored awards. Support for this event came from Triple I UNSW Research Theme/ SPHERE CAG, Cancer CAG and the UNSW Cancer Research Theme.

The scRNAseq workshop held in August was specifically tailored for beginners and those who have recently commenced their journey in single-cell genomics. Attendees were immersed in a comprehensive program that offered foundational skills necessary to navigate the nuances of single-cell genomics including hands-on coding utilising advanced bioinformatic packages. The success of the workshop was echoed in the enthusiastic feedback from the participants, where they praised the practical, hands-on sessions, highlighting the ease with which complex topics were made accessible. The success of the workshop can be attributed to the EMCR Project Lead, Dr. Chan Phetsouphanh, and the concerted efforts of the organising committee and bioinformatics tutors: Dr Sara Ballouz, Dr Katherine Jackson, and Dr Raymond Louie.

2023 UNSW Cancer & Immunology Ideas Forum

Highlights

Kids to Adults (K2A) Youth Mentorship Program The involvement of young people as partners in policy and health research is critical to ensure that research, policy and service delivery are accessible and meaningful to young people. K2A, and its national constituent Child UnLimited, has co-designed a Youth Mentorship Program with our consumer network. It aims to empower young people with skills to become the health advocates of the future. The co-design process has been driven by Tiana Kittos, a young person with lived experience of cancer, who is a member of the K2A/Child UnLimited Consumer Board. The program was launched in March 2023 and recruited 15 mentees; young people with lived experience of chronic illness, as well as mentors from across the research, clinical and not-forprofit sectors. The cohort of mentors recruited from the K2A/Child UnLimited Research Network have prepared a range of consumer activities for mentees including: co-leading a workshop about consumer engagement, providing feedback to a grant proposal, presenting research at a conference and cocreating art that explores healthcare transition experiences.

Child UnLimited Parliamentary Launch In September 2023, Child UnLimited (the national constituent of the NSW-based K2A CAG) held a launch at Parliament House to raise awareness of whole-of-life challenges faced by children with chronic illness. The event was hosted by the Parliamentary Friends of Child and Adolescent Health; Dr Mike Freelander MP and Dr Monique Ryan MP, and was attended by around 70 people comprising consumers, clinicians, not-for-profit members and founders, researchers and colleagues from across Parliament.

Child UnLimited Parliamentary launch

Presentations were given by K2A consumers on integrating the voice of families and young people into the network and the lived experience of a young person with chronic illness. This was followed by a panel discussion with K2A directors, researchers and consumers on issues and solutions faced by consumers and their families on the themes of mental health, rural health and transition from child to adult healthcare.

Transition Compass Chronic health conditions require lifelong engagement with specialist care. An estimated 2.5 million young Australians will require transition from child to adult services over the next 20 years. However, there are no national guidelines or standardised models of care for transition across Australia. The transfer from paediatric to adult care puts many patients at a higher risk for medication non-adherence, is a high-risk period for loss to follow up and leads to increased disease-related morbidity and mortality. To address this issue, K2A collaborated with the ACI Transition Care Network to host a

Highlights

Kids to Adults (K2A)

national roundtable on transition to adult health services. This resulted in a networked submission to the NHMRC MRFF grant scheme to evaluate a new model of transition care and was successfully awarded $4.7 million over five years. The consumer engagement strategy was developed by the K2A/Child UnLimited Consumer Engagement Officer to ensure that consumers are engaged from the beginning as active participants in the research process. The program collaborated with young people and families from the Child UnLimited Consumer platform to co-design the intervention and develop a scalable model of care. This will be a world first, multi-site trial of a tailored intervention to improve the transition to adult care for young adults with chronic medical conditions.

SC4C The Strengthening Care for Children (SC4C) project is an integrated model of care developed to strengthen the paediatric care skills of GPs and confidence in paediatric care and reduce referrals for paediatric patients to hospital and outpatient clinics. This four-year NHMRC

partnership grant (2020-2023) consists of: • Weekly-fortnightly GP-paediatrician coconsults with children over a 12-month period; • Monthly case discussions; and • Paediatrician email/telephone support to GPs in between Pilot data from five Victorian general practices show that the model reduces GP referrals to hospital services, improves family trust in the GP, improves GP quality of care; and improves GP confidence in paediatric care. The SC4C trial has partnered with primary care, government, and paediatric hospitals including the Sydney Children’s Hospitals Network to scale up and evaluate the effectiveness and cost-effectiveness of the SC4C model in Victoria and NSW. To date, the trial has delivered over 2,000 GP-paediatrician coconsultations with paediatric patients. Watch K2A Director Prof. Raghu Lingam highlighting the SC4C trial: https://www.youtube.com/ watch?v=nqq58iH7cjs

Highlights

Maternal and Women’s Health

Innovative exergame program to increase physical activity for pregnant women This study, led by Associate Professor Deb Fox, our new CAG co-lead, is revolutionising the approach to physical activity during pregnancy. The study delves into the effectiveness of employing an exergame – an interactive video game – as a means to encourage regular physical activity among pregnant women, while also exploring its potential in reducing pregnancy and birth complications. This collaborative study draws expertise from various domains, including academics from the School of Sport, Exercise and Rehab, the NSW Ministry of Health, and the Faculty of Engineering and IT. Together, they aim to not only assess the success of the exergame program but also to gain insights from the perspectives of pregnant women. A significant milestone in 2023 was the completion of Gemechu Kumera’s thesis, titled ‘Antenatal Exercise Using an Innovative Exergame Program.’ Supervised by Associate Professor Deborah Fox, Professor Rob Duffield, Dr Jaime Garcia, and Ms Justine Salisbury, this feasibility study developed a Nintendo program aligned with guidelines for safe physical activity during pregnancy. The study explored the associations of exergame programs with

pregnancy and birth outcomes, shedding light on women’s views and experiences of exergaming during pregnancy. Looking ahead, we have submitted an application for the MRFF 2023 Maternal Health and Healthy Lifestyles Grant Opportunity. If successful, this grant will fund a cluster randomised control trial in rural and remote settings for a parallel project named ‘Project Natal.’ This ambitious endeavour aims to develop a bespoke exergame tailored explicitly for pregnancy, eliminating the need for additional commercial equipment. The project’s impact extends beyond research papers and studies. It has been showcased at four national and international conferences in 2023, highlighting its significance and potential for transforming the landscape of physical activity during pregnancy.

Aboriginal breastfeeding: reclaiming our traditions This study led by intern Kaarina Paasila, under the guidance of Aunty Kerry Doyle and Annette Wright, focuses on implementing a culturally appropriate program to enrich the practice of Aboriginal breastfeeding within the South Western Sydney Local Health District (SWSLHD). The research has been disseminated to Aboriginal health centres as part of the cultural protocol and ethics process for Aboriginal Health and Medical Research Council (AHMRC). In 2023, we collected survey data seeking insights directly from the community and developed informative brochures, in Dharug and Dharawal languages. These brochures have received the esteemed approval of language custodians, marking a significant step in preserving and promoting cultural heritage.

Highlights

Maternal and Women’s Health

To enhance accessibility and promote cultural understanding, each brochure includes a QR code linking to instructive YouTube videos. https://www.youtube.com/watch?v=f0lsfBhaY0 and https://www.youtube.com/ watch?v=Y6CVVmEtawc

BESt: The Birth Experience Study In 2023, the Birth Experience Study (BESt), led by Dr. Keedle at WSU, emerged as Australia’s most extensive exploration of women’s birth experiences. The study, encompassing nearly 9000 participants, brought attention to a significant finding: one in 10 women reported experiencing a degree of ‘obstetric violence.’ This revelation has sparked widespread discussion, coinciding with the ongoing Parliamentary Birth Trauma Inquiry.

BESt’s influence also resonates in the realm of policy, with a submission report submitted to the NSW Inquiry into Birth Trauma. Dr. Keedle’s active participation in the inquiry, including attendance at the first day of hearings, underscores the study’s real-world impact. Internationally, Dr. Keedle has been a prominent ambassador for BESt, presenting findings at conferences in the UK, Ireland (as an invited speaker), ICM in Bali, Indonesia, ACM National in Adelaide, and as a keynote speaker at the ACM WA conference in Perth. The Birth Experience Study - International Collaboration has flourished, now spanning 13 countries across Asia, Africa, Europe, and South America.

Notable highlights from the year include the publication of an open-access article on Obstetric Violence in December 2022. Accompanied by a feature in The Conversation, the publication garnered substantial media coverage, including three interviews on ABC radio shows and media articles, such as in the Sydney Morning Herald. The methodological intricacies of BESt have earned scholarly recognition, with a paper accepted for publication in the Journal of Nursing Scholarship. Additionally, a forthcoming paper in BMC Pregnancy and Childbirth explores a content analysis of over 6000 comments detailing what women would do differently in subsequent pregnancies.

Prof Dahlen & Dr Keedle at the NSW Inquiry into Birth Trauma hearing

The academic impact extends to psychology honors theses, currently in preparation for publication, and a protocol paper in its early draft stage. Further contributions come from two Bachelor of Midwifery students actively engaged in the WSU summer scholarship program, delving into the survey data. 45

Highlights

Musculoskeletal Health Over the years, key foci for the MSK CAG have been issues concerning osteoporosis, osteoarthritis and partnering with consumers to improve chronic disease management. Over 2023, we have continued to undertake research and publish related results.

#STOP: The Fracture Stop Study (Medication Safety in Osteoporosis) This study commenced in March 2023 in eight different sites across New South Wales and Victoria. It involved many MSK CAG members including Geraldine Hassett, Kathy Gibson, Justine Naylor, Ayano Kelly, Kate Luckie, Steve Frost and Matt Jennings. As of late October, the study has recruited 114 participants who have consented to be included in the study, and an additional 185 potential participants. An application to extend the grant by 12-months is in progress, which will allow the study to recruit participants for a further six-months and thus support achieving higher recruitment numbers. The study protocol has been published in BMJ Open.

OpioidHALT MSK CAG Leads Justine Naylor and Bernadette Brady and collaborators have secured a $1,479,940 grant in the 2022 MRFF Clinician Researchers – Nurses, Midwives, and Allied Health round. The project aims to explore responsible pre-operative opioid tapering in patients prior to hip and knee arthroplasty. This funding has been awarded following the successful completion of a pilot study. Professor Naylor was also invited to speak about OpioidHALT at the APA Ignite National Conference. Related work, partly funded by a MSK CAG Blue Sky Seed Grant, was recently published.

Creaky Knees Crepitus is a feature of osteoarthritis that may affect one’s participation in exercise. An informed understanding is required to the perceptions that people have of their knee crepitus and how it affects their exercise behaviours. This qualitative study funded by Arthritis Australia and led by Jeanette Thom, aimed to investigate the role that crepitus may play in beliefs about exercise and knee health. The study found that crepitus does not appear to be a major cause of concern for people who experience it. However, it is a factor that influences exercise behaviours, as is pain. If health professionals could guide people about concerns about their crepitus, they may be more confident in exercising to benefit their joint health. The study has been published in Musculoskeletal Care.

Knee Osteoarthritis This qualitative exploratory interview study aimed to understand perceptions that knee osteoarthritis patients have regarding their experiences of guideline-based recommendations within care received from physiotherapists in private practice. The study found that overall, patients were satisfied with their physiotherapy care but would have liked more specific osteoarthritis education and longer-term management. Improvements in patient outcomes may be possible if more elements of guideline-based care are regularly provided, including enhancing osteoarthritis education and fostering behaviour change. The study has been published in BMC Musculoskeletal Disorders.

Highlights

Musculoskeletal Health

The Natural Helper Project MSK CAG Leads, Bernadette Brady and Justine Naylor and collaborators have secured over $500K from the 2022 MRFF Consumer-Led Research grant round for the ‘Natural Helper’ project. The type 1 hybrid effectivenessimplementation cluster randomised control trial will expand the pilot research published in BMC Musculoskeletal Disorders (https:// rdcu.be/dqrJx) and supported by a SPHERE

Clinical Research Fellowship. It will evaluate the implementation of volunteer cultural mentors in participating chronic disease clinics who will work alongside healthcare teams to improve chronic disease management offered to people from a CALD background. The protocol has been published in BMJ Open (https://bmjopen. bmj.com/content/13/1/e069120).

Highlights

Neuroscience, Mental Health & Addiction Neuroscience Forum: ‘Navigating the UNSW Neurosciences Landscape’

SCHN’s ‘Developing Brain’ Clinical Research Colloquium The Neuroscience, Mental Health & Addiction CAG provided in-kind support to the Sydney Children’s Hospitals Network for the second ‘Developing Brain’ Clinical Research Colloquium’ in November. The event showcased the innovative research in child and youth neurosciences and mental health, strengthening research collaboration and demonstrating the achievements of local researchers from a wide range of disciplinary backgrounds.

The CAG sponsored the inaugural UNSW Neuroscience Forum: ‘Navigating the UNSW Neurosciences Landscape’ in September. The forum considered the relationships and opportunities inherent to the complex UNSW Brain Sciences landscape. The event provided an opportunity to discuss how researchers can be better linked across the Neuroscience network to improve collaboration opportunities and community engagement. Participants came from across UNSW, including the Faculty of Engineering (Graduate School of Biomedical Engineering, Tyree Institute of Health Engineering), Faculty of Medicine & Health (School of Clinical Medicine, School of Biomedical Sciences, and MRIs Neuroscience Research Australia and Black Dog Institute) and Faculty of Science (School of Psychology), among many others. Attendees conducted research in areas such as medical bionics, neurophysiology, neuroimaging, autonomic neuroscience, neurogenetic disorders, dementia, and many more – demonstrating the rich diversity in the neuroscience space at UNSW, and the real need to better unite these areas for collaborative gain. RIGHT: Hon Kristina Keneally, CEO, The Sydney Children’s Hospitals Foundation (SCHF) with Developing Brain Research Publication Award recipient, Dr Eden Robertson. The awards were sponsored by SCHF.

The colloquium featured keynote talks from Prof Michelle Farrar, Professor of Paediatric Neurology at UNSW Sydney and Sydney Children’s Hospital who presented, ‘The past, present and future of developmental neuroscience’ and Prof Jennie Hudson, Director of Research at the Black Dog Institute, who discussed Child Mental Health research in Australia. Presentations were heard from key and influential researchers at the top of their fields with topics on: the Australian Paediatrics Surveillance Unit, Fetal Alcohol Spectrum disorder, the NSW Child Development Study. Epic CP, a project addressing the double jeopardy of disadvantage and disability and CP Quest, a group launched to better integrate the lived experience of people with cerebral palsy into programs of research.

Highlights

Neuroscience, mental health and addiction

2023 Neuroscience Mental Health & Addiction Seed Grants

In 2023, the Neuroscience, Mental Health & Addiction Theme/CAG funded eight early to mid-career seed grant projects. Modulation of the gut-brain axis in prenatal opioid exposure UNSW School of Clinical Medicine, Sydney Children’s Hospital (Dr Josie van Dorst) Novel insights into health service use of young people who experience alcohol and other drug-related harm and opportunities for intervention Dr Wing See Yuen, UNSW National Drug and Alcohol Research Centre The Skeleton in the Mental Health Closet: Nutritional Deficiency-Related Hospitalisation in Mental Health Service Users in NSW Australia Dr Scot Teasdale, UNSW Discipline of Psychiatry & Mental Health

Healthy Body & Mind Program: A pilot randomised controlled trial to improve quality of life, reduce pain, and reduce dementia risk in people living with cognitive decline and osteoarthritis Dr Claire Burley, UNSW School of Health Sciences and School of Clinical Medicine Development and Validation of a Paddle Trip System to Deliver Unanticipated, Controlled and Realistic Obstacle Trips in Older People Dr Yoshiro Okubo, Neuroscience Research Australia Do drugs of abuse directly impact the neural circuits responsible for stimulus-controlled behaviour? Project Leader: Dr Karly Turner, UNSW School of Psychology Anti-inflammatory Effects of Abdominal Vagus Nerve Stimulation on Experimental Intestinal Inflammation Dr Tianruo Guo, UNSW Graduate School of Biomedical Engineering

Methadone and buprenorphine for opioid dependence in pregnant women: Quantifying use and health outcomes of mothers and newborns Dr Duong (Danielle) Thuy Tran, UNSW National Drug and Alcohol Research Centre

Highlights Palliative Care SPHERE-Stanford Quality Improvement Program 2023

MRFF RART 2.2 Grant – Palliative Care in residential aged care model of care

The third round of the SPHERE-Stanford Quality Improvement Program is underway with six teams from across the SPHERE partners undertaking training in quality improvement techniques from Stanford Medicine, and applying these practically to solve a local issue in their workplace.

This project addresses the gap in care that exists in residential aged care facility residents’ access to quality and timely palliative care, through evaluating existing initiatives, establishing end user needs, and developing an integrated and coordinated model of care to support the workforce.

Teams from St Vincent’s Health Network, Bankstown-Lidcombe Hospital, Calvary Hospital, Liverpool Hospital, Chris O’Brien Lifehouse and the Langton Centre are addressing topics including homelessness and access to palliative care, psychosocial assessment and social work support access at end of life, carer support, interpreter services support, discharge summaries, and patients with substance use disorders advance care planning.

Work to date has informed two projects to improve palliative care in aged care and palliative care plans for those transitioning from hospital to residential care. Projects were presented at the Oceanic Palliative Care Conference 2023, and publications are in progress.

Opioids in Palliative Care podcast

Previous rounds have demonstrated positive outcomes for the participating groups, both in terms of immediate application to their clinics and patients, as well as developing skills to address other problems systematically in the workplace, and more broadly including teamwork and leadership. Teams have presented their projects within the health services, at conferences and a number are preparing journal publications. A short series of podcasts is being recorded on the issues, challenges and current research around opioid use in palliative care, across a number of areas in conversation with specialists in cancer, chronic pain and pharmacy.

Highlights

Respiratory, Sleep, Environmental & Occupational Health Similarities and differences between the transcriptional responses between MERSCoV, SARS-CoV and SARS-CoV-2 With support by SPHERE seed funding, this project investigated how different coronaviruses infect human airway epithelial cells and identified differences and similarities between SARS-CoV-2 and other coronaviruses. The study also compared the Wuhan strain of SARS-CoV-2 and an omicron variant. The project successfully identified some novel pathways that could be inhibited in order to substantially decrease SARS-CoV-2 and MERS-CoV replication. It was also found that SARS-CoV-2 omicron induces a greater interferon response, which is similar to the less pathogenic HCoV-OC43. The research team have recently leveraged further funding with a $819,107 MKMD grant from ZonMw and Proefdiervrij in the Netherlands. The dataset generated has been made publicly available through European Genome-Phenome Archive (EGAS00001007203). The team is continuing to research how modulating immediate early genes (IEGs) can be used to treat coronavirus and other infections.

Pregnancy related obstructive sleep apnoea (POSA) Over the previous few years, the RSEOH CAG has provided support to Ms Frances Clements in completing a PhD (supervised by Prof Angela Makris from Liverpool Hospital) on the topic of pregnancy related obstructive sleep apnoea. This project involved collaboration across SPHERE’s Maternal and Women’s Health CAG, Western Sydney University, Ingham Institute, UNSW, Campbelltown Hospital, and the Heart Research Institute in the University of Sydney. The study has had profound impacts on health services. Sleep disordered breathing has been associated with many adverse outcomes in pregnancy for both mother and baby (such as gestational diabetes, maternal weight gain and hypertensive disorders). Prior to the commencement of the POSA project, the antenatal services and sleep disorder services were generally not well coordinated, and it was near impossible for a pregnant woman to be assessed for sleep disordered breathing in a timely fashion. The POSA project has evaluated the use of simpler diagnostic tests, ultimately facilitating an internal referral mechanism

Air liquid interace infected with SAR-COV-2 24 hours

Highlights

Respiratory, Sleep, Environmental and Occupational Health

for pregnant women with suspected sleep disordered breathing to quickly access sleep services in hospital.

Synergies and collaboration with other RTCs Over the past year the RSEOH CAG have been meeting with researchers from the sleep medicine CAG in Sydney Health Partners RTC. The first meeting on sleep medicine was hosted by SPHERE’s RSEOH CAG at UTS in late 2022, and sought to identify synergies in research projects and to gauge any capacity for collaboration and bid building between the RTCs. The meeting enabled attendees to exchange contact details and information on current projects. As a result of ongoing discussion of opportunities with members of SHP, Dr Hima Vedam (on behalf of the RSEOH CAG) attended a second conference with SHP on the topic of sleep research in 2023. The RSEOH CAG hopes to continue supporting this connection between SPHERE and SHP through regular RTC

networking events, and to focus on collaborative opportunities and bid building in the future.

The adverse health effects of e-cigarettes. The RSEOH CAG of SPHERE has led research globally into the adverse health effects of e-cigarettes. This program of research has spanned effects in pregnancy, effects in people with pre-existing lung diseases and now to the adverse health effects of exposure to thirdhand e-cigarette smoking. The impact of this research has been immediate, from helping to change NSW government policy concerning e-cigarette usage in public areas (Smoke-free Environment Amendment Bill 2018) following discussions with the NSW Health Minister Brad Hazzard, to being cited in expert reports such as CNGOF-SFT Expert Report and Guidelines on Smoking Management During Pregnancy. Perhaps just as important is the media exposure (both print and TV) that this research program has had which has helped alert the general public to the dangers of vaping.

Highlights

Women’s Health Research Network (WHRN) Women’s Health Research Network (WHRN) launched In February, SPHERE launched the Women’s Health Research Network (WHRN) at an online webinar. The aim of the Network is to improve the visibility and excellence of women’s health research across SPHERE’s Clinical Academic Groups and Platform. Chairing the event, Professor Janette Perz emphasised the pertinence of the network across SPHERE. “This network is relevant for all of us because womens’ health and gender health are issues across all our CAGs and strategic platforms.” Speaking about their own experiences, the panel which included Ms Alison Barnes, Associate Professor Christine Catling, Professor Aunty Kerrie Doyle, and Dr Cannas Kwok discussed the important issue of building both capacity and capability in women’s health research through partnering and collaboration.

Following this, Jodie Munday delved into the art of weaving, drawing inspiration from Aunty Kerrie Doyle’s Dilly Bag research method. Participants collaborated in crafting their own dilly bags, discovering the traditional methods through which Aboriginal knowledge is exchanged—primarily through dialogue. The afternoon proved to be a rich tapestry of learning, sharing, and weaving experiences.

WHRN Networking event WHRN, together with Franklin Women, held two professional development events to support the networking skills of WHRN members. Held both online and face-to-face, the event increased participants’ understanding of the importance of networking in the health and medical research sector, shared practical skills on how to network effectively and with confidence, particularly in the current environment of flexible working. The event also facilitated opportunities for them to connect and network authentically.

Applied Indigenous Research Workshop Exploring Aboriginal perspectives and cultural knowledge took centre stage in a workshop on Applied Indigenous Research Methods organised by WHRN. Alison Barnes, Associate Lecturer at Western Sydney University emphasised the importance of departing from traditional directives imposed on Aboriginal people. She encouraged a shift towards learning and embracing indigenous approaches by fostering partnerships with Aboriginal communities. While acknowledging that a single workshop wouldn’t make participants experts, Alison believed it marked a crucial stride towards amplifying the voice of Aboriginal people in research endeavors. 53

Future Directions

Looking ahead

With the implementation of SPHERE’s Strategic Plan (2023-2026) underway, we look to 2024 to solidify these changes. Looking ahead in 2024

Developing an Impact Framework

Throughout 2024, SPHERE remains steadfast in its commitment to enhancing healthcare through collaborative efforts with partners, integrating research, innovation, education, and knowledge translation to drive improved health outcomes. In order to support this, a total of $1 million will be available via centralised fund distribution through two additional rounds of Seed funding in the 1st and 3rd quarters.

As a Research Translation Centre (RTC), we are unique in Australia and hence, much of the literature regading measuring impact in research is not directly applicable. However, measuring impact is essential to ensure our work has real meaning and value to patients and the healthcare systems we operate in.

With the organisational restructure now complete, SPHERE will commence trialing a new centralised operating model from January 2024 until December 2025. Changes set for trial in 2024 include renaming CAGs to Clinical Themes to align with industry terminology, reframing Strategic Platforms as Platforms and emphasising their role as research enablers for SPHERE members, and transforming Project Officers into Research Support Officers (RSOs), centralised within SPHERE to assist with priority projects driven by the Clinical Theme and Platform structure.

As a member of the Australian Health Research Alliance (AHRA), SPHERE is taking part in an Impact Assessment project along with eight other RTCs. This project will see the development of an Impact Framework which will allow us to plan for impact whilst ensuring we collect the required impact evidence along the way. The project run by the Hunter Medical Research Institute (HMRI) Health Research Economics (HRE) Platform’s Impact team with RTC funding will work with the RTCs over 16 online workshops in 2024 to develop a detailed framework with elements customised to each RTC. “Participating in an Impact Framework project with similar but not identical RTCs in Australia will allow us the opportunity to better define what it is we do well and what we can do better for our members and the communities we serve,” explains Acting Executive Director, Professor Chris White.

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SPHERE 2023 Annual Report

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