In-SPHERE February 2023

In-SPHERE

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

Issue 2: February 2023

IN PROFILE: ASSOCIATE PROFESSOR NATALIE TAYLOR

THE MICROBIOME IN PREGNANCY : A NEW STUDY

A DEMENTIA FRIENDLY COMMUNITY IN SOUTH WEST SYDNEY

HYPERTENSION IN PREGNANCY: A RISK FOR LATER DISEASE

WOMEN’S HEALTH RESEARCH NETWORK LAUNCHED

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: FEBRUARY 2023 4

Foreword by Acting Executive Director, Chris White

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Profile: Carol Vleeskens

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Profile: Dr Joanna Fardell

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by Claire Thompson Neilsen of Petunia Brown

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MothersBabies Study: a world first

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SPHERE’s Women’s Health Research Network launch

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Profile: Associate Professor Natalie Taylor

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Hypertension in pregnancy: a risk for later disease

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Changing the dementia landscape

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In brief: Inclusive spaces project

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In brief: NSW Cancer Conference

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.

Interim Executive Director: Professor Christopher White Editorial Committee Linda Music (Editor/Chief Writer) Ainslie Cahill (Sub-Editor) Kaitlin Bonner Ritesh Chimoriya Elizabeth Henness Renecia Lowe Stephanie Macmillan Leila Niemela

NOTE: 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 the information contained herein is free from error and/or omissions.

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Foreword

Professor Chris White A message from Acting Executive Director

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fter seven years, people still ask, “What and who is Maridulu Budyari Gumal (SPHERE)?”

It sounds different and looks different because it IS different. Our second Strategic Plan (2023-2026), has been endorsed and will build on the strengths and investments of the first seven years to further define our identity and point of difference in a crowded research landscape.

SPHERE remains an ambitious attempt to forge partnerships between academic, clinical and health service partners to accelerate discovery into practice. Sometimes an organisation’s identity is first shaped by defining what it isn’t before knowing what it is, or will eventually become with time and implementation of its strategy.

SPHERE is not just in the health translation business; we are in the health transformation business.

We aim to implement sustainable health service changes that improve the health and wellbeing of our communities, safely and equitably.

This is why Implementation Science is a cornerstone platform of SPHERE. In this issue of In-SPHERE, Associate Professor Natalie Taylor, shares her insights into its fundamental practice and her role as an Implementation Scientist (p.10).

SPHERE is not just in the data

sharing business; it is in the health services research and resource allocations business. We are uniquely placed to leverage our size and diversity to ask data-driven health improvement questions across the Partnership. We need to be able to answer them in time series evaluations, so that interventions can be rapidly

SPHERE fills the gaps around you and connects you within and across the partnership and beyond. monitored for post-implementation effectiveness.

SPHERE is not just in the evidence business; we are in the community engagement business, including and answering their priority problems.

In this edition we profile consumer representative, Carol Vleeskens, who has spent more than 20 years working in consumer and community advocacy helping to guide researchers about which questions we need to ask. The importance of asking these questions is evident in the development of a dementia-friendly community in South West Sydney (p.17) or research

into Inclusive Spaces for LGBTQI+ people (p.20).

In 2023, the answer to the question, “What is SPHERE?” is: whatever YOU need it to be.

SPHERE fills the gaps around you and connects you within and across the partnership and beyond. It is supposed to define your unmet needs as well as source solutions for our partners on their health transformation journey whether they are consumers, clinicians, health service managers or researchers. SPHERE is a research social network as can be seen by the recent launch of our Women’s Health Research Network (p.9) and in our collaborations with other organisations for events like the NSW Cancer Conference (p. 20).

This generation does everything online. From ordering pizzas to partners. COVID accelerated new ways of working and doing business.

While this edition of In-SPHERE is an online magazine, highlighting the achievements and opportunities of many, it is conceivable within the iteration of our new strategy that our membership integrates and socialises around new ways of linking in and scaling knowledge in an ever sophisticated and evolving way.

This SPHERE is spinning. Enjoy the ride.

Find out more about Maridulu Budyari Gumal (SPHERE) on our website: www.thesphere.com.au 4 In-SPHERE

Profile

Carol Vleeskens A Consumer Champion A strong belief in, and passion for, equity and social justice have been the driving factors behind Carol Vleeskens’ career and her involvement in Consumer and Community Advocacy.

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hen Carol was diagnosed with arthritis in 2001, she had already spent many years incorporating consumer participation and feedback in her own work as a sociologist.

“I had worked for a not-for-profit organisation and was evaluating a program I’d set up. As part of that process, I interviewed participants to make sure their voices were heard.

There had already been some work developing a citizen participation ladder in the late 60’s so I used that approach as well as Participatory Action Research to ensure that I was engaging with the consumers of our service,” explains Carol.

“This was supported by work I had done for my Masters which focused on a community engagement/community participation approach.”

When South Western Sydney Local Health District (SWSLHD) became the first health district to take on the Minister’s suggestions and incorporate consumer participation into their planning, Carol immediately put up her hand to get involved.

“I was working part-time in health in the area planning unit and was interested in being involved because of my lived experience as a consumer with arthritis but wasn’t sure if I could be classified as a consumer because I was working in the health service.”

Luckily, that was not considered a

problem and what followed has been a 21-year involvement in Consumer and Community Advocacy. From working and leading Consumer committees at a local, district, state and nationwide level to presenting at conferences, Carol has put her energies into ensuring the voice of the consumer is heard at all levels of the health service.

“It’s been an interesting experience to change the paradigm which for so long has been top-down and whitecoat driven. However, a change in societal attitudes as well as a more patient-centered approach adopted by the health service has helped empower the consumer to be more assertive when dealing with the health system.”

To recognise her commitment to the community of South West Sydney, Carol received the 2022 SWSLHD Harry Collins Award for Excellence in Consumer and Community Participation.

Working with SPHERE At SPHERE, Carol was the convener of the Musculoskeletal Clinical Academic Group (MSK CAG) Consumer Community Council from its inception in 2018 until late 2021.

“When we set up the Consumer Council our first task was to ensure clinicians and researchers understood the importance of community and consumer involvement. Things are definitely changing and many

researchers now see consumer and community involvement as absolutely necessary to ensure better outcomes for their research.”

Although Carol has stepped down from her convener role, she is still an active member of the committee and is currently consumer co-lead on the Channelling Consumer Voices to Transform Person Centred Care, (Consumer PCC) study which aims to identify and address the unique needs, concerns and preferences of people with specific MSK conditions.

The study team includes more than 30 people from across Australia and overseas and three SPHERE CAGS including MSK CAG, Aboriginal Health and Wellbeing CAG and Age and Ageing CAG. Sixteen people on the team are lived experience consumers or community/consumer research partners.

“It is very exciting because as far as we know it is the first consumer-led piece of research under the SPHERE umbrella,” explains Carol.

Although Carol has stepped down from some of her convener positions, she remains committed to continuing consumer and community advocacy.

“It’s a passion I’ve pursued my whole life and continue to pursue: to ensure that consumers and the disadvantaged have a voice.”

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Profile

Dr Joanna Fardell Cancer CAG Research Fellow

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r Joanna Fardell is a neuropsychologist with an interest in improving quality of life and survival for people of all ages impacted by cancer. Her research investigates cognitive impacts of cancer and its treatment across the lifespan, measurement of patient reported outcomes, and the development of interventions that support people living with and after cancer to engage more fully with life.

“My work sits within the CAG’s ‘living better before and after cancer’ area of focus. It’s about developing models of care that can be delivered during and after cancer treatment to ensure quality of survival. We can deliver these interventions at various levels and intensity, starting with addressing information needs through to working on individualised strategies, rehab or therapy that can support or overcome the impacts of cancer and its treatment.

“I’m currently working on ways to best assess patient-reported outcomes in paediatric oncology.

Fortunately, childhood cancer is blessed with high cure rates, but thinking about what quality of survival looks like is now critical. Treatment is associated with toxicities and sideeffects, and one way to support quality of survival is by looking at what’s happening to kids during treatment, what patients and families are reporting, and then developing tailored supportive services that respond to their needs.

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“The other thing I’m looking at is how to screen for cognitive symptoms during and after cancer treatment among adults and developing models of care around them. For example, when someone returns to work after cancer treatment, their manager and colleagues may not understand that they’re experiencing significant fatigue

“The Cancer CAG is a collaborative group with lots of different ideas and lots of sharing” or lapses in attention or concentration.

Having a good framework in place that helps the people around them understand how to manage or support that can make a real difference.

“These cognitive challenges affect a significant number of people after cancer diagnosis and treatment. We’ve now got reasonably robust evidence that around 30 per cent of survivors experience measurable impact on their cognitive function, and this can persist over time. If you think about the downstream impact on psychological wellbeing and life satisfaction, the

ramifications are significant. As a neuropsychologist, I might be biased but I think this issue is important and worthy of investigating.

“The Cancer CAG is a collaborative group with lots of different ideas and lots of sharing. As a result, there’s a unique opportunity not just to harness the intellect that exists within the CAG but to make a difference through translational research for people living with and beyond cancer.

“My role at the Cancer CAG really complements my role as Deputy Program Lead at the Behavioural Sciences Unit, Kids Cancer Centre and UNSW. My fellowship with the CAG pulls together my professional and research experience so that it spans the translational pipeline from T1 to T4 and also spans all ages impacted by cancer from children to adults.”

Joanna Fardell’s role within the Cancer CAG is supported by the Cancer Institute NSW Research Capacity Building Grant awarded to the Maridulu Budyari Gumal Cancer Clinical Academic Group.

MothersBabies Study: a world first The MothersBabies Study, conducted by UNSW Microbiome Research Centre, examines how changes in the human microbiome can potentially impact on pregnancy, birth and a baby’s growth in the first two years of life.

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hat if there was a way of screening for the risk of pre-eclampsia, gestational diabetes and other perinatal and postnatal health conditions simply by looking at a person’s microbiome?

Researchers of the largest prepregnancy study in the world, the MothersBabies Study, are hoping their research into the microbiome will help them develop exactly that.

The MothersBabies Study, conducted by UNSW Microbiome Research Centre which includes researchers from SPHERE’s Maternal Newborn and Women’s Clinical

Academic Group, has the potential to transform pregnancy, birth and early childhood health outcomes. And it all begins with looking at the microbiome.

But first, what is the microbiome and why is it important? The microbiota is the community of microorganisms such as bacteria, archaea, viruses, protozoa and fungi living in or on the human body.

The microbiome is the collective genome content of that microbiota and has been recognised as a major contributor to human health.

Due to growing worldwide research, it is now accepted that

the development of a person’s microbiome begins well before birth and can impact the health of the next generation, explains the study’s Principal Investigator, Professor Emad El-Omar.

“The MothersBabies Study asks the important question: does the microbiome interact with a person’s health and lifestyle, ultimately contributing to pregnancy outcomes such as gestational diabetes, preeclampsia, excessive gestational weight gain, perinatal mood disorders and postnatal long-term health

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prevent these adverse outcomes from occurring. If we can prevent things like pre-eclampsia and gestational diabetes, then it has a massive downstream impact.

Professor Emad El-Omar

Project Manager, Naomi Strout

outcomes for both mother and child?” he said.

To determine this, researchers are recruiting 2000 mother/baby pairs across Australia commencing from pre-pregnancy and following them through to two years postpartum.

MothersBabies Project Manager, Naomi Strout, explains that the reason why the study commences prior to conception is to get a clearer picture of whether a woman’s microbiome before pregnancy, impacts pregnancy outcomes.

“We want to understand what women are doing in pre-conception time to determine whether it impacts, not only conception, but also early pregnancy and whether they will go on to develop any adverse pregnancy outcomes,” explains Naomi.

“We hope to be able to potentially

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“By stopping the disease from happening also means we’re stopping any intervention that could be detrimental to the woman and reducing the risk for the babies in developing non-communicable diseases such as allergies, asthma and neurodevelopmental conditions such as autism and ADHD, as they grow up.”

In the pre-conception stage, researchers collect an array of health data including information about the woman’s diet, physical activity, lifestyle and sleep, obstetric history, mental health, previous pregnancy complications and birth outcomes, impact of COVID-19 as well as use of drugs, alcohol, antibiotics, multivitamins and probiotics. Blood, urine and stool samples are taken every three months until the woman becomes pregnant. Once the woman falls pregnant, samples are taken in each trimester. These samples include stool, blood and urine samples as well as oral, vaginal and skin swabs.

“This gives us a really good overview of what the microbiome changes look like during pregnancy.

of these collections is at one week post birth.”

After this time, the sample collections are paired with the mother and baby at two months, six months, one year and two years post birth.

At these stages, health information about the baby is also taken including length, weight, head circumference, vaccination updates, type of birth, mode of feeding, developmental milestones, illness, any medications and impact of COVID-19.

“We have made these time frames consistent with the ‘My Personal Health Record’ blue book for baby’s developmental checks to make it easier for mothers to remember visits and so they don’t have to collate additional data.”

The study aims to recruit 2000 mother/baby pairs and more than 500 women have been recruited so far.

Women from every state in Australia are represented, across both urban and rural areas.

“NSW Health is also on board which means we will be able to start collecting blood and urine samples from NSW-based participants who come into the hospital setting,” explains Naomi.

“The microbiome has been shown to change in pregnancy. However, it is unclear when it changes and whether it bounces back to preconception ‘norms’ in the postpartum phase.

Knowing when this happens, and if the changes cause adverse outcomes enables us to potentially prevent adverse outcomes from occurring,” explains Naomi.

If you’re interested in taking part or want to know more about the study, contact mothersbabies@unsw.edu.au

“Once the baby is born, we commence taking samples from the baby including urine and stool samples as well as a skin and oral swab. The first

unsw.to/mothersbabies

or SMS 0436 410 746 To sign up go to:

Women’s Health Research Network launched I mproving the visibility and excellence of women’s health research across SPHERE’s Clinical Academic Groups is the aim of SPHERE’s Women’s Health Research Network.

The Network, which was launched in early February, will work towards enhanced networking, exemplar co-designed projects and targeted mentoring of early-mid career women’s health researchers.

Chairing the event, Professor Janette Perz emphasised the pertinence of the network across SPHERE. “This network is relevant for all of us because women’s health and gender health are issues across all our CAGs and Strategic Platforms.”

Professor Helena Teede AM, Chair of the Australian Health and Research Alliance (AHRA) Women’s Health Research, Translation

and Impact Network (WHRTN), provided an overview of WHRTN and commended SPHERE on the establishment of the new network.

Speaking about their own experiences, the panel which included Ms Alison Barnes, Associate Professor Christine Catling, Professor Aunty Kerrie Doyle and Dr Cannas Kwok, discussed the important issue of building both capacity and capability in women’s health research through partnering and collaboration.

“By banding together with projects and research studies we can enhance and enlarge their impact and better serve our community with the ultimate aim of improving women’s health and education,” said A/Prof Catling.

Sensitivity to cultural differences was highlighted by Dr Kwok who has conducted research in CALD communities including Vietnamese, Chinese, Korean, Arabic, Indian and African communities.

The Network aims to bring together women in both peer networking and mentoring opportunities. Aunty Kerrie Doyle summarised her viewpoints on her role in helping women researchers.

“I take the responsibility to grow other researchers very seriously. To do that, I listen to their perspectives and respect the life experience every person brings to their work, regardless of their formal position.”

Alison Barnes agreed with the importance of mentoring and assisting women on their journeys.

“I believe we should all aim to lift women up.”

Ainslie Cahill, Leader – Consumer and Community Involvement and Engagement provided an outstanding closing address in which she urged the need for progress.

“It is an opportunity for all of us to think about what it is we really want, what we can give and share. Most importantly, let’s start taking action.”

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Profile

Associate Professor Natalie Taylor

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hen A/Prof Natalie Taylor was five, her parents promised they’d take her to the zoo if she could complete 1000 twirls of her hula hoop. What they hadn’t expected was that she could.

One thousand spins later, Natalie and her family were off to the zoo.

This “can do” attitude has been a constant in A/Prof Taylor’s life which has seen her move to Australia from Preston, England, in pursuit of a career where she could make a difference.

As an implementation scientist and university educator, she is certainly doing that.

Developing a Precision Medicine Clinic In 2021, A/Prof Taylor and her collaborators including Professor David Thomas, Professor David Goldstein, A/Prof Kathy Tucker and Dr Frank Lin, were awarded a $5.8 million MRFF Rapid Applied Research Translation Grant over five years to integrate precision medicine into

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routine healthcare in Australia.

“Precision medicine aims to match the right patient to the right trial/ treatment/management pathway.

Unfortunately, while the scientific advances are transformational, the health system and the clinical workforce are struggling to keep up, which means the benefits of precision medicine are not being realised for patients.

“We aim to solve this disconnect by establishing a Precision Medicine Clinic (P-OMICS-flow) in Prince of Wales Hospital for patients with rare cancers or families with inherited high cancer risk.

“The aim is to study and support the implementation of the clinic using evidence-based tools and approaches to ensure the care patients receive through precision medicine trials is coordinated with all relevant elements of the health system, rather than fragmented, as it has been in the past when research and clinical practice were quite separate.

“Care can be delivered remotely, and clinicians can refer patients, receive advice, and connect with experts in precision medicine to optimise treatment and management.”

A/Prof Taylor explains that the research will allow cancer patients with complex cancer-related problems, often with no standard treatment options, to best engage in the most relevant research, advance knowledge about cancer therapies, and continuously feed this new knowledge back into the health system.

Implementation science “My job as an implementation scientist is to take an innovation that shows promise, or has been proven to work in a controlled trial, support its integration into the broader systems and clinical practices within an existing healthcare setting, and to study this process to understand how to scale things up.

“One of the critical ways of doing this is to build capacity, within

the health industry, of people who understand how to initiate and sustain change among their own peers and within their own health settings.”

A/Prof Taylor is no stranger to capacity building. In 2012, she led the development of a training package for the implementation of clinical guidelines which has now been rolled out to more than 1,000 NHS staff in the UK. This training package and toolkit for implementation leads across seven key phases of implementation, with accompanying tools to support application. Since 2016 it has been adapted for the Australian health system and rolled out nationally as part of implementation research in hereditary cancer.

A/Prof Taylor has won two Cancer Institute NSW Premier’s Awards one in 2016 for Translational Cancer Research and the other in 2022 for Outstanding Cancer Research Career Development Fellow Award for her ongoing body of research to optimise the identification of people with bowel cancer who carry the Lynch Syndrome gene.

Approximately 65,000 people in Australia have the gene that causes Lynch Syndrome, a genetic condition that elevates the likelihood of developing certain types of cancer, particularly bowel cancer, throughout a person’s lifetime. The identification of bowel cancer patients who have Lynch Syndrome is crucial not only to provide life-saving treatment but also to implement preventative measures for those who may inherit the genes.

A/Prof Taylor’s research, ‘Hide and seek with hereditary cancer: Translating evidence into practice to identify colorectal cancer patients with a high risk of Lynch syndrome’ aimed at improving the use of clinical evidence by healthcare workers to more effectively identify which patients

with bowel cancer should be tested for inherited Lynch Syndrome cancer genes.

“It was a tremendous privilege to receive the CINSW Premier’s Award amongst so many amazing scientists in the room. Implementation research is typically not as elaborate as basic and clinical science, but is crucial to ensuring scientific discoveries reach patients and understanding the best ways to make this happen. To have lifted the reputation of this field for making a significant contribution to improving care and outcomes for patients feels wonderful.”

Promoting Implementation Science In Sydney, A/Prof Taylor is helping build capacity through her role as Chair of SPHERE’s Implementation Science Leaders’ Panel, a group under SPHERE’s Implementation Science Strategic Platform (co-led

by Professor Sandy Middleton and A/Prof Caleb Ferguson). While only newly established, the aim is for the Panel to support researchers with other clinical or scientific specialities to create methodologically sound and appropriately resourced implementation science-related projects.

“In doing this, it will not only lift the capability of fellow researchers to incorporate implementation science methods into their own grant submissions, but will also lift the reputation of implementation scientists, their skillset, and the contribution they can make.”

As the Implementation Science course convener at the University of NSW’s School of Population Health, A/Prof Taylor is also helping to pave the way for new implementation scientists. She also supervises PhD students for projects with an

implementation science focus. Two such PhD student projects include Joseph Elias who is exploring how to scale up a childhood cancer survivorship program, and Elijah Tyedmers who is designing a study to test the impact of ProCure – a database developed by A/Professor Taylor’s team to support oncologists identify and gain compassionate access to drugs for hard-to-treat childhood cancer patients.

“Through my role I am sharing optimal implementation approaches with students, building more capacity for effective and efficient evidence translation in health.”

A/Prof Taylor’s own PhD could easily have come to a grinding halt when her PhD interview was interrupted by a police raid.

“I was travelling around Australia when my PhD interview was scheduled. So, there I was on the phone in a hostel lobby, talking about tailored interventions while trying to ignore the six policemen armed with batons and police dogs searching for a serial flasher!”

Despite the drama, the interview was a success and Natalie received her PhD in Health Psychology from The University of Leeds in 2011.

A/Prof Taylor laughs as she recalls the interview which became a lesson for tackling life.

“Despite the chaos that seems to follow me, I still manage to make things work.”

With more than 100 research papers, almost 6000 citations, five awards as well as 1000 hula hoop twirls under her belt, A/Prof Taylor’s notion of “making things work” is perhaps an understatement.

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Hypertension in pregnancy

A risk for later disease A new research project aims to educate women and health care professionals about the increased risk of cardiovascular disease and diabetes after hypertension in pregnancy

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or over 20 years, the link between hypertensive disorders of pregnancy (HDP) and longterm health risks has been recognised in scientific literature. As well as being a major cause of short-term maternal and fetal morbidity and mortality, women who experienced HDP are at significantly increased cardiovascular disease (CVD) risk in the future compared to women with no HDP pregnancies. A further key element, adding to the magnitude of concern, is that the onset of these HDPassociated CVD risks and deaths occur prematurely, within 10 years of an affected pregnancy with the risk continuing lifelong.

Despite this, a recent study has shown that both women and healthcare providers lack knowledge about these increased risks.

Addressing this knowledge gap is now the focus of new SPHERE-funded research which aims to translate

the findings into practice through a targeted education program for women with a history of hypertensive disorders in pregnancy.

Long-term health risks associated with HDP The term HDP includes preeclampsia, gestational hypertension and chronic hypertension. While most people are aware that high blood pressure during pregnancy is a concern for both the mother and unborn child, relatively few are aware of the long-term health risks to women post HDP, including a 2-3 times higher risk of developing cardiovascular disease as well as other chronic diseases such as Type 2 Diabetes (doubled risk) and chronic kidney disease (5-10 times higher).

Dr Heike Roth (UTS) conducted her PhD on knowledge gaps about health after hypertensive pregnancy,

supervised by Professor Caroline Homer (Burnet Institute and UTS), foundation lead of SPHERE’s Maternal Newborn and Women’s Clinical Academic Group (MNW CAG), and A/Prof Amanda Henry (UNSW), current co-lead of MNW CAG. Dr Roth’s PhD and now postdoctoral work is partially supported by the MNW CAG, and showed that there is a considerable knowledge gap regarding health after HDP among both women and healthcare practitioners. Dr Roth, in collaboration with A/Prof Henry, is now working on closing this gap.

“Globally, cardiovascular disease (CVD) is one of the leading causes of death in women. This is also true for women living in Australia.

Cardiovascular disease kills more women than any other disease which is why it’s so important to share knowledge with women about their increased risks and ways in which some In-SPHERE

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“We found significant gaps in knowledge about the risk of heart disease, diabetes and renal disease after HDP.” of them may be mitigated,” explains Dr Roth.

“We have this window of opportunity where we know the women who are at increased risk and we know that some of these risks can be minimised with lifestyle adjustments or caught early by implementing preventive screening measures.

“Some of the lifestyle adjustments include healthy eating and exercise.

Preventive measures also include yearly blood pressure monitoring and regular screening for metabolic disorders.”

The knowledge gap findings Dr Roth’s initial doctoral research involved a series of surveys and interviews looking at the knowledge that both women and healthcare providers have about long-term health risks after HDP in pregnancy.

Of the 266 women surveyed, 174 had a history of HDP and 92 had history of no HDP. In total, 492 healthcare providers were surveyed including 26 cardiologists, 188 obstetricians, 203 midwives and 75 general practitioners with additional study in gynaecology/ obstetrics.

“While cardiologists had excellent knowledge of the ongoing risks, there was much lower overall knowledge for all other healthcare providers surveyed. Only 34% were aware that risks start to manifest within 10 years of HDP. So, this was a concerning finding.”

Addressing the knowledge gap for women Dr Roth’s findings of the significant knowledge gaps led to the next part of her research which involved interviewing women who had HDP as well as healthcare providers to explore their preferred educational content, format and access to health information after HDP. Healthcare providers were also asked about their needs regarding transmission of knowledge to post HDP women in their care.

Women were keen to have access to information as soon as possible after birth (preferably before six months postnatal) and wanted that information to be easily accessible online. This has led to the development of a website which forms part of Dr Roth’s post-doctorate research, supported by MNW CAG funding.

The website, which is being trialled for 24 months, will provide 100 participants with essential information about their risks and ways to address these, as well as resources and links to organisations such as the Heart Foundation.

“We’re currently recruiting women who had HDP through St George Hospital and are waiting for approval to recruit from Liverpool and Campbelltown Hospitals as well.

“The aim of this pilot is to see if the website content is sufficient and if the website is easy to navigate and understand.”

Prior to gaining access to the website, women receive a pre-access survey which assesses their general knowledge about risks.

To assist the transition from maternal care to primary care, participants are sent reminders at six months and nine months to make a follow-up health appointment with their GP and are given suggestions regarding the key topics to address at that appointment.

“We also send information about the study to their nominated GP, letting them know the woman is a

“In both cohorts (women and healthcare providers) we found that most know there is an increased risk of HDP recurring in the next pregnancy and that future hypertension, outside of pregnancy, may develop. However, we found significant gaps in knowledge about the risk of heart disease, diabetes and renal disease after HDP. “The poorest knowledge was regarding the risk of diabetes. A woman who had HDP has a higher risk of developing Type 2 diabetes even if she didn’t have gestational diabetes and yet there was very limited knowledge about this risk.”

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L to R: Associate Professor Amanda Henry and Dr Heike Roth

participant in the study and providing the GP with a tick-box pamphlet about the suggested topics to be covered during the appointment and what the long-term follow up optimally would look like so the GP can put in place reminders within their own booking systems.”

After accessing the website for six and 12 months, women are prompted to complete further short surveys which will gauge whether their knowledge of risk has improved compared to their pre-access survey.

“At 12 months postpartum the final survey looks at how useful the reminder system was perceived to be and what lifestyle adjustments the women may have made as a result of taking part in the study,” Dr Roth explained.

Addressing the knowledge gap for health professionals A further study, supported by NSW Health through A/Prof Henry’s EarlyMid Career Fellowship and conducted as part of Ms Jennifer Green’s PhD (supervised by Dr Roth and A/Prof Henry) will address the healthcare provider aspect where the feasibility of implementing post HDP structured education and recommended followup with healthcare providers will be tested. An ethical application is in progress and a steering committee consisting of GPs, obstetric specialists and midwives has been formed. The study is expected to launch mid-2023.

“While this is only in the very early stages, our ultimate aim is to better inform healthcare providers by sharing resources that will not only be useful for their own knowledge acquisition but also their knowledge transmission to women in their care. We also hope to improve the transition of

care between maternity services and primary healthcare providers such as GPs.” Overall, these past, ongoing and upcoming projects will contribute to the current body of knowledge in this area. The evidence can be used to guide the development of larger scale education programs for women and

healthcare providers on health after HDP which may enhance knowledge, preventive health management and more generally improve women’s health trajectories.

For more information, contact Heike.Roth@uts.edu.au

Publications Roth H, LeMarquand G, Henry A, Homer CSE. Assessing knowledge gaps of women and healthcare providers concerning cardiovascular risk after hypertensive disorders of pregnancy - A ccoping review. Frontiers in Cardiovascular Medicine. 2019;6(178).

Roth H, Homer CSE, LeMarquand G, Roberts L, Hanley L, Brown M. Henry A. Assessing Australian women’s knowledge and knowledge preferences about longterm health after hypertensive disorders of pregnancy: a survey study. BMJ Open 2020;10(12): e042920 doi: 10.1136/bmjopen-2020-042920.

Roth, H., Henry, A., Roberts, L., Hanley, L., & Homer, C. S. E. (2021). Exploring education preferences of Australian women regarding long-term health after hypertensive disorders of pregnancy: a qualitative perspective. BMC Women’s Health, 21(1), 384. https://doi.org/10.1186/s12905-021-01524-w Roth H, Homer CSE, Arnott C, Roberts L, Brown M, Henry A. (2020). Assessing knowledge of healthcare providers concerning cardiovascular risk after hypertensive disorders of pregnancy: an Australian national survey. BMC Pregnancy and Childbirth, 20(1), 717.

Roth, H., Morcos, V., Roberts, L. M., Hanley, L., Homer, C. S. E., & Henry, A. (2022). Preferences of Australian healthcare providers regarding education on longterm health after hypertensive disorders of pregnancy: a qualitative study. BMJ Open, 12(5), e055674. https://doi.org/10.1136/bmjopen-2021-055674

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Changing the dementia landscape A team of researchers led by Dr Diana Karamacoska are creating a dementia-friendly community in the heart of South West Sydney.

By Kaitlin Bonner

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he incidence of dementia is on the rise with South West Sydney expected to have the highest rate of increase in NSW by 2050.

The significance of this projection and its impact on the community is not lost on researchers at NICM Health Research Institute, Western Sydney University, who strive to better support the estimated 8,000 people living with dementia in the Canterbury-Bankstown region.

Dr Diana Karamacoska and her team, including Masters student, Eman Shatnawi, aim to establish Canterbury-Bankstown as a dementia-friendly community – a concept that refers to the engagement, enablement and empowerment of people affected by dementia.

“I had two grandparents diagnosed with dementia when I started my PhD in cognitive neuroscience,” says Dr Karamacoska.

“I found myself thinking about how the brains of my grandparents were affected by dementia and what little

support and information we were given when seeking help for them.”

Through the team’s work, funded by the Age and Ageing (AAA) Clinical Academic Group and the Healthy Urban Environments (HUE) Collaboratory of SPHERE, an evidence-practice gap was identified among the diverse communities of South West Sydney where 54% of households speak a language other than English. These individuals, when diagnosed with dementia, face greater social exclusion and poorer health outcomes than the English-speaking population, with the disparities being driven by language barriers, culturally inappropriate and inaccessible dementia education and support services, as well as stigma.

about this condition and how we treat it, so that our loved ones receive the care they want and need.”

The funded project, ‘How can people with dementia and their caregivers be supported by the built environment?’ has recently been completed capturing the insights of English, Arabic, Vietnamese, Chinese and Greek speaking people living with dementia and their caregivers through oneon-one interviews and delivery of information sessions about dementia to these communities. The impact was widespread and well-received, with the team presenting 18 sessions to the community to raise awareness of dementia, reaching more than 1,000 people.

Dr Karamacoska experienced this first-hand with her grandmother.

Due to their work and commitment, this project has seen real changes to policy and infrastructure plans.

“My baba (grandmother) has lived in Australia for nearly 40 years but doesn’t speak English so accessing care for her dementia is a challenge.

I wanted to make a difference in our communities, to change perceptions

“We’ve successfully advocated for the recognition of dementia in Canterbury-Bankstown Council’s policies regarding their Disability Inclusion Action Plan and Positive Ageing Plan. The Council has In-SPHERE

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committed to delivering more education about dementia to their staff and communities. We’re also working with Bankstown’s theatre, hospital, and shopping centre to address infrastructure changes regarding paths, rest areas, signage, noise levels, and lighting to improve the accessibility of these spaces for people with dementia.”

The project also helped launch the Canterbury-Bankstown Dementia Alliance in 2021 which is co-convened

by Dr Karamacoska and Sandra Loyola Sandoval from Canterbury-Bankstown Council. This working group comprises representatives from Western Sydney University, Canterbury-Bankstown Council, South Western Sydney Local Health District, Dementia Australia, CASS Care, Australian Nursing Home Foundation, and Bankstown Dementia Carers Group.

“According to Dementia Australia, we are the first dementia alliance to represent and work with culturally diverse people in Australia,” says Dr Karamacoska.

The alliance informs, guides and translates the research being undertaken in this area. Together, they have successfully co-created and delivered several dementia education sessions in different languages.

These information sessions were incorporated into their annual action plan to ensure destigmatising efforts are sustained.

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So, what’s next? The group was successful in receiving further funding through the AAA CAG and are now embarking on a two-year project looking at dementia literacy, diversity issues, and inclusion practices among multicultural communities and care workforces in South Western Sydney.

“Culturally and linguistically diverse (CALD) people are especially disadvantaged by the lack of accessible, sensitive, and appropriate education opportunities that are available to them. We are thus co-creating a dementia education program with dementia advocates from English, Arabic, Vietnamese, Chinese and Greek speaking backgrounds to translate the knowledge and evidence-base to the families and workers who support people with dementia. We hope to deliver the program in late 2023.”

Dr Karamacoska is proud of her team’s achievements, and grateful for SPHERE’s support over the last few years. Through the SPHERE network, she has been able to have her events promoted, projects showcased, and has been able to connect with the newly established AAA CAG Consumer Council.

“It was great to get their perspective on the project’s design, consumer engagement efforts, and dissemination plan.”

Dr Diana Karamacoska Dr Karamacoska believes the sky is the limit with what she and her team can achieve and hopes that the work they have done so far can be utilised by other communities in the future.

“I’m most proud of the model for multisectoral collaboration and inclusive research that we developed here. We’ve done the groundwork to understand our various stakeholders’ needs so now we can take the next step with our research to develop appropriate interventions. The best part is, this model can be adapted to other settings, in and outside the dementia space.”

To find out more about the Canterbury-Bankstown Dementia Alliance, head to the website: www. cbcity.nsw.gov.au/community/ community-services/seniors/ dementia-alliance or contact Dr Diana Karamacoska via email d.karamacoska@westernsydney.edu.au.

‘A conversation’ with

Professor Jeremy Grimshaw The Nursing Research Institute, in conjunction with SPHERE Implementation Science Strategic Platform are pleased to host:

‘A conversation’ with Professor Jeremy Grimshaw’ Professor Grimshaw is a leading international authority in Knowledge Translation & Implementation Research. His research focuses on the evaluation of interventions to disseminate and implement evidence-based practice.

Date and time:

5pm - 7pm Wednesday 15 March 2023

Venue:

Garvan Institute Lecture Theatre (Proceed to the Burton Street entrance) 384 Victoria Street, Darlinghurst NSW 2010

Professor Grimshaw is a Senior Scientist, Clinical Epidemiology Program, Ottawa Hospital Research Institute; Full Professor in the Department of Medicine, University of Ottawa; and Tier 1 Canada Research Chair in Health Knowledge Transfer and Uptake.

ALL WELCOME! The event will be followed by light refreshments.

Register by 10 March 2023 at Eventbrite Link herehere

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In brief Research to provide inclusive spaces in Sydney

Inaugural NSW Cancer Conference 2022: a success More than 370 delegates gathered on 15-16 September 2022 at the Sofitel Sydney Wentworth for the inaugural NSW Cancer Conference, an event showcasing the strength and breadth of cancer research in NSW and beyond, through high-calibre presentations from international, interstate, and local speakers, incorporating perspectives from across the translational research continuum.

P

romoting and enabling inclusion of Lesbian, Gay, Bisexual, Trans and Gender Diverse, Queer, Intersex, Asexual and other sexual minority groups (LGBTQIA+) is part of new research being undertaken

by SPHERE’s Healthy Urban Environments (HUE) Collaboratory.

The research project, commissioned by the Greater Cities Commission, is led by the Institute for Sustainable Futures, University of Technology Sydney and draws together research expertise from UTS, Western Sydney University and the University of New South Wales and delivered through HUE in collaboration with Arup (a global architecture and consultancy firm with experience in developing sustainable built environments).

The research will help the Greater Cities Commission to plan and implement infrastructure that supports inclusive spaces for LGBTQIA+ individuals, families and communities across the Six Cities Region - Lower Hunter and Greater Newcastle City, Central Coast City, Illawarra-Shoalhaven City, Western

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Parkland Cities, Eastern Harbour City and Central River City.

Project lead and Chair of HUE, Professor Jason Prior explains, “At present, not enough is known about what these communities need and want to ensure they are provided for, and feel safe and included in their city.

“LGBTQIA+ individuals, families and communities are diverse across the six cities - we need to know more about them, their lives, what they need from each city and what would make them feel included. Through inclusive planning, the government can help create places within our cities for LGBTQIA+ communities that provide for their diverse needs.”

The research team will collaborate with government, community representatives and community groups to gather data for this project and to shape its outcomes.

Watch Director, Liveability and Productivity, Na-aim Abdie’s address about the importance of this research.

The program featured a broad spectrum of cancer research endeavours – including basic biomedical, public health, clinical and psychosocial – making the latest information and research available to researchers, clinicians, students and consumers. Research was shared and new collaborations formed through plenary and keynote presentations, oral and poster presentations selected from submitted abstracts, and interactive panel discussions and workshops.

Delegates embraced the opportunity to network in person, many for the first time in more than two years.

Keep an eye out for details on the 2023 conference being held 18-19 September 2023 at the ICC Sydney.

Hear what participants had to say about the 2022 conference https://www.youtube.com/ watch?v=W1GzRJUjTI4&t=1s

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