ISSUE EIGHT 02 A Message From The CEO 03 Philanthropy for Health &
Medical Research Conference
04 New Therapy may assist Voice-Hearers
05 Looking for Natural Born Healers 06 Novartis to License Google “Smart Lens” Technology
08 Why does Brain Cancer Kill more
Children than any other Disease?
10 Letter from Michaelia Cash, Minister Assisting The Prime Minister for Women
11 Counter-Advertising protects Parents from Junk Food Marketing
12 High Value Philanthropy delivers World Class Research
14 Seeing the World Differently 15 A United Front against Blood Disease 16 Imagining Clinical Practice in 2114 18 Grants make all the Difference to Cystic Fibrosis Researcher
19 Women and Heart Disease
– Is it Time for a New Public Health Approach?
20 Ugliness is Represented in the Brain 22 Real-Life Patient Outcomes to Inspire Type 1 Diabetes Researchers
23 New Biosecure Lab up for the Fight 24 HEARing CRC Funding Boost to Hearing Healthcare
26 Practitioner Toolkit for Managing Menopause
27 Bravo: New Concert Initiative Hits the Right Note
28 New Building Aims High 29 Fresh Approach to Community Engagement in Research
RESEARCH AUSTRALIA
AN ALLIANCE FOR DISCOVERIES IN HEALTH
30 Free App to Support the Assessment of Dementia
31 Regional Wellbeing Critical to Australia’s Future
32 Board of Directors 32 Editor’s Corner
SPRING 2014
Spring 2014
A Message from the CEO
MRFF Action Group launch. L – R: Alastair Lucas, Sir Gustav Nossal, Connie Johnson, Peter Scott, Prof Sharon Lewin and Simon McKeon.
More research, more giving It’s been a high profile quarter for both health and medical research and its funding sources. The power of investment in research for the health, hopes and prosperity of Australia is ripe to be show-cased! Last month we convened our national conference on ‘What is the future of philanthropy in health and medical research’, which brought together major research leaders from universities, research institutes, hospitals and health services, with patient advocacy groups, philanthropic foundations and international experts in the field to explore the opportunities for strengthened philanthropy within the sector. There was a buoyant and positive view that more research investment will in fact stimulate and increase giving. We have also just released this year’s polling, which shows that Australians give high priority to health and medical research and want to give. Public opinion continues to place health and medical research as a high priority with nearly half of Australians giving at least annually. The proposed Medical Research Future Fund offers a farsighted and smart investment in better health, and a more
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effective and efficient health system. This quarter we have joined with a number of like-minded organisations, to form the Medical Research Future Fund Action Group, to urge Australians to imagine a healthier future that the new fund could bring. Excitingly, the Medical Research Future Fund also provides the promise of new jobs and new high-skilled manufacturing and export businesses for Australia. Lastly, in this edition of grassROOTS we have included a recent letter I received from Senator, the Honorable Michaelia Cash, Minister Assisting the Prime Minister for Women, on what the Federal Government is currently doing to support women in pursuing careers in research in response to our request for a Senate Inquiry into the low level of women in senior research positions. Thank you to all contributors to this edition, it really highlights both the breadth of our membership, and the wide scope of research and philanthropic activity being undertaken in Australia! I hope you enjoy reading the Spring 2014 issue of grassROOTS. Elizabeth Foley
Research Australia grassROOTS SPRING 2014
SAVE THE DATES Research Australia Events for 2014 • Research Australia Awards Dinner 5 Nov 2014 Time: 7:00pm – 11:00pm Venue: Pier One Sydney Harbour Hotel Registrations Close: 31 Oct 2014 see our website for more details Front cover photo: Research Australia Chair Prof Christine Bennett and Founding Chair of the MRFF Action Group and Research Australia Director at the Action Group Launch in Melbourne on 16 September.
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Spring 2014
Philanthropy for Health & Medical Research Conference Health and medical research leaders gathered in Melbourne on 19th August for Research Australia’s 4th annual Conference on Philanthropy for Health and Medical Research The only Australian conference exclusively dedicated to philanthropy for health and medical research, hot topics of discussion included latest trends in fundraising for the sector and a detailed case study of massmarket fundraising for health and medical research in the UK.
A session on The Patient’s Changing Involvement in Health highlighted the shift in attitudes towards patientcentred healthcare, and featured strong presentations from Rare Voices Australia, Bedside To Bench, Love Your Sister and the Consumers Health Forum of Australia. Research Australia’s CEO, Elizabeth Foley, launched the latest results of our annual survey of community interest in, and support for, health and medical research. Selected highlights from this year’s poll include: 73% of Australians support additional Federal funding being directed to health and medical research; 46% donate at least annually to
Research Australia’s 2014 Opinion Polling document, Australia Speaks!, is also available here
health and medical research; and 78% of those who donate at least annually intend to donate the same amount or more in the next year. 40% of regular donors say they are less likely to donate to health and medical research if the MRFF goes ahead, however 39% say it wouldn’t change their intention and 15% indicate they would be more likely to donate. All participants underlined how critical philanthropic funding is and will continue to be for health and medical research. Philanthropic funding has a vital role to play in funding early-stage and basic research that is promising but risky, research that otherwise might not occur if not for the support of ambitious philanthropists. Philanthropy can also encourage and enable young scientists to pursue and maintain a career in research.
ick Grant, Director of Strategy, N Cancer Research UK
Keynote speaker Nick Grant, Director of Strategy for Cancer Research UK, delivered an in-depth analysis of how Cancer Research UK’s innovative marketing campaigns have captured the imagination of British people to make it a household name in the UK and the world’s largest independent cancer charity. The changing nature of corporate philanthropy was canvassed by three different speakers, each illustrating how corporate support is evolving from passive branding and sponsorship to embrace active partnerships in social change.
Research Australia recently launched a range of free resources to explain how to donate to health and medical research. You can download the entire range of resources for free on our website
onnie Johnson, co-founder of Love C Your Sister
lizabeth Foley, Research Australia E CEO, welcomes delegates to the AbbVie networking cocktail event
Dee Schouten, Merchandising Manager for The Kids’ Cancer Project, offered fascinating advice on how to use merchandise sales as a fundraising tool and described how The Kids’ Cancer Project has increased its income from merchandising more than sevenfold over the past five years to nearly $1.5m a year. Contrasting approaches to fundraising in large, small and local-focused organisations were showcased in two different presentations, and developments in online fundraising were of great interest with sessions on the latest trends in digital marketing and crowdfunding proving extremely popular with delegates.
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Spring 2014
New Therapy may assist Voice-Hearers Cognitive Behavioural Relating Therapy allows people with schizophrenia to develop a healthier interpersonal relationship with the voices they hear Cognitive Behavioural Relating Therapy (CBRT) is a novel treatment developed by Perth-based psychologist Dr Georgie Paulik that aims to improve how people relate to the voices they hear, as well as other people socially, and decrease the amount of distress caused by persistent voice-hearing. The Schizophrenia Research Institute supported researcher and therapist found, through her experience in clinical practice, that many voice hearers perceived the voices to have greater power and assertiveness relative to themselves, which caused distress and made many feel reluctant to develop a relationship with the voices.
CBRT encourages people to question the beliefs they hold about a voice’s power and the way in which they relate to the voices
The success of this new treatment echoes the findings of a paper published in Psychological Medicine by Institutesupported researcher, Sandra Matheson, that brings together current information on schizophrenia research and where to go from here. The meta-review revealed that psychosocial treatments such as CBRT are effective for people with schizophrenia, particularly when used in concert with medication and administered in the early stages of psychosis. Ms Matheson set herself a herculean task in order to contribute to the research field’s understanding of schizophrenia by reading and assessing the latest systematic review papers from various current avenues of research. “Researchers can sometimes get focused on their own particular areas of interest,” she says. “My hope is that this paper will help people to think outside the square. When someone in neuroscience, for instance, reads about the latest findings in epidemiological studies it may help them to cross boundaries and join dots they wouldn’t otherwise have thought about.”
Dr Paulik discovered that teaching people how to relate to these voices with a sense of authority and intimacy was an effective way to overcome this obstacle. “Some people didn’t want to engage with their voices, as there was an element of fear and intimidation in the relationship, so teaching them how to respond assertively helped to improve this relationship,” Dr Paulik explains. “CBRT encourages people to question the beliefs they hold about a voice’s power and the way in which they relate to the voices, which improves the relationship between the voice and voice hearer and, subsequently, can improve how they relate socially to other people too.” The therapy was initially developed to be used in one-on-one sessions but has since grown to include group therapy sessions. Study results investigating the efficacy of CBRT have found that participants expressed positive changes in the way they related to the voices, improved self esteem and reductions in voice-related distress. “Everyone involved has been really positive, there have been no dropouts,” says Dr Paulik.
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Research Australia grassROOTS SPRING 2014
In creating this overview of schizophrenia research, Ms Matheson concluded that while our knowledge of schizophrenia is very substantial, a deep understanding of it remains limited. The good news is that there were several key areas of research that were particularly noteworthy in terms of the strength of evidence and size of the effect. The efficacy of psychosocial treatments was one such area, as were studies exploring the involvement of infection and immunological markers on the development of schizophrenia. Ms Matheson also revealed there is strong evidence for poor cognitive function in schizophrenia, subtle but diverse changes in brain structure and altered sensory processing associated with schizophrenia. The summaries of many of these studies can be found in the Schizophrenia Library www.schizophreniaresearch.org.au/library.
Spring 2014
Looking for Natural Born Healers Griffith University and the family of the late Steve Irwin are working together to find the products that may be the key to curing the world’s most devastating diseases In the search for natural products to form the basis of new medicines, scientists from Griffith University’s world-leading Eskitis Institute for Drug Discovery recently returned from a place described as “Nature’s treasure chest” and a “living laboratory”. Within the 135,570-hectare Steve Irwin Wildlife Reserve at Cape York, researchers Dr Ngoc Pham, Associate Professor Rohan Davis, Dr Ian Hayward and Associate Professor George Mellick spent a week collecting samples they hope may one day contribute to cures for cancer and other infectious and neurodegenerative diseases. The Eskitis team brought home 15 flora samples to add to Nature Bank, a collection of more than 45,000 samples of plants and marine invertebrates from tropical Queensland, Tasmania, China, Malaysia and Papua New Guinea. The new inclusions range from moss and fern found in a melaleuca swamp, to orchids, rare lilies and a tree with a trunk resembling tiger stripes found growing by rare bauxite springs that deliver some of the purest water on the planet into the Wenlock River. Associate Professor Rohan Davis says the Steve Irwin Wildlife Reserve is also home to vulnerable species such as the rainforest plant Calophyllum bicolor. “This species of rainforest plant would be very interesting to look at from a medicinal chemistry perspective,” he says. “Calophyllum is a plant genus known to produce a number of significant bioactive
compounds, some of which have anti-HIV, anti-cancer and anti-microbial activities.” This first of what will become seasonal visits to the Steve Irwin Wildlife Reserve came about thanks to an agreement between the Eskitis Institute and Australia Zoo’s Mrs Terri Irwin AM. In 2007, the Queensland Government handed Terri the pristine parcel of land to manage as a living legacy to her late husband’s conservation work. “There’s been the discovery here of an entirely new ecosystem and new species of plants, so we’re excited to see what Eskitis will find as these visits unfold,” says Terri, who has likened the reserve to “Nature’s treasure chest”. “It’s so beautiful here and, as we’ve learned over the past seven years since we were given this land in Steve’s honour, it’s also extraordinarily unique. This place has 35 different ecosystems, from scrub to relic rainforest, and if Eskitis can find these special things to help treat people, it will be wonderful.” A member of the Eskitis Foundation Board, Terri says she is thrilled the first batch of samples from the reserve will be processed and added to a library already containing more than 200,000 natural product fractions ready for high throughput screening against disease. Eskitis Director Professor Ronald Quinn AM says the Irwins’ legacy will endure for centuries, with just 100 grams of a sample lasting 150 years for research purposes. “Through access to the Steve Irwin Wildlife
Reserve, and some of the plants and plant communities which are unique to this area of northern Australia, we will see a significant expansion and improvement of our Nature Bank collection,” says Professor Quinn. “This will increase our opportunities to discover new drugs to combat cancer, infectious diseases and neurodegenerative diseases. “It’s going to be very exciting over the years to build up the collection because we will be going there during different seasons.” Terri Irwin recently launched the Eskitis Sponsor a Sample campaign in which everyone can contribute to medical research. For $100, people can “adopt” one of the samples stored in Nature Bank. Each sponsor then receives a certificate identifying their particular sample, its species name and where it was collected. They will also be updated on the results of research on that sample and how it might potentially lead to new treatments. Professor Quinn says natural products have formed the basis of many of the drugs discovered in the past 25 years and it’s vital for this work to continue. To Sponsor a Sample go to the Eskitis Institute link: http://www.everydayhero. com.au/event/naturebank rofessor Ronald Quinn, Director of P Griffith University’s Eskitis Institute for Drug Discovery, with Terri Irwin and children Bindi and Robert
Research Australia grassROOTS SPRING 2014
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Spring 2014
Novartis to License Google “Smart Lens” Technology Novartis announced that its eye care division Alcon has entered into an agreement with a division of Google Inc. to in-license its “smart lens” technology for all ocular medical uses. The agreement with Google[x], a team within Google that is devoted to finding new solutions to big global problems, provides Alcon with the opportunity to develop and commercialise Google’s “smart lens” technology with the potential to transform eye care and further enhance Alcon’s pipeline and global leadership in contact lenses and intraocular lenses. The transaction remains subject to antitrust approvals The agreement between Google and Alcon represents an important step for Novartis, across all of its divisions, to leverage technology to manage human diseases and conditions. Google’s key advances in the miniaturisation of electronics complement Novartis’s deep pharmaceuticals and medical device expertise. Novartis aims to enhance the ways in which diseases are mapped within the body and ultimately prevented.
of biology to meet unmet medical needs,” said Novartis CEO Joseph Jimenez. “This is a key step for us to go beyond the confines of traditional disease management, starting with the eye.”
“We are looking forward to working with Google to bring together their advanced technology and our extensive knowledge
Under the agreement, Google[x] and Alcon will collaborate to develop a “smart lens” that has the potential to address ocular
“Our dream is to use the latest technology in the miniaturisation of electronics to help improve the quality of life for millions of people,” said Sergey Brin, Co-Founder, Google. “We are very excited to work with Novartis to make this dream come true.”
conditions. The smart lens technology involves non-invasive sensors, microchips and other miniaturised electronics which are embedded within contact lenses. Novartis’ interest in this technology is currently focused in two areas: • Helping diabetic patients manage their disease by providing a continuous, minimally invasive measurement of the body’s glucose levels via a “smart contact lens” which is designed to measure tear fluid in the eye and connects wirelessly with a mobile device; • For people living with presbyopia who can no longer read without glasses, the “smart lens” has the potential to provide accommodative vision correction to help restore the eye’s natural autofocus on near objects in the form of an accommodative contact lens or intraocular lens as part of the refractive cataract treatment. The agreement marries Google’s expertise in miniaturised electronics, low power chip design and microfabrication with
Our dream is to use the latest technology in the miniaturisation of electronics to help improve the quality of life for millions of people
Alcon’s expertise in physiology and visual performance of the eye, clinical development and evaluation, as well as commercialisation of contact and intraocular lenses. Through the collaboration, Alcon seeks to accelerate product innovation based on Google’s “smart lens” technology. “Alcon and Google have a deep and common passion for innovation,” said Jeff George, Division Head of Alcon. “By combining Alcon’s leadership in eye care and expertise in contact lenses and intraocular lenses with Google’s innovative “smart lens” technology and groundbreaking speed in research, we aim to unlock a new frontier to jointly address the unmet medical needs of millions of eye care patients around the world.”
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Research Australia grassROOTS SPRING 2014
DON’T LET THEM FIGHT IT ALONE.
Brain cancer kills more children than any other disease.
Donate now at curebraincancer.org.au or call 1300 362 965
Spring 2014
Why does Brain Cancer Kill more Children than any other Disease? Brain cancer kills more children in Australia than any other disease. The question that springs to mind after processing this appalling statistic, is why? The simple answer is threefold: • We don’t know what causes brain cancer • Current treatments are not good enough • We don’t have enough money for research to change this But in addition, there are specific issues to deal with in paediatric cases. Let’s start with the cause: the fact is we don’t know what causes children – or adults – to develop brain cancer. There are various theories, from genetic mutations to epigenetic factors to viral infections, and research is continually making new discoveries. But the more we discover about brain cancer, the more we realise there is still so much more to find out. Take medulloblastoma, for example, which is a common paediatric brain tumour. Because of research, what was previously thought of as one type of brain cancer is now known to have at least four genetic sub-types, which all require different treatments.
In fact, the internationally recognised expert in childhood brain cancer, Dr Nick Gottardo, describes current treatments as “woefully ineffective”. Some paediatric brain tumours, such as DIPG (Diffuse Intrinsic Pontine Glioma) are brain-stem based and therefore usually inoperable; with the limited treatments available, without surgery, the prognosis is very bleak. Brain cancer is different in children than in adults. There are forms which more commonly affect kids, such as medulloblastoma. But even when typically adult tumours such as high grade gliomas do occur in children, they present very differently on a molecular level.
Survival rates for brain cancer have hardly changed in 30 years, with only 2 in 10 people surviving for 5 years.
As well as genetic mutations there are epigenetic factors to consider. A recent Australian study found that fathers working in jobs where they are regularly exposed to benzene in the year before their child is conceived are more than twice as likely to have that child develop a brain tumour. The researchers stressed that it’s still too early to say whether solvent exposure causes brain tumours. But it is an example of research pointing to epigenetic factors, and specifically the vulnerability of children to brain cancer even before they are born. What we suspect at this stage is that it is likely to be a combination of genetic and environmental factors that lead to increased risk. The next thing to consider is how effective treatments for children with brain cancer are. The answer: not effective enough.
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Our question is not ‘why?’ but ‘why not?’ and – more importantly – ‘how can we?’ Perhaps this is the more pertinent question here; not why brain cancer kills these children, but how are we going to change this?
Plus, children’s brains are still developing so the standard treatments for brain cancer, which include surgery, radiotherapy and chemotherapy, can result in more substantial and permanent side effects than they would for an adult. Hence a major consideration when developing new treatments for paediatric brain cancer is how to provide quality of life as well as increasing survival. Research funded by The Brain Tumour Charity in the UK has been investigating ways to improve quality of life. The team at the University of Southampton collected data on children surviving a brain tumour, including looking at the use of an alternative radiotherapy technique called hyperfractionated radiotherapy, which involves dividing the total dose of radiation into a larger number of smaller doses, to decrease the effect. It had less of an
impact on children’s memory, planning and organisational skills than conventional radiotherapy. The next problem is not insignificant, but nor is it insurmountable: funding. Survival rates for brain cancer have hardly changed in 30 years, with only 2 in 10 people surviving for 5 years. The reason for this – and by association, the reason why brain cancer kills more children than any other disease in Australia – is largely that not enough money has been invested in research. Cure Brain Cancer is doing things differently to improve outcomes for patients. Our question is not ‘why?’ but ‘why not?’ and – more importantly – ‘how can we?’ Perhaps this is the more pertinent question here; not why brain cancer kills these children, but how are we going to change this?
Research into paediatric brain tumours has come a long way already. There is a long way to go, but that’s not because nothing has been done. However, the number of clinical trials for children and access to these trials is limited; with a disease of such low incidence, the clinical research has historically tended to follow what has been done in adult trials, but this is changing. Professor Stewart Kellie, a paediatric neuro-oncologist & oncologist at The Children’s Hospital at Westmead, says there have already been huge advances, but says global collaboration is key to success when it comes to paediatric clinical trials and research. By pooling resources, answers can be arrived at more quickly. Back in April, four international studies made breakthroughs simultaneously in DIPG. All of them focused on mutations in the ACVR1 gene. One of those studies, led by scientists at the Institute of Cancer Research in London, found that ACRV1 mutations in DIPG are identical to ones found in people with the congenital childhood disorder fibrodysplasia ossificans progressiva (FOP). What this means is that they can investigate whether drugs that have already been developed for FOP could be repurposed to treat DIPG. This discovery was made possible in part by international collaboration. Access to children’s tissue samples to facilitate research is also vital, not just because it can provide insights into that particular patient’s tumour, but because developing tissue banks enables researchers to compare and cross reference data from across brain tumours and other cancers and diseases. Just last week, a study using data from The Cancer Genome Atlas suggested that 1 in 10 cancers could be diagnosed more accurately based on genetic makeup, rather than where they occur in the body. They say it ultimately provides the biologic foundation for a new era of personalised treatment. Many questions remain regarding childhood brain tumours. We don’t know why they occur. But crucially we need to answer the question ‘how?’ How do we treat this disease? How do we improve survival, as investment in research has done for other diseases such as leukaemia and breast cancer? Research will answer these big questions. All that’s required is funding.
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Spring 2014
Letter from Michaelia Cash, Minister Assisting The Prime Minister for Women to Science and Technology Australia to develop a Women in Science Toolkit that will provide a user-friendly, practical guide on how to improve the participation of women in the scientific workforce.
Thank you for your letter dated 5 March 2014 regarding your concern for the limited participation of female researchers in the health and medical research sector and scientific research more generally I agree with you that increasing the participation of female scientific researchers is important, and would have significant social and economic benefits for Australia. The Australian Government is strongly committed to ensuring women have rewarding careers in science and in nontraditional fields of work generally, including in the health and medical research sector. The Health of Australian Science report released by the Chief Scientist of Australia, Professor Ian Chubb AC, in May 2012 identified gender imbalances in some science, mathematics and engineering areas. In his address to the National Press Cub at the release, Professor Chubb noted the need to encourage all Australians to reach their potential – and ensure that the gender imbalances in some sciences, mathematics and engineering continue to be identified and corrective action is taken. As such, the Australian Government is supporting Science and Technology Australia in its efforts to reverse the underrepresentation of women in science. The Government has provided funding
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The National Health and Medical Council (NHMRC) has implemented a number of initiatives to address gender equality in medical research. In particular, the Women in Health Science Working Committee aims to gain a better understanding of the issues that face women researchers in health and medical research in terms of career progression and retention to enable the NHMRC to identify mechanisms that could be implemented to overcome these issues. The NHMRC also established the Institutional Gender Equity Policies initiative in response to the need to promote gender equity and diversity, and concerns expressed by early to mid-career researchers about balancing a research career with family responsibilities. The NHMRC sought to develop a partnership with institutions to publicise examples of best practice in gender equity policies. All NHMRC Administering Institutions were invited to identify activities and approaches in place to support gender equity within their institutions in 2013, with the exercise aiming to define, highlight and strengthen such practices. In the broader scientific research industry, the Australian Research Council (ARC) is committed to ensuring that all researchers, including women, have the opportunity to participate fully in the funding schemes of the National Competitive Grants Program (NCGP). To help mitigate the effect of career breaks for family and other reasons on research careers, for example, the ARC introduced a new selection criterion to its Funding Rules to replace the concept of ‘track record’. Research Opportunity and Performance Evidence enables assessors to take into account any career interruptions, including those of childbirth and caring responsibilities, when assessing proposals. In 2012, the Discovery Early Career Researcher Award scheme was introduced to support and advance promising early career researchers and promote enhanced opportunities for diverse career pathways among early career researchers. The Discovery Early Career Researcher Award includes provision for researchers who have periods of significant career interruption, including childbirth and caring responsibilities. In the most recent selection round, the success rates of
Research Australia grassROOTS SPRING 2014
female applicants was on par with male applicants. For funding commencing in 2013, up to 17 Australian Laureate Fellowships may be awarded, with up to two of these fellowships allocated to exceptional female researchers who will also undertake an ambassadorial role to promote women in research. You may also be aware that the United Nations Commission on the Status of Women (CSW58) reviewed progress regarding the 55th Session priority theme – Access and participation of women and girls to education, training, science and technology, including for the promotion of women’s equal access to full employment and decent work. During my attendance of CSW58 in March 2014, I held discussions with other dignitaries on how we can best empower women and girls, and remove barriers to their full participation in education, science and maths.
The National Health and Medical Council (NHMRC) has implemented a number of initiatives to address gender equality in medical research.
Given the range of initiatives currently being implemented to improve women’s participation in health and medical research, and scientific research more broadly, the Australian Government does not currently intend to propose an inquiry by the Senate Education, Employment and Workplace Relations Committee into this area. We will continue to support the health and medical research industry, as well as the broader scientific research industry, to enact positive change within workplace to increase women’s participation. Yours sincerely Michaelia Cash Minister Assisting the Prime Minister for Women 9 May 2014
Spring 2014
Counter-Advertising protects Parents from Junk Food Marketing Research supports efforts to protect children from misleading food promotions New research reveals that counteradvertising could be part of the solution to combating unhealthy food choices in the children’s snack food aisle, but children can’t be expected to accurately interpret the counter-advertisement on their own.
The research found counter-advertising to be a successful tool in contesting misleading front-of-pack promotions for parents, with those who viewed it having a 40 per cent lower likelihood of choosing the unhealthy product as the healthiest of those presented. Counter-advertising also had a small, but positive influence on children who understood them. However, the tactic was ineffective with children who misinterpreted the counter-ads.
Two research studies, undertaken by Cancer Council Victoria and supported by the Bupa Health Foundation, tested childrens’ and parents’ appraisals of unhealthy foods featuring front-of-pack promotions and the impact of counteradvertising. Counter-advertising is a marketing tool which provides an opposing message to an advertisement or promotion.
“We’re at a critical crossroads in terms of our health, and a higher level of health literacy in parents will be a key factor in decreasing obesity and chronic disease in children.
Senior Research Fellow at the Centre for Behavioral Research in Cancer at Cancer Council Victoria, Dr Helen Dixon said the findings showed some children were at risk of misinterpreting counter-advertising, which should be targeted at parents. “The goal of the counter-ads is to reduce people’s susceptibility to persuasion by commercial marketing,” Dr Dixon said. “These counter-ads aim to expose misleading food promotions that position unhealthy products in a healthier way, for example with unclear nutrient content claims which highlight positive product ingredients but not the hidden ‘nasties’, or through an on-pack endorsement by a prominent sports star.
Dr Dixon cautioned that counter-advertising is a difficult tool to employ and is not something we have seen a lot of in Australia. However, successful examples do exist internationally. In France, all advertisements for processed, sweetened or salted food and drinks are required to carry cautions urging consumers to stop unhealthy snacking, exercise more and eat more fruits and vegetables. The Bupa Health Foundation’s Chief Medical Officer, Dr Paul Bates, said counter-advertising could encourage parents of young children to make healthier food choices.
“Most Australian parents are trying to do the right thing by their children and feed them healthy, nutritious foods, but misleading advertising can unknowingly get in the way of this,” Dr Bates said. “We’re at a critical crossroads in terms of our health, and a higher level of health literacy in parents will be a key factor in decreasing obesity and chronic disease in children. “We can’t expect children to be savvy to marketing tools, so while counteradvertising is a positive tool in encouraging parents to critically assess a product, these studies also confirm the need to avoid exposing children to incorrect or misleading nutritional messages in the first place,” Dr Bates said. Dr Dixon said the findings regarding the impact on children of counter advertising were particularly interesting. “Our previous studies have shown on-pack promotions such as celebrity endorsements and nutrient content claims can sway parents’ and childrens’ food preferences towards unhealthy and less nutritious options. In this latest research, the counter-advertisements empowered parents to critically evaluate food products bearing these types of promotions. “However, while counter-advertisements could help children who understand them to be more skeptical of misleading on-pack promotions, this approach could have unintended consequences for those children who misinterpret them. “The most effective solution for combating the unhealthy effects of food advertising on children may be to regulate against certain forms of food promotion. However, if this isn’t possible, these studies indicate counter-advertising specifically targeted to parents could assist,” Dr Dixon said. Findings were published in the Social Science & Medicine, 30 June 2014, and Journal of Nutrition Education and Behaviour, 14 July 2014.
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Spring 2014
High Value Philanthropy delivers World Class Research Cancer Council Queensland’s Viertel Cancer Research Centre demonstrates the impact of high-value philanthropy and how it can provide tangible benefits for the community when applied in the field of research Cancer Council Queensland’s Viertel Cancer Research Centre (CRC) is a multidisciplinary research centre committed to community-based cancer control. Established in 2002, the CRC’s work was significantly accelerated in 2004 following a major long-term philanthropic commitment from the Sylvia and Charles Viertel Foundation. The Foundation’s gift, a legacy of the late Charles Viertel, has played a crucial role in enabling the application of epidemiological and psycho-oncological research into practice at the community level. Over the past 10 years the research programs of the CRC have focused on providing tangible benefits for the community and on producing results that will translate into better clinical and public health practices and policies that will improve the lives of cancer patients, their families and the broader community. The CRC comprises three core research streams including: Epidemiology; PsychoOncology; and Community Engagement.
With thanks to the Foundation’s generosity, the CRC has uniquely positioned itself to drive the translation of research into practice.
influencing inequalities in breast, colorectal and prostate cancer. One of the difficulties in attempting to unravel the reasons for inequalities in cancer outcomes is ready access to accurate cancer stage and treatment information. Recognising the importance of including data on cancer stage in our
With thanks to the Foundation’s generosity, the CRC has uniquely positioned itself to drive the translation of research into practice. The CRC’s work has been routinely published nationally and internationally, informing the development of services to assist thousands of Queenslanders each year, including the Cancer Council Helpline, CCQ’s specialised Cancer Counselling Service, and a range of support programs and evidence-based psychosocial care interventions to improve quality of life and survival outcomes.
Over the course of the past ten years, the CRC’s work has been impressive In 2005 the CRC published the first report highlighting the geographical inequalities in cancer incidence and survival across Queensland, revealing that people diagnosed with cancer who live in more rural and remote areas and areas of low socioeconomic status have significantly lower five-year survival rates than average. The Atlas provided a foundation for ongoing detailed investigations, including current projects to understand the factors
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research, the CRC for the first time is extracting pathological stage information for selected cancers to investigate the impact of differences in stage at diagnosis. Outcomes from the ongoing research program have played and will continue to play a major role in the development of public policy reforms, informing the work of government, health policy makers, and non-government organisations. Researchers within the CRC are also responsible for the management and maintenance of The Australian Paediatric Cancer Registry (APCR). The APCR is one of only a few national childhood cancer registries in the world and has produced two major reports detailing the incidence and survival associated with childhood cancer in Australia. Key priorities of the APCR are continuing collaborative research to improve understanding of the causes of childhood cancer, reducing the incidence of childhood cancer, and improving survival rates.
Reducing the impact of skin cancer has also been one of the key research priorities for the CRC over the past decade. The Centre’s research found that melanoma incidence rates are falling among men and women under the age of 40; however incidence continues to rise among older people (who carry most of the burden of skin cancer in the community), highlighting the importance of early detection if we are to reduce melanoma mortality rates. The CRC’s scientists were the first to demonstrate that whole-body clinical skin examinations improve the diagnosis of early melanomas and reduce the incidence of advanced melanomas. Further, the CRC’s research has found that once diagnosed with a melanoma, people are more than five times more likely to develop a second primary melanoma than the general population. These findings have been used to inform the development of clinical practice guidelines for the diagnosis and management of melanoma in Australia and New Zealand.
The Centre has also led major investigations into prostate cancer, the most common cancer diagnosed in Australian men. Recognising that prostate cancer can be a challenging diagnosis for men and their partners, and the lack of information on how men are diagnosed and treated for prostate cancer, the CRC has developed and is conducting a large volume of research to reduce the burden of this disease. The CRC has conducted trials of several interventions for men with prostate cancer to reduce the impact of this disease on their lives, including exercise interventions and group peer-support programs. Many men with advanced prostate cancer experience high levels of psychological distress. To address this, the CRC is currently conducting a trial
to assess the effectiveness of a telephonedelivered mindfulness intervention for patients. And in collaboration with Prostate Cancer Foundation of Australia and other international organisations, publication of the monograph ‘ProsCare: A Psychological Care Model for Men with Prostate Cancer’ has helped to enhance the psychological support available to men with prostate cancer. In 2011 the CRC and Griffith University received a grant to investigate the role that stigma plays in lung cancer outcomes. This work included a literature review examining the evidence on the influence of stigma on patterns of care; patients’ psychosocial and quality of life outcomes; and its relationship to public health programs. Findings from this research have guided ongoing work to reduce the impact of stigma-related distress through psychological interventions. The CRC has also conducted a successful trial of telephone-delivered psychologist and nurse-led interventions to reduce distress for cancer patients and carers and is now adapting this intervention to a webbased environment. This trial connects researchers, service providers and health service leaders in both the community and the acute health setting to develop and test a new and innovative health service for cancer patients. The trial has the potential to reduce cancer-related psychological morbidity, at minimal cost and with high accessibility. As the Australian population ages, the burden of cancer will continue to increase, matched by greater demand for communitybased cancer control and new technologydriven opportunities to meet the needs of those affected by the disease. With thanks to the Sylvia and Charles Viertel Foundation, Cancer Council Queensland’s Viertel Cancer Research Centre is ready to grasp these opportunities to help eliminate cancer as a life-threatening disease for future generations. taff of the CCQ Cancer Research S Centre’s epidemiology team
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Seeing the World Differently Miniscule cancer cells magnified 100 times, imaged in 3D, and rotated to view from different angles This is the brave new world of imaging at QIMR Berghofer Medical Research Institute in Brisbane, thanks to a funding injection of $2.6 million from the Australia Cancer Research Foundation.
“Imaging equipment of this sensitivity has transformed our ability to understand cancer because it allows us to see biological processes at each step, from basic discovery through to clinical application.
QIMR Berghofer has taken delivery of a laser scanning confocal microscope – the key first piece of equipment in the Institute’s new ACRF Centre for Comprehensive Biomedical Imaging.
“This level of detail is essential for understanding cancer and developing new treatments.”
Similar resolution is possible on other microscopes, but the confocal offers much clearer images. It has been described as the difference between watching television on an old style cathode ray set versus a state-of-the-art plasma screen. QIMR Berghofer Director, Professor Frank Gannon, said the Centre would further empower world class cancer researchers. “The ACRF Centre for Comprehensive Biomedical Imaging, combined with QIMR Berghofer’s renowned cancer researchers, will be the genesis for new scientific discovery which will enrich cancer based discovery worldwide,” Professor Gannon said.
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The laser scanning confocal microscope provides high resolution images of cancer at the molecular level. To ensure the best images, QIMR Berghofer has installed an anti-vibration table which weighs almost one tonne and is suspended on legs controlled by pressurised air. The confocal is one of three new pieces of imaging equipment funded by the $2.6 million dollar cancer research grant from the ACRF. ACRF Chairman, Tom Dery, said: “This new imaging equipment will pave the way towards a greater understanding of all types of cancer, ultimately speeding up new treatments and cures for patients and their families.”
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In coming months, QIMR Berghofer will also take delivery of a multiphoton microscope to image cancer cells and immune cells in vivo, and a spinning disc confocal microscope to investigate signalling pathways in cancer, thanks to the support of the ACRF. In addition to this ACRF-funded equipment, QIMR Berghofer has invested in a new slide scanner which can digitise up to 400 pathology slides automatically. The digital images can then be viewed instantly by researchers across the globe. Plus a new spectral imaging camera which captures images of cancer beyond the scope of conventional microscopy.
esearchers at QIMR Berghofer being R trained on the new microscope
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A United Front against Blood Disease A strong competitive advantage for researchers at St Vincent’s Institute of Medical Research (SVI) in Melbourne is the close connection with Melbourne’s St Vincent’s Hospital, which helps to keep scientists focused on research into the real world problems faced by patients One of the conclusions emanating from The McKeon Strategic Review of Health and Medical Research was that medical research needs to be more closely entwined with the healthcare system. A success story of researcher-clinician interaction at the Institute comes from the area of blood disease research, where researchers A/Prof Louise Purton, Dr Carl Walkley and their collaborator, Dr Meg Wall from St Vincent’s Hospital, have made recent insights into blood diseases. Louise and Carl describe Dr Meg Wall’s expertise as invaluable to their research. Meg originally trained as a haematologist (specialist in blood disorders) but now works as a cancer cytogeneticist: an expert at detecting genetic aberrations in cancer samples.
why people get MDS and what we can do to fix it,” says Meg. “We don’t have a good understanding of the initial changes that lead to the development of MDS, and the studies going on at SVI are allowing us to look at ground zero.” “We are really bringing together the two ends of the spectrum,” says Louise. “At SVI, we can manipulate genes in model systems to allow us to explore human disease, and Meg is expert in interpreting the changes we see in the genome, in the context of what happens in humans.”
The team is grateful for the support they receive from The Leukaemia Foundation for their work: Carl is the Leukaemia Foundation’s Phillip Desbrow Senior Research Fellow and Louise and Meg both have funding from the Foundation to pursue their work. With this convergence of research and clinical expertise, combined with strong support from philanthropy, the team is poised to make some major discoveries to aid people diagnosed with MDS.
Meg is one of only two doctors in Victoria trained in this specialist area. “Our laboratory at St Vincent’s Hospital provides a state-wide service for cancer cytogenetics analysis. This means that we receive samples from patients throughout Victoria to aid diagnosis and assess remission or relapse in response to treatment,” she says. Meg is also passionate about research. She did her PhD at the Peter MacCallum Cancer Centre, where she got to know Louise and then-PhD student Carl. Meg’s major research interest since finishing her PhD has been in the group of diseases collectively known as myelodysplastic syndromes (MDS). MDS is a malignant blood condition found most commonly in people over the age of 65. Meg says that the incidence of MDS is rising, partly because of increased lifespans and partly because some cancer survivors develop MDS as a result of genetic changes caused by chemotherapy. In Meg’s clinical role she analyses samples from patients with MDS to help with diagnosis and treatment decisions. MDS is also a major focus for Louise and Carl, now co-heads of SVI’s Stem Cell Regulation Unit. The trio is undertaking work together to find new ways to treat the disease. “Louise and Carl do clever things with in vivo models that help us understand
esearchers Dr Meaghan Wall (left), A/Prof Louise Purton (centre) and Dr Carl Walkley in the R lab at St Vincent’s Institute of Medical Research.
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Imagining Clinical Practice in 2114 Excerpt from speech given by Prof Christine Bennett AO, Chair of Research Australia at the recent 100 year anniversary of the Medical Journal of Australia celebration Tonight I have the fun job of getting out the crystal ball to look at the future of clinical practice with some hopefully “informed predictions”, a touch of imagination, and frankly a bit of wishful thinking. Where will medicine and health care be in 2114? What will the health challenges of this century be? How will evolving knowledge and technology developments impact clinical practice and even reshape our society. I propose 6 main domains of prediction that may impact on clinical medicine of the future. 1. Information and the e-world – health informatics, mobile health, e-health as a health care setting, and potential health threats 2. Genomics and epigenetics – personalised (or now targeted) medicine and prevention and health risk management from birth
and taking an active role in their own health and health decisions and in research. The dangers are in the poor use of information and letting the technology drive our lives. My predictions are that health informatics and data mining will grow and evolve as a science and show us things we don’t yet know that we don’t know, and find things that we didn’t think possible. In 2114 people will have their own health information at their fingertips. There will be proactive prompts and health reminders through devices not yet imagined. Perhaps it will be like tapping the Star Trek-like communicator and simply asking a question?
Personalised (or now targeted) medicine and prevention will reshape clinical practice toward a greater focus on health risk management from birth and a greater role for the person in understanding and acting to reduce their personal risks.
3. Human brain and mind – the next big research frontier 4. Technology and devices – including bionics, nanotechnology, stem cells 5. Environment and health – planetary health and human health, climate change, urban health 6. Changing societal values and priorities and the social determinants of health
Information and the e-world To me this is an area of enormous potential as yet hardly tapped. But it is a double edged sword with fabulous opportunity but also potential threats to physical, social and mental health. Alvin Toffler, futurist and author of Future Shock (1970), coined the term “information overload”. There is no doubt that the information environment of 2014 is overwhelming but the big opportunities are in harnessing it effectively – in clinical decision making, in people understanding
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Patients will have greater expectations and want a more active role in their health decisions and options. Mobile health will move to a new level with on the spot advice available 24/7 and patient data streamed to the clinician real-time. Clinicians will be super users of medical information sources and ‘integrators’ applying clinical reasoning and judgement in consultation with the patient about their treatment options and choices. Multiple health professions – new and different – with varying specialty expertise will be involved in care and will be brought together by a new species of doctor – an integration specialist. Technology will provide the navigation and care coordination support and online and telephonic advice will accessible to all. Patients and doctors will communicate via face and voice online. Telehealth will be the norm as a setting of care. However I also believe we will be seeing new health issues as a result of so much
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screen time and as a result of this new environment where we will spend so much of our lives. Cyber bullying, social isolation and loss of social skills, inactivity and physical impacts on musculoskeletal health and vision will be observed and described as new conditions. In particular these phenomena are and will impact on the development and well being of children and young people. An expectation of and need for constant stimulation, fast pace of living, excessive interaction with screens rather than people will in my view lead to some children having less resilience and social skills. If children don’t get bored and have to use their imagination will this impact on their emotional and mental wellbeing as well as creativity? Separation from technology will lead to anxiety and depression. Cyber security will be an ongoing challenge but technical fixes will progressively be developed. Perhaps bridges between IT and biological functions will be developed – a chip in the brain to link to information systems!
Genomics and epigenetics Personalised (or now targeted) medicine and prevention will reshape clinical practice toward a greater focus on health risk management from birth and a greater role for the person in understanding and acting to reduce their personal risks. I predict that in 2114 all newborn babies – possibly in utero – will routinely, if consent is given, have a whole genome sequence performed with genetic risks and predispositions presented to the person’s life-long health record. Clinical practice will consider an individual’s genome in both diagnosis and treatment decisions as part of normal prescribing, leading to better patient outcomes, reduced adverse drug reactions and more targeted use of resources. While this is already becoming a feature of cancer care in 2014 it will be commonplace in 2114 across most health issues. The big hope I hold for epigenetics is in tackling obesity. Behavioural, environmental and biological factors will all be shown to be involved in the pathogenesis and will be addressed by a package of interventions so that by 2114, two generations hence, healthy weight for the majority of the population will again be achieved.
Human brain and mind With more that we don’t know than we do know, it is to me the next big research frontier. I am aiming high on this one – so by 2114 I am predicting that we will have mapped the human brain structurally, genomically and elecrophysiologically. We will understand the causes and have developed prevention and cures for schizophrenia, dementia, autism, MS and Parkinson Disease.
Technology and devices The bionic ear will be followed by the bionic eye and a bionic spinal implant. Stem cell therapies for organ failure and renewal.
Ultrasound and scanning technologies will be real time, high resolution and mobile for use at the point of care including at home and in the community. There may be a mobile diagnostic phone app! Or perhaps an implanted brain chip that interfaces wirelessly with technology.
Environment and health By 2114 we will recognise that the health of our planet has a direct impact on human health. The medical profession – our children’s children – will be leading the charge in terms of science and championing sustainability. Health impact assessment will be a compulsory part of all urban planning. Global travel will include high speed, short trip space travel and bio-security will have
new challenges with spread of infectious diseases. We may even look to exploring space as a frontier to find or create another habitable environment for the human species! Now I am sounding like a Trekky.
Changing societal values and priorities and the social determinants of health A new era of ethical dilemmas and community conversation is inevitable through the second half of the 21 century. Technology developments such as genomics and bionics, personal health risk information and personal responsibility for preventable diseases may see debate about penalties and incentives in access and personal cost of care. With people living longer a debate about end of life care and resource priorities will add to ethical dilemmas. The community will be more conscious of the challenges of health resource allocation and social inequity – how to get best value for the health dollar will be viewed as an ethical consideration as will the priority for use of public funding in health. Clinicians will continue to be advocates for their patients but will fully inform them to support them in making health care decisions. Importantly as mentors and educators of our junior colleagues and future generations of the medical profession, no matter what technology and new knowledge offers, I hope we never lose touch with the importance of humanity in health care – of engaging with patients with respect and compassion, recognising that it is a privilege to be part of some of the saddest and most joyful experiences in human life. We should not lose sight of the value of a patient moment of explanation, a genuine smile and a caring touch. Clinical practice carries a therapeutic dimension simply based on being ‘human’ and I believe it always will.
rof Christine Bennett AO, Chair P Research Australia; Dean, School of Medicine, University of Notre Dame Australia
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Grants make all the Difference to Cystic Fibrosis Researcher Willow, as she will proudly tell you, is nearly 5. But unlike other kids her age, Willow spends a lot of her time with her Mum and Dad undergoing a strict regimen of medication – because she was born with cystic fibrosis (CF) Willow is like a lot of other kids with CF in that she faces a life of drugs and treatments, and many of those can be scary and invasive for small children. But Dr Kathryn Ramsey, a respiratory physiologist at the Telethon Kids Institute is undertaking some research that could mean that children like Willow will have access to easier and less invasive methods of monitoring their condition. In 2012 Dr Kathryn Ramsey was the recipient of the Lung Institute of WA’s Glenn Brown Memorial Grant for Cystic Fibrosis and Bronchiectasis Research. This grant is entirely funded by donated gifts, and Kathryn has recently submitted her progress report for the past 12 months of research. Over the past year, Dr Ramsey has been researching the associations between the
lung clearance index (LCI) and structural lung damage as well as respiratory infection and inflammation in preschool aged children with cystic fibrosis. A new multiple breath washout (MBW) lung function test was conducted amongst 85 preschool students. This test required participants to keep a leak-free seal on the mouthpiece for 2-3 minutes and assessed how efficient the lungs were functioning. The participants breathe in 100% oxygen, and the LCI is calculated by how long it takes for the oxygen to replace all the nitrogen in the lungs.
The success of this new testing methodology would mean that children like Willow would not have to be subjected to invasive testing, which exposes children to radiation via a scan.
“Excess mucous or inflammation in the airways can lead to areas of the lungs being closed off, which can mean it takes longer to release the nitrogen gas and thus
results in an abnormally high LCI” said Dr Ramsey. The results have shown a strong correlation between having an abnormal LCI (identified by the MBW) and the presence of bronchiectasis. This means that it is possible to assess if lung damage is present from this simple test. Dr Ramsey says, “Our finding that abnormal LCI correlates to the presence of bronchiectasis is the first step in understanding how this lung function test can be useful in the monitoring of cystic fibrosis lung disease in this age group”. The success of this new testing methodology would mean that children like Willow would not have to be subjected to invasive testing, which exposes children to radiation via a scan. Dr Ramsey said “it is essential that we develop non-invasive methods to assess lung disease that can be applied regularly in the clinical setting.” The next stage of this research project is to identify how the LCI changes over time in children who are clinically stable and those who are not as well, and how it changes as the child grows and with the progression of bronchiectasis. The pilot data collected during this research has enabled the Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF), based at the Telethon Kids Institute to successfully obtain a USCFF grant (United States CF Foundation Therapeutics Grant) for a further four year study. The study, entitled ‘Identifying the clinical utility of MBW in early CF lung disease’ will allow the collection of longitudinal MBW data in preschool children with CF and healthy controls in Perth, Melbourne and Indianapolis (USA). Studies of this kind provide fundamental groundwork required to help young children living with cystic fibrosis live comfortable, happy lives and we wish Dr Ramsey and her team great success. year old 5 Willow.
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Women and Heart Disease – Is it Time for a New Public Health Approach?
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Heart disease is the single biggest killer of women globally, and is the second most prevalent cause of death in Australian women A recent study by researchers at The University of Queensland has focused specifically on the factors contributing to heart disease in women, uncovering some interesting results. Leading researcher, Professor Wendy Brown of the Centre for Research on Exercise, Physical Activity and Health at UQ’s School of Human Movement Studies said the research found a lack of exercise is the biggest risk factor for heart disease in women aged 30 – greater than smoking, obesity and high blood pressure.
“Smoking has the greatest impact for women below the age of 30,” said Professor Brown, who undertook the research with UQ colleague Dr Toby Pavey and Professor Adrian Bauman from the University of Sydney. “However, as women get older and more give up smoking, physical inactivity became the dominant influence on heart problems across the study population,” Professor Brown said. The research was based on evidence gathered in the Australian Longitudinal Study on Women’s Health, which has been
tracking the health of more than 32,000 women for 18 years. A statistical measure called Population Attributable Risk was used to calculate the proportion of heart disease risk attributed to each risk factor at different ages. Professor Brown said national programs for the promotion and maintenance of physical activity – across the adult lifespan, but especially in young adulthood – deserved a much higher public health priority for women than they have now. “More needs to be done to promote regular exercise in women and to keep women active, now and into the future. “If all over-30s followed recommended exercise guidelines — 150-300 minutes of moderately intense physical activity per week — the lives of more than 2600 middle-aged and older women could be saved each year in Australia alone,” she said.
“More needs to be done to promote regular exercise in women and to keep women active, now and into the future.” This study is among the first in populations of developed countries to look specifically at the impact of inactivity on adult women of all ages. “Continuing efforts to encourage people to stop smoking are warranted, but much more emphasis should be placed on physical inactivity,” she said. The study was conducted by Professor Brown and Dr Pavey from The University of Queensland, and Professor Adrian Bauman from The University of Sydney. Professor Brown is the lead author of the evidence review for the new Australian physical activity guidelines released in February. rofessor Wendy Brown, The P University of Queensland’s School of Human Movement Studies.
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Spring 2014
Ugliness is Represented in the Brain When most of us consider body image disorders or the mental illness of body image, the first thing that usually comes to mind is anorexia Yet, the lesser known body dysmorphic disorder (BDD) is considerably more prevalent than anorexia, and also causes higher levels of psychological impairment. The main symptom of BDD is excessive fear of looking ugly or disfigured. Central to the diagnosis is the fact that the sufferer actually looks normal. The most common belief is that a particular feature of their face usually nose or mouth is unbearably ugly or
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disfigured, although some individuals can believe it’s a whole side of their body that is ugly. Equal numbers of men and women can suffer from BDD. Many individuals with BDD seek unnecessary cosmetic surgery and skin treatments in an attempt to alleviate their symptoms. Those who do so are usually extremely unhappy with the outcomes of such procedures. Only after
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igure 1. Statistically significant fractional F anisotropy reductions in body dysmorphic disorder sample compared with controls. Numbers in red represent distance (mm) from the anterior commissure.
many years of suffering do individuals seek assistance from mental health professionals. Pharmacological and psychological interventions are reported to show moderate success in BDD, although there are still some patients that continue to hold their beliefs of ugliness despite receiving standard pharmacological and psychological treatments. It has been clear for a number of years that a better understanding of both the psychological and brain mechanisms that lead to the development and maintenance of the disorder would be useful to improve treatment outcomes.
wires), and can be used to see whether different brain regions are appropriately connected with one another. In this paper, they illustrated that patients with BDD showed weaker connections between the amygdala, the brain emotion centre, and the orbitofrontal cortex, the rational part of the brain that helps regulate our emotional arousal. In addition to problems with connections across the two sides of the brain, left and right, in areas that we know are involved in visual perception and organisation (occipital regions).
Swinburne University of Technology’s Professor Susan Rossell has recently conducted some pioneering research in this field. With her colleagues, Professor David Castle (St Vincent’s Hospital/ University of Melbourne), Dr Ben Buchanan and Dr Jerome Maller (both from Monash University) they published neuroimaging or brain imaging research on the largest group of BDD patients ever studied using brain imaging technology. The team used two different neuroimaging techniques to study the brains of 20 people with BDD. They compared them with 20 healthy persons without a history of mental health problems.
The lesser known body dysmorphic disorder (BDD) is considerably more prevalent than anorexia, and also causes higher levels of psychological impairment.
The first study, published in the journal Psychological Medicine in December 2013, used a technique called Diffusion Tensor Imaging. This technique examines for abnormalities in the white matter of the brain (similar to the insulation on electric
The second study, published in Australian and New Zealand Journal of Psychiatry in July 2014, investigated the size or volume across a number of regions of the brain in BDD. The data demonstrated that people with BDD have a number of regions that are smaller including the orbitofrontal cortex and the amygdala, as well as occipital and parietal lobe regions involved in vision. In addition, the longer a person had BDD symptoms the smaller these brain regions were.
The results of both these studies suggest that patients with BDD have difficulty visually analysing their own face and/ or body accurately when they look at themselves: this fits with reports from patients themselves. Further, when they become emotionally distressed by their face / body image, they then find it very difficult to relax, because the emotional and rational parts of the brain are not communicating effectively. By establishing that ugliness is represented in the brains of BDD patients we must emphasise to patients the futility of obtaining cosmetic surgery to try to ‘fix’ their imagined defect in appearance; their brains will not adapt to such change. Using psychological interventions like cognitive behaviour therapy to reduce stress and emotional arousal, and promote connectivity between frontal regions and the amygdala can be helpful. The brain is plastic or adaptive to such learning, thus such a psychological intervention may result in long term brain changes that prevent the experience of ugliness and the reaction to it redeveloping. In addition, the data suggests that creating a novel intervention that promote patients visual scanning of their faces and bodies will be of benefit. The group are currently writing protocols and piloting this innovative ‘visual scanning’ therapy, with the aim of leading to further long term benefits for those with this dreadful condition of ‘imagined ugliness’.
Figure 2: Reduced right orbitofrontal cortex (OFC) in BDD.
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Spring 2014
Real-Life Patient Outcomes to Inspire Type 1 Diabetes Researchers More than 122,300 Australians living with type 1 diabetes are celebrating after the Minister for Education, the Hon. Christopher Pyne MP recently announced the award of $35 million to fund the most promising research and researchers dedicated to finding a cure for type 1 diabetes and its complications
The ARC funding will be used to significantly increase the excellence and impact of research in this field in Australia. It will also support the more efficient and effective delivery and adoption of research outcomes, build long-term research capacity in Australia, nurture the next generation of research leaders and create a more connected and cohesive research system. Mike Wilson continued, “The funding award provides us with a secure stream of $7 million each year for five years. It will significantly increase the excellence of type 1 diabetes research in Australia and also reshape how the research system works and connects. Ultimately, it provides JDRF with an increased ability to positively impact the lives of people with type 1 diabetes – which is why JDRF exists.”
Minister for Education, the Hon. Christopher Pyne MP with JDRF government advocates after announcing the award of $35 million for the Type 1 Diabetes Clinical Research Network.
The funding is for an expansion of JDRF’s Type 1 Diabetes Clinical Research Network (T1DCRN). It is the largest ever single commitment to type 1 diabetes in Australia and JDRF’s young advocates were the central force in securing it. Hannah Gordon, now 14 years old, was one such advocate who met with her local MP to discuss funding for research into finding a cure for type 1 diabetes. Hannah, who was diagnosed with type 1 diabetes when she was seven years old, explained why research into finding a cure was so important to her, saying “I want to know why I have type 1 diabetes. I know I couldn’t prevent getting it, but perhaps we could find a cure for me and possibly prevent others from developing it.” “I feel overjoyed, it is really exciting and one big step towards finding a cure!” Hannah said upon hearing of the Australian Government’s announcement. The funding ($35 million over five years, or $7 million each year) has been awarded to JDRF, the leading global organisation funding type 1 diabetes research by the Australian Research Council (ARC) under its Special Research Initiatives scheme. It will enable a significant expansion of JDRF’s existing T1DCRN, supporting the
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prioritisation and delivery of real benefit to more than 122,300 Australians living with type 1 diabetes today. JDRF’s existing T1DCRN is a national collaborative network that supports and promotes the most promising emerging researchers and research projects in type 1 diabetes clinical research in Australia. Led by Australia’s brightest minds in this field, it is built around an innovative model that facilitates national and international collaboration on cutting edge research projects. The new funding will allow the T1DCRN to bring together and build research teams from multiple research disciplines to answer the most important type 1 diabetes research questions. JDRF Australia CEO Mike Wilson said: “This is an important moment for type 1 diabetes research in Australia and we are delighted to see the hard work and dedication of so many young JDRF advocates and their families pay off. We also recognise the important role that the Australian research community has played, delivering research that places them in the top echelons of global type 1 diabetes research.”
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The T1DCRN was initially launched by JDRF in 2011 through a $5 million grant from the Australian Government and currently funds twelve projects and a number of other grants across Australia. Starting the 31st of August, the T1DCRN will be inviting research applications for cutting edge research projects along with applications for research capacity building. For more information, please visit www.t1dcrn.org.au.
The ARC funding will be used to significantly increase the excellence and impact of research in this field in Australia.
One certainty is that the young Australians with type 1 diabetes who successfully campaigned for this funding will remain central to the T1DCRN’s prime goal and that is to positively impact the life of people with T1D in Australia through the support and promotion of clinical research. “Now that there is new support from the Government for type 1 diabetes research, it’s only a matter of time before people living with type 1 diabetes see hope for a cure turning into a reality,” Hannah said.
Spring 2014
New Biosecure Lab up for the Fight A new biosecure immunology lab heralds a new era in the battle against infectious disease Ever since they were established to fight the “foot and mouth” and “blue tongue” diseases that were threatening Australia’s cattle and sheep in the 1960s, CSIRO’s animal health laboratories have been at the cutting edge of infectious disease research. In late 2012, researchers at the Australian Animal Health Laboratory (AAHL) developed a world-first vaccine for the Hendra virus. Now, a unique, world class Biosecure Immunology Laboratory has been launched at AAHL in Geelong that is set to play a key role in the continuing battle against emerging infectious diseases – with potential for developing new treatments for diseases such as influenza and the new Middle Eastern Respiratory Syndrome (MERS). The new laboratory, within the quarantined biosecure area of AAHL is one of the world’s most sophisticated highcontainment laboratories. Its high-end flow cytometry equipment, obtained as the result of a CSIRO and Deakin University collaboration, will enable real-time analysis of immune response mechanisms in infected living cells. Dr Kurt Zuelke, Director of AAHL, noted that the laboratory will help researchers to identify the immune mechanisms employed by animal hosts at the cellular level. “Our researchers are world renowned for their work with zoonotic agents – those that can pass from animals to people – and, with this new facility, we can now compare the immune responses of different animal species, including humans, to the most pathogenic infectious agents”. He explained that by increasing our understanding of how pathogens affect
different host animals at a cellular level, researchers hope to harness a host’s successful immune mechanisms and develop new therapeutic approaches to viral infection. Dr Andrew Bean, Group Leader of Immunology at AAHL, said that emerging infectious diseases, often developing in wildlife populations and transmitted through travel and transport, will continue to pose problems.
This new facility, has the capacity, expertise and infrastructure to make important progress developing new therapeutics, antivirals and vaccines.
“We need to undertake comparative studies of the natural hosts, which are resistant, and the transmission hosts, which are susceptible, to help us identify what’s going on. We need to understand inappropriate responses so that we can develop strategies that allow us to intervene or correct these responses, to protect wildlife, domestic stock and human health.” Deakin’s Deputy Vice-Chancellor (Research) Professor Lee Astheimer congratulated the researchers from CSIRO and Deakin University, who obtained the funds for the project, and who are collaborating on a range of projects impacting both animal and human
infectious disease. These collaborations have been core to the development of the Geelong Centre for Emerging Infectious Disease (GCEID), which is a research partnership between Deakin University, CSIRO, AAHL and Barwon Health. “There is a real need for cellular level immunology research that examines hostviral interactions – and this biosecure facility is critical for that to occur. The new lab will play an important role as a resource for the work of GCEID,” Professor Astheimer said. She added that Deakin University and the AAHL researchers have been working closely together over the past five years, with a number of joint projects, sharing facilities and co-supervision of PhD students. In fact, Deakin University has recruited additional academics to help facilitate this work in the areas of wildlife immunology and microfluidic diagnostics. “AAHL, particularly with this new facility, has the capacity, expertise and infrastructure to make important progress developing new therapeutics, antivirals and vaccines. We hope this will seed commercial biotech companies and jobs in Geelong,” Professor Astheimer said. The state-of-the-art equipment, worth $775,000, was funded through an ARC “Linkage, Infrastructure, Equipment and Facilities” (LIEF) grant, worth $520,000, with the balance contributed by Deakin University, CSIRO and the University of Georgia, USA. The Director of Deakin’s Molecular and Medical Research SRC, Professor Alister Ward, led the successful LIEF bid. He also led the development of the strong collaboration between the Deakin Medical School and AAHL, including joint appointments, students, projects and publications.
eakin University postdoctoral research fellows Lenny Izzard and Siying Ye with D Professor Lee Astheimer in the new AAHL Biosecure Immunology Laboratory.
AAHL plays a vital role in maintaining Australia’s capacity to quickly diagnose exotic and emerging animal diseases that threaten livestock, aquaculture species, wildlife and people. Over the past five years, nearly $50 million has been spent on upgrading their world-class facilities.
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A $28 million funding boost from the Commonwealth Government to the HEARing Cooperative Research Centre (HEARing CRC) earlier this year will see it continue to develop the resources necessary to bring about a quantum shift in how hearing healthcare is delivered in Australia HEARing CRC CEO Associate Professor Robert Cowan said hearing loss is a significant issue affecting all Australians across their life course, and often is associated with Auditory Processing Disorder that disrupts the brain’s ability to process speech, particularly in background noise. “Hearing and APD disorders often go undetected and therefore untreated in both hearing-impaired and normal-hearing children. Having a healthcare workforce equipped to deal with the unique communication needs of both children and an aging population is a significant issue for Australia in the decades to come and we will be looking at ways to better detect and manage these communication problems,” Associate Professor Cowan said. The funding extension will allow the CRC to continue developing individualised technologies, therapies and service delivery models that will improve the prevention, detection and remediation of hearing disorders in Australia. A key element is working with industry partners Cochlear and Siemens to ensure that innovations in new materials, sound processing or electrode design are translated into commercial applications. “We’re also focused on the major challenges of how to reduce the cognitive decline that’s associated with hearing loss in the elderly. In Australia, it’s estimated that people wait up to ten years between recognising that they have a hearing problem and actually deciding to do something about it. Unbeknownst to most, during this time they are not only just losing hearing cells in the ear, but they are also likely suffering degradation in the auditory pathways that process sound to the brain. The net result is that later remediation is not as effective due to these changes in the auditory pathway,” Associate Professor Cowan explained. “We need to reduce this ten year gap, to introduce remediation when the brain has greater plasticity to relearn how to understand the information being provided through hearing prostheses.” “Often, this delay may be due to geographic isolation, as most audiology
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services in Australia are delivered on a face to face, audiologist to client basis primarily in metropolitan or large regional centres.” The HEARing CRC’s work will also focus on new e-health delivery processes for hearing services, not only to ensure that all Australians can have equal access to hearing healthcare regardless of their domicile, but also working with the professional associations to create new opportunities for hearing healthcare professionals to live and work within regional, rural and remote communities. In addition to the HEARing CRC’s research priorities, the organisation is increasing its efforts to raise awareness of hearing loss by communicating directly with the public and hearing health professionals through the establishment of the HEARnet Partners Program.
Hearing and APD disorders often go undetected and therefore untreated in both hearing-impaired and normal-hearing children. Since 2012, the HEARing CRC has taken a proactive role to complement its research by increasing the awareness of hearing loss in Australia through its HEARnet website www.hearnet.org.au. HEARnet and its associated social media accounts now play an important part in translating and communicating the HEARing CRC’s research results to its Australian and international audiences. In doing so, it has become a recognised online independent resource for hearing science research and hearing technology information. “One of the key communication tools we have on HEARnet is the Interactive Ear. It’s an animated infographic that allows visitors to quickly gain an understanding of hearing loss and the current technologies available to manage it. HEARnet also has a lot of considered information on how best to diagnose, and the different approaches to managing hearing loss in adults and children. Another important
Research Australia grassROOTS SPRING 2014
THE
HEARing CRC Funding Boost to Hearing Healthcare ING ®
CRC
aspect of HEARnet is explaining what actions people can take to prevent hearing loss. In particular, how to avoid exposure to harmful noise which is an increasing problem in today’s society,” Associate Professor Cowan stated. “In fact, in the near future the HEARing CRC intends to become an active campaigner in creating a greater awareness of the hearing loss risks associated
with what we call binge listening – the prolonged exposure to loud recreational noise such as regularly attending live music venues and nightclubs.” Another very important way the HEARing CRC is making sure its research is getting used by those who can most benefit from it is HEARnet Learning www.hearnetlearning.org.au – an online training resource for hearing health professionals. Through HEARnet Learning, audiologists and other hearing health professionals can gain Continuing Professional Development (CPD) Points while learning how the CRC’s research results can help create better hearing outcomes for their patients. HEARnet Learning also provides users with
In Australia, it’s estimated that people wait up to ten years between recognising that they have a hearing problem and actually deciding to do something about it. an opportunity to take theoretical refresher modules or develop specialist skills within their profession. “HEARnet Learning now has more than 850 users with access to 15 modules – ten of which are already endorsed
by Audiology Australia for CPD points – Australia’s leading member based organisation for audiologists,” Associate Professor Cowan said. “We see HEARnet Learning playing a central role in getting our research understood and implemented into clinical practice by hearing health professionals. It will help the HEARing CRC change how hearing health services are delivered in Australia with a particular emphasis on providing better services for those Australians in remote and rural locations. Already, we are moving forward to expand the range of online training modules and to have HEARnet Learning training accredited by a wider range of hearing health organisations.”
The Hearing Cooperative Research Centre will use its funding boost from the Commonwealth Government to deliver hearing health services, such as remote cochlear implant mapping, from afar. Sydney Cochlear Implant Clinic Audiologist Emma van Wanrooy with a client.
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Spring 2014
Practitioner Toolkit for Managing Menopause A free and simple toolkit for GPs could revitalise menopause diagnosis and treatment across the world. Created at the School of Public Health and Preventive Medicine (SPHPM), Monash University by Professor Susan Davis and Dr Fiona Jane, the world’s first toolkit has been designed for general practitioners to use with women from the age of 40 and over. The Practitioner Toolkit for Managing Menopause includes diagnostic and management algorithms and a reference document that provides the rationale for the algorithms Menopause is the permanent cessation of menstrual bleeding following the loss of ovarian function. It is a natural ageing occurrence in women, but for many it is an event with significant health costs. The loss of oestrogen production by the ovaries results in physical symptoms which is why menopause is also referred to as ‘the change of life’. These symptoms can include hot flushes, night sweats, joint pain, vaginal dryness, painful intercourse and sexual dysfunction. They can also present as urinary tract infections, urinary urgency, and fragmented sleep, independent of night sweats. The decline in oestrogen at menopause also results in accelerated bone loss, central abdominal fat accumulation and metabolic changes that predispose women to cardiovascular disease and diabetes. For many women, menopausal symptoms are debilitating. A UK study suggests that severe menopausal symptoms affect 1 in 2 women, with as many as 1 in 3 women experiencing severe psychological symptoms such as depression and anxiety. A common belief is that even disabling menopausal symptoms are short-lived and that few women experience symptoms beyond the first few years. However, recent small studies indicate that 10-15 percent of women who are at least 10 years past menopause continue to experience hot flushes, night sweats and other symptoms. A complicating factor in terms of treatment is that the menopausal experience is not the same for every woman and this can make treatment challenging.
prescribing it. It is also widely accepted that we have a generation of young doctors who have not been well trained to deal with menopausal problems. Consequently women are often left without counseling and treatment.
For many women, menopausal symptoms are debilitating.
Though several position and consensus statements pertaining to the management of menopause and postmenopausal hormone therapy have been published, these documents provide evidence-based clinical practice guidance, and are not designed as a clinician aid. The Practitioner Toolkit for Managing Menopause is created to support clinicians from the time a woman aged 40 years or over seeks help. The algorithms include
Additionally, there is substantial anxiety and confusion as to how menopause should be managed, both in the community and amongst health care providers. Women are fearful that menopausal hormone therapy causes cancer, and doctors are wary of rof Susan Davis, School of Public P Health and Preventative Medicine, Monash University
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why a woman might present with her symptoms or concerns, and are developed to accommodate women who may not be able to report menstrual bleeding patterns due to hysterectomy, endometrial ablation or hormonal contraception, or settings in which hormonal levels cannot be measured due to cost or remoteness. The assessment, treatment options and symptom management algorithms are derived from the published literature. The included therapies are comprehensive to enable global application, with the caveat that the availability of the included treatments, and indications for their use by regulatory bodies, vary between countries. The tool also flags safety concerns, and the listed therapies are both hormonal and non-hormonal therapies that have evidence to support their use. The toolkit has been acknowledged as filling the void of clear guidelines on menopause diagnosis and management by equipping doctors with the fundamentals to care for any woman with menopause. Furthermore, the toolkit provides a teaching aid for undergraduate and postgraduate medical trainees. The toolkit has been published in the journal, Climacteric, the peer-reviewed journal of the International Menopause Society. It has had an overwhelmingly positive reception from doctors world wide and is being adopted by medical societies. The Practitioner Toolkit for Managing Menopause is available to download for free from Climacteric.
Spring 2014
Bravo: New Concert Initiative Hits the Right Note The Ingham Institute and partners are positioning translational cancer research firmly on the Australian research stage following the official opening of one of the biggest research collaborations in NSW history: the Centre for Oncology Education and Research Translation (CONCERT) on Friday 1 August at the Thomas & Rachel Moore Education Centre at Liverpool Hospital CONCERT, led by the Ingham Institute, brings together more than 200 professionals from three universities, two health districts and two research institutes across NSW and ACT. Proudly supported by a prestigious grant from the Cancer Institute NSW, CONCERT will improve the quality of life of cancer patients with the introduction of new drugs and access to improved treatments. The NSW Minister for Health the Hon. Jillian Skinner MP officially opened CONCERT as part of official proceedings at the 1 August event, which followed with a presentation from Professor Sanchia Aranda, Deputy CEO and Director of Cancer Services, Cancer Institute NSW. CONCERT is the result of a $6.5 million grant over the next five years. The grant is also leveraged with an additional $1.6 million from collaborating partners, bringing the total grant funding to just over $8 million. The first of its kind for NSW, CONCERT brings together some of the best minds in the country from all levels of cancer specialties from collaborating partners: UNSW Australia, University of Western Sydney (UWS), University of Wollongong, the Ingham Institute for Applied Medical Research, Illawarra Health and Medical Research Institute (IHMRI), Illawarra Shoalhaven Local Health District (ISLHD) and the South Western Sydney Local Health District (SWSLHD), as well as collaborating partner
institutions in the ACT (Health Directorate ACT Government, Australian National University and University of Canberra). The large demographic footprint of CONCERT partners serves more than 5500 new cancer patients in NSW each year and brings together more than 200 professional members spanning all aspect of cancer research, diagnosis, treatment and care. CONCERT will embed translational cancer research into clinical practice, encompassing basic science, clinical, psychosocial and health service research with the aim of improving the lives of cancer patients and their carers in their journey from diagnosis, right through to treatment and survivorship. CONCERT is led under the Directorship of Professor Paul de Souza, the Professor of Medical Oncology at the South Western Sydney Local Health District and leader of Ingham Institute’s Translational Cancer Research Unit (TCRU). The TCRU was officially opened in 2011 as part of Cancer Institute NSW’s introduction of Translational Cancer Research Units in NSW. Professor Paul de Souza believes the CONCERT grant will boost the level of translational cancer research exponentially, resulting in the rapid translation of research to help care for people suffering from cancer. Core to this will be a focus on the Ingham Institute’s biobanking and Circulating Tumour
(from left to right): Ingham Institute Director of the CONCERT TCRC Professor Paul de Souza, Ingham Institute Pyscho-Oncology Research Director Professor Afaf Girgis, Cancer Institute NSW Deputy CEO and Director of Cancer Services and Information Professor Sanchia Aranda, Ingham Institute Cancer Stream Leader Professor Geoff Delaney and Ingham Institute Research Director Professor Michael Barton OAM.
Cell (CTC) facilities, Psycho-Oncology studies, and the much awaited MRI-Linac cancer therapy research project set for launch in late 2014. A flagship project that will be a first for Australia and one of only three in the world, the MRI-Linac will combine an MRI scanner with a Linear Accelerator for research into cancer therapy and treatment housed in a specially designed Research Bunker at the Ingham Institute. “The Ingham Institute together with our research partners see and treat a significant proportion of all cancer patients in NSW, including special populations such as those with culturally and linguistically diverse backgrounds or living in rural/ remote areas,” said Professor de Souza. “CONCERT will enable us to work together to more efficiently study specific cancers in-depth, improve the way that clinical care is delivered by maximising patient involvement and develop new technologies and methods,” he explained. “This will mean real improvements for the overall health outlook of Australians suffering from a broad range of cancers, with one important goal to work towards introducing new drug therapies and other treatments such as the pioneer MRI-based LINAC program.” One of the main aims of the flagship program is the development of new treatment technologies to better target cancers, improve statistics for the disease and reduce side effects with a focus on patients suffering from colorectal, head & neck and brain cancer. Professor David Currow, Chief Cancer Officer and CEO of the Cancer Institute NSW said “NSW is home to world-class cancer research. Centres like CONCERT, part of our Translational Cancer Research Program, mark an exciting new direction for cancer research in the state, allowing our brightest clinical and research minds to work together, transferring research rapidly into improvements in the treatment and care for people diagnosed with cancer in NSW.” For further information about CONCERT and the Ingham Institute’s cancer research programs see www.inghaminstitute.org.au
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Spring 2014
New Building Aims High Shining in the morning sun, the rising white ribs of the new Westmead Millennium Institute for Medical Research seem to be reaching towards something The design of the nine-story building reflects the soaring aspirations of the more than 360 researchers, students and support staff inside. It’s in these sunlight-filled spaces that long hours are spent in dedicated search of preventions and treatments for some of mankind’s most significant diseases. When staff completed moving into this factory of ideas in July, it was the culmination of more than a decade of fundraising, planning and construction. The new building brings WMI’s multiple centres of research together under one roof for the first time. Previously scattered across five locations on the Westmead
for researchers in the most efficient and effective way possible.” For Professor Cunningham, the most exciting thing about the new building is the opportunities it creates for greater collaboration between researchers. “The building is designed to encourage the exchange of ideas between researchers who were previously physically isolated from one another. “We believe the result will be collaborations across disciplines, and while nobody can predict what the result of this trans-disciplinary thinking might be I’m hopeful it will result in some significant research advances.”
The building is designed to encourage the exchange of ideas between researchers who were previously physically isolated from one another.
Hospital campus, the gathering of all WMI’s staff creates new opportunities for enhanced collaboration, sharing of knowledge and operational efficiencies, maximizing what can be achieved with limited research funds. The new WMI building is also a significant step for the Westmead Research Hub. Core high-technology facilities in the building serve not only WMI’s staff but also researchers from the neighbouring Children Medical Research Institute, Kids Research Institute, Westmead Hospital and the Children’s Hospital – creating a research precinct in the centre of the campus. “In an environment where society’s requirement for medical research is growing but funding is not, we have to be smart about how we organise ourselves,” says WMI Executive Director, Professor Tony Cunningham. “The new WMI is designed around best practices for medical research institutes, providing scientific services and support
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Despite moving a short distance, WMI retains very strong links to the hospital. Many of its senior scientists are also doctors in the hospital and Professor Cunningham says the number one goal of all research at WMI is to develop therapies that can one day be used to treat patients in the wards. “Medical research these days is heavily focused on practical outcomes. WMI has a long and successful history of turning medical discoveries into health benefits for Australians and the new building is all about taking what we discover on the lab bench and translating it to the bedside.”
Spring 2014
Fresh Approach to Community Engagement in Research Spring is the time to make way for fresh and exciting possibilities and, in health and medical research, Bedside to Bench is a new non-proft organisation doing just that by creating a clear path for the community to engage in the research process The vision behind Beside to Bench started with the late Professor Robert L. Sutherland, who was an internationally recognised cancer researcher and the Inaugural Director of The Kinghorn Cancer Centre. Unknown to many, Professor Sutherland was suffering from pancreatic cancer at the time the centre opened in 2012. He passed away two months afterward. His daughter Rebecca Sutherland is on the Board of Bedside to Bench and explains Professor Sutherland’s vision. “Dad thought that by listening to patients and clinicians at the bedside, scientists could identify the most important research questions to answer at the bench. The importance of working to achieve this ideal was reinforced throughout Dad’s own cancer treatment. It is this Bedside to Bench approach that we continue through the organisation in a number of ways, so that in the end, patients receive the benefits of research sooner.” Dr. Catherine Holliday, a registered nurse who worked for close to ten years in Geneva, Switzerland in the UN system and with the Australian Government, and more recently as Head of Research Strategy at Cancer Council NSW, leads the organisation. She completed her PhD thesis in the field of research strategy, to understand how we can secure better investments in research, and implement the findings into policy and practice, “Professor Sutherland was a great mentor. It has been such an honour launching Bedside to Bench and we have already seen a shift in the way researchers and the community interact with each other.” It is envisaged that over time, every research institute in Australia will systematically consult with patients to develop their research programs. Associate Professor Karen Canfell leads the Cancer Modelling Group at the Lowy Cancer Research Centre UNSW and has participated in one of the Bedside to Bench workshops. “It was fantastic on a number of levels; firstly to talk with patients and understand their experience, secondly to get feedback on our research, and finally, to take some
time to reflect on how our work can help as many people as possible. We made a number of changes to our research after the workshop that add that extra value needed to really make a difference.” Catherine Holliday explains that for Medical Research Institutes, the Bedside to Bench Program helps to establish and evaluate the practice of community engagement in research, “We know that researchers have so much on their plate, and we want them to be able to focus on their research. What we do is help them by convening community panels made up of patients and carers, provide education and support so that everyone understands the research process, and then facilitate a conversation between the researchers and community so that the projects being developed better address the needs of patients and their families.” This is not always a straightforward process and there are a number of well documented challenges in the field of community engagement in research including preparedness of patients and carers to strategically articulate their needs and likewise, preparedness of researchers to meaningfully engage with patients, as well as organisations not being systematic in their approach to community engagement in research. “The way we address some of these challenges is through encouraging patients, carers, and researchers to participate in workshops together. We help them to understand the role of each stakeholder
group, and then build the skills and confidence to meaningfully engage in the research process. Evaluation is also a key component of the program.” Bedside to Bench is an independent organisation that does not carry any political agenda. Their role is to provide impartial training and advice to all stakeholders in the field of community engagement in research, and also provide a systematic and consistent approach, guided by current evidence, and state and federal policies. “It is important to us that we remain independent. We aren’t an advocacy or lobbying group, our role is to educate the community, collect information about their experience in a systematic way, and provide that information to inform research and policy decisions.” This systematic approach was nicely demonstrated in a recent survey conducted by Bedside to Bench, where they asked cancer patients how they wanted to be involved in the research decision-making process. The results, published in the July edition of Cancer Forum, found that the greatest area of interest in this group was having access to the results of research projects and working with researchers to develop projects, with the area of least interest was being involved with grant reviews. “In the past, the focus has been on how we engage, rather than how we listen and respond, and the impact that community engagement can have on research itself.” “It has to be less about ‘us and them’ and more about what we can do as a community that values the experience of patients and their families, the expertise of clinicians and researchers, and the contribution of industry.”
he late Professor Robert L. Sutherland T and Dr. Catherine Holliday at the opening of The Kinghorn Cancer Centre in 2012.
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Spring 2014
Free App to Support the Assessment of Dementia Developed by Neuroscience Research Australia’s Professor John Hodges and colleagues at Plymouth University to reliably screen for dementia, the ACEmobile app is designed by clinicians, for clinicians, for use on iPads The first of its kind, ACEmobile is an iPad-based tool that assists doctors and nurses to conduct dementia assessments thereby widening the clinical team. The iPad-based tool guides the user through the Addenbrooke’s Cognitive Examination (ACE-III) that was designed and developed by Prof Hodges. It is the most popular and commonly used paper and pencil dementia-screening tool. The app removes the need for clinicians to learn the ACE-III manual. It also automatically calculates patients’ scores and creates a report for their medical records.
Dr Rupert Noad, Consultant Neuropsychologist at Plymouth Hospitals NHS Trust, says; “ACE-III is a great assessment tool, but as with many such tools which are paper-based, it runs the risk of human error and miscalculation. By producing the ACEmobile app we have reduced this risk and created a tool that can be used by the wider dementia care team.” The ACEmobile will change the way clinicians diagnose dementia allowing greater scope to treat earlier. This foray into E-health is a step forward in global health
The creators have designed the app to make dementia assessment easier and more reliable for staff and health professionals globally. The research team will collect information from each assessment conducted using the app, with a plan to improve the sensitivity of ACEmobile for earlier dementia diagnosis and in assessment of the effect of new medications as they are tested. One of the major factors holding back the development of new treatments for dementia is the relative insensitivity of currently used instruments.
The ACEmobile will change the way clinicians diagnose dementia allowing greater scope to treat earlier.
Prof Hodges says: “Our vision to provide a computerised version of the ACE, while adhering to the philosophy of creating tests for clinicians at no cost, has today been realised. To see ACE developed into an online medical tool means greater access to early and decisive diagnoses for all people word-wide. A diagnosis can now be made anywhere there is an Internet connection, which is particularly important in parts of the world where resources are limited.” “The Plymouth team have done a great job producing such an attractive and user-friendly app which I’m sure will find wide usage.”
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care. Prof Hodges says: “Not all elderly patients with suspected dementia can be screened in specialists’ centres particularly with increasing pressure on healthcare services around the world. Our hope is that that like-minded clinicians and academics will value the use of this tool in their own practice and look for opportunities to support its continued development and evolution into the future.” Prof John Hodges with the ACEmobile app
Spring 2014
Regional Wellbeing Critical to Australia’s Future Most rural and regional Australians enjoy living in their communities, with 78 per cent rating their community a place with a ‘bright future’ where they feel proud to live in, a new University of Canberra study shows Some of the key findings, however, show that irrigators, people under 30, people who want to shift to a new community and rural Queenslanders are among those with the poorest wellbeing. In comparison, older people, dryland farmers and people living in NSW were the most satisfied with their lives. The study, based on a 9,000-people survey conducted across Australia for the first time last year, sheds light on the wellbeing of people living in rural and regional Australia. The Regional Wellbeing Survey is a comprehensive annual survey of quality of life in Australia’s rural and regional communities. Its first report was officially launched at the University by Assistant Minister for Health, Senator Fiona Nash, University of Canberra’s acting Deputy-Vice Chancellor (Research) David Choquenot and Murray-Darling Basin Futures (MDBFutures) Director, Peter O’Brien. The report also found that wellbeing of communities was not strongly linked to hotly-debated issues such as the environment, water reform and coal-seam gas, despite these being controversial topics. Instead, “rural and regional communities with the greatest wellbeing have certain characteristics that help them adapt successfully to change, no matter what type of challenges they face,” University of Canberra senior research fellow and project leader, Dr Jacki Schirmer, said.
all the different things going on in a community, or in a person’s life, rather than focusing on only one or two of them. “In many cases, what matters is not so much the type of change you face but whether you have the resources to adapt successfully to that change,” she said. Professor Helen Berry, Associate Dean of Research at the University’s Faculty of Health and leader of the People and Place research program which hosts the survey explained: “Wellbeing is an elusive concept. We need to understand it better to make sure rural and regional communities get the support they need – it’s critical to Australia’s future. “Wellbeing is the outcome of many factors happening in a community, or in a person’s life, at any time. Generally speaking, a single factor does not influence wellbeing much. Wellbeing tends to falter when problems mount up or last a long time, something we’ll be looking at closely in future waves of the survey.” These are some of the findings: • Communities with strong leadership, plentiful social connectedness and wellfunctioning local organisations have the greatest wellbeing. • People living in rural and regional areas of Queensland report poorer wellbeing and are more likely to be considering shifting to a new community than people living in other parts of rural and regional Australia.
• New South Wales rural residents report the greatest wellbeing and the most satisfaction with their local economy, government and community leadership. However, even within NSW, there are regions, like the south coast, where residents report lower than average confidence in their community’s future. • Younger people are less satisfied with living in rural and regional areas than are older adults, with 16.5 per cent saying they are “very likely” to shift to a new community in the next year (compared to 10.9 per cent of all rural and regional Australia), and 70.4 per cent saying they want to relocate to cities. • Farmers stand out as especially involved in their local communities, with 41 per cent regularly participating in local community activities compared to 20 per cent of non-farmers. Farmers like the landscapes they live in better than do non-farmers. But they are less satisfied with their access to infrastructure and services and with their local institutions. The survey is an initiative of the University of Canberra-led MDBFutures collaborative research network. A summary report and detailed technical report on the survey are available at http://www.canberra.edu.au/murraydarling-crn/regional-wellbeing. The website also provides summary results for all local regions from which more than 100 survey responses were received.
“These include strong leadership and collaboration within the community, social connectedness and effective local institutions. “There’s a lot of discussion about what makes a rural community a good place to live and what helps communities deal with difficult times. The survey shows that rural communities have important insights on how changes affect them, with recent examples including coal-seam gas, water reform, and changes in markets for agricultural products,” Dr Schirmer said. “However, changes of this type are not usually linked on their own to large differences in wellbeing. If we want to better support wellbeing in rural and regional areas, we need to understand
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Board of Directors
Editor’s Corner
Chair
Who can put an article in grassROOTS?
Professor Christine Bennett AO Dean, School of Medicine, Sydney University of Notre Dame Australia
Deputy Chair Peter Wills AC Elizabeth Foley CEO & Managing Director Research Australia Dr Alison Butt Director Research Investment National Breast Cancer Foundation Shelley Evans Patient Advocacy Director Genzyme Associate Professor Mary Haines Director Strategic Research Investment Cancer Institute NSW Professor Janet Hiller Dean, School of Health Swinburne University of Technology Geoffrey Joyce Executive Director Macquarie Capital Dr Anna Lavelle CEO AusBiotech Ltd Professor Brendan Crabb Director & CEO Burnet Institute Professor Alexandra McManus Director Centre of Excellence Science Seafood & Health Curtin University
Professor Arthur Shulkes Associate Dean (Research) Faculty of Medicine, Dentistry & Health Services University of Melbourne Barry Thomas Vice-President, Director Asia Pacific Cook Medical Professor Paul Ward Associate Dean (Research) Faculty of Medicine, Nursing and Health Sciences Flinders University Dr Andrew Nash Senior Vice President, Research CSL Limited Professor Richard Head Deputy Vice Chancellor, Research & Innovation University of South Australia Professor John McGrath Executive Director Queensland Centre for Mental Health Research
grassROOTS is for and by members of Research Australia and is designed to showcase the activity in philanthropy for health and medical research, through either fund raising activity, awards, or the results of actual research funded by philanthropy. It is also a vehicle for the broader community to understand the importance of philanthropic funding and how they can contribute to the expansion and improvement in health and medical research in Australia.
When will I need to get my article in by if I want to be featured in the next edition? The article submission deadline is October 29, 2014. Due to high demand for editorial space and to ensure the magazine maintains its readability and audience engagement levels the article word count has been reduced to 600 – 650, and please provide one or more photos (with subtitles) and logo to accompany the article. Please submit articles via email to: danijela.krha@researchaustralia.org Research Australia does not warrant or guarantee the accuracy, quality, completeness, currency, or validity of any information on its website or newsletter. Some of the materials in classified ads, press releases, and newsletters are also provided by other organisations. Research Australia does not edit or control the financial information it receives. Due to the possibility of human and mechanical error, neither Research Australia nor any of the contributors to this newsletter are responsible for any errors or omissions. All information is provided “as is” without warranty of any kind. Neither Research Australia nor the contributors to this newsletter make any representations as to the accuracy or integrity of the information. They disclaim all express, implied, and statutory warranties of any kind, including warranties as to accuracy, timeliness, completeness, merchantability, or fitness for any particular purpose. Neither Research Australia nor its contributors will be liable for any damages of any kind incurred as a result of the information contained within this newsletter or on this site.