In-SPHERE August 2023

In-SPHERE

In-SPHERE

Issue 4: August 2023

PROFILE: PROFESSOR MEERA AGAR

SPHERE FELLOWS: WHERE ARE THEY NOW?

YOUNG ONSET DEMENTIA A CARER’S JOURNEY

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

Our Partners

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

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

IN THIS ISSUE:

In-SPHERE, published three times a year, is the official research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health Education Research and Enterprise (SPHERE).

In-SPHERE showcases the work of our Clinical Academic Groups (CAGs) and Strategic Platforms as well as our Partner Organisations.

Acting Executive Director: Professor Christopher White Editorial Committee

Linda Music (Editor/Chief Writer)

Majwa-Joelle Metri (Sub-Editor)

Dr Renecia Lowe (Writer)

Dr Smita Khandelwal

Stephanie Macmillan (Writer)

Leila Niemela

Acknowledgements

The image on the cover of our May issue was taken by UTS PhD student, Ms Sahar Ghorbanpour under the guidance of A/Prof Lana McClements

The image on page 12 is used by kind permission of St. Jude Children’s Research Hospital

Understanding carer’s experiences as health services users

With strain on the formal aged care system, together with individual preferences to remain living at home as long as possible, there has never been a more important time to invest in developing tools, strategies, and systems that support carers of people living with dementia (PLWD).

However, the question “What do family carers need and want most from the government, health care systems, service providers, the community?” can remain unknown.

A/Prof Celia Harris and team conducted research as a collaboration between health professionals, Carers NSW, and researchers with expertise in psychology, with an objective to bring translational perspectives on the carer experience. The longitudinal study aims to understand the journey of carers of PLWD as they navigate the health system and support options over time. A total of 15 family carers participated in the study, representing a range of backgrounds and stages in the dementia journey.

“In our analysis, we examine factors and values that influence carers’ experiences of contact with service providers and map their preferences against what is being offered, to understand potential gaps in service provision,’ explains A/Professor Harris

“We found several themes in our data such as the impact of individual differences (cultural background, financial situation, and social support) impacting carers’ experiences when navigating the aged care system. Carers also provided feedback on what they found helpful and unhelpful on their dementia journey. The solutions provided by carers included a centralised ‘onestop shop’ for accessing dementia services and a dedicated case worker to assist carers to navigate the complexities of the journey at the key time points when they are needed.”

Enhancing collaboration across Advanced Health and Research Translation Centres

SPHERE’s Cancer Clinical Academic Group and Sydney Cancer Partners (SCP) (Sydney Health Partners Cancer Clinical Academic Group) are working together to enhance and encourage collaboration across Advanced Health and Research Translation Centres (AHTRCs.)

Both groups received a $7M Translational Research Capacity Building Grant from Cancer Institute NSW in 2021. One of the key performance measures of this funding was to implement a joint funding scheme that would support collaborative endeavours between the groups. The Strategic Enhancement Grant (SEG) Scheme is in response to these criteria. The aim of the SEG was to foster a broad-based initiative that would increase translational cancer research funding in NSW.

The specific goal was to support leaders of mature translational research programs to improve their chances of making successful applications for substantial research funding to national, international or commercial sources, by encouraging broader collaborations.

All fields of research were eligible, with a requirement to span multiple phases of the translational cancer research pipeline.

Applications were led by two Chief Investigators, one SPHERE and one SCP, with research activity spanning both organisations. Evaluation criteria were 1) competitiveness of the proposed translational research program in relation to the target funding scheme, 2) potential for the grant to increase the chances of a successful application, and 3) alignment of the application to research objectives which included priorities of the NSW Cancer Plan.

Following an extensive two-stage review process, two applications were funded. Each group receives $140k per year for up to two years. SPHERE Cancer CAG and SCP equally contribute to the funding.

Title: Validating a physiological melanoma immune model to rapidly test novel immunotherapy combinations.

Chief Investigators: Professor Jeff Holst (UNSW) and A/Professor James Wilmott (Melanoma Institute Australia, University of Sydney).

Title: Telomere remodelling in drug resistant breast cancer.

Chief Investigators: Professor Hilda Pickett (Children’s Medical Research Institute) and A/Professor Elizabeth Caldon (Garvan Institute of Medical Research).

By Stephanie Macmillan

As an NHMRC accredited Research Translation Centre (RTC) with partners across four Local Health Districts and Networks, four universities and seven MRIs, representing more than 2.5 million people in metropolitan Sydney, Maridulu Budyari Gumal (SPHERE) merges the strengths and power of both academic and health service sectors into one integrated research entity. We focus on research translation, that is, facilitating evidence into practice.

The formation of RTCs like SPHERE followed recommendations from the McKeon review and are uniquely placed to provide:

• National geographical coverage

• Full stakeholder involvement across research, academia, health care and its administration, and consumers and community

• Ability to deliver locally responsive and appropriate research translation support.

The Department of Health and Aged Care and National Health and Medical Research Council (NHMRC) recently sought consultation to realign the Medical Research Future Fund (MRFF) and the NHMRC’s Medical Research Endowment Account (MREA). While RTCs did

Professor Chris White Acting Executive Director

Maridulu Budyari Gumal (SPHERE)

SPHERE looks forward to having the opportunity to participate in future consultations around Stage 2 of this project – the development of a National Strategy for Health and Medical Research in Australia.

not attend the roundtable to discuss the administrative and governance merger of the two programs, the voice of the community, healthcare services and policy makers are fundamental as the ultimate funders and end users of research. SPHERE welcomed the opportunity to provide that wider consultation on the merger of the two programs via the Australian Health Research Alliance (AHRA) response.

It is important that these funds operate in a manner which appropriately support health and medical research. Streamlining the administrative burden and improving governance should include safeguards with respect to the quantum of funding and funding objectives in any of the proposed models. For example, while not limited in its advocacy,

whenever we are asked, SPHERE will endorse targeted allocations for implementation science and biomedical innovation which are often under represented or require long lag times to achieve sustainability and deliver health outcomes.

The models proposed for merging NHMRC and MRFF funding mechanisms appear to address administration and governance, before a national research strategy has been set. SPHERE looks forward to having the opportunity to participate in future consultations around Stage 2 of this project – the development of a National Strategy for Health and Medical Research in Australia.

Despite two favourable external reviews, RTCs remain unfunded and ineligible to apply for the Rapid Applied Research Translation grants their activities facilitate.

We will strongly advocate for any restructure ensuring funding and support of AHRA and its member NHMRC-accredited Research Translation Centres like SPHERE be aligned to the AAHMS report https://aahms.org/wp-content/ uploads/2022/10/AAHMS-VisionReport.pdf)

Translating research into practice

The Nursing and Midwifery Implementation Science Academy is committed to mentorship, capacity building and partnership to create a sustainable model for translating research into practice. Professor Sandy Middleton shares the steps they’ve taken towards achieving these goals.

The Nursing and Midwifery Implementation Science Academy (The Academy), a specialised subgroup of the SPHERE Science Implementation 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.

Collaboration is key

Director of SPHERE’S Implementation Science Platform, Professor Sandy Middleton, explains the purpose of the Academy is to lead multidisciplinary implementation science research collaborations.

“By facilitating collaborative nurse/midwife-investigator initiated, multidisciplinary, multi-site implementation science research

across the SPHERE network and within the Clinical Academic Groups (CAGs), we seek to conduct research projects that have a broad reach and impact. This collaborative approach enables the pooling of expertise from various disciplines, resulting in comprehensive and inclusive research outcomes that can inform both health practice and policy,” she said.

“The Academy also recognises the importance of capacity building and mentorship. So, by identifying and facilitating research training opportunities for early career nursing and midwifery implementation scientists, we aim to foster the continuity and growth of expertise in the field.

In addition to running webinar sessions on a variety of implementation science topics, the Academy is initiating an early-career

researcher group for SPHERE nurses and midwives with the vision of promoting the conduct of further collaborative research projects across multiple sites. Led by Dr Nicola Straiton, a SPHERE early career nurse researcher, the Academy’s early-career researcher group seeks to strengthen connections between clinically-based doctoral-level nurses and midwives and their academic counterparts, fostering a culture of collaborative research.

Bold new initiatives

The scope of the Academy’s work encompasses high-priority topics and areas across SPHERE partners and CAGs. This comprehensive approach allows the Academy to build the evidence base, translate new evidence into practice, and support applications for large-scale external implementation science funding.

Who are the Nursing and Midwifery Implementation Science Academy?

Professor Sandy Middleton, Director of the SPHERE’s Implementation Science Platform, and Professor Caleb Ferguson spearhead the Nursing and Midwifery Implementation Science Academy. Assisting them is an experienced Executive team comprising of, Executive Director of Nursing Anna Thornton, Professor Steve Frost, District Director of Nursing and Midwifery Kate Hackett, and Clinical Nurse Consultant Julie Gawthorne. Together, they bring together leading academic and clinical professionals in nursing and midwifery from across the 15 SPHERE clinical and research partners.

With a membership of more than 40 nurse and midwifery experts from academia, clinical practice and senior management, the Academy provides a unique platform for knowledge exchange. Through regular engagement, the Academy facilitates the productive exchange of ideas, best practices, and research findings to enable the integration of evidence-based approaches into healthcare settings. This has provided a very rare and special opportunity for nurse and midwife leaders from clinical and research areas across the greater Sydney basin to get together and help transform health by bridging the gap between research and clinical practice.

Development of the SPHERE Clinician Researcher Career Pathway

Clinical academic pathways for nurses and midwives have existed in the United Kingdom since 2012. However, similar formal research training pathways supported within the clinical setting are lacking in Australia. A strategy to build the critical mass of nurse and midwife clinician researchers (with direct clinical care and research roles) is therefore urgently needed to meet the challenge of providing evidence-based care in the context of increasing healthcare burden.

The SPHERE Clinician Researcher

Career Pathway is a newly proposed progressive training and career pathway from graduate to training at an Honours, Masters or Doctoral level to post-doctoral levels of research career development for nurses and midwives. Research led by Dr Maree Johnson and Academy members; ‘Exploring the SPHERE Nursing and Midwifery Clinician Researcher

Career Pathway: A qualitative study’ sought to describe the proposed Pathway in more detail. This research examined the viewpoints of nursing and midwifery service leaders and academics, yielding valuable insights into their assessment of the Pathway’s acceptability and utility.

The Pathway aims to transform the number of nurses and midwives within Local Health Districts with higher degrees in research (Masters by Research or PhD/Doctorate); and to contribute to an increase in the number of nurses and midwives at a population level (AHPRA registrations) with research as their principal role.

These two objectives directly address the vision of SPHERE, and potentially can deliver a workforce to generate new knowledge in nursing

and midwifery and implement evidence already available into practice to improve the health of patients and communities.

Expanding on initial research efforts, the Academy is currently conducting an ongoing study, ‘Enablers and barriers to the Implementation and Sustainability of the SPHERE Nursing and Midwifery Clinician Researcher Career Pathway’ which aims to investigate the perspectives of qualified nurses and midwives across all professional levels, as well as student nurses and midwives, and health consumers regarding the proposed new career Pathway. The findings will help further shape the Pathway and provide an understanding on how best to embed it in practice.

Clinical registry data for quality improvement in Australian hospitals

Clinical registry participation is a measure of healthcare quality, yet limited knowledge exists on Australian hospitals’ participation in clinical registries and whether this registry data informs quality improvement initiatives. To examine this further a study led by Julie Gawthrone (Clinical Nurse Consultant, St Vincent’s Hospital Sydney and Clinical Fellow, Australian Catholic University) and Academy colleagues was conducted across seven hospitals in New South Wales. The study, ‘Are clinicians using routinely collected data to drive practice improvement? A crosssectional survey’ aimed to identify participation in clinical registries, determine if registry data inform quality improvement initiatives, and identify registry participation enablers and clinicians’ educational needs to improve use of registry data to drive practice change.

The study found that while registry

These two objectives directly address the vision of SPHERE, and potentially can deliver a workforce to generate new knowledge in nursing and midwifery and implement evidence already available into practice to improve the health of patients and communities.

data may be accessible to local specialty units, it is not consistently employed to inform quality improvement practices across these Australian hospitals. Suggestions to address these issues include centralised ongoing funding for registries, along with the development of accessible and transparent integrated information systems. Additionally, there is a pressing need for education and training programs that equip clinicians with the skills and knowledge necessary to effectively employ registry data in driving clinical improvement initiatives.

Enhancing opportunities and outcomes of collaborative, multi-site, investigator-initiated research

By leveraging the Academy’s extensive network connections and the wide-ranging expertise of its members throughout NSW, we continually seek to foster nurse and midwiferyled multi-site research. Be it through providing support and guidance on how to design and conduct highquality research, facilitating access to a larger pool of research sites for efficient recruitment or encouraging collaborations with experts from diverse disciplines and knowledge backgrounds. Collaborative, multisite research enables increased data diversity, enhanced generalisability of study findings, and the ability to tackle complex research questions more effectively.

The collaborative approach within the Academy has yielded numerous successful funding outcomes, as demonstrated by the current Assessment and Communication Excellence for Safe Patient Outcomes Plus Trial (ACCELERATE Plus). This 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 stepped-wedge cluster randomised trial includes a costbenefit analysis and process evaluation of an intervention encompassing nursing core physical assessment, patient-centered bedside handover, and improved multidisciplinary communication.

“The primary focus of the ACCELERATE Plus Trial is to assess the intervention’s impact on patient outcomes by reducing medical emergency team calls, unplanned intensive care unit admissions, falls, and pressure injuries,” explains Prof Middleton.

The ACCELERATE program of research builds on collaboration between numerous clinical and academic partners across the SPHERE Academy and broader NSW networks. This collaboration has provided invaluable data on factors influencing the intervention’s successful implementation and sustainability in real-world healthcare settings. Upon completion of the ACCELERATE Plus Trial, should the intervention prove beneficial, its rapid translation into practice and widespread adoption across NSW

and beyond becomes an exciting opportunity. The fruitful collaboration within the Academy has undoubtedly paved the way for significant advancements in patient care and evidence-based practices and support for multi-site nursing trials.

Where to next?

The Nursing and Midwifery Implementation Science Academy aims to make a tangible difference in patient outcomes by fostering research collaboration, nurturing the next generation of nurses and midwives, and prioritising clinically relevant and impactful research to promote evidence-based practice. Together we can do better research.

To find out more, contact: nicola.straiton@acu.edu.au

Prince of Wales Hospital: Launch of ACCELERATE Plus Trial

The Clinical Trial called Levi’s Catch is named after eight-year-old Levi (pictured) who sadly passed away from Diffuse Intrinsic Pontine Glioma (DIPG) in December 2018.

New clinical trial for fatal childhood cancer

DIPG is the most aggressive of all childhood cancers and is one of the only cancers that still lacks effective treatment. This rare, fast-growing and incurable tumour forms in part of the brain stem called the pons, which is responsible for vital functions like breathing, sleeping, bladder control, and balance.

For the first time outside of the United States, doctors in the Kids Cancer Centre at Sydney Children’s Hospital, Randwick (SCH) will use CAR-T cell therapy to try to attack and destroy the fatal tumour, offering new hope to children living with the devastating disease.

The trial, called Levi’s Catch, will use CAR-T cell therapy to genetically modify a patient’s own immune cells in a laboratory to teach them to target and attack the tumour. Once reinfused into the patient, it is hoped these immune cells will have the ability to scan and destroy harmful cancer cells without damaging most other healthy cells.

“Every year, we see too many children, like Levi, die of this devastating disease. These children are what drives our research and reminds us that we need to be on the cutting-edge of research and treatment every single day.”

Clinical trial lead, Professor David Ziegler, Senior Staff Specialist in the Kids Cancer Centre at SCH and Group Leader of the Brain Tumours Group at Children’s Cancer Institute explains that CAR-T cell therapy is a cutting-edge approach to treating DIPG.

“This is a completely new way of attacking this deadly brain cancer. If we can take what we have already learnt in the use of CAR-T cell therapy for treating other childhood cancers

and translate this to help treat kids with brain cancer, it could be a game changer,” Prof Ziegler said.

The trial aims to help children, like eight-year-old Levi, who the trial is named after. Levi was diagnosed with DIPG in late 2017, which lead to an intensive treatment journey at the Kids Cancer Centre at Sydney Children’s Hospital. Over the course of a year, Levi underwent numerous surgeries, radiation, immunotherapy, experimental drug treatments as well as various medical examinations and tests. Tragically, Levi succumbed to his tumour in December 2018.

Prof Ziegler emphasises that it is children like Levi who inspire their research efforts.

“Every year, we see too many children, like Levi, die of this devastating disease. These children are what drives our research and reminds us that we need to be on the cuttingedge of research and treatment every single day.

When a child is diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), they are given about 12 months to live. This is the heartbreaking reality for around 20 Australian children every year.

FROM OUR PARTNERS: SYDNEY CHILDREN’S HOSPITAL NETWORK

“It’s because of these kids that we will never accept the status quo and will continue to push boundaries so children don’t have to die from DIPG.”

To honour Levi’s legacy, his parents, Ben and Kath, set up Levi’s Project and have since raised more than $4 million, with another $2 million pledged for DIPG research. This includes contributing $600,000 towards the Levi’s Catch trial.

“Having seen firsthand the devastating effects of DIPG, we are proud that Levi’s Project is able to fund such important work,” Kathryn said.

“We are excited to see this clinical trial, in honour of our boy Levi, open across Australia, providing what we hope will be the first effective treatment for children with this devastating disease.

Professor Ziegler said this support has been integral to making the trial possible.

“Through their fundraising efforts, Levi’s family and friends have really boosted our DIPG research program, both in the labs and in clinical trials. Thanks to their support, we are one of the first places in the world to be able to offer this sort of treatment and give new options to help kids like Levi.”

Levi’s Catch is open to children across Australia and is a collaboration between the Kids Cancer Centre at SCH, Children’s Cancer Institute, Royal Adelaide Hospital and the University of South Australia, with support from the Cancer Institute NSW.

For more information visit https:// bit.ly/3Xt8IrX

What is DIPG? Diffuse

Intrinsic Pontine Glioma (DIPG) is a tumour that develops in the pons, a critical region located within the brainstem. This condition primarily affects children, typically between the ages of 5 and 10. In Australia, approximately 20 children are diagnosed with DIPG each year.

The standard treatment for DIPG involves radiotherapy, which often initially shrinks the tumour. However, in the majority of cases, the tumour regrows aggressively and becomes fatal. Unfortunately, there have been limited advancements in treatment effectiveness or survival rates for DIPG over the past four decades.

Professor David Ziegler

The information in this material (image above) is used by kind permission of St. Jude Children’s Research Hospital

Breathless Clinic:

Working together to defeat breathlessness

Breathing. It’s something most of us take for granted but for people suffering from Chronic Obstructive Pulmonary Disease (COPD), breathing is often a complex challenge.

By Dr Renecia Lowe

Breathlessness is a distressing and incapacitating symptom that leads to poor quality of life and loss of independence. The resulting burden is often underestimated, leading to significant healthcare and personal costs. Patients who have persistent breathlessness (called ‘chronic refractory dyspnoea’) feel that there is not enough awareness or provision within healthcare services to address this burden effectively.

For those with COPD, breathlessness means an even worse prognosis and further demands on healthcare services. Whilst medications

have an important role, nonpharmacological interventions to help manage breathlessness are starting to emerge.

Dr Belinda Cochrane, a Staff Specialist in Respiratory & Sleep Medicine at Camden and Campbelltown Hospitals in Sydney and member of SPHERE’s Respiratory, Sleep, Environmental and Occupational Health Clinical Academic Group (RSEOH CAG), is leading the coordination of Macarthur Health’s ‘Breathless Clinic.’ This homebased program aims to transform the overall experience for COPD

patients who suffer from chronic breathlessness, by working with them to develop individualised coping strategies within their own homes and communities. Her team comprises multidisciplinary clinicians across South Western Sydney Local Health District, including a specialist physiotherapist, specialist respiratory nurse and occupational therapist.

Breathless Clinic involves a nineweek program for a participant to help manage their chronic breathlessness. Following assessment, review and optimisation of pharmacotherapies, further investigations and referrals are

undertaken as required. Evidencebased non-pharmacological interventions then commence and are refined to meet each patient’s specific needs week-to-week by the team clinicians, working together with the patients in their homes. These nonpharmacologic interventions provide instruction for self-management and daily coping strategies.

“We are ultimately taking a threepronged approach,” Dr Cochrane explains. “We ensure appropriate guideline-based therapy for COPD initially, whilst facilitating access to those aspects of care that are less available or more challenging and daunting for patients disabled by breathlessness. Secondly, we investigate and address any coexistent conditions that contribute to breathlessness. Third, we focus on developing skills to augment dayto-day coping ability in the home environment, guiding the patient and carers on aspects such as selfmanagement.”

Evaluating the program’s efficacy

Dr Cochrane’s team are also determining if COPD patients find the Breathless Clinic Program helpful and, if so, what characteristics are amongst those who benefit. Through this evaluation they are looking at the program’s impact on breathlessness (namely, the patients’ ability to cope) and healthcare outcomes such as the frequency of breathlessness attacks and unplanned use of healthcare. Twelve months’ follow-up data will provide further information about the sustainability of outcomes. The team are also seeking feedback from patients and carers to inform service development.

“We originally developed this program under mentorship from Westmead Hospital’s Breathlessness

Clinic Team, some of whom are researchers involved with this project,” explains Dr Cochrane.

“However, the outbreak of the COVID-19 pandemic in 2020 and the ensuing major disruptions to healthcare services and social frameworks meant significant delays and radical changes to how things were done. From the pervasive infection control measures to managing clinic schedules and staffing when patients, clinicians, or their families were unwell, the Breathless Clinic Program had to adapt and adopt pragmatic compromise solutions to keep the service afloat.”

This study which commenced in 2022, achieved the recruitment target of 92 patients in February 2023 with data collection ongoing until early 2024. The subject population have completed the Breathless Clinic Program and provided qualitative feedback via interviews. Patients participating in the program have severely impaired lung function, high symptom burden with comorbid anxiety and depression.

“Whilst the preliminary results might look promising, it remains to be seen whether this translates to sustained benefits and overall improved healthcare outcomes,” says Dr Cochrane.

COPD: a new approach

“The final results of the study will be highly informative for health services beyond the local area. They will have implications for patient selection, funding and resource planning,” says Dr Cochrane.

“We look forward to making a real transformative impact on an issue which has burdened Sydney health services and our local community for a long time.”

Dr Cochrane and team acknowledge Glaxo Smith Kline (GSK) for funding this project as part of their Investigator Sponsored Grant Scheme. GSK has had no role in project design, nor any input in ongoing data analyses and results reporting.

Many patients with COPD struggle with chronic breathlessness and poor quality of life, requiring hospitalised care during attacks of extreme breathlessness termed ‘exacerbations.’ Moreover, they face challenges to accessing effective non-pharmacologic care interventions recommended in national and international guidelines (interventions such as pulmonary rehabilitation and psychotherapy). Addressing breathlessness from a multidimensional perspective both targets the disease and supports the patient using pharmacological and evidence-based non-pharmacological interventions towards the best possible outcomes.

Dr Belinda Cochrane

SPHERE Fellowship: a career catalyst

A SPHERE Fellowship was the stepping stone needed to boost the research careers of these two past SPHERE Fellowship recipients.

Dr Laurel Mimmo

A gentle nudge from one of her PhD supervisors had Laurel Mimmo apply for the 2019 SPHERE Fellowship which has not only helped propel her career but also brought attention to the importance of building paediatric nurse-led research.

The start of a career in research

Laurel was always interested in the care of children with intellectual disabilities. However, in her role as a paediatric nurse she wasn’t sure how she could make a difference outside of her nursing duties.

Whilst doing a dual Masters of Public Health/Health Management at UNSW, Laurel realised that looking at health services research more broadly was a way of potentially improving the quality of healthcare for this group.

She recalls a lecture by the late Professor Joanne Travaglia who talked about the vulnerabilities of women with intellectual disability in hospital.

“I wasn’t comfortable knowing that people with intellectual disability, who should have felt safe in hospital, had such negative experiences.

“This led me to turn my attention to the quality and safety of children with intellectual disabilities in hospitals.”

By Linda Music

SPHERE Fellowship research

Laurel’s PhD looked at the population of children with intellectual disabilities who were admitted into the Sydney Children’s Hospital Network (SCHN). Laurel discovered that these children account for 4.5 per cent of the child population yet make up 14 per cent of the hospital admissions.

“Children with intellectual disabilities have high healthcare utilisation. They have a longer length of stay in hospital and are more likely to have a clinical incident reported during their admission,” explains Laurel.

“Realising there is a clear inequity in

Dr Laurel Mimmo Dr Bernadette Brady

quality and safety outcomes for these children, I looked at the evidence exploring the experiences of the parents of hospitalised children with intellectual disability to help develop a conceptual model of what good care looks like.”

However, there is little published evidence of the experience of children with intellectual disability from the children themselves. So, with additional funding from the Disability Innovation Institute UNSW, with her PhD supervisors, A/Prof Reema Harrison, A/Prof Sue Woolfenden and Prof Jo Travaglia, and under the guidance of Prof Iva Strnadová, Laurel worked with two young people with intellectual disabilities, conducting coresearcher training workshops to learn about inclusive research approaches.

“The workshops were important; in order for me to understand the needs and experiences of children and young people with intellectual disabilities. I needed to involve them in my research and learn accessible interview techniques.”

Over the course of six workshops, Laurel introduced the two coresearchers to research and together they learnt the research techniques needed to facilitate a person with intellectual disabilities to give their perspectives and experiences of hospitals. This experience not only provided the two co-researchers with invaluable information but also provided Laurel with her own lessons.

“I had my assumptions challenged during this time. I needed to be flexible in my approach to give the two young people a platform and a voice to participate in research.”

The workshops resulted in a co-authored paper with the coresearchers and their parents.

With COVID lockdowns limiting non-essential access and preventing Laurel from entering wards to

interview patients, Laurel organised zoom focus groups with paediatric nurses from across SCHN. This study explored the perceptions of good care from paediatric nurses with experience caring for children and young people with intellectual disability in hospitals. The findings from this research have been used to expand and enrich Laurel’s theoretical framework regarding the provision of safe and high quality healthcare for children and young people who have intellectual disabilities. This framework revolves around the child, emphasising their care journey while prioritising a good quality and safety experience.

“The enhancements to the model acknowledges the joy and job satisfaction for paediatric nurses when they are able to give specialised inpatient care for these children and young people.”

The paper arising from that study was published in 2022: https:// onlinelibrary.wiley.com/doi/full/10.1111/ jan.15256

Moving into a new research position

Laurel is steadfast in her belief that the SPHERE Fellowship was the catalyst for her successful transition to Senior Research Fellow in the Nursing Research Unit at the Sydney Children’s Hospital Network.

“The SPHERE Fellowship gave me the opportunity to advance my research skills and expertise for this position which keeps me specifically looking at paediatric health services research,” Laurel explains.

“I wanted to continue in a paediatric healthcare focussed role after completing my PhD. Through my fellowship I found that paediatric nurses have unique insights into healthcare delivery that we need to harness. I believe it’s important

to encourage paediatric nurseled research to improve care and access for children with intellectual disabilities, and for all children, when they come to our hospitals.”

Laurel is also busy promoting and supporting nurses to understand, use and conduct research across the SCHN.

And when she’s not doing that, Laurel sits on many research committees, presents at conferences the most recent being at the European Society for Paediatric and Neonatal Intensive Care in Athens, and is working together with other researchers both locally and internationally on funded projects.

“The SPHERE Fellowship has expanded my research to a lot more people. It has helped highlight the challenges children with intellectual disability face just coming into hospital, and the experiences that health services do well. Children with intellectual disability are made vulnerable by our systems and structures. By understanding their experiences health services are ideally positioned to ensure equitable, safe, high quality healthcare delivery.”

Dr Bernadette Brady

Bernadette (Bernie) Brady was just wrapping up her PhD when she decided to apply for SPHERE’s Fellowship program. Unfortunately, her application was unsuccessful. While disappointed, it gave Bernie the opportunity to reassess what she really wanted to do post-PhD.

Her PhD research focused on cultural adaptation, specifically how to modify pain management interventions to be culturally appropriate. Knowing she wanted to continue working with CALD communities, Bernie successfully applied for two seed grants which allowed her to continue her research into this space.

However, it became increasingly obvious that while she was seeing some success with local Arabic, Assyrian and Vietnamese communities within the SWSLHD Pain Clinic, her ongoing research raised some challenging questions about scalability.

“I started to ask myself, how we could possibly do this on a large scale when we have 200+ cultures in Australia,” said Bernie.

“Is it feasible to expect the health workforce to be able to adapt their interventions for every culture?”

It was at this point that she had an idea that would become the focus of her second (and this time, successful) SPHERE Fellowship application. The idea was to develop a partnership model that could be implemented in any clinic treating patients with chronic pain or musculoskeletal conditions and for different communities. The proposal sought to match volunteers, who identify with culturally and linguistically diverse (CALD) background and who have lived experience of a pain condition, to work with the healthcare

team to adapt their interventions, at an individual patient level, to better support patients.

“It was basically peer support for CALD patients,” explains Bernie.

“There’s good evidence for peer support but where it was lacking was embedding that peer support into formal health services, such as our hospital outpatient clinics.”

She postulated that the partnership model would have a three-fold benefit.

“Our theory was that firstly, the

model would support the patient by matching them to a peer/mentor they could relate to. Secondly, it would improve the credibility of our messages because it was coming from someone who had a lived experience of the condition and not just a health care worker. Lastly, we believed that this project would also be beneficial to the health service because by working with these mentors, the service would become more aware of the importance of cultural adaptation for their CALD patients.”

L to R: Mona Dawoud and Yalda Kiyo, Natural helper volunteers

We designed the fellowship application not only around the proof of concept and feasibility but also the logistics of setting up a training program, onboarding people and then evaluating this concept of peer support for people with chronic musculoskeletal conditions,

The Fellowship was the springboard that Bernie needed to propel her research and her career.

“The Fellowship was a gamechanger. It gave me protected time for three years to focus on this project whilst at the same time allowing me to get involved, collaborate and network with people in the Musculoskeletal Clinical Academic Group (MSK CAG) and beyond.”

Successfully completing the pilot study across three clinics in South West Sydney: Liverpool Hospital Pain clinic, Fairfield Hospital Hip and Knee service and Fairfield Hospital Physiotherapy Department, Bernie was able to demonstrate proof that the concept of peer support embedded in a health service worked.

“In our preliminary evidence, we looked at what mechanisms of action the mentors were having on the patients. Specifically, we looked at how a patient’s knowledge, skills and attitudes towards self-management changed amongst those with or without a mentor. In our usual care arm, that is, those who didn’t have a peer mentor, pain outcomes improved but their attitudes didn’t really change. This suggests that when treatment is complete, they won’t sustain the changes they made.

“In contrast, people who had

mentors had a 10-point improvement in activation. This is a significant improvement when a minimal clinically important difference is a four-point change. It made us realise that we were definitely onto something.”

Off the back of the pilot study, the results of which were published in this year’s BMC Musculoskeletal Disorders (https://rdcu.be/dh89x), Bernie started working on her next plan, specifically how to scale up the program. After forming a new team, they decided the concept wasn’t specific to pain but could be translated to chronic disease management. This shift to include patients with chronic disease received widespread interest across clinics in SWS including diabetes clinic, cardiac rehab, respiratory, rehab services and rheumatology.

Pilot study spawns more funding

Armed with the success of the pilot project and with a clear direction and interest from various clinics, Bernie was up for success in her next application for funding from the Ministry of Health (MOH).

“The $232K from MOH allowed us to make plans to do this on a larger scale. We were able to employ Golsa Saberi, a Multicultural Health Officer who is revising the training program, formalising the recruitment process, and networking with the communities.”

Formalising links with Multicultural Health through Golsa’s employment has allowed Bernie to develop a proposal for a Hybrid Type 1

Implementation-Effectiveness

Cluster Randomised Controlled Trial which looks at how to evaluate the effectiveness of the model and then how to embed it more widely.

The successful MOH funding spurred the team to submit for a Medical Research Future Fund grant early this year.

“I really do believe that because we had all that preliminary work completed, thanks to the time I was given whilst on my SPHERE fellowship, we had everything set up to be successful.”

Not only was Bernie’s own application for scaling the Natural Helper Project successful, she is also a CI or AI on two other NHMRC applications this year with funding exceeding $3 million, a significant achievement for an early-career researcher.

“This opportunity allows me to gain experience leading a large team to embed our research not only in our health district but to expand to similar health settings such as the health district we are bringing on board in Victoria. We’re in the thick of taking our model and seeing if it translates to other settings and other communities.”

“If I was just working clinically, I would have had limited opportunities to do research, but the SPHERE Fellowship gave me the time outside of my clinical work to collaborate, be mentored and provided me with opportunities for career development. It was the catalyst for all the success I’ve had since.”

“I really do believe that because we had all that preliminary work completed, thanks to the time I was given whilst on my SPHERE fellowship, we had everything set up to be successful.”

Stitch it for Dementia: A research-art project

Between two University of Technology (UTS) buildings hangs a cloth banner stitched with the words “Care is a relationship not a role.” At first glance these seem like simple words yet they hold a deep message about the importance of carers and the meaning they attribute to and gain from the care they provide.

Stitch it for Dementia, a researchart project by SPHERE’s Knowledge Translation Strategic Platform brought together seven carers of people with dementia, over a series of five online workshops with artist, Michele Elliot, to convey their experiences on cloth.

From the ups and downs of the dementia journey depicted as a game of snakes and ladders to climbing roses

forming an archway, each carer’s craft embodied the intricate layers of their experience.

Over the course of the workshop, each person expressed the difficulties they had faced or were facing in their experience of dementia care, from stigma and isolation to a lack of support or insight from health professionals, the care sector and society at large, all issues that are calling for recognition and change.

The Stitch it for Dementia works will be shown as part of ‘Care is a Relationship’, an exhibition at the UNSW Library Galleries from 5th September to 17th November. The exhibition launches on the 5th of September from 5-7pm. To register

for the event go to: https://www. eventbrite.com.au/e/care-is-arelationship-exhibition-openingtickets-662175273067

Michele will also be leading free stitching workshops to contribute to a new collaborative artwork – all welcome: https://www.eventbrite.com/ cc/crafting-care-workshops-2366249

PROFILE: IMELDA GILMORE

Young Onset Dementia A carer’s journey

Occasionally one has the privilege of meeting a remarkable human being: someone whose dedication to advocating for those who do not have a voice reminds us there are good people in the world. Imelda Gilmore is one such person.

Imelda sits on the Age and Ageing Clinical Academic Group’s Consumer Council and brings with her a depth of understanding and lived experience as a carer for her husband who died from young onset dementia in 2016. He was just 65.

A carer’s journey

Imelda’s consumer advocacy journey began as a carer. At the age of 58 her husband, Graham, started to experience forgetfulness. Putting it down to work fatigue, Imelda was sure that once he retired things would improve.

“Back then, it would never have occurred to me that a man his age could have dementia,” she explains.

At the time, knowledge about young onset Alzheimer’s was extremely limited.

“When I was completing my first semester of a Bachelor of Dementia Care Course with University of Tasmania in 2017, a year after my husband’s death, I conducted some research for my final essay. As I went through the literature, the earliest paper I could find on young onset dementia was published in 2013. Prior to that date there was no research I could find about people under the age of 65 with dementia.”

Doctors didn’t seem to have much information either.

“We went to see a neurologist when Graham was 63, as his symptoms had deteriorated significantly, with increasing incidences of memory loss and confusion.

“The neurologist referred him for a driving test which he not only passed but allowed him to drive for an additional six months. This was even

though he was having memory lapses when driving; for example, there were incidences when he suddenly didn’t recognise where he was, even when we were only a few streets away from our home.

“As Graham refused to have an MRI, the neurologist sent him away

With her lived experience as the carer of a person with young onset dementia, Imelda Gilmore is committed to making a difference in research. By Linda Music

Imelda Gilmore

to try some vitamins, reviewing his progress with a couple of visits over 18 months. At that point I was becoming more responsible for him and yet I was getting no support or guidance as his carer.”

Imelda watched as the man she had been happily married to for 35 years deteriorated, slowly at first but then suddenly declining rapidly.

Visiting another neurologist at the age of 64, Graham underwent a SPECTscan and was immediately diagnosed with classic Alzheimer’s with both temporal lobes affected as well as a small effect on the frontal and occipital lobes.

The need for carer support

From the time of her husband’s first symptoms to his untimely death, Imelda found herself in unfamiliar territory as she traversed the foreign world of being his carer.

“I was floundering. There was little information about young onset

dementia and even less help for carers of people living with dementia.”

Imelda first received real support when she and Graham attended “Living With Memory Loss” an eightweek course run by Alzheimer’s Australia.

“I started to discover my role as a carer and how I could be supported. The affirmation and validation I received in caring for Graham was incredibly important.”

When the course ended, four of the couples remained in contact and formed a social support network.

“The only person who understands what you’re going through as a carer is someone else who has cared for a person living with young onset dementia. In the evenings, after a particularly bad day when I sat down at my computer, I would pour my heart out to the group. You feel like you’re screaming out into the darkness, but you know there are people out there who understand.”

As Graham’s dementia progressed, Imelda found she needed to continually change the way in which she interacted with her husband. She explains that people living with young onset dementia often regress chronologically so it is essential to learn to communicate with them at the appropriate level.

“I had to learn to see our relationship differently because he no longer seemed to recognise that we were husband and wife. He seemed to relate to me as his mother, so I began to respond in that manner.

“Every day in your life as a carer of someone with young onset dementia is a learning curve and you become equipped to deal with the challenges. I had to learn to communicate in a very different way which at the beginning felt like I was lying to him but I realised that all I was doing was stepping into his reality and protecting him from distress as much as possible.”

A journey expressed through craft

“Through my work I wanted to be able to express a story, which is really a circle. I wanted to honour my beautiful young husband, who had young onset Alzheimer’s disease. I cared for Graham through his journey. I wanted to honour Graham’s precious presence.

In the photo with our daughter, his eyes look lost as though he is searching for something he can’t grab hold of, something out of

reach. A lot of people don’t take pictures once the person who has dementia loses their intelligent look. But some of the most precious pictures, the ones I would never give up, are pictures like that.

I wanted to express the pain of relationship change, yet the love that upholds it. I wanted to express isolation, hard work, challenge, frustration and aloneness of being a carer.”

Imelda participated in the ‘Stitch it for Dementia’ workshops run by Knowledge Translation Strategic Platform (see story p.19)

Advocating for consumer input in research

Imelda’s first-hand experience of caring with a person living with dementia has led her to be an advocate for adding a dementia dimension into research , as well as adding her experience of palliative care and end-of-life care. Joining the first UTS Consumer Advisory Group in 2014 as a founding member, Imelda had no idea that her involvement would lead her on a journey into consumer-led research.

“I am involved on committees including the Age and Ageing Consumer Council where we look at research proposals and ask questions such as ‘How are consumers involved?’ ‘Is it novel research?’ ‘Does it fulfil a need?’ ‘What’s the knowledge translation component?’

“What we as consumers bring to the table is the human side to the theoretical and scientific approach. We bring a balance to the research and show that our input as carers of people living with dementia is important.”

Since she began working as a consumer advocate, Imelda has worked with researchers from eight universities across Australia and overseas including on Clinical Trials and has also been a Chief Investigator on a few research projects. She has also spoken at conferences and in the media.

“This is something I never would have done if Graham didn’t get Alzheimer’s. Everything I do in research is for his legacy. This is how I honour him because otherwise it’s all just a sad story.”

Supporting others

In addition to her work in research, Imelda also dedicates much of her time to supporting others; from

running a support group for carers whose partners have young onset dementia, providing pastoral care and prayer services and also sitting with people during their last days and hours. During these times, she not only offers company but compassion and a genuine desire to bring peace to those at the end of their life journey.

“When a baby is born, there are hands that reach out and embrace it with love. When someone goes out of this world they need the same touch and love.

“You only get one chance to walk someone through the end-of-life journey. To hold their hand and to give them that important touch is an incredible privilege.”

The future of dementia care

While Imelda acknowledges the significant work done in research since her husband was first diagnosed, she believes that much can still be done in the healthcare system.

“Educating all hospital staff about dementia, from the CEO right down to the cleaner, would go a long way to making a huge difference in the lives of people with dementia and their carers.”

More about Imelda’s work

Published projects:

Published CI: Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review https://doi. org/10.1093/geront/gnaa118

Published AI: https://doi. org/10.1002/alz.13080

Imelda is currently a Chief Investigator on the following projects:

The CELPI Trial https://bmcgeriatr.biomedcentral. com/articles/10.1186/s12877-02203534-1

The EARLI Project: https://neura.edu.au/project/theenhanced-advance-care-planningand-life-review-longitudinalintervention-earli-project

Imelda with her husband, Graham

Our Palliative Care champion

One of the most recognisable names in palliative care research in Australia, Professor Meera Agar has been working in the field for almost 20 years. Her commitment to ensuring the person is front and centre of all healthcare has led to significant improvements in person-centred palliative care.

Why did you choose to go into palliative care?

I was always interested in holistic care, particularly in the care of older people and people with cancer. Palliative care brought together these interests. It was an emerging speciality at the time I started my training, so I’ve been part of framing what palliative care in the Australian

context looks like now and in the future.

You have played an instrumental role in the establishment of home-based palliative care in Australia. Why is it so important?

I believe if we are to optimise people’s healthcare, we should have models of care where we go to the person rather than rely on the sick person coming to hospital. It doesn’t make sense to have people with cancer or other serious illnesses sitting in an outpatient department or going to multiple appointments when they feel unwell. I believe there are better ways to get healthcare to them and that is by making the health professionals the mobile part of the equation and not

the person living with cancer or serious illness.

It is also a privilege to provide care in someone’s home. You see them as a person first and their clinical issues second whereas the hospital setting removes their identity and who they are as a person.

As Chair of SPHERE’s Palliative Care CAG, how do you think SPHERE contributes to research in palliative care?

Research in palliative care continues to grow. The pioneers of palliative care were focused on developing clinical services, developing the funding models and advocating for the workforce to provide palliative care whilst also challenging previous clinical care models that didn’t put

the person at the centre of care. More recently, we have turned to undertake research to also contribute to improving care. What SPHERE has done is provided an opportunity to bring together clinicians, consumers and researchers to look at how we can use research to improve care. Being a smaller specialty, we’ve been able to do a lot of networking and sharing our time, energy and resources so we can do great things together rather than in isolation.

You led a world-first clinical trial of antipsychotics in delirium. Tell us about the clinical trial and what were the outcomes?

Delirium is a critical condition affecting one in five people in hospital. If you are in palliative care, the risk is even higher. From my clinical experience I know how important it is for a person with a palliative diagnosis to be mentally aware and able to interact with loved ones because communication is such a critical part of maintaining meaning. Having an acute issue such as delirium impairs your cognition and clouds your consciousness. For this reason, delirium was an area where we knew we needed to improve clinical care.

There was a lot of work in other areas of health such as geriatrics which was focusing on reducing use of medications and increasing focus on use of non-medication measures to help people prevent symptoms of delirium and improve recovery. However, there is a tension between keeping people mentally aware and trying to reduce their distressing symptoms such as hallucinations and restlessness. So, we wanted to test whether anti-psychotics had a role in delirium in people with more advanced disease.

The trial was aligned with SPHERE philosophy to bring together the

lens of experts well outside our own clinical ‘silo’. We worked closely with geriatricians, aged care psychiatrists, nurses, pharmacologists to articulate the research question specific to palliative care and also how learnings from other specialties could help us. Our study found that focusing on nonmedication approaches are also critical in palliative care.

What are your biggest areas of focus?

The biggest focus in my clinical trials has been around the impacts of advanced illness on the brain, with my initial work in delirium. This led me to a focus on geriatric oncology given that older people with cancer are particularly vulnerable in terms of cognitive issues. The focus has been looking at models of care and how we can assess to meet the broader needs of older people who have cancer and make sure we are putting in multidimensional care plans to improve their clinical outcomes.

The other area we have been interested in is to improve the management of symptoms for people with malignant brain tumours particularly looking at raised intracranial pressure and if we can reduce the need to use high doses of a medication (corticosteroids) which are currently used to manage this and have significant side effects. This focus came directly from people who had experience of living with brain cancer and the importance of reducing side effects.

Describe your typical week

I’m fortunate that I have the capacity to continue to do clinical work for part of my week which is primarily at Liverpool Hospital Cancer Centre. The rest of my week is spread between mentorship and capacity building Early Career Researchers including supervising PhD Students and Post

doctoral research fellows, and leading my own research projects. Part of that involves trying to improve the infrastructure needed to conduct palliative care research at scale and support those systems within our clinical services.

What is the best part of your job?

The best part of my job is mentoring early career researchers. It has been really wonderful to see palliative care develop in Australia so that we now provide world-leading palliative care services. It is exciting to mentor the next generation of people from all disciplines who are taking on research into palliative care and who are really tackling some challenging aspects of healthcare and already making a difference.

What is your greatest professional achievement?

The establishment of the 14th Cancer Collaborative Clinical Trial group focused on cancer symptoms. Australia has been a world-first in ensuring that supportive care and symptom questions are equally part of the clinical trials landscape.

What do you do in your free time?

I have two other interests outside of research and clinical practice. The first is gardening. During COVID I did a permaculture course, so my goal is to have an urban farm in the middle of Sydney which I acknowledge is tricky to achieve. I also love to knit using complicated patterns and different colours.

Prof Agar is a Fellow of the Royal Australasian College of Physicians, Fellow of the Australasian Chapter of Palliative Medicine and clinician scientist. She holds a Masters in Palliative Care.

Osteoporosis awareness: educating early

It may predominantly affect adults but osteoporosis is often referred to as a paediatric disease with adult consequences.

That’s because 90% of bone density is laid down between the ages of 10 and 30. Ensuring preventative measures are taken at this stage of development is critical in preventing osteoporosis. Therefore, the high school period is a critical time to implement strategies which enhance bone health.

However, Australia currently has little to no information on the importance of preventing osteoporosis in the high school curriculum.

The establishment of a school education program was identified as a priority in the National Strategic

Action Plan for Osteoporosis in 2019, and SPHERE’s Musculoskeletal Clinical Academic Group took up the challenge, securing a Grant from the Australian Government to develop an Interactive Bone Health Education Program. Bringing together the Garvan Institute of Medical Research and the University of Sydney, the aim was to develop, pilot test, and evaluate an educational-based intervention targeted at Australian high school students in years 7-10, aged between 12-16 years.

The program, codesigned with PDHPE Teachers and consisting of four interactive, online modules as well as downloadable workbooks, reached 220 secondary students across seven NSW public high schools.

Two educational videos have also been produced to go alongside the program; “What is Osteoporosis? – A Science Animation” and “What does osteoporosis look like? – a 360 Degree animation”. These videos use molecular animation to take students deep inside bones and show them how bone tissue is a living organ, and not just an inanimate skeleton. These videos are gaining traction with over 6,300 and 3,300 views on YouTube so far.

While evaluations are currently in progress, plans are underway to expand the program nationally.

The full set of resources is ready to teach and freely available at https:// mskhealthresearch.com/osteoporosisschools-program

Promoting health equity through land use planning

Understanding the vital role of land use planning and its potential to promote equitable health outcomes, the Western Sydney Health Alliance engaged the services of SPHERE’s Healthy Urban Environments Collaboratory (HUE) and UNSW Sydney’s Centre for Health Equity Training, Research, and Evaluation (CHETRE). The objective was to evaluate whether the State Government’s land use planning instruments are applying an equity lens to enhance health outcomes and reduce health disparities.

The research involved a comprehensive analysis of 14 State Environmental Planning Policies (SEPPs) and eight Local Environmental Planning Policies

(LEPs) in relation to NSW Health’s Healthy Built Environment Checklist. The findings revealed a lack of clarity regarding the incorporation of health equity considerations within land use planning strategies. The research demonstrates that the current planning system frequently neglects the importance of promoting equity in health outcomes.

Although certain planning instruments acknowledged the importance of ensuring “equitable access,” only a few of them offered explicit definitions of equity within a planning context. There was also a scarcity of guidance on how to effectively achieve equity in health outcomes through these instruments.

These planning instruments have

oversight of land use allocations, connections, transport modes, access to natural environments, public space design and amenity.

As part of the research, a comprehensive set of 14 indicators for Land Use Planning for Equitable Health Outcomes has been proposed. These indicators are specifically designed to support local governments in the Western Parkland City region, enabling them to assess and track healthy planning outcomes. By implementing these measures, local governments can effectively monitor progress and make informed decisions to foster healthier and more inclusive communities.

Read the report.