In-SPHERE November 2022

In-SPHERE

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

Issue 1: November 2022

DISCOVERING BRILLIANCE IN AGED CARE

HOME SOLUTION FOR A SENSITIVE PROBLEM

BIRTH IN THE TIME OF COVID

SHARING LIVED EXPERIENCES THROUGH PHOTOGRAPHY

TRAIN THE BRAIN TO REMOVE PAIN

Our Partners Each of our 16 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.

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IN THIS ISSUE: NOVEMBER 2022 4

Foreword

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In brief

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Profile: Dr Georgia Kennedy

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In-SPHERE is the quarterly research magazine of Maridulu Budyari Gumal, the Sydney Partnership for Health Education Research and Enterprise (SPHERE).

(written by Claire Thompson Neilsen of Petunia Brown)

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

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Profile: Associate Professor Genevieve Steiner-Lim

Interim Executive Director:

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Profile: Ainslie Cahill AM

Professor Christopher White

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Watch me grow - study widens

Deputy Director:

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Train the brain to remove back pain

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Birth in the time of COVID

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Home solution for a sensitive problem

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Discovering brilliance in aged care

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Sharing lived experiences through photography

Rowena Tucker

Editorial Committee

Linda Music (Chief Writer) Kaitlin Bonner Ainslie Cahill Ritesh Chimoriya Lucy Coupland Smita Khandelwal Renecia Lowe Stephanie Macmillan Leila Niemela

NOTE: The information in this magazine is intended as a general introduction to the research being conducted by SPHERE Clinical Academic Groups, Strategic Platforms and Partner Organisations.

All care is taken to ensure that the information contained herein is free from error and/or omissions.

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Foreword A message from Interim Executive Director, Professor Chris White

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ith the launch of In-SPHERE, the official magazine of Maridulu Budyari Gumal, I had the opportunity to reflect on the breadth of research being undertaken by our Clinical Academic Groups and Strategic Platforms and wondered what I would tell my younger scientific self if I had the chance to develop my research in this modern era.

Thirty years ago, I naïvely thought that the lack of effective treatments for the disease I was researching was the barrier to effective care for my patients. Three decades of clinical trials proving numerous treatments were effective were followed by inconsistent and incomplete post proof implementation of these treatments, which bedevils many care models.

I had forgotten to bring the patient with me on the journey of discovery.

Research was something I did for my patients, not with.

We now emphasise the importance of bringing the consumer and community on our research journey and fully understanding the importance of their contribution to extract major impacts and transform

health care delivery. Otherwise, my experience will be repeated, and discoveries will remain idle and disengaged unless the infinite numbers of questions we could ask are refined by our consumers to the few questions we should answer.

“At its core, Maridulu Budyari Gumal is about “working together for health and wellbeing” and collaboration will amplify outputs to be greater than the sum of its parts; greater than any individual or team could do in isolation.”

In this edition of In-SPHERE we have profiled our Consumer and Community Involvement lead, Ainslie Cahill, and my younger self would do well to listen to her advice for developing consumers as partners in our research endeavours.

Professor Chris White

Similarly, we will also be profiling the next generation of clinician leaders in our centres as the academic groups serve as incubators of people as much as ideas.

At its core Maridulu Budyari Gumal is about “working together for good health and wellbeing” and collaboration will amplify outputs to be greater than the sum of its parts; greater than any individual or team could do in isolation.

We showcase several outputs from some of our groups that capture the benefits of working together for disease-based outcomes of common interest across sites, collaborations which may not have happened without the support of SPHERE. The challenge for the next iteration of the Partnership will be to bring our collaborations to disease agnostic health service problems and scale the lessons learned in the last five years to the next phase of this research translation story.

Find out more about Maridulu Budyari Gumal (SPHERE) on our website: www.thesphere.com.au Want to find out how to get an article about your research published in In-SPHERE? Contact l.music@unsw.edu.au 4 In-SPHERE

In brief

Ingham Institute awards their best

Diabetes, Obesity and Metabolic Disease Clinical Academic Group receives MTP Connect funding

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ecognising the impact that diabetes has on mental health is the driving factor behind a new study which has received $744,873 in MTP Connect funding (Targeted Translation Research Accelerator [TTRA] Program Round 2) as one of their key priority areas in diabetes research: mental health.

The Apps and Peer support of a Healthy future and Living well with Diabetes study (APHLID) study run

by SPHERE’s Diabetes, Obesity and Metabolic Disease Clinical Academic Group (DOM CAG) is a collaboration between five SPHERE Partners: Western Sydney University, South Western Sydney Local Health District (SWSLHD), South Eastern Sydney Local Health District (SESLHD), Sydney Children’s Hospitals Network (SCHN) and St Vincent’s Health Network (SVHN Sydney).

The model combines five aspects of care which include: apps to address common mental health issues including anxiety, depression and eating disorders; links to digital tools to self-manage type 1 diabetes; a proven digital platform for day-to-day lifestyle and type 2 diabetes self-management; digital links to the healthcare team; and access to an online peer support network.

The six-month randomised controlled trial of the model

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he Ingham Institute recently celebrated research excellence in South Western Sydney.

Working with major partners – South Western Sydney Local Health District, UNSW and Western Sydney University – the Research Excellence Awards bring together leaders from government, healthcare, education, business and community, who are all working together to transform healthcare in one of Australia’s fastest growing regions.

The winners have provided significant contributions to applied medical research and its impact to inspire health and transform care across the local and global community.

Lady (Mary) Fairfax AC, OBE Distinguished Researcher Award:

Professor David Simmons will lead the study

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.

With a vigorous evaluation process in place, the model has pathways to scale across six hospitals including Campbelltown, Westmead Children’s, St Vincent’s, St George, Liverpool, and Bankstown-Lidcombe Hospitals, as well as across two regional Aboriginal Medical Services.

Professor Mark Parsons, Associate Professor Therese Becker Early Career Researcher Award: Dr Chamini Perera Higher Degree Student Award Tanzila Khan Excellence in Teaching Award: Prof Wei Chua Best Administration & Research Support Award Belinda Kleut

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Cancer CAG committed to building research capacity As part of a NSW Government $21 million investment for building research capacity across the state, SPHERE’s Cancer Clinical Academic Group (Cancer CAG) is the recipient of a $7 million Cancer Institute NSW Research Capacity Building Grant (2021-2026). Built into this funding is support for PhD candidates as well as clinicians undertaking translational cancer research.

In its commitment to building research capacity, the Cancer CAG developed an annual skills development workshop for the PhD students it funds as well as a PhD Career Pathway workshop, open to all, which gives students an opportunity to understand the different career pathways post PhD. In addition, the Cancer CAG created annual PhD Scholarship Top-Up Awards and Clinical PhD Scholarship Top Up Awards. These awards not only provide financial assistance but also provide award recipients with skills and experiences in translational cancer research.

In mid-2022, the Cancer CAG awarded seven PhD Scholarship Top-Up Awards and five Clinical PhD Scholarship Top-Up Awards to PhD candidates from across the network.

Congratulations to the following award recipients: PhD Scholarship Top-Up Awards Allegra Freelander, Bonnita Werner, Dmitrii Shek, Felix Kohane, Golam Sarower Bhuyan, Jessie Zhu, Sana Haider Clinical PhD Scholarship Top-Up Awards Vicky Chin, Julia Chen, Veena Gullapalli, Omali Pitiyarachchi, Milita Zaheed

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Profile

Dr Georgina Kennedy, Cancer CAG Research Fellow

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r Georgina Kennedy is a clinical research data specialist with an interest in natural language processing and machine-learning data-driven modelling. For the Cancer CAG, she is delivering a collaborative research program focusing on the systematic improvement of quality, integrity and capacity of clinical data research using innovative software platforms and methods.

“My remit is unlocking the observational data in the cancer space for research use. I use UNSW’s Cancer Variations (CaVa) platform to look at all the value that’s in patients’ clinical records and figure out how to make it accessible to clinicians and researchers.

“My work falls into the CAG’s ‘Reducing unwanted variation’ priority.

Looking at variation is very challenging. For example, it’s easy to say that a patient experienced an unwanted variation because they didn’t have treatment exactly as specified by the treatment protocol. But the treatment protocols themselves are very complex, so even fully describing the differences between treatment as intended versus treatment as delivered is not as simple as it might seem.

“I’m looking at the different types of metrics we can produce that don’t just reflect a difference between treatments but delve deeper. If we see a certain population of patients sit very closely to the expected treatment path, and then we see a distinct sub-population vary in a specific way, I want to understand what type of explanations we can layer on top of that, how we can build in a meaningful clinical process that can flag them at an early stage, and what the impact is likely to be.

“I work closely with the data teams at the South Western Sydney and South Eastern Sydney Local Health Districts and I’ve been working with a number of clinicians who have data problems they want solved. One of the ways that’s being done is through the Master’s program at the UNSW Centre for Big Data Research in Health where students are helping us work on these challenges.

“I’ve previously built tools for neuroscience testing and I’ve done commercial drug trials and infrastructure as well, but I’ve only recently come to look at oncology.

One of the interesting things about this field is the chronic nature of cancer and the fact that you have to follow these patients and their disease journey over time. It’s not just about diagnosis x; it’s diagnosis x and this secondary cancer and then this metastasis and then all of the different factors that happen down the track.

“As a data specialist, you don’t often get these opportunities and the resources to think about big-picture solutions to these problems. Through the CAG, the fact that we have the ability to make big strategic data development decisions is inspiring.

If I can spend some time smoothing out problems for other people to help them advance their research, that’s a really good outcome.”

Georgina’s role is supported by the Cancer Institute NSW Research Capacity Building Grant awarded to SPHERE’s Cancer CAG.

Profile

Associate Professor Genevieve Steiner-Lim Associate Professor Genevieve Steiner-Lim, Co-lead of SPHERE’s Age and Ageing Clinical Academic Group, dreams of memory clinics where the latest research forms the basis of treatment and interventions.

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n Associate Professor Genevieve Steiner-Lim’s ideal world, patients coming into memory clinics would get access to treatment and interventions based on the latest evidence-based research. In these clinics, clinicians and researchers would work together offering each patient personalised treatment and coordinated care which would directly improve their health outcomes.

While much progress has already been made in this area, such as the creation of a gold-standard memory clinic “one-stop-shop” model of care, A/Prof Steiner-Lim who coleads SPHERE’S Age and Ageing Clinical Academic Group (AAA CAG) together with Prof Friedbert Kohler (Clinical Director, Aged Care and Rehabilitation, South West Sydney Local Health District), sees the potential for even greater

improvements addressing unmet needs in this field.

“So many discoveries and innovations in research sit on the shelf gathering dust, never seeing a patient in the real world. A very small amount of actual research gets translated and I’m passionate about seeing this change. The only way this can happen is if multidisciplinary teams of researchers and clinicians work closely together on discovery science and clinical trials to make sure that the research questions being answered are practical, holistic and, ultimately, can move seamlessly between the benchtop and the bedside, and vice versa,” she explains.

As the Clinical Research Lead at Western Sydney University’s NICM Health Research Institute and an NHMRC Emerging Leadership

Fellow, A/Prof Steiner-Lim’s research spans early detection, prevention, and treatment of memory issues in older people with the aim of reducing dementia risk and improving quality of life.

Her research program builds on a strong foundation of fundamental human cognitive neuroscience. In earlier work, she discovered that the human pupil dilates to new information regardless of whether it is relevant or not – a finding that challenged the long-held belief that the pupil dilation response is a measure of the ‘what is that?’ reflex. Her discovery was adopted by NASA to inform methods for capturing sensory information from astronauts experiencing reduced stimulation during long duration spaceflight.

A/Prof Steiner-Lim established In-SPHERE

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her research group in 2016, ‘the HEADBOX Lab,’ which aims to understand the biological bases of human behaviour and cognition. Her team uses psychophysiology and psychopharmacology to generate new knowledge on brain function and assess how new and emerging therapies affect neurocognition. This adds a depth of understanding to clinical trial outcomes in dementia and mild cognitive impairment, going beyond whether interventions improve cognition or delay deterioration, by showing how interventions work (or don’t work) to help us better understand personalised treatment.

A/Prof Steiner-Lim works closely alongside her husband, Dr Edwin Lim, a neuroscientist and biostatistician with expertise in cell culture, animal models, biochemistry, and machine learning. Together, they are a powerhouse of ideas and innovation, delivering integrated and transdisciplinary neuroscience research that can directly benefit patients.

Her latest five-year research program, “Teaching an old brain new tricks: optimising cognitive training through neuroplasticity,” which received a $1.5 million NHMRC Investigator Grant (APP1195709) in 2020, aims to promote independence, functioning, and diminish disability and deterioration from dementia. To do this, she is stimulating neuroplasticity – the brain’s in-built ability to adapt and rewire itself – and harnessing its power to optimise interventions for older people who have a high risk of dementia.

consecutive NHMRC Fellowships (NHMRC Investigator Grant, 2021-2026 and an NHMRC-ARC Dementia Research Development Fellowship, 2016–2020), 22 awards and prizes including a NSW Young Tall Poppy Science Award (2018) and an Australia-China Young Scientists Exchange Program Award (2016), attracting >$15.6 million AUD in grant funding ($6.2 million as CI), and publishing >70 peer reviewed publications in high ranking journals in her field (e.g., World Psychiatry; #1/157 ranking journal in Psychiatry).

Receiving the NHMRC Investigator Grant at Emerging Leadership 2 is no small feat (only 8.4% of female applicants at her level were successful). But for those who have worked with A/Prof Steiner-Lim, it comes as no surprise.

She currently leads a team of 13 (three postdoctoral fellows and 10 higher degree research students) and, prior to her current role, was Director of Research at the NICM Health Research Institute (2019–2020) and President of the Australasian Society for Psychophysiology (2017–2019).

Since graduating with a PhD in Psychophysiology with Examiners’ Commendation for Outstanding Thesis from the University of Wollongong in 2015, some of her awards and achievements include two

With A/Prof Steiner-Lim at the helm of AAA CAG, SPHERE is excited about the power of research to help improve patient outcomes for Australia’s ageing population.

Members of the Steiner-Lim lab at NICM Health Research Institute, Western Sydney University

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Who’s who in SPHERE Ainslie Cahill AM Ainslie Cahill AM, Leader of SPHERE’s Consumer and Community Involvement and Engagement Strategic Platform is a woman with a mission, one that has spanned multiple roles and organisations but always with the same focus: to ensure consumer and community involvement becomes firmly embedded into health and medical research.

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e sat down to chat with Ainslie Cahill and discovered a list of incredible professional achievements as well as a rich personal life filled with a love of family, friends, good food and great wine.

Describe your role and goals as Leader of SPHERE’s Consumer and Community Involvement and Engagement Strategic Platform.

My role is to guide and support our Clinical Academic Groups and Platforms with incorporating consumer and community involvement into their day-to-day work.

In this role, my primary goal is to witness consumer and community

involvement as a natural part of health and medical research – from start to finish – and in a continuous cycle.

including education services, information resources and state/ federal government advocacy.

In addition to your role in SPHERE, you have a long history in consumer and community engagement, can you highlight your greatest achievements in this field?

Surprisingly, this style of consumer and community consultation and involvement was a first for this longstanding health consumer organisation which, up until then, was influenced by health medical researchers, the pharmaceutical industry and health professionals.

When I worked as CEO of Arthritis Australia, we created national conversations/surveys with people living with arthritis and their carers to understand what was important to them. Their responses – followed by that of their health professionals – changed the way Arthritis Australia prioritised its strategy and actions

Why are you passionate about consumer and community engagement?

I get enormous satisfaction from giving vulnerable people a voice which they may not necessarily feel they have; presenting health consumers and In-SPHERE

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“While there has been tremendous progress in consumer and community involvement in health and medical research, we still need to move from an ‘I have to tick the box’ mentality to one that genuinely understands and recognises the importance of collaboration.” community (patients and carers) with information and resources which give them a better understanding of their condition and how to manage it; and taking their needs to state/territory parliamentarians and government officials – ultimately, achieving results on their behalf.

What do we still have to improve to ensure that consumers and communities are better represented in research?

While there has been tremendous progress in consumer and community involvement in health and medical research, we still need to move from an ‘I have to tick the box’ mentality to one that genuinely understands and recognises the importance of collaboration. This will result in high quality and cost-effective health and medical research, which is relevant and beneficial to health consumers, community, the health system/health services.

What are your greatest professional achievements?

Bringing teams of people together from different disciplines and organisations to collaborate and deliver targeted musculoskeletal projects and programs that have been formally recognised across Australia and internationally. This united approach resulted in Arthritis Australia being commissioned by the Australian Government Department of Health, at the request of the then Health Minister, to develop a National Strategic Action Plan for Arthritis.

Also, peer recognition of my voluntary and professional health consumer advocacy has resulted in Life Membership of Consumers

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Health Forum of Australia, Life Membership of Arthritis Australia, and an Order of Australia (AM).

Putting your professional life aside, what can you tell us about the personal side of Ainslie Cahill?

What makes you tick?

My favourite ingredients for purposeful living are people, relationships, good food and Barossa Valley shiraz – when I mix them all together, my life is rewarding, full of fun and fulfilled.

My greatest achievement is maintaining loving and enduring relationships. I have family and friends around the world and make a point of keeping in touch and, occasionally, visiting them (or vice versa). My friends include some from Grade 1 at primary school, a New Jersey USA penfriend with whom I was matched at aged 10 and others I met on my first day of high school.

Every year my husband, Woody and I spend two-to-three weeks in Perth, including Christmas Day with all The Cahill Clan (my side of the family).

We can have up to 30 people – and sometimes as few as 14 - made up of three generations plus the occasional ‘waif or stray’. We eat too much, drink too much, talk over each other, laugh a lot, play ‘parlour’ games (albeit outdoors), have intermittent dips in the swimming pool and finish off with singing and dancing.

Is there anything else people would be surprised to know about you?

I was born in Kalgoorlie Western Australia. We lived in Boulder and my father worked on the Golden Mile Mine. Our family moved to Perth

when I was 18 months old and I didn’t return until I was 38. At that time, Woody and I drove my parents to The Goldfields so they could give me a ‘personal guided tour’ of our family history and connections. It was a wonderful experience.

When I was 21, and on a working holiday in London, I was employed Monday to Friday as a secretary in the Lord Chancellor’s Office, House of Lords (Parliament) and on weekends was breakfast cook/dishwasher at the Royal College of Surgeons where the entitled, albeit larrikin, Australian resident students caused me some grief (needless to say, I gave as good as I got!).

In 1977, I began working with Ita Buttrose – she was 35 and I was 23.

Over the years I have undertaken a variety of roles with her and for several companies (Private Assistant, National Special Events Manager, General Manager and CEO). Ita and I have forged a brilliant and unique relationship (boss, mentor, and friend) and have many common interests, including a passion for health consumer advocacy.

I have competed in four City to Surf events, running non-stop from start to finish. These days, I could walk nonstop from start to finish but that’s as good as it gets.

Working with internationallyrenowned author, Morris West, I completed a film production course at the Australian Film and Television School. A few years later, I declined a job offer in Hollywood, because I had met and fallen in love with my, later to be, husband. No regrets – we’re still happy and still looking forward together.

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Watch me grow - study widens

rawing on the success of the “Watch me Grow – Electronic platform (WMG-E)” which forms part of a universal preschool development surveillance program, a new randomised controlled study is examining the use of this electronic platform to address a critical COVID-19 service delivery gap.

The study explores the use of an innovative digital platform (the WMG-E platform) to screen child development, as well as parental mental health and psychosocial needs as an alternative to Child and Family Health Nurse clinics to determine whether it improves uptake of, and ongoing engagement with, health care services.

The two-year study, led by Professor Valsamma Eapen of SPHERE’s Early Life Determinants of Health Clinical Academic Group and managed by Teresa Winata, Senior

Research Officer at Infant Child Adolescent Mental Health Service (ICAMHS), has recruited 288 families across South West Sydney and the Murrumbidgee Local Health Districts who were unable to attend clinics due to COVID restrictions and isolation requirements and/or have limited access to services due to their remote locations. The study comprises two groups: a control and an intervention group. Both groups received access to WMG-E which screens three categories: parental mental health, the family’s psychosocial needs and child developmental checks. However, the intervention group receives an additional “service navigator” who is trained to provide relevant links once concerns are identified. The service navigator links the families to the right care at the right place in a timely away.

The digital navigation also provides ‘warm handover’ when referrals are made and continuity of care during

the six month follow-up period of the study.

“The idea is to provide wrap around health and social care in an integrated way by the service navigator who would also assess any changing needs of the families and provide the resources necessary to address those needs,” Teresa explains.

“We’ve received significant positive feedback from the intervention group including multicultural and Aboriginal families. Our service navigators are doing brilliant work in providing continuity of care for families by contacting and reminding them to take-up any necessary services. This encourages and empowers families to continue monitoring their child’s developmental checks which they might not otherwise have completed.”

The study is expected to be completed by mid-June 2023.

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Train the brain to remove back pain We’ve all heard the expression “It’s all in your head.”

In the case of chronic back pain, it may actually be true.

But not in the way you think.

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ain researchers have long understood the connection between the brain and the body when it comes to chronic pain. This connection is particularly evident in chronic back pain which can persist for decades without a reliable physical explanation or cause. Indeed, it has been understood that people suffering from chronic pain have adaptations in their brain which can lead the pain to persist. For these people, their pain is unresponsive to drugs, surgery and exercise treatments because these interventions attempt to treat the pain where it is felt (the back) and not at its source (the brain).

A group of Australian researchers from two of SPHERE’s Partner Organisations: UNSW and Neuroscience Research Australia (NeuRA) have recently published the results of the RESOLVE trial in the August 2022 issue of JAMA. This trial shows that sensorimotor training not only decreases back pain for chronic pain sufferers but, in many cases, completely eliminates disability associated with the pain. RESOLVE

paves the way for the new effective drug-free treatment for chronic pain to be available to patients across Australia as early as six to nine months from now.

And it all starts by training the brain.

The brain and chronic pain RESOLVE trial leader, Professor James McAuley, Director, NeuRA’s Centre for Pain IMPACT (Investigating the Mechanisms of Pain to Advance Clinical Translation) and the School of Heath Science at UNSW, explains that the brains of people suffering from chronic back pain are different to people who don’t have pain.

“Information coming into the brain from the back is processed differently by people with chronic pain. We think this makes the brain oversensitive to perceived threats to the body.”

Professor McAuley, who is also a member of SPHERE’s Musculoskeletal Health Clinical

Academic Group (MSK CAG) and Lead of the Low Back Pain Group, further explains there are both functional and structural differences in the brains of chronic back pain sufferers.

“In people with chronic back pain, our research showed that there is reduced volume of grey matter in the medial pre-frontal cortex and interior insular of the brain. These two areas are often associated with cognitive function and emotional processing and regulation.”

The other place where there are obvious differences is in the primary somatosensory cortex. An important function of the primary somatosensory cortex is its ability to locate where specific sensations arise in the body. For people who have had back pain for a long time, that ability becomes more diffuse.

The representation of the back has changed which means that the signals coming from the back may be represented inaccurately.

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development of this new therapy.

“It has opened up a new way of managing pain. We realised that if information coming from the back to the brain is processed differently, we could develop some therapies to try to make that processing more precise.”

The RESOLVE trial Understanding the critical role that the brain plays in chronic pain, researchers developed a graded somatosensory retraining program to train the mind and body together.

“People with back pain are often told their back is vulnerable and needs protecting. This changes how they interpret information from their back and how they move their back.

Over time, the back becomes less fit, and the way the back and brain communicate is disrupted in ways that seem to reinforce the notion that the back is vulnerable and needs protecting. The treatment we devised aims to break this self-sustaining cycle,” Professor McAuley explains.

The treatment had three goals. The first was to align patient understanding with the latest scientific evidence about what causes back pain. The second was to normalise the way the back and the brain communicate with each other, and the third was to gradually retrain the body and the brain back to a normal protection setting and resumption of usual activities.

The study divided 276 participants from South Eastern Sydney and South Western Sydney Local Health Districts into two groups. Over 12 weeks one group undertook graded sensorimotor retraining and the other sham treatments designed to control for placebo effects, which are common in low back pain trials

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A photo of the patient’s back is provided to help with training

The first group: retraining After the first step of the trial, which aimed to improve patients’ understanding of the way the brain processes pain, patients underwent retraining sessions with the aim to reconnect the brain and the back.

When touched on the back, people with chronic pain have difficulty pinpointing the intensity and exact location of where they are being touched. This lack of tactile acuity was the focus of the training which involved gently touching a person’s back with a pair of calipers and then have them guess where the sensation was felt by one point or two. To help them do this, patients held a photograph of their backs which were marked with small dots.

In addition to locating where the touch was coming from, patients were touched with either the pointy or blunt end of the calipers and asked to identify whether the touch felt smooth or sharp.

Professor McAuley explained that as a patient’s tactile acuity improved, they became less uncertain about the information being processed from the back to the brain.

Patients were then asked to look at photographs and videos of people moving their backs and then to imagine themselves doing the movements.

In the third and final step of the training, patients were taught to experience movement of their backs without pain. This included mastering precise movements of the lumbar spine, thoracic spine and hips. Then, using the skills learnt from these movements, patients progressed to practising components of functional tasks they had previously identified as being problematic. Finally, participants practised functional movements relevant to their values and goals.

The second group: sham treatments Bias was reduced in the trial by the inclusion of a placebo (control) group, who for 12 weeks, received weekly sham treatments including brain stimulation and low intensity laser therapy from machines that were not actually switched on.

“This is the first treatment of its kind for back pain that has been tested against a placebo.”

As a three-stage program, the treatment aims to change the way that people think about their body pain, how they process sensations from their back and how they move their back during activities.

The results The results of the trial showed a clinically meaningful effect on pain intensity and disability.

For the participants of the graded sensorimotor retraining program, pain levels dropped from 5.6 at the commencement of training to an average of 3.1 (on a scale from zero to 10) at 18 weeks post randomisation.

This was compared to the control group who experienced a drop from 5.8 to four.

“While we know that the role of the brain in pain can mean that even a placebo can make people feel better which did happen in this trial, our sensorimotor training program provided additional benefit beyond that of the placebo.

“People who received the training were happier, reported their backs felt better and their quality of life was improved. It also looks like these effects were sustained over the longterm; twice as many people were completely recovered and there was a clinically meaningful difference in disability that was sustained over one year.

“Very few treatments for low back pain show such long-term benefits,” said Professor McAuley.

Where to now?

The most exciting result of the study is that the treatment can be easily translated into clinics for patients to access. A training package for physiotherapists, exercise physiologists and other clinicians is currently in

Professor James McAuley

development so that the treatment should be available for patients to access at a similar cost to other therapies, potentially as early as the next six to nine months.

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Birth in the time of COVID

Was the experience of pregnancy and giving birth during the pandemic all bad?

We look at two studies which show the positives and negatives

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PHOTO CREDIT: UNSPLASH IMAGE BY RAUL ANGEL

he spread of COVID-19 to Australia in early 2020 prompted the start of a series of restrictions and lockdowns forcing prenatal and postnatal care to undergo a rapid and significant change.

Fewer face-to-face appointments, restrictions on partner attendance at appointments, ultrasounds, and in some cases even the birth, led to deleterious effects on women’s mental health. In addition, the stress of the pandemic itself, as well as quarantine requirements and lockdowns, compounded feelings of isolation and depression for many women.

The Birth in the time of COVID (BITTOC) study, published in the International Journal of Environmental Research and Public Health this year looked at the experiences of over 2600 women during the first year of the pandemic. From August 2020 to February 2021, pregnant women or women who had given birth (since the close of Australian borders in March 2020), completed an online survey and self-reported on depression, social

of the COVID-19 response support and experiences related to COVID-19.

but go further in explaining who has been most affected.

The results were significant. The study found elevated depressive symptoms in 26.5% of pregnant women and 19% in women who had given birth during this period.

Depression during pregnancy and post-partum is considered a public health concern “due to its association with altered motherinfant interactions, more negative child developmental outcomes and considerable personal and economic costs,” the study reports.

Alarmingly, the study found that 60 to 70% of women who reported as having clinically significant depressive symptoms did not receive any form of mental health treatment.

Professor Hannah Dahlen, from the Maternal Newborn and Women’s Clinical Academic Group (MNW CAG), who leads the BITTOC study and was a co-author on this paper, explains that several studies have now found depressive symptoms in perinatal women appear to be greater than before COVID-19.

The BITTOC findings also show impact on the mental health of pregnant women during the pandemic

The study examined the ways in which the pandemic impacted women’s mental health including family stress/discord which they found when moderate to severe increased the risk of elevated depression fivefold compared to women who had no stress/discord.

“These findings highlight the importance of considering pandemic stress in the family, including the potential role of couple interventions to reduce the risk of perinatal depression in vulnerable families,” the study reports.

Interestingly, direct exposure to COVID-19 was not associated with greater depressive symptoms while the study found that exposure

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to pandemic-related news played a significant role in the increase in depression.

Social distancing played an impact on women’s mental health not only due to reduced prenatal care in the form of face-to-face appointments but also due to the inability of families to participate in rituals such as baby showers and the loss of social support during the transition into motherhood.

The positives A study looking at the positive experiences of both pregnant and postpartum women as well as the experiences of midwives during the COVID-19 pandemic was also undertaken under the BITTOC umbrella in a paper titled, Never let a good crisis go to waste: Positives from disrupted maternity care in Australia during COVID-19.

The Australia-wide study looked at what women reported as positive experiences during their pregnancy and birth during the pandemic and what midwives also reported.

The most common positive experience identified was having fewer visitors in hospital which allowed time to bond with their newborn and to initiate breastfeeding without the pressure of socialising with visitors immediately after birth.

Having more time with, and attention from, midwives was also a commonly reported benefit of visitor restrictions.

The study also found that women saw increased telehealth services as a positive but only in specific situations. For example, minor appointments such as when receiving test results or referrals.

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Professor Hannah Dahlen AM

Receiving continuity of care from midwives and having a home birth were also listed as positives as well as having the partner work from home.

Midwives, in particular, were more commonly referenced which, the study explains, “likely speaks to the significance that women place on their relationship with midwives as a key support in the perinatal period.”

The two studies, the first of their kind in Australia, provide insight

into women’s prenatal and postnatal experiences during the COVID-19 pandemic and provide useful recommendations for planning for improved care in the event of future pandemics.

To find out more about the work of our Maternal, Newborn and Women’s Clinical Academic Group, go to: https://www.thesphere.com.au/work/ maternal-newborn-and-womens

Home solution for a sensitive problem Chronic constipation and faecal incontinence could soon be treated in the privacy of one’s home if clinical trials are successful.

D

espite it being a natural part of the digestive process, no-one really wants to talk about what they do in the toilet.

Therefore, when many people develop gastrointestinal disorders, particularly faecal incontinence, the tendency is to not seek medical help. This can mean people with this condition can suffer silently for years when the problem can be resolved with a treatment known as anorectal biofeedback.

Anorectal biofeedback is the first-line treatment option for people suffering chronic constipation and faecal incontinence with a high response rate and favourable longterm outcomes. Up until now, the

treatment in NSW has only been available in a few hospitals which has resulted in long waiting times for care.

However, a new feasibility study and controlled trial, hopes to bring this treatment out of the hospital and into patients’ homes providing help for thousands of people who may not have access to hospital treatment or who may be too embarrassed to seek help.

Led by Dr Jerry Zhou from Western Sydney University (WSU), the “Clinical trial of a new Internetof-Medical-Things device for home-based treatment of anorectal disorders,” funded by SPHERE’s Frontiers Technology Clinical Academic Group, includes two In-SPHERE

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studies: a pilot feasibility study and a parallel arm randomised controlled trial.

But first, what is anorectal biofeedback?

“It’s a therapy that’s very effective in people with chronic constipation and faecal incontinence. These two disorders are usually functional disorders, meaning there is nothing anatomically wrong but rather the muscles responsible for proper defaecation are not functioning correctly,” explains Dr Zhou.

In the case of faecal incontinence, this is the result of weak anal sphincter muscles which may have sustained damage during pregnancy or extensive obstetric history such as multiple births. In chronic constipation, the discoordination between the muscles of the stomach (which need to contract) and the anal sphincter muscles (which need to relax) make going to the toilet extremely difficult.

This is where anorectal biofeedback can help.

Anorectal biofeedback utilises a probe-like device which is inserted into the anal passage. The patient is then guided to contract and relax whilst the device measures the contractions providing the user with visual and/or audio feedback about the strength of these contractions.

patients can wait four to six months to begin treatment. Also, appointments are time-consuming (typically six sessions 1-2 weeks apart with each about 30-60 minutes long) followed by a reinforcement stage of three sessions at three, six and 12 months, which means that few patients complete the full therapy cycle,” Dr Zhou explains.

biofeedback device to be used as a home treatment. The device is paired to a mobile phone app which the inbuilt smart sensors then provide the user with real time information about their progress as they perform the exercises. This data is then shared with the clinician who remotely monitors the patient’s progress.

“This form of biofeedback is very effective. About 85-90% of cases get long-term improvement in bowel habits.”

The aim of the project is to conduct two studies. The first is a pilot feasibility study currently being conducted at Camden Hospital in south-west 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 will commence in February 2023 at Royal Prince Alfred Hospital.

Based on data from major biofeedback clinics in NSW, only 10-30% of patients recommended for biofeedback therapy will actually undergo and/or complete the full course of therapy.

Due to these problems, Dr Zhou and his team developed an anorectal

The research

“A secondary objective is to prospectively assess whether home biofeedback is a more cost-effective alternative to the standard clinicbased therapy.”

“This form of biofeedback is very effective. About 85-90% of cases get long-term improvement in bowel habits. However, there are some problems with the traditional approach. Firstly, there are not many clinics in NSW providing this treatment which means that literally thousands of people, particularly from rural and remote areas, who could benefit from this treatment do not have easy access to it,” says Dr Zhou.

“And because the treatment is only available at a handful of hospitals,

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The anorectal device undergoing design

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.

for commercialisation purposes, Dr Zhou realised that treatment can be more accessible if the device is commercialised.

“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.

“This is why we partnered with SPHERE’s Frontiers Technology CAG who provided initial funding. The study has also been supported with funding

by Western Sydney University’s Western Venture program.”

“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 a real unmet need.”

Whilst the device won’t be available at your pharmacy just yet, there are plans to bring it to the market in the next few years.

Dr Jerry Zhou

“After the trial we aim to work towards getting TGA approval and setting up manufacturing and quality management systems to bring the device and app to the market.”

“The acceptance of telehealth as a real alternative to face-to-face appointments has also helped to make this home-based treatment a reality.”

A real prospect for commercialisation While the initial idea for the anorectal biofeedback device wasn’t

The anorectal biofeedback device and app

Small scale production could one day grow to full scale commercialisation In-SPHERE

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Discovering brilliance in Aged Care Every day across aged care, people are making a positive difference.

They do this through acts of brilliance that give meaning and joy to people who receive, deliver, and/or manage healthcare.

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W

hat constitutes brilliant aged care is the focus of a study funded

by SPHERE’S Age and Ageing Clinical Academic Group. The study involves a team from different organisations, led by Western Sydney University Associate Professor Ann Dadich, who is also the Deputy Director of SPHERE’s Consumer and Community Involvement and Knowledge Translation Strategic Platform.

“We wanted to discover what brilliant aged care looks like. So, we invited nominations from far and wide to recognise people who deliver

brilliant care through an award, irrespective of whether they were a clinician, a practitioner, a manager, a carer, a friend or a family member,” explains Associate Professor Dadich.

After interviewing the individuals who were nominated for the award, researchers discovered some commonalities in how people understand and demonstrate brilliant aged care.

“Typically, in a service that cares for older people, there are assessment measures that solely consider an older person’s clinical needs. However, the individuals who were nominated, collectively told us that brilliant

aged care means having a deep understanding of an older person. They took time to really learn about an older person: their likes, their dislikes, their routines, their hobbies, even things like how they preferred their coffee or tea.”

With a deep understanding of an older person, the nominees demonstrated perceptiveness and responsiveness in accommodating the older person’s changing needs and preferences.

While having a deep understanding of an older person seems like common-sense, it can be overlooked when other organisational priorities prevail. Typically, there are tasks to complete by particular times, like showering and mealtimes.

“The findings from this study remind us that relationships matter,” says Associate Professor Dadich.

Another common ingredient in brilliant aged care was promoting choice for older people. The award nominees spoke of ways they ensured older people had options. For instance, rather than assume an older person should not engage in activities that represented a falls-risk, they were encouraged to make informed decisions about what they did as well as how and when they did it.

“Removing the dignity of choice is demoralising. The people we interviewed found ways to offer choice by supporting older people to make decisions.”

Twelve nominees received the Brilliance in Aged Care Award, all of whom were surprised and excited by the recognition.

“As you can appreciate, the awardees are incredibly humble people. They don’t see themselves as brilliant because it’s often the little things that they do that make a huge positive difference to older people and their carers.”

Translating the lessons learnt

Recognising and learning from people who contributed to brilliant aged care was only the first step of the study. Armed with this information, Associate Professor Dadich and the team facilitated a series of workshops with experts to co-design a brilliant model of aged care. These experts included consumers, carers, clinicians, practitioners, service managers, and academics, all of whom have an interest in aged care.

“These workshops have enabled us to identify what can be done in the aged care sector to promote brilliance, with the least effort and the most impact. It’s not about making huge changes, which can be overwhelming, or superimposing directives on clinicians, practitioners, or service managers. Promoting and sustaining brilliant aged care will require working with stakeholders to identify and introduce micro changes with significant impact.

W

hen Shannon Azzopardi was told she’d won a Brilliance in Aged Care award she was excited and honoured.

Shannon Azzopardi, Diversional Therapist at Garrawarra Centre

“I am passionate about my work as a Diversional Therapist helping to improve the quality of life for people living with dementia. I do my job because I love it, I didn’t realise my work would be considered brilliant!”

Associate Professor Ann Dadich

“The expertise on what to do and how to do it largely lies with consumers, carers, clinicians, practitioners, and service managers.

I would like to harness this expertise to promote aged care that exceeds expectation, bringing joy and delight to those who experience it or witness it.

“This approach promotes knowledge translation and is also about capacity building. We’re enabling stakeholders to reflect on what brilliance might mean for them, informed by these key ingredients, and then take actionable steps that are feasible and sustainable to make brilliance happen more often.”

Associate Professor Dadich welcomes the opportunity to collaborate with like-spirited individuals to promote brilliant care across our expansive health system. She can be contacted via A.Dadich@westernsydney.edu.au But brilliant it is, according to the colleagues who nominated her.

Shannon creates leisure programs to meet the interests and needs of residents at the Garrawarra Centre, situated in South Eastern Sydney Local Health District, a unique aged care residential facility specialising in the care of people with advanced dementia.

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Sharing lived experiences through photography Bringing together consumers and community to advance knowledge of feeding difficulties in childhood was the goal of an innovative photographic exhibition – Be Not Afraid Of My Body.

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he exhibition was the culmination of behind-the-scenes work

by SPHERE’s Consumer and Community Involvement and Knowledge Translation Strategic Platform and the SUCCEED Child Feeding Alliance, funded by SPHERE’s Early Life Determinants of Health Clinical Academic Group (ELDoH CAG).

For many, the idea of feeding difficulties in childhood may conjure up images of fussy toddlers refusing to eat certain foods but childhood feeding difficulties can be far more complicated.

“Feeding difficulties include a variety of feeding or mealtime behaviours that are problematic for a child or family,” explains Associate Professor Ann Dadich who is also Deputy Director of SPHERE’s Consumer and Community Involvement and Knowledge Translation Strategic Platform.

These can include an inability to consume various foods; a limited, excessive or variable appetite; prolonged mealtimes; and/or disruptive mealtime behaviours. Many children with serious health conditions like cancer, heart disease, prematurity, cerebral palsy, or cleft palate, are unable to eat and require tube-feeding.

“Tube-feeding can increase developmental issues in children which can be exacerbated because families are often unable to venture into social settings that are critical for child development.”

Through discussion between the SPHERE Consumer and Community Involvement and Knowledge Translation Strategic Platform and the SUCCEED Child Feeding Alliance came a recognition of the importance of photography. Many children who tube-feed and their families are unable to capture family moments on film.

Others, including extended family members, stigmatise parents and children, failing to understand feeding difficulties or feeding care. For this reason, Kate Disher-Quill’s creative talents were enlisted to capture and convey these lived experiences. Kate, an established artist and photographer, is an artist-in-residence with the Strategic Platform with an exceptional ability to visually communicate what is often difficult to communicate, verbally – like emotions, knowledge, and experiences.

Kate spent time with several In-SPHERE

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children who tube-feed and their families to better understand their experiences. She also invited them to be photographed and to take photographs. The result was a complement of exquisite photographs that formed the exhibition – Be Not Afraid of My Body – illustrating the lived experiences of feeding care.

“The exhibition has been displayed at different health services with considerable impact – not only among those who can personally relate to

Co-led by Professor Katherine Boydell, Mrs Ainslie Cahill, and Associate Professor Ann Dadich, the SPHERE Consumer and Community Involvement and Knowledge Translation Strategic Platform hosts a growing number of artists-in-residence, each with their own creative expertise.

Together, one of the platform’s central goals is to advance knowledge translation within and beyond SPHERE by promoting consumer and community involvement via the arts. To 26 In-SPHERE

feeding difficulties or feeding care, but those who have experienced vulnerability, strength, and resilience.

The exhibition is, indeed, one that

conveys experiences that many, if not all of us can relate to,” says Associate Professor Dadich.

foster collaboration, the strategic platform works with and supports the different Clinical Academic Groups, including the Early Life Determinants of Health (ELDoH) Clinical Academic Group.

families. The project harnesses the expertise, skills, and networks of paediatrician Dr Chris Elliot (St George Hospital), Associate Professor Ann Dadich (Western Sydney University), Professor Nick Hopwood (University of Technology Sydney), speech pathologist Kady Moraby (NSW Health), and parents of children with feeding difficulties, Anna Ierardo, Jessica Gowans and Irene Bernard.

The SUCCEED Child Feeding Alliance was ignited by a seed grant provided by the ELDoH CAG. The Alliance represents a unique collaboration between health professionals, academics, artists, and families who are passionate about supporting children with feeding difficulties and their

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