Research Australia grassROOTS Spring 2015

ISSUE TWELVE

RESEARCH AUSTRALIA

AN ALLIANCE FOR DISCOVERIES IN HEALTH

2 A Message From The CEO 3 Vale Alastair Lucas AO 4 Research Australia Conference On Philanthropy For Health & Medical Research 6 Gynaecological Cancer Research Can Increase Women’s Longevity 7 New Online Tool Helps Stroke Survivors Drive Their Own Recovery 8 Two Leaders In Schizophrenia Research Join Forces 9 Potential Breakthrough In Cancer Treatment 10 Blood Clot Breakthrough Paves Way For Safer, Better Drugs 11 Pioneering Minds Come Together To End MND 12 From Words To Action – Launching MQ 13 A Prescription For Better Health Care – A Wiki In Your Pocket 14 Tailor-made Treatments for Childhood Brain Cancer 15 QIMR Berghofer Gains Licence To Produce T-Cell Therapies 16 More Investment Needed for Rare Cancer Research 17 Ensuring Equity For Country Kids: A Tele-Speech Program 18 New Journal A Nexus Between Research And Practice 19 The Exact ‘Where’ And ‘How’ Of HIV Infection 20 World First Statin Trial Launched In The Elderly 21 Clinic Removes Barriers To Rehabilitation 22 Revolutionising Research With Information Technology 23 Ice Bucket Challenge Pours Over $1.1 Million Into Motor Neurone Disease Research 24 Critical Discovery In Muscular Dystrophy Research 25 New Ways To Detect Depression & Anxiety In Older Chinese Australians 26 Early Childhood Program Launches In The USA 27 New Technology To Target Diabetic Foot Ulcers 28 Whistle-Blowing Research Attracts Significant Funding 29 Board of Directors 29 Editor’s Corner

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A Message From The CEO amount will rise rapidly over the next five to six years until it reaches $1 billion per annum.

The next phase for our advocacy agenda is to focus on what and how the MRFF distributions will be spent. Harnessing the voice of the ‘broad church’ that is Research Australia’s membership in this process has never been more important.

Our relationships with industry, health service providers and consumer health organisations will be vital as we develop submissions to the Advisory Board, the Minister for Health and the Department of Health.

August saw the Medical Research Future Fund (MRFF) move closer to becoming a reality. We also held our annual conference, in Double Bay Sydney, aptly titled, ‘Researchers are from Mars and Givers as from Venus’. The insights into the state of UK mental health research from our international key note speaker MQ: Transforming Mental Health CEO Cynthia Joyce were excellent, and there was a strong, somewhat unplanned theme of the need to overcome the stigma of many diseases which emerged as an important goal. Thanks to all who participated in the conference.

Health and medical research in Australia is on the edge of an exciting new era with the MRFF passing both houses of Parliament in mid August. We are now awaiting the appointment of the Advisory board and the commencement of the consultation process on the first fiveyear strategy for the MRFF and priorities for the first two years. While the MRFF is expected to have only $10 million to distribute this financial year, this

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Many thanks to those of you who have participated in our national consultation on the MRFF over the last few months.

For those of you who didn’t see it, you can find a copy of our briefing paper on the Research Australia website. We are also currently surveying our members on the topic via Survey Monkey and we expect the report from our consultations to be completed in late September.

In July former Research Australia Director Alastair Lucas AO passed away. Long-time Chairman of the Burnet Institute, this great businessman, philanthropist, advocate, humanitarian and friend will be sadly missed. Our thoughts go out to his family and partner Louise, and of course all his colleagues and friends at the Burnet.

Finally, with the help of Roy Morgan Research, we have completed our annual polling and are now preparing the report which we plan to launch in October. I look forward to sharing the findings with you all soon.

Research Australia grassROOTS SPRING 2015

SAVE THE DATES Research Australia Events for 2015 •R esearch Australia Awards Dinner Wed 18 November 2015 Park Hyatt, Melbourne •A nnual General Meeting Thur 19 November 2015 Swinburne University of Technology see our website for more details www.researchaustralia.org

Spring 2015

Vale Alastair Lucas AO

Group who had strong ties to Mr Lucas.

The fund will support in perpetuity the Alastair Lucas Prize for Medical Research into diseases affecting poor and disadvantaged communities. For more information on the Endowment fund and to donate, visit the Burnet Institute website.

In a career spanning two decades with Macquarie Bank, Mr Lucas distinguished himself as one of Australia’s most experienced corporate advisors, culminating in his appointment as Chairman, Investment Banking. In 2004 he was appointed co-Chairman, Investment Banking at Goldman Sachs in Australia and New Zealand.

Former Burnet Institute Chairman Alastair Lucas AO and his exemplary contribution to Australian life were acknowledged and honoured at a Tribute Service in Melbourne on Monday 3 August.

Federal Health Minister, The Hon. Sussan Ley MP, Federal Opposition Leader, The Hon. Bill Shorten MP, and Burnet Director and CEO Professor Brendan Crabb AC were among the 12 speakers at the service at Federation Square attended by more than 350 of Mr Lucas’ friends, family and colleagues.

Burnet Chairman from 2002-2014, Mr Lucas died peacefully last month, aged 63, from a brain tumour.

Businessman and philanthropist Simon McKeon AO told the service of Mr Lucas’ commitment to mentorship; Australia’s Ambassador for Women and Girls Ms Natasha Stott Despoja AM focused on his work to redress gender imbalance; and businessman Keith Tuffley spoke of his single-minded quest to stop the cull of dolphins in Japan.

English actor and writer Stephen Fry contributed a letter recounting his work alongside Mr Lucas on behalf of Flora and Fauna International to reintegrate four endangered white rhinoceros into the wilds of East Africa.

Professor Crabb told of a meeting early last year, before the cancer diagnosis, where he told Mr Lucas that he believed his best years were ahead of him.

“He’d been at the helm (of Burnet) for 12 years, but I felt he was just entering his prime,” said Professor Crabb. “He was just about to turn 62, and I thought he was so smart, connected, passionate, wise, and that with a bit more time and a few dollars in his pocket, his main contributions both to our own organisation and to the community more widely, lay ahead.

“So his passing leaves us with a gaping hole and, Alastair would say, ‘with a challenge’. I believe we can best serve Alastair by redoubling our own efforts to create a better Australia and a better world, especially through helping those who need it most and through the application of science, in all its forms.”

Mr Lucas’ partner, Louise Steinfort, announced the establishment of the Alastair Lucas Endowment Fund, made possible thanks to generous contributions from Goldman Sachs and Macquarie

Mr Lucas was founding Chairman of the Medical Research Future Fund Action Group and co-founder and Chairman of cord blood and tissue bank, Cell Care Australia.

“Many lives have been saved through his generosity and passionate support of medical and public health research,” Burnet Director and CEO, Professor Brendan Crabb AC He was a board member at Research Australia and helped to develop the Medical Research Foundation to engage Australians in philanthropy.

In recent years Mr Lucas was active in animal welfare through Australia for Dolphins, the Jane Goodall Institute, the Lort Smith Animal Hospital, and Animals Australia, and Flora and Fauna International.

Mr Lucas was appointed an Officer of the Order of Australia (AO) in the 2015 Queen’s Birthday Honours for his outstanding contribution to medical research and international health, animal welfare, philanthropy and the business community. www.burnet.edu.au

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Spring 2015 Research Australia Conference On Philanthropy For Health & Medical Research Health and medical research leaders gathered in Sydney on 19th August for Research Australia’s 5th annual Conference on Philanthropy for Health and Medical Research. The only Australian conference exclusively dedicated to philanthropy for health and medical research, hot topics included latest trends and techniques in fundraising for the sector, outstanding case studies of recent campaigns and a fascinating panel discussion on how best to leverage government and philanthropic funding.

Keynote speaker Cynthia Joyce, CEO of Britain’s MQ:Transforming Mental Health, delivered an in-depth case study of the challenges and potential of developing a large scale charity in the relatively new fundraising area of mental health research.

An overview of the current state of the Australian fundraising sector was delivered

by John McLeod from JBWere, Jeff Buchanan from AskRIGHT detailed their latest research on returns on investment for various fundraising strategies, and Luke Edwards from Elevate Fundraising provided an entertaining insight into the importance

of optimising websites and campaigns for mobile internet users.

Case studies on various research funding programs and fundraising campaigns were presented from both the funder’s perspective and the fundseeking side, with Bupa Health Foundation and Novartis outlining their research funding criteria and level of support for Australian research. Excellent case studies on specific campaigns were presented on the University of Sydney’s bequests program, the development of Ice Bucket Challenges for motor neurone disease in Australia,

and the impact on fundraising of Children’s Medical Research Institute’s emotional branding video that went viral earlier this year with more than 14 million views.

A session on The Patient’s Perspective on Health & Medical Research Fundraising highlighted the importance of considering how fundraising campaigns can affect perceptions of people with particular diseases, with strong presentations from Lauren Butterly of MS Angels (Canberra), Simone Leyden of The Unicorn Foundation and John Canning for the Black Dog Institute. All highlighted how strongly

Keynote speaker, Cynthia Joyce, CEO, MQ: Transforming Mental Health, UK

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L-R: Elizabeth Foley, CEO Research Australia, Peter Wills AC, Deputy Chair Research Australia, The Hon. Pru Goward MP, NSW Minister for Medical Research, Prof Christine Bennett AO, Chair Research Australia

emotional fundraising can have unintended consequences for sufferers of particular diseases, such as stigma at work and reduced perceptions of an individual’s ability to function effectively.

Research Australia’s CEO, Elizabeth Foley, and Michele Levine, CEO of Roy Morgan, outlined 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: 54% of Australians say current

spending on medical research is too low; that health and medical research is positively regarded but not top of mind; and 78% of Australians use the internet to find information about health problems.

The full report of this year’s opinion poll will be published later this year.

The final session of the day was a high level panel discussion about new opportunities to better coordinate government and philanthropic funding 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.

Greater coordination of both government funding and philanthropic support remains essential to retain scientists and skills in Australia and maximise the possibilities of collaborative research at all levels.

Research Australia grassROOTS SUMMER 2014

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Spring 2015

Gynaecological Cancer Research Can Increase Women’s Longevity In Australia, 1 in 3 women can expect to be diagnosed with cancer other than non-melanoma skin cancer. 1 in 8 of these is gynaecological cancer, with 1 new gynaecological cancer diagnosed every 2 hours. That’s 5000 cancers each year.

For every 3 breast cancers diagnosed there will be 1 new gynaecological cancer – that’s 10% of cancers in women.

Every 5 hours a woman so affected will die – that’s 9% of cancer related deaths, more than 1 for every 2 breast cancer deaths.

But Australia is not delivering anywhere near enough tax-derived funding to gynaecological cancer research to address these challenging statistics. In 2014, the proportion of NHMRC research grants relevant to women’s cancer was $36.6 million. Breast cancer received 29.9% but gynaecological cancer received only 3.4%. Australian Gynaecological Cancer Foundation [AGCF] thinks this proportion would be doubled, if fund allocation policy was fairly based on the proportion of new diagnoses and the relative impact of gynaecological cancer.

Charity foundation money almost equalled tax-derived breast cancer research funding in 2006-11, lifting the total to over $140m.

This research funding facilitated a 17% increase in 5 year survival - from 72% in 1982 to 89.4% in 2010. In contrast, taxderived funding of gynaecological cancer research got a meagre 7% lift from charity foundations. Compared to breast cancer, improvements in survival for gynaecological cancer affected women are disappointing.

Overall 5-year survival for gynaecological cancers combined is less than 70%. Cancer Australia has seen, in such data, evidence that more research can help save lives.

Unless found at very early stages, gynaecological cancers typically cause tremendous suffering for women and their families. 1 in every 250 women alive today is living with a diagnosis of gynaecological cancer. They’re responsible for 9% of the years of healthy life lost because of all forms of cancer affecting women. Their effects and treatment cause major psychosexual problems for women including concerns about body image.

They often cause premature menopause and infertility.

Better funding of research can also improve the well-being of survivors. For example, research can show us why all forms of gynaecological cancer have proven harder to prevent and to treat well in remote communities and in culturally and linguistically diverse groups, such as

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Read more about Lisa’s journey with cervical cancer on the AGCF website

migrant women and indigenous women.

Such knowledge will lead to better care.

The Australian Gynaecological Cancer Foundation is a new national foundation, recently launched by the Federal Minister for Health, The Hon. Sussan Ley. We support all types of gynaecological cancer research and we cover all of Australia.

We are well positioned to give grants to responsibly chosen, deserving researchers.

We have strong, state of the art policies, procedural guidelines and protocols to protect the interests of supporters and other stakeholders. We are registered as a corporation with all appropriate authorities, including ASIC, ATO and ACNC for tax deductible fundraising. Our structure will ensure that over 75% of funds raised will go to researchers. We have avoided expensive, capital-demanding and rapidly obsolete infrastructure by using innovative

Research Australia grassROOTS SPRING 2015

cloud platforms, software as a service, teleconferencing and home office working.

Our activities are state of the art and scalable, allowing expansion of our team of dedicated, motivated, creative and inspired persons for our science based, needs driven allocation of grants, creative graphical presentations, social media presence and reach. Soon our volunteer network will cross all States and Territories.

Being in our infancy, our focus to date has been in assembling grant allocation expertise, governance and infrastructure.

Any financial or voluntary assistance to facilitate our progression to a solid, sustainable research grant making program would be greatly appreciated. If you are interested and think you can help, please learn more from our web site agcf.org.au. www.agcf.org.au

New Online Tool Helps Stroke Survivors Drive Their Own Recovery

Spring 2015

Stroke survivors across Australia are set to drive their own recovery with the launch of a new free online stroke recovery tool enableme.

The world-first online platform was launched June by the National Stroke Foundation in partnership with The Bupa Health Foundation.

National Stroke Foundation Chief Executive Officer Dr Erin Lalor said enableme had been created specifically for the Australian stroke community to give survivors, their families and carers choice and control over their recovery journey.

“There are more than 437,000 stroke survivors living in our community and sadly most do not have access to the services, support and information they need to ensure quality of life post stroke,’’ Dr Lalor said.

“For many stroke survivors and their families there is a void in support once they finish formal rehabilitation and return home from the hospital. Around half (43 per cent) of stroke survivors currently leave hospital without a plan to support their transition home, limiting their recovery opportunities. “enableme will deliver stroke survivors, their carers and families with the information and support they need to maximise their recovery. It will help survivors to navigate the often confusing and frightening journey of life after stroke by empowering them and their loved ones to drive their own recovery.”

enableme is a world-first online platform, bringing together the ability to set personal goals, information, advice, support and connection with stroke survivors, carers and families. The site features cutting edge accessibility features that can be customised to meet stroke survivors’ individual needs including vision, communication and mobility issues.

The Bupa Health Foundation Executive Leader Annette Schmiede said the Foundation was proud to support the development of a tool that will make such a big difference for stroke survivors, their families and carers Australia-wide. “enableme takes long-term recovery away from the traditional ‘bricks and mortar’ model to deliver personalised support anywhere and anytime,” Ms Schmiede said.

“It will give control back to stroke survivors and their loved ones, providing them with the personalised support they need to make the best of life after stroke.

“The Bupa Health Foundation is a passionate advocate for projects that have a tangible impact on community wellbeing, and enableme is a great example of this.

We are pleased to partner with the National Stroke Foundation on the development of a tool that has the potential to positively impact thousands of Australians.”

Dr Lalor said National Stroke Foundation had collaborated with survivors, their families, carers, and health professionals, to develop enableme ensuring it delivers the right support, in the right way to help people thrive after stroke.

“This platform has the power to dramatically improve the lives of stroke survivors as they take control of their recovery with the support of fellow stroke survivors and carers in the enableme community,’’ she said.

“In addition to bringing together information and resources enableme is a safe place where survivors, carers and families can connect to share tips, challenges and aspirations.

“We want enableme to become Australia’s largest stroke community to cheer each other on to reach their goals and to be there for each other when things get tough.”

To find out more or to become part of the enableme community visit: www.enableme.org.au www.bupa.com.au/Health-Foundation

L-R: Speakers and Panellists from enableme Launch A/Prof Julie Bernhardt, National Stroke Foundation Research Advisory Committee; Kevin & Karen English, Stroke Survivor and carer; Dr Erin Lalor, CEO National Stroke Foundation; Bill Gasiamis, Stroke Survivor; Annette Schmiede, Executive Leader Bupa Health Foundation.

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Spring 2015

Two Leaders In Schizophrenia Research Join Forces The recent merger between NeuRA – Neuroscience Research Australia – and Schizophrenia Research Institute allows researchers to work in close collaboration with each other, have greater access to resources and research facilities as well as increased opportunities to obtain shared funding.

The head office of the Schizophrenia Research Institute (SRI) has completed its relocation to NeuRA’s Margarete Ainsworth Building in Randwick following the announcement in May of a merger between the two institutes.

“The decision to merge with NeuRA made good sense to the board,” says SRI board chairman Norbert Schweizer. “NeuRA is world-renowned for its schizophrenia research, so consolidation will greatly enhance the Institute’s research and give increased impetus to our efforts to better understand schizophrenia and find a cure.”

The Schizophrenia Research Institute was a “virtual” institute set up in 1996 that oversaw the allocation of funding to a network of schizophrenia scientists located in various sites around the country. Now, research will be centred at the NeuRA premises. “It’s a pretty exciting time,” says NeuRA CEO, Peter Schofield. “The largest single site of SRI’s activity was at NeuRA, so the partnership was, in one sense, already obvious.”

“The State Government understood the importance of SRI’s clear focus but didn’t

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have any funding schemes to support the SRI’s virtual model,” says Prof Schofield.

“They encouraged consolidation of research activities around the research hubs in the state and it seemed to us that the most obvious partnership for SRI was with NeuRA.” In May, the New South Wales Minister for Medical Research, The Hon. Pru Goward, announced a $2.5 million grant to support the amalgamation of NeuRA and the Schizophrenia Research Institute.

“The best outcomes for the treatment of schizophrenia will be achieved through the opportunity of these institutes to join forces and share their resources, expertise and knowledge,” said Minister Goward.

This support was further enhanced by a $10 million capital grant awarded to NeuRA by the Minister for Health, The Hon. Jillian Skinner, to complete refurbishment of the Margarete Ainsworth Building and enhance the work of NeuRA and the Schizophrenia Research Institute.

The merger will also include SRI’s signature research infrastructure programs, the Australian Schizophrenia Research Bank,

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the Schizophrenia Library and TRC brain collection. NeuRA and SRI are committed to a policy of open-access to allow schizophrenia researchers continued support to these resources, which will contribute to their world-class studies.

“The advantage of coming together is that we have a larger critical mass of researchers working on a common dedicated problem,” says Prof Schofield.

“And we can support them with research infrastructure. The ASRB is a repository of information and samples. The brain tissue collection that SRI has supported aligns with NeuRA’s Sydney Brain Bank. These things will help bring the researchers even closer together.”

“The research agenda will not change,” Mr Schweizer says. “Both SRI and NeuRA have and will continue to maintain a focus on discovering the ways to better treat, prevent and cure schizophrenia.” www.neura.edu.au r Tom Weickert and Prof Cyndi Shannon D Weickert are among many scientists who will benefit from the NeuRA-SRI merger

Spring 2015

Potential Breakthrough In Cancer Treatment Researchers at the Centenary Institute in Sydney have uncovered new information about an enzyme called DPP9 that they believe to be a potential therapeutic target for limiting tumour growth and its ability to spread to and in the liver.

Centenary’s researchers have shown that the DPP9 enzyme can regulate human liver cancer cell growth and movement.

In addition, they have bred mice that lack DPP9 and shown that newborn mice need the enzyme to survive, highlighting its importance.

Gorrell’s team includes talented PhD Students Katerina Ajami, Denise Ming Tse Yu, JooHong Park, Tsun Wen Yao, Yiqian Chen and Hui Emma Zhang who have all played key roles in the results achieved. www.centenary.org.au

The results have shown that up to 100 molecules in the human body are probably de-activated by DPP9 and many of these play important roles in either immunity or in regulating energy use and storage. The power of this enzyme is so great that it needs to be regulated. The aim of the next phase of the research is to discover how the cells of the body achieve this naturally.

Associate Professor Mark Gorrell, who discovered DPP9, is currently undertaking an extensive study of the enzyme and its functionalities. He and his team are aiming to discover what key molecules are deactivated by DPP9 and therefore how to exploit the enzyme’s functionalities for clinical use. The research could lead to major breakthroughs in the treatment of cancer, as well as in understanding the immune system and growth of stem cells.

The team is following the same strategic approach that led to the discovery of the functions of a similar enzyme, DPP4, the most successful new diabetes drug target this century and the safest. By focusing on the mechanisms of the enzyme from a basic biochemistry perspective, they are developing an understanding of how it acts inside both normal cells and cancer cells.

The work to date has recently been published in the highly prestigious FEBS Journal, the leading journal of the Federation of European Biochemists.

This paper itself is a close collaboration with Dr Andrew Stephens and his staff at Hudson Institute of Medical Research at Monash University as well as involving Dr Ruth Geiss-Friedlander of Georg-AugustUniversity in Germany. Associate Professor

ssociate Professor Mark Gorrell who is A the Head of our Molecular Herpetology Laboratory

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Spring 2015

Blood Clot Breakthrough Paves Way For Safer, Better Drugs Australian scientists have discovered a blood clotting enzyme with the potential to better protect thousands of Australians from heart attacks and stroke.

A new class of drugs more powerful and effective than aspirin in blocking clots is on the horizon following a breakthrough by a collaborative team of researchers from Monash University, University of Melbourne, Walter and Eliza Hall Institute of Medical Research, University of Strasbourg, France and the Scripps Research Institute, United States.

The team, led by Professor Shaun Jackson (now the Director of Cardiovascular Research at the Heart Research Institute and the Charles Perkins Centre) has revealed for the first time that an enzyme, called Class II PI 3-kinase, plays a vital and unique role in controlling clotting of the blood.

“We’ve discovered this enzyme has the very special ability to reduce build-up of blood clots that clog arteries while also sticking blood firmly to the site of blood vessel injury,” says Prof Jackson, whose research is published this month in the prestigious journal Nature Communication.

“With these two qualities working in tandem, this enzyme offers huge potential as a new medication to thin blood without causing too much bleeding, as current drugs do.”

The study was a collaborative effort involving scientists from Monash University, University of Melbourne, Walter and Eliza Hall Institute of Medical Research, University of Strasbourg, France and the Scripps Research Institute, United States.

Heart attacks and stroke are the leading causes of death and long-term disability in Australia. Each year, about 55,000 Australians have a heart attack – about one every 10 minutes – and a further 35,000 are hospitalised after having a stroke.

Both conditions are typically caused by blood clots in the circulation of the heart or brain.

Blood thinners like aspirin and warfarin are commonly used to prevent clots, with hundreds of thousands of people worldwide taking them daily to keep strokes and heart attacks at bay.

The problem, says Prof Jackson, is that these popular medications can cause

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Professor Shaun Jackson – Director of Cardiovascular Research at the Heart Research Institute and the Charles Perkins Centre

life-threatening bleeding in frail or high-risk patients.

Monash PhD student Dr Jessica Mountford, under guidance from Prof Jackson and cosupervisor Dr Justin Hamilton, went looking for new therapies that could prevent blood clotting without increased bleeding.

Initially the team identified an entirely new class of anti-clotting medicines that target an enzyme called ‘PI 3-kinase’. Recently trialled in humans, these drugs have been proven to be safe and effective anti-clotting agents.

In a new breakthrough, the researchers have identified another blood clot controller from the same PI 3-kinase family. Called class II PI 3-kinase, this enzyme has the unique ability to regulate the membrane structure of blood platelets.

This is different from the class I PI 3-kinases, which primarily regulate the ‘activation’ and ‘stickiness’ of platelets, Prof Jackson says.

“New therapies that block the function of both these types of PI 3-kinases would be very powerful anti-clotting agents indeed,” he says.

The discovery was made all the more exciting by the element of surprise. “The function of this enzyme has been a mystery for decades so to discover what its role is and realise its importance is a thrill.”

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The team is now working to translate the discoveries into safer and more effective blood thinners to stock pharmacy shelves.

“Frustratingly, Australians could be popping these new and better medications right now if it wasn’t for commercial issues,” Prof Jackson says.

“But we need extra funding and backing from an Australian or international biotech or pharmaceutical company to make that become a reality for all those thousands of Australians who can benefit.”

The heart health breakthrough is the latest in a string of headlines for this enzyme family which has already been found to have an important role in causing inflammation and some types of cancers.

“This is an exciting area of research as new medicines that inhibit PI 3-kinases represent one of the most promising new ways of treating disease,” Prof Jackson says. www.hri.org.au

Spring 2015

Pioneering Minds Come Together To End MND Motor neurone disease (MND) is a progressive, fatal, neurodegenerative disease that kills two Australians every day. What is even more alarming is that the death rate is rising across the globe and with 90 percent of patients having no family history, it can seemingly strike anyone, any time.

MND researchers are working every day to stop this cruel disease. In a joint initiative, Macquarie University Hospital and the Faculty of Medicine and Health Sciences (FMHS) established the most comprehensive motor neurone disease (MND) research team in Australia. Five leading researchers with different scientific expertise – A/Prof Julie Atkin (cellular stress and trafficking), A/Prof Ian Blair (genetic causes), Prof Roger Chung (protein abnormalities and propagation), Dr Nick Cole (animal model – zebrafish) and Prof Gilles Guillemin (inflammation) – were recruited to tackle the disease.

With an empty laboratory space before them, the researchers from across the country were asked what they needed to stop MND, giving them the opportunity to create and build from scratch what is now Australia’s largest, dedicated MND research centre located at Macquarie University, also home to one of Australia’s largest MND clinics.

The MND clinic, headed by Professor Dominic Rowe AM, is where MND patients and their families meet for regular check-ups with health professionals such as neurologists, speech pathologists, physiotherapists and dieticians to help them manage the progression of the disease.

More than 40 researchers are now dedicating their working lives to finding the answers to stop the progression of MND. This team is at the forefront of identifying genetic and potential environmental triggers for the disease.

A/Prof Ian Blair, the lead genetic researcher at the centre, and a host of international collaborators have mapped approximately 60 percent of the genetic picture of the disease as a result of their comprehensive and integrated model of research.

All of this scientific knowledge is drawn together in zebra fish studies under the guidance of Dr. Nick Cole, unique to the Macquarie MND Research Centre.

Selected because of its unusually transparent body, the zebra fish enables researchers to use advanced microscopy techniques to visualise and observe its nervous system.

In 2012, Professor Rowe along with Professor Gilles Guillemin started collecting and storing family information, blood, urine and tissue samples from patients attending the clinic in the research centre’s biobank. With longitudinal information from more than 400 patients, the biobank has become the largest Australian resource from which researchers can draw.

“The biobank is now our most critical tool for research because it might help us to identify crucial genetic or protein biomarkers for the disease and give us some important clues about the cause of the disease,” Professor Guillemin said.

“With such biomarkers we could make a faster prognosis, more accurately characterise sub-types of MND and predict an individual patient’s response to treatment.”

The team is also looking at running some clinical trials in the near future.

“Therapeutic development for MND is unlikely to be a single ‘wonder drug,’” Professor Guillemin said. “Rather, a combination of therapies would be needed, with a number of drugs each targeting different pathways to slow it down or even stop it.”

“Collaboration, sharing information and coordinating approaches are, I think, some of the reasons that our understanding of the disease in Australia has grown rapidly over the past five years. Together, we hope to be able to stop this cruel disease.” www.mq.edu.au/mnd

rofessor Dominic Rowe AM P and Professor Gilles Guillemin

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Spring 2015

From Words To Action – Launching MQ Our charity, MQ: Transforming Mental Health was set up in 2013 to fill a major gap existing in the UK mental health charity landscape – one which can be represented by just one small figure: 0.3 pence. (or, less than one Australian cent).

This is the amount the UK general public donates to mental health research compared to every £1 that the Government puts in the pot. Almost 300 times less. What makes this figure particularly stark is when we compare it to other major health conditions.

General public donations to cancer outstrip Government spending almost 3 fold – £2.75 for each £1 Government investment. For heart disease it is £1.75.

Why is this? Truthfully, until now – the general public have never been asked.

There has never been a major fundraising charity in the UK dedicated solely to mental health research. Thanks to start up funding from the global research funder, the Wellcome Trust, MQ now has a major opportunity to fill this gap and change the landscape for good.

This matters. We know that major advances in healthcare can be driven by support from strong charities. Evidence the UK, where mortality rates for breast, bowel, lung and prostate cancer have fallen by a third in the last 20 years – and investments by Cancer Research UK (CRUK) outstrip those of all other funders in the field. Indeed, around the world, visionary and sustained streams of charitable funding have been critical to realizing medical advances from new technologies developed by discovery scientists.

If charities help us apply scientific discoveries for human benefit, then we must ensure that this happens in the field of mental health too.

The need couldn’t be greater: the lives of millions of people are affected by mental illness every day, yet we still know relatively little about these conditions. And with three-quarters of people with mental illness currently untreated, it’s clear we have a long way to go to improve things.

Of course, acknowledging and understanding the need is important, but it alone will not be enough to change the landscape of public giving to mental health research. We also need to make the case for research.

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ynthia Joyce, chief executive of MQ and Prof Pat McGorry AO, Executive Director of Orygen, C the National Centre of Excellence in Youth Mental Health

To do this, at MQ we are working to demonstrate the value and opportunity that research can bring to mental health.

We are beginning to show how research can be used to raise awareness of conditions, to speed up access to new treatments or interventions, and offer ways to prevent the impact of mental illness on future generations. We also need to show how public support matters.

The good news is – the timing for this could not be better. In the UK, as seen elsewhere internationally, mental health is beginning to get an increased public profile and attracting significant political commitment. We are, quite simply, talking about mental health more than ever before. Thanks to national campaigns in the UK, attitudes are starting to change.

Importantly, this fertile ground is also matched by an increasingly vibrant and exciting international mental health research landscape that is making

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important strides in tackling mental illness.

At a recent MQ international research meeting, Professor Shitij Kapur, the head of the UK’s Institute of Psychiatry, Psychology and Neuroscience said that we are at a particularly important ‘turning point’ in the sciences fundamental to mental health. In welcoming the advent of MQ’s charitable support, he also reminded us of this observation from Bill Gates: “We always overestimate the change that will occur in the next two years and underestimate the change that will occur in the next ten. Don’t let yourself be lulled into inaction.”

At MQ, we’re focused on action. We will be keeping these messages front and centre in our work as we begin the important journey to build this much needed mental health research charity.

And like Research Australia, we will demonstrate that research matters. www.joinmq.org

Spring 2015

A Prescription For Better Health Care – A Wiki In Your Pocket What if every clinician – and every one of their patients – had instant access to simple, accurate information on their smart phones or devices about any health issue or condition they might be dealing with, professionally or personally? Undoubtedly, the outcome would be better, more cost-efficient health care.

Getting the right health care to the right patients at the right time might seem like an unremarkable model for clinical success.

Yet in 2012 the landmark CareTrack Australia study revealed Australians currently receive such ‘appropriate’ health care in only 57% of consultations. That is, almost half of the care in Australia is not in line with best practice based on the latest medical evidence.

Today, the CareTrack team from the Macquarie University-based Australian Institute of Health Innovation, and their research partners, are turning the findings from NHMRC-funded CareTrack Australia into a road map for change. They are also embarking on a major follow-up study on the appropriateness of the healthcare provided to children, CareTrack Kids, to extend the benefits to paediatric care.

CareTrack Australia found today’s complicated and voluminous clinical guidelines are one major barrier to appropriate care. Clinical guidelines that are difficult to synthesize and burdened by duplication and out-of- date information discourage routine use. New brief, plain English, wiki-style guidelines for use on smart phones and other devices – and suitable for both clinicians and

patients – are being developed and piloted by AIHI researchers as a potential breakthrough solution.

CareTrack Australia was the first national snapshot of clinical care in Australia and only the second such study worldwide.

First published in the Medical Journal of Australia (MJA) in 2012, and widely cited since, it established critical baseline data. Although Australia does boast many pockets of excellence, the study identified some serious gaps in the quality of care for some common conditions, as well disparities in the standards of care provided by different medical practices.

For some conditions, such as coronary artery disease, nearly all Australian patients received very high levels of appropriate care. But there was poor compliance with appropriate care standards in others areas, such as responding to very high blood pressure, administering prophylactic antibiotics at the correct time before surgery, and treating sinusitis. CareTrack Australia studied 22 common conditions responsible for over 40 per cent of the total national disease burden.

Professor Jeffrey Braithwaite, Founding Director of the AIHI and one of the study’s

Chief Investigators, said US research indicates some 20-30% of today’s care delivers no benefits – the equivalent of up to $45 billion of wastage in Australia’s annual health spending. At the same time, the rate of harm to patients within the healthcare system remains unacceptably high, at 10% in hospitals.

As ageing populations and new healthcare technologies put increasing pressures on stressed healthcare budgets, we urgently need to simultaneously reduce costs and improve patient outcomes.

‘By identifying and understanding current shortfalls in appropriate care, AIHI’s CareTrack projects are providing unprecedented opportunities to build new, evidence-based solutions,’ he said.

Innovating to deliver better quality care This includes informing a simpler, electronic approach to clinical guidelines aimed at making it ‘easy to do the right thing, and hard to do the wrong thing’. Led by Professor Bill Runciman (AIHI and University of South Australia), AIHI researchers are examining today’s complex clinical guidelines and piloting succinct new wikistyle guidelines for two common conditions, low back pain and gout. Although approximately 5% of low back pain requires expensive imagery, about 30% of patients are currently referred for scans. Likewise, gout is almost entirely preventable, highlighting the considerable potential benefits of enabling ‘appropriate care’.

‘We need to retire redundant, out-of-date and hard-to-use guidelines and provide quick, relevant, easy-to-use tools that are stored electronically and kept up to date,’ said Professor Runicman.

The pilot program will inform the development of a new wiki-style template to revolutionise clinical guidelines to both guide clinicians and let patients know what to expect, he said. www.mq.edu.au

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Spring 2015

Tailor-made Treatments for Childhood Brain Cancer More effective and less traumatic treatments may become a reality for children with brain and spinal cord tumours thanks to an $80,000 donation from the Brainchild Foundation.

The funds will support a unique brain tumour project led by researchers at The University of Queensland’s Institute for Molecular Bioscience.

In Australia there are approximately 200 new diagnoses of childhood brain and spinal tumours each year.

Brain cancer researcher and IMB Director Professor Brandon Wainwright said his team aimed to grow tumour tissue to analyse the genetic make up of a child’s tumour. This information could then guide researchers to develop a targeted treatment program for each patient and their tumour.

“This will allow us to test the tumour tissue first in a laboratory setting to see if treatments are effective before giving that treatment to a patient,” Professor Wainwright said.

“Current therapies are based on treating the average child, not the individual child and their unique tumour. We will analyse the genetic features of a patient’s tumour and use this information to develop individual treatments, which will mean more effective and less toxic therapies for children.”

Dr Martin Wood, a paediatric neurosurgeon at Lady Cilento Children’s Hospital and co-founder of the Brainchild Foundation, said this research offers the chance to revolutionise the way we provide treatment.

“The prospect offering a personalised treatment for children with brain tumours, rather than the current ‘one-size-fits-all’ therapy, is incredibly exciting,” Dr Wood said.

“The potential outcomes from Professor Wainwright’s research would make an enormous difference to an individual child, to be able to receive a treatment that has been tested and demonstrated to be effective on their tumour in the lab.”

“This will mean fewer treatment failures and fewer side-effects, which would be an incredible step forward and an evolution of our approach to treatment.”

Tissue from patients will be obtained by Dr Wood and his colleagues, and provided to Professor Wainwright’s lab for processing and implantation.

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Sue and Rod Field and their six children, including daughter Vienna (bottom right)

“We have a well-developed brain tumour banking system based at the Children’s Hospital which is available broadly, and I would like to see greater access to this tissue from laboratories around the world in order to address important questions about the biology and optimal treatment of these tumours,” Dr Wood said.

The need for research that can transform how children endure treatments for brain and spinal cancer, is one reason Dr Wood was motivated to create the Brainchild Foundation.

“I felt childhood brain tumours were the ‘poor cousin’ in terms of research funding and activity, compared to other diseases supported by well-established foundations,” he said.

“There were no other dedicated children’s brain tumour charities at the time we established the Brainchild Foundation and yet brain tumours in children were, and remain, the most common cause of death from cancer in childhood.”

“Working day in, day out with children suffering from brain and spinal cord

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tumours made it clear to me we have a long way to go in the treatment of these conditions, and in the provision of support to families enduring the treatment journey.”

“It would be very rewarding to see this research reach fruition.”

Sue Field watched her daughter Vienna undergo surgery, radiation and chemotherapy after she was diagnosed with a medulloblastoma at seven years of age. Vienna suffered side effects from her treatment including nausea, high blood pressure, blisters, sores and weight loss. She now has permanent baldness behind her ears, hormonal issues and the possibility of learning difficulties.

“I’m passionate about having more humane treatment options,” Ms Field said.

“If you could test a child’s tissue and find out that a particular treatment isn’t going to have any effect, then you could cut it out and alleviate some of the child’s suffering, improving their quality of life and perhaps reducing some of the long-term effects.” www.imb.uq.edu.au

Spring 2015

QIMR Berghofer Gains Licence To Produce T-Cell Therapies Promising new immune therapies for cancer treatment are a step closer following major advances at the QIMR Berghofer Medical Research Institute.

The Brisbane-based Institute has obtained the first approval in Australia to produce clinical grade experimental T-cell therapies, opening the way for new clinical trials.

The therapy against virus-specific cancers has been developed in the laboratory of QIMR Berghofer’s renowned tumour immunologist, Professor Rajiv Khanna.

The technique involves taking a patient’s T-cells from a blood sample, modifying and effectively training them to attack the virus, and then returning them to the patient’s body.

When the ‘killer’ T-cells destroy the virus, they also destroy the cancer.

Preliminary trials have shown the therapy is safe, has no major side effects and can be effective against tumours including the aggressive brain cancer, glioblastoma multiforme (GBM).

QIMR Berghofer Director and CEO Professor Frank Gannon said the Therapeutics Goods Administration (TGA) approval enables the Institute to initiate new clinical trials.

“This approval will allow our manufacturing facility Q-Gen to prepare therapeutics including cytotoxic T-cell therapies for patients with cancers such as GBM and nasopharyngeal carcinoma (NPC),” Professor Gannon said.

“QIMR Berghofer is focused on producing research with outcomes beyond the laboratory, and this is an excellent example of our efforts to get laboratory discoveries through clinical trials and to the hospital bedside.”

Professor Gannon said Q-Gen has a strong commercial track record and continues to work with industry in the manufacture of therapies to Good Manufacturing Practice (GMP) standards.

which found that many brain tumours carry cytomegalovirus (CMV).

Immunotherapy is a rapidly emerging research area in the oncology divisions of major international pharmaceutical industries and academic centres of cancer medicine.

Professor Khanna has successfully used similar technology to target nasopharyngeal carcinoma (NPC) – an aggressive throat cancer prevalent in South East Asia.

The QIMR Berghofer Centre for Immunotherapy and Vaccine Development includes more than 200 staff and students across 14 laboratories, focused on mobilising the immune system to fight cancer and autoimmune diseases.

“The common herpes virus, Epstein-Barr virus (EBV) is present in the NPC cells and provides the immunotherapy target,” Professor Khanna said.

Professor Khanna has shown in Phase I clinical trials of his t-cell therapy in patients with recurrent GBM, most participants lived much longer than the six-month prognosis normally given, and some showed no signs of disease progression.

The trials were conducted in collaboration with Dr David Walker at Brisbane’s Wesley Hospital and built on previous research

“In a Phase I clinical trial for NPC, overall survival rates for immunotherapy patients was 523 days, compared to only 220 days in patients who did not receive the treatment. This Phase I clinical trial was conducted in collaboration with Queen Mary Hospital in Hong Kong.”

Professor Khanna’s group is also collaborating with various clinical centres in Australia to develop adoptive immunotherapy for Hodgkin lymphoma and other B-cell lymphomas which are associated with EBV. QIMR Berghofer’s immunotherapy program is funded under a major Flagship Research Program on Cancer Immunotherapy which is supported through the Rio Tinto Ride to Conquer Cancer.

Under this program, the Institute’s researchers are also developing a special immunotherapy bank which will be able to provide off-the-shelf cellular therapies for cancer patients.

Substantial progress is being made with several other types of immunotherapies at QIMR Berghofer, including antibodies that block immune checkpoint molecules. www.qimrberghofer.edu.au rofessor Rajiv Khanna’s research has P shown a new t-cell therapy is safe and effective against the aggressive brain cancer, glioblastoma multiforme (GBM)

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Spring 2015

More Investment Needed for Rare Cancer Research Rare or less common cancers (RCL) such as Neuroendocrine Cancers (NETs) are often overlooked by the health system; resulting in mortality of double that of the common cancers such as breast or prostate.

If one develops an uncommon cancer such as NETs one has only 40% chance of surviving 5 years compared with 90% chance of surviving 5 years with breast cancer.

These odds have not changed for decades.

As distinct from common cancers, every year there are over 42,000 diagnoses of rare and less common (RLC) and around 22,000 deaths. For these Australians with an RLC or NET cancer there is very little available, from patient support through to new treatment options however only 13.5% of the total research spend is allocated to this community. This figure makes very clear the correlation between research spend, burden of disease and mortality.

One of the more successful treatments for NET Cancer patients is Peptide Receptor Radionuclide Therapy (PRRT) or ‘Lutate’.

PRRT is a combination of radionuclide (lutetium-177) and peptide which is taken up by the NET cancer cells and interferes with their growth. Administered as an outpatient in expert nuclear medical departments, it has minimal side-effects and remarkable results – greater than 70% of NET patients achieve stable disease, and in some cases, remission. For NET cancer patients this therapy is the “silver bullet”, however, it is not TGA registered, needs more research and is funded under the Special Access Scheme. In 2014, after active lobbying of the NSW State Government by the Unicorn Foundation and NET Cancer patients, funding was secured for 90 NSW patients, saving each $20,000 per annum for four cycles of treatment.

The success of PRRT in the management of NET has motivated the Unicorn Foundation to contribute to the funding of the world first multicentre trial into the use of PRRT compared with current chemotherapy to control neuroendocrine cancers.

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CONTROL NETs is a phase II Randomised Controlled Trial comparing the combination of capecitabine (CAP), temozolomide (TEM) (CAPTEM) and peptide receptor radionuclide therapy (PRRT) for the treatment of advanced pancreatic or midgut neuroendocrine tumours that are unsuitable for surgery.

It is being led by the Australasian GastroIntestinal Trials Group (AGITG) and coordinated by the National Health and Medical Research Centre Clinical Trials Centre (NHMRC CTC) with the early phase of the trial being solely funded by the Unicorn Foundation to the amount of over $200,000. Subsequent funding grants are being sought from the NHMRC and Cancer Australia to support completion of the study. PRRT and chemotherapy with CAP and TEM either in combination or individually have shown promising activity in earlier research, but the results of this trial will significantly add to the body of literature and importantly, have a positive impact on the quality of life of Australian NET patients.

outcomes of patients with NET Cancers.

We thank our enthusiastic and passionate patients and their families in helping us raise funds for services and research.

The mission of the Unicorn Foundation is; to assist and support patients and carers, through support groups and access to networks of expertise; to lobby for access to new and appropriate investigations and treatments; to raise awareness and knowledge of neuroendocrine cancers within the medical community and general public; to encourage and support Australian based research in the area of neuroendocrine cancers. www.unicornfoundation.org.au

About The Unicorn Foundation Australia The Unicorn Foundation was formed in 2009 by Dr John Leyden (Chair and co-founder) and Simone Leyden (CEO and co-founder) due to the experience they had with their sister Kate’s diagnosis with Pancreatic Neuroendocrine Cancer.

The Foundation receives no government funding and is an independent medical not for profit directed towards improving the

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o-founders of the Unicorn Foundation, C Dr John Leyden and sister Simone Leyden

Spring 2015

Ensuring Equity For Country Kids: A Tele-Speech Program

Clinician, Catherine Linton-Clowes

For 90 years Royal Far West has transformed the lives of thousands of disadvantaged and vulnerable Australian children and their families. We strive to make an outstanding contribution to children with complex health and behavioural disorders, developmental delays and mental health problems who live in rural and remote NSW and cannot access specialised services. We aim to improve health outcomes for country kids, and build resilience and capability for every child, their family and the communities that support them.

Rural communities experience more health issues and social disadvantage compared to people in urban settings. They also have less access to health care. Families living in rural and remote areas of Australia account for 34% of the country’s population, however only 3.9% of Australia’s speech pathologists are primarily employed in these areas.

Children with communication disorders are at an increased risk for associated cognitive, academic, behavioural, social and psychological difficulties. Left untreated, children are likely to experience social rejection from peers, low selfesteem, social anxiety and anti-social tendencies. In the long-term, speech and communication difficulties in adulthood can limit employment opportunities, the ability to initiate and maintain relationships and increase the chances of criminal behaviour.

In light of these findings, the early identification of language and

communication difficulties and implementation of appropriate intervention is crucial in curtailing the compounded disadvantage experienced by children from rural and remote areas. The Come N’ See Tele-speech program was developed

by Royal Far West in partnership with the University of Sydney in 2013 in response to these concerns and aims to eliminate the barriers of distance and access. In 2 years over 585 children from 72 schools have participated in the program.

The Come N’ See Program Children are referred into the program by their schools. The tele-speech sessions are run through GoToMeeting. Children use web-cam enabled laptops with headsets to communicate with Speech Therapists based in Sydney. Therapy sessions are delivered in school hours and parents are encouraged to attend if possible.

The program is operated on a term by term basis. In a standard 10 week term the program involves two initial 30 minute assessment sessions with each child, followed by parental follow up. Here the Speech Therapist in collaboration with parents set individualised therapy goals for each child. The child then completes six, 30 minute therapy sessions. Following completion of the program clinicians send reports to each child’s parents and school.

The program is evaluated using the Goal Attainment Scale (GAS), a technique for evaluating an individual’s progress towards goals. This technique has been used for over 40 years to evaluate the therapeutic outcome of paediatric services for children with developmental, physical and communication needs. Each child works towards one or two goals over the duration of the 6 therapy sessions.

Across 2 years of implementing the Come N’ See program, 82% of children met or exceeded at least one of their therapy goals. Therapy goals included using and understanding language, pre-literacy skills, speech sound production and fluency (stuttering).

The Come N’ See Program has improved the language and communication skills of children living in rural Australia, and is a cost effective solution to overcoming barriers to accessing speech, language and communication therapy for rural families and children. Delivering therapy sessions via teleconferencing directly into schools ensures that children experience minimal disruptions to their education. Children find the experience novel and feel comfortable using technology, thus enhancing their engagement and achievement within the program. The early identification and appropriate intervention provided by the program is crucial to limiting disadvantages experienced by children with language and communication issues. www.royalfarwest.org.au

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Spring 2015

New Journal A Nexus Between Research And Practice Promoting the nexus between health research and practice is at the heart of a new high-quality, peer reviewed public health journal launched by The Sax Institute.

Public Health Research & Practice, an online-only open access journal, is focused on research that is meaningful to those working in public health, says Editor Ms Anne Messenger. Guided by an expert editorial board chaired by Editor-in-Chief and Sax Institute CEO Professor Sally Redman, it is targeted at public health decision makers and practitioners, as well as those whose work encompasses aspects of public health.

“Our point of difference is our strong commitment to connecting public health decision makers and practitioners with research that has direct relevance to their work,” said Ms Messenger. “Our journal aims to make a real-world impact on public health policy and practice.”

The journal aims to publish high-quality papers with a special focus on innovations, data and perspectives from policy and practice. It represents a new direction for the NSW Public Health Bulletin, published for nearly a quarter of a century by the NSW Ministry of Health.

high-quality quit support, and targeted and tailored approaches for groups with high smoking prevalence – has contributed to this country’s continued decline in smoking”.

The journal showcases new research looking at how to reduce smoking rates further, including papers on tobacco regulation, ways to help reduce smoking in Indigenous communities, making healthcare facilities smoke-free, and on how our history of tobacco consumption is still affecting mortality rates from cancer.

A paper on smoking-attributable cancer deaths in NSW by researchers from the Cancer Institute NSW and the World Lung Foundation, Victoria, shows that smoking is responsible for an increasing proportion of cancer deaths in NSW women and that lung cancer has now overtaken breast cancer as the largest cause of female cancer death.

And tobacco treatment specialist Dr Colin Mendelsohn explores how the new NSW Health Smoke-free Health Care Policy creates a unique opportunity to assist

smokers who are hospitalised to quit permanently in a supportive environment when motivation to quit is high.

Ms Messenger said the most recent issue also included a paper on a growing phenomenon in public health – the use of social media. Professor Simon Chapman and Dr Becky Freeman’s fascinating article reveals the most-followed Australian Twitter accounts in health and medicine, with personal trainer and TV personality Michelle Bridges (@MishBridges) coming out as number one.

The Sax Institute’s mission to drive the use of research in health policies programs and services was at the heart of Public Health Research & Practice, and the journal would focus on innovations, data and perspectives from policy and practice, she said.

Researchers are welcome to submit manuscripts and can subscribe to receive quarterly e-alerts when the journal is published, make suggestions about themes or topics for future issues, and follow the journal on Twitter @phrpjournal www.phrp.com.au

Since its launch late last year, the journal has already attracted almost 1500 subscribers, Ms Messenger said.

The first issue focused on systems thinking in chronic disease prevention while the recently published Issue #3 explores developments in tobacco control and opportunities for policy makers and practitioners to work to reduce the burden of tobaccorelated disease.

Guest editor, Dr Jo Mitchell, Director of the Centre for Population Health at NSW Health, writes: “There is general consensus that Australia’s comprehensive approach to tobacco control – strong regulation at federal and state levels, sustained community education, ©iStock.com/SaxInstituteComms

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Spring 2015

The Exact ‘Where’ And ‘How’ Of HIV Infection

Researchers at Westmead Millennium Institute for Medical Research have discovered how the HIV virus circumvents the body’s early warning system at the very first point of viral contact, and they now have a better understanding of how the virus gets a toe-hold infection in patients.

The research, recently published in the leading journal for virus research, Journal of Virology, has shown that when HIV infects the first cells it contacts during sexual transmission the virus completely shuts down their natural ability to warn other cells of the threat.

Usually, a virus-infected cell releases interferons which act as an early warning system to other cells nearby, alerting them that they are infected with a virus. The nearby cells react by heightening their antiviral defences to prepare for the oncoming viral infection so they can fight it off.

Lead investigator, Dr Andrew Harman, from Westmead Millennium Institute’s Centre for Virus Research says, “Our research

has shown three main things: how the virus reacts with two types of cells at the point of infection, the exact point in the interferon signalling pathway that the virus targets, and also which viral proteins are involved. “Our ability to identify the precise mechanism by which HIV shuts down the interferon system is a new and exciting finding in HIV research,” said Dr Harman.

The research opens a path for exploring drug treatments which block the virus’ ability to shut down the cells’ warning system, restoring the body’s ability to detect HIV and better defend itself from infection.

Dr Andrew Harman and Najla Nasr

Pre-infection treatment is an important consideration for countries where the high rate of unprotected sex is resulting in alarming HIV infection rates to essentially vaccinate vulnerable populations against infection.

Post-infection treatment is also worthwhile investigating as it takes a while for the virus to take hold of the immune system and there is a short window where treatment could prevent virus getting a toe-hold in people who have been exposed to the virus. www.wmi.org.au

Potential avenues of investigation could include pre- and post-sexual transmission treatment.

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Spring 2015

World First Statin Trial Launched In The Elderly Monash University has launched the world’s largest study to investigate whether statin treatment prolongs good health and maintains independence amongst healthy individuals aged 70 years and over.

The study is a collaboration between Monash University, The Menzies Research Institute (The University of Tasmania), Australian National University, University of Western Australia and Curtin University.

STAREE (Statin therapy for Reducing Events in the Elderly) is a randomised double-blind placebo controlled trial, coordinated by the School of Public Health and Preventive Medicine at Monash University, and led by Principal Investigator Professor Sophia Zoungas. The study is being conducted with General Practitioner co-investigators. Participant visits and data collection are undertaken by the STAREE research staff.

Statins (referred to as HMG-CoA reductase inhibitors) are a specific class of drugs that assist in lowering circulating low-density lipoprotein (LDL) cholesterol levels by blocking an enzyme in the liver that is essential in cholesterol synthesis.

“The reduction of LDL cholesterol, known as the ‘bad’ cholesterol, can lower the risk of developing cardiovascular disease including myocardial infarctions or stroke,” Professor Zoungas said.

“Evidence indicates that between 18-55% of reductions in LDL cholesterol can be attributed to the use of statin treatment.”

It has long been known that by reducing cholesterol, statins prevent heart attacks and strokes in people with a history of cardiovascular disease and the use of statins has become increasingly common with approximately 40% of Australians over the age of 65 utilising statins.

Recent clinical guidelines from the United States and United Kingdom advise that statins should also be utilised by those at

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rincipal Investigator Professor Sophia P Zoungas at the STAREE launch.

increased risk of a cardiovascular disease, including healthy people aged 75 and above as a primary preventive measure.

Despite this, there is uncertainty about the efficacy of statins for preventing cardiovascular disease in healthy elderly individuals. This is due to the lack of elderly participants included in previous statin trials.

“Overall the balance of risks and benefits of statins remains unclear in older people.

Most of the research into statins and health has been done in middle-aged people. While recommendations are for people up to 75 to take statins, there is no evidence that drugs are beneficial, or indeed harmful, in the older age group,” Professor Zoungas said.

“STAREE is seeking to determine whether the use of daily statin therapy can maintain good health and extend independence in individuals aged 70 years or over, over an average of five years. It is also exploring

Research Australia grassROOTS SPRING 2015

if the use of statins can play a role in preventing disability in the elderly. STAREE is the first clinical trial of its kind to explore this hypothesis,” Professor Zoungas said.

“It is therefore hoped that the STAREE study can not only identify the direct impact of statins on elderly health outcomes but also answer important questions such as whether the use of statin treatment can prevent dementia or can be used to treat diseases such as Alzheimer’s disease.”

STAREE was launched on 22 June 2015 in Melbourne. Funding for STAREE has been provided by the NHMRC. The project has been awarded with the largest single project grant by the NHMRC. Ethical approval has been received from both the Monash University Human Research Ethics Committee and the RACGP National Research and Evaluation Committee. www.monash.edu

Spring 2015

Clinic Removes Barriers To Rehabilitation It could be a truck driver with a bad back or a remote-area child struggling to speak or read. It could be a grandmother suffering from Parkinson’s disease or a sports competitor with a debilitating injury.

The possible beneficiaries of the groundbreaking University of Queensland Telerehabilitation Clinic are limited only by imagination – and certainly not by geography or mobility.

Professor Deborah Theodoros and Associate Professor Trevor Russell of the School of Health and Rehabilitation Sciences said the recent launch of the $500,000 clinic heralds the latest step in the digital health revolution.

“More than a third of Australians live outside metropolitan areas, and they generally suffer poorer health and lower life expectancy than their city counterparts,” Professor Theodoros said.

“Poor access to timely and adequate healthcare leads to lower quality of life.

Telerehabilitation combats this by reducing time and travel requirements, and connecting patients via telecommunication technology.

“From their home, school or community centre, people can access a service which has been developed by some of the world’s leading experts.”

The clinic will work with people suffering physical disability, musculoskeletal pain, and speech and language disorders.

It will be Australia’s first telerehabilitation clinic, and among the first in the world.

“Research shows that assessments and therapy via telecommunication are equivalent to traditional clinical encounters,” Dr Russell said.

“All that patients require is a computer, iPad or laptop, as well as a reasonable internet connection such as ADSL or 3G mobile internet.

“There will also be some capacity for loans for individuals and community groups that don’t have suitable equipment.”

The clinic has been made possible in part by a $1 million philanthropic grant

by The Bowness Family Foundation.

Mr Bill Bowness, now chairman of the Wilbow Group investment company, is a UQ graduate who overcame financial hardship and a severe stutter to forge a successful career.

The clinic will enhance the education of health and rehabilitation science students by exposing them to the next generation of health care delivery. www.health-clinics.uq.edu.au/ telerehabilitation

UQ Physiotherapy and Occupational Therapy students provide an interprofessional paediatric session in the client’s home, under the supervision of a clinical educator

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Spring 2015

Revolutionising Research With Information Technology Intersect is a full-service “eResearch” agency which underpins researchers’ efforts by providing innovative data and computing technologies and expert advice. We work closely with our member research institutions to help them realise their ambitions of conducting data-intensive research underpinned by cutting-edge IT tools and methods, and much of this activity occurs in health and medical research.

Intersect has had a long relationship with the Schizophrenia Research Institute and has supported their efforts since 2009 to build the globally renowned Australian Schizophrenia Research Bank (ASRB). The ASRB is now utilised by over 21 national & international institutes to underpin their research efforts.

Early on in the collaboration, Intersect identified the ASRB project as having high community value and committed $900K pro bono to its development. From 2009-2010 Intersect rebuilt the existing database, built a web interface and tools to enable authorised researchers to search, filter and browse the content of the ASRB database, link descriptions to MRI-scan images and to download these images and other genetic and clinical information.

With increasing researcher use and over time, it became clear that further enhancement was required and Intersect identified potential funding through the National eResearch Collaboration Tools and Resources (NeCTAR) project. In 2011, Intersect and the Schizophrenia Research Institute worked closely to complete a successful application for NeCTAR funding to enhance the ASRB, and Intersect continued as the development partner through 2012-2013.

provide a better understanding of cancer biology. The project entitled ‘Exploring the Dark Matter of Cancer Genomes’ is funded by the Cancer Institute NSW. Analysing non-coding regions of publicly available cancer genomes (from The Cancer Genome Atlas in USA) it explores the possibility that genetic mutations in these regions of the human genome can lead to cancer. Identification of these mutations will not only bring a better understanding of cancer biology, but can immediately provide new ways to personalise therapy for cancer patients. In the longer term, it may also allow novel drug treatments to be developed for cancer.

In order to conduct these analyses, Dr Wong’s team needed to intensively analyse the large amount of data (>250 terabytes) held in the USA. To make this vision a reality, Intersect provided data storage in Australia, a mechanism to efficiently download large amounts of data from the US directly into storage, as well as co-located High Performance Computing which made it possible to analyse the data efficiently.

Without the resources and expertise offered

by Intersect, this research would have taken a considerably longer time.

Since the establishment of the ASRB online database, more than 76 studies into schizophrenia have been undertaken using the database, 58 of which are ongoing. Upwards of 68 papers have been published including a landmark study published in Nature Genetics where the ASRB collection was used by a major international psychiatric genetics consortium and led to the replication of known genetic susceptibility loci and the discovery of several new associations. The ASRB has led to the training of dozens of early career researchers and clinicians, building expertise across the disciplines of psychology, IT, genetics and neuroimaging.

Intersect is also helping Dr Jason Wong at the Lowy Cancer Research Centre to

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Looking forward, Intersect is leading a national initiative to build “med.data.edu.au”, to provide Australian medical and health research organisations with petabyte-scale research data storage and related high-speed networked computational services. This project is funded by the Commonwealth Government Department of Education, through the National Collaborative Research Infrastructure Strategy (NCRIS). med.data.edu.au is being built, hosted and operated by several organisations, each being a “node” of the facility and based across Australia: Intersect (NSW); QCIF (QLD); VicNode (VIC), TPAC (Tas) and eRSA (SA). med.data.edu.au will provide substantial underlying infrastructure to support the storage, retention, collaboration and reuse of health and medical research data. www.intersect.org.au

he Australian Schizophrenia Research T Bank is one of many medical research tools developed by Intersect increasing research productivity

Ice Bucket Challenge Pours Over $1.1 Million Into Motor Neurone Disease Research

Spring 2015

The collective goodwill of the people of Australia who doused themselves with icy water in August and September last year has provided the funds for the largest grant ever awarded by the Motor Neurone Disease Research Institute of Australia (MNDRIA).

ND researchers from the M Queensland Brain Institute brave the icy water during the Ice Bucket Challenge 2014

According to Professor Wray the biology of MND is complex and poorly understood, but there have been important advances in MND research in recent years.

“These advances have been driven, almost entirely, by gene discoveries from the small number of families with more than one affected individual,” she said.

However, for the vast majority (90% of all cases) of those with MND the diagnosis is sporadic, meaning they are an isolated case with no family history of the disease. Recent developments in technology have revealed that people with sporadic MND may have genetic changes that could be risk factors for MND.

The search for new risk genes and therapies to treat motor neurone disease (MND) is set to accelerate with the award of the $1.05 million MND Australia Ice Bucket Challenge Grant that will bring together clinicians and researchers from Australia’s leading MND centres to form the Sporadic ALS Australian Systems Genomics Consortium (SALSA-SGC).

This is the largest collaborative MND project to be undertaken in Australia.

It will be led by Professor Naomi Wray of the University of Queensland’s Queensland Brain Institute (QBI) and Associate Professor Ian Blair of Macquarie University’s MND Research Centre. The consortium comprises sixteen researchers from nine MND centres across Australia as well as international collaborators.

“The initial aims of SALSA-SGC are to ensure all the major MND clinics in Australia are collecting DNA and clinical data from all patients in a consistent way, both at their first visit and longitudinally over time,” said Professor Wray.

“This means that those affected by MND today will provide a long-term gift to research as the biobanked samples can be used for both current and future genetic studies.”

Once DNA and clinical data is collected, SALSA-SGC aims to collectively identify new risk genes through whole genome analysis. The researchers will also contribute to the largest international collaborative genetic study of sporadic MND ever conducted, called Project MinE. Project MinE aims to understand the genetic basis of MND by analysing the DNA profiles from at least 15,000 people living with MND and 7,500 control subjects across the world. An additional $100,000 of Ice Bucket Challenge donations was

last year awarded to Associate Professor Ian Blair as start-up funding for Australia’s participation in Project MinE. “The technology for undertaking genetic studies has been a limiting factor which is why sporadic MND has been little studied, but now continuing advances in technology means that the availability of biobanked samples linked to detailed clinical records is a limiting factor. The Ice Bucket Challenge Grant has provided an opportunity to generate a research resource to fill this gap and benefit MND research for many years,” said Professor Wray.

MNDRIA aims to improve the future of people with MND by promoting and funding research to understand the causes, find effective treatments and discover cures for MND. MNDRIA is the research arm of MND Australia and a major driving force behind MND research in Australia: www.mndresearch.asn.au

“Every August Until A Cure”: 2015 ALS / MND Ice Bucket Challenge The Ice Bucket Challenge was initiated by two people living with ALS/MND in the US, Pete Frates and Pat Quinn. When receiving an award recently Pat Quinn announced in his five-word limit acceptance speech “Every August Until A Cure”.

Pat and Pete will recreate the start of the Ice Bucket Challenge on 31 July 2015 and will be highlighting the need to continue the flow of funds for care and research until we have a cure.

Get your buckets ready!

Research Australia grassROOTS SPRING 2015

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Spring 2015

Critical Discovery In Muscular Dystrophy Research

Smchd1 is responsible for ‘silencing’ other genes, and is dysfunctional in people with a form of muscular dystrophy

Facioscapulohumeral muscular dystrophy (FSHD) is a progressive wasting disease that affects the face, arms and shoulders. It is most commonly diagnosed in teenage or early adults, and though it is rarely fatal it is very debilitating.

FSHD is inherited from the child’s parents and affects one in 8000 children. No treatments or cures are currently available for the disease.

A research team led by Dr Marnie Blewitt, Dr James Murphy and Ms Kelan Chen from the Walter and Eliza Hall Institute investigated the gene Smchd1, which is dysfunctional in people with a form of the disease called FSHD2.

Ms Chen said that, as part of the study, the researchers duplicated the genetic changes found in some patients with FSHD2 to understand how the ‘mutation’ leads to disease.

“Our colleagues at the University of Leiden in the Netherlands work with patients who have FSHD2 and have been studying the genetic changes in these families,” Ms Chen said.

“We reproduced in the lab the genetic change to Smchd1 found in one of the families to better understand how this mutation alters Smchd1 and its ability to function in the cell. We discovered that just a single change to one molecule that makes up the DNA can affect the ability of Smchd1

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to reach and bind to the DNA properly, and it is no longer able to do its job.”

Dr Blewitt said this fundamental understanding of how Smchd1 functions would help researchers to develop future treatments for FSHD. “FSHD is a progressive disease, and we don’t begin to see symptoms until the affected person is in their teens or early 20s,” Dr Blewitt said. “By understanding the function of Smchd1 and how mutations affects its function, we could in the long term develop drugs that would substitute for its activity and prevent the debilitating muscle wasting which occurs in FSHD.” Dr Blewitt said the gene Smchd1 – or ‘Smooch’ as she calls it – encodes an epigenetic factor that switched genes off to suppress their function. “Epigenetic factors are like the punctuation marks on the DNA that enables the cell to read and comprehend it correctly for the functioning of the cell,” Dr Blewitt said.

“We knew that Smchd1 was an epigenetic suppressor – a factor that switches off genes that are unnecessary for that

Research Australia grassROOTS SPRING 2015

particular cells’ function – but we were in the dark about where and how it was acting on the DNA.” They found Smchd1 was very unusual in its interactions with the genome. “Smchd1 is enormous, I think of it as a massive ‘Goliath’ molecule,” Dr Blewitt said. “So I had expected that this Goliath molecule would be greedy and crude, spreading out across the DNA to ‘exert its power’.

“In fact the opposite was true. Smchd1 is still a Goliath, but it very delicately squeezes itself into a tiny ‘seat’ on the DNA. It binds at just a few discrete sites on the DNA, then draws these pieces together to ‘shield’ them from being activated.”

The study was published in the journal Proceedings of the National Academy of Sciences, USA. The research was supported by the Dyson Bequest, the DHB Foundation, the National Health and Medical Research Council, the Australian Research Council and the Victorian Government. Ms Chen is enrolled as a PhD student through The University of Melbourne. www.wehi.edu.au

Spring 2015 New Ways To Detect Depression & Anxiety In Older Chinese Australians An Australian-first study on depression and anxiety among older Chinese immigrants has shown that one in five participants had clinically significant symptoms of depression and one in 10 exhibited clinically-significant symptoms of anxiety.

The study, conducted by National Ageing Research Institute (NARI) with funding from beyondblue, also showed that Mandarin-speaking people are at higher risk of depression and anxiety than Cantonese speakers.

Depression occurs in between 10 and 15 per cent of the general older adult population.

“What this study has revealed is that older Chinese Australians, among the largest and fastest-growing immigrant groups in Australia, are at greater risk of depression than other older people. This result is consistent with studies conducted in the United States and Canada, which generally range between 20% to 25%,” Dr Lin said.

“In terms of anxiety, there is limited data even for the broader general older population. This study revealed that anxiety is also a common mental health problem among older Chinese immigrants.”

The study also explored perceptions of depression and anxiety among the Chinese community through consultation with health professionals and community workers.

“We found that there was a lack of knowledge of mental health problems among the Chinese community and that older Chinese people have different perceptions of mental health problems to the general population,” said Dr Lin. The study discovered, for example, many Chinese people do not consider mental health problems as an illness but a personal weakness, and that they are also more likely to express mental health problems through physical symptoms.

“The reality is that there is strong stigma associated with mental health problems among the Chinese community,” said Ms Lin. Dr Lin and other NARI researchers believe contributing factors for increased risk of depression among this group could be associated with their immigration experience, such as reduced social networks, changed family status, and language barriers.

Dr Lin said: “There is still a long way to go towards understanding how these factors are associated with depression and anxiety among this group, and particularly

why Mandarin-speaking people are at a higher risk.”

The study has highlighted the critical need for culturally-appropriate services for older Chinese Australians. As a first step towards this, the year-long investigation has resulted in a suite of culturally-appropriate screening tools to help health professionals detect anxiety and depression better in older Chinese people.

This includes Australian Chinese versions of the Geriatric Depression Scale (GDS) and the Geriatric Anxiety Inventory (GAI).

These tools are freely available for health professionals working with older people from a Chinese background.

The research team has also developed a range of resources to support the use of the two tools. These include a screening guide on screening for depression and anxiety among older Chinese people, which provides information on what are depression and anxiety, risk factors for these mental health problems, common screening methods and what to do if person’s results show them to be anxious or depressed.

As commented by Dr Anita Goh, a clinical neuropsychologist at the Royal Melbourne Hospital, the screening guide is useful for health professionals because it lists factors to be aware of when working with older people of Chinese background who are or may be experiencing depression or anxiety.

“It also draws the clinician’s attention to the importance of a person’s migration story and history and highlights importance of appropriate communication strategies with clients from a non-English speaking background,” said Dr Goh. Other resources developed from this project include a tip sheet for clinicians when screening older people from a culturally and linguistically diverse (CALD) backgrounds, a practical guide on translating and culturally adapting mental health screening and assessment tools for people from CALD backgrounds, and education materials on mental health among older people for the Chinese community.

These resources are available from: www.beyondblue.org.au and www.nari.net.au

Research Australia grassROOTS SPRING 2015

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Spring 2015

Early Childhood Program Launches In The USA Developed by the Ingham Institute’s Professor Lynn Kemp and the TReSI group, the Maternal Early Childhood Sustained Home Visiting Program (MECSH) was first piloted as an intervention model for vulnerable families in South Western Sydney. Since then, MECSH has taken off in full force and is now a recognised gold star early intervention childhood program available worldwide.

The Ingham Institute’s highly acclaimed Maternal Early Childhood Sustained Home Visiting Program (MECSH) is a structured program of sustained home visiting developed for families at risk of poorer child health and development outcomes that pioneered in South Western Sydney region.

The program was originally developed in response to the critical need to improve services for families with young children living in disadvantaged communities. The Government’s vision to improve the health outcomes for vulnerable families was paramount and led to the introduction of the MECSH program in 2003.

Led by Associate Professor Lynn Kemp and the Translational Research and Social Innovation (TReSI), group (which sits in the Institute’s population and health services arm of research), the MECSH program piloted in Miller, a small suburb in South Western Sydney.

“Funded by the Australian Research Council, the MECSH program was initiated to support Australian mothers’ and their children’s health and wellbeing, supporting our mothers to be future oriented and

aspirational and provide additional support in response to the needs of families.”

promising results in the promotion of child health and development.”

“Within a number of years, the results of the randomised controlled trial of the MECSH began to show the model as an effective intervention for vulnerable and at-risk mothers living in areas of socio-economic disadvantage as well as a range of benefits for new mothers and children including improving the cognitive development of infants and children and creating better home environments,” said Prof Kemp.

So much so that the program further expanded across 11 sites in NSW, Victoria and Tasmania and launched in the UK in Essex in 2012 and Plymouth in 2013.

In 2013, MECSH received the ultimate kudos and was awarded the green tick of approval as an evidence based early childhood service delivery model by the Department of Health and Human Services (DHHS), representing a gold standard program. This achievement helped broaden MECSH’s profile on the world stage after launching in Korea in 2014.

Recognising the advantages of prevention in early childhood and how this links in with the overall improvement in health outcomes later in life was the cornerstone success for the MECSH programs expansion locally and globally.

“It was evident that children born in areas of disadvantage do not have the same opportunities for good health and development as those living in more advantaged areas. Our home visiting program encompassed intensive and sustained visits by nurses during pregnancy and over the first two years of life shows

Further building on the program’s global reach, MECSH is now being rolled out in Vermont USA, with Prof Kemp assisting the health and human agencies of Vermont with the launch. She anticipates that the program will be implemented and embedded in social services there quickly and efficiently.

“The vision for Vermont is to build on the success that we’ve seen after the launches in the Australian, UK and Korean Markets,” she continued.

“The introduction of MECSH in Vermont is the result of the government’s focus to address health disparities for vulnerable mothers and families. The issues that the regions need to address include a high incidence of socio-economic disadvantage and increasing refugee populations.”

“Another big factor is the increasing rate of mothers who are having children and families later in life and giving them the mechanisms to cope and deal with issues like post natal depression, which MECSH can also effectively address,” explained Prof Kemp.

The Ingham Institute’s MECSH program has certainly proved to be a universal concept to all classes and communities around the world. www.inghaminstitute.org.au Professor Lynn Kemp

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Research Australia grassROOTS SPRING 2015

Spring 2015

New Technology To Target Diabetic Foot Ulcers

Australia has one of the highest amputation rates in the developed world for diabetic foot ulcers. IHBI Professor Scott Wearing is working with people with diabetes and finding new uses for existing technology to aid early diagnosis of ulcers and prevent amputation.

Professor Wearing is using transmissionmode ultrasound technologies to monitor the properties of soft tissue with the aim of identifying tissue at risk of breakdown and ulceration.

The ultrasound technology sends waves through the tissue to determine its structure and mechanical properties.

Changes in movement can place pressure on parts of the foot, causing damage and increasing the risk of tears and ultimately infection. Scans from the ultrasound equipment help identify people at high risk of soft tissue damage, specifically diabetic foot ulcers.

The technology was initially used to confirm the structural integrity of buildings and bridges. It was then adapted and widely used for bone density testing but has rarely been used for soft tissue.

IHBI collaborators in France helped to extend the technology to develop a custom design system for measuring muscle and tendon properties in athletes.

IHBI researchers are now adapting the technology for use among people with diabetes.

Professor Scott Wearing

IHBI Professor Christian Langton developed the ultrasound equipment now commonly used for bone density testing, ensuring Professor Wearing can tap into his expertise in ultrasound characterisation and imaging, medical device development, computer modelling and simulation.

An absence of sensation in the feet can result in accidental damage of deep tissue that goes undetected. The deep tissue injuries can track to the surface of the foot and form an ulcer that in some cases can become infected. Chronically infected and open sores eventually result in amputation.

Professor Wearing also works closely with QUT School of Clinical Sciences Senior Research Fellow and Metro North Hospital and Health Service podiatrist Peter Lazzarini to ensure his research can be easily introduced in clinics and will benefit patients.

“The techniques I am developing aim to detect at-risk tissue early and stop the cycle of ulceration, infection and amputation,” Professor Wearing says.

The research feeds directly into the work conducted at QUT Health Clinics, including the High-Risk Diabetic Foot Clinic run in conjunction with Queensland Health.

Professor Wearing says people with diabetes are at the forefront of his mind when conducting the research, with support from a $300,000 Accelerate Fellowship from the Queensland Government.

Poor blood glucose control among people with diabetes can cause nerve damage to feet and inhibit blood supply.

“People with diabetes are far more likely to have a foot or leg amputated than other people. After amputation, people with diabetes find it hard to comfortably walk, particularly on uneven surfaces.

People who have had diabetic foot ulcers are also at greater risk of further damage and amputation so we need to ensure we monitor their feet.”

Up to 206,000 Australians have diabetic foot complications. The complications are the leading cause of amputations and diabetes-related hospitalisation. www.qut.edu.au/ihbi

Research Australia grassROOTS SPRING 2015

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Spring 2015

Whistle-Blowing Research Attracts Significant Funding Griffith University is set to move to the front line of one of Australia’s most significant public and private sector business issues – whistleblowing, following the awarding of significant Australian Research Council (ARC) funding.

Initial research into whistleblowing had begun over ten years ago by Griffith Law professor AJ Brown. Professor Brown is about to launch a follow-up to his original research, this time teaming up with Menzies Health Institute Queensland (MHIQ) Applied Psychology researcher, Professor Paula Brough. Their research has just been granted over $450,000 in funding to match the nearly $200,000 already committed by 15 partner organisations throughout Australia and New Zealand.

“The initial research led by Professor Brown focused on how much whistleblowing goes on and what happens to people, this time we are focusing on working with managers to explore how they react to whistleblowers and how their companies deal with people who expose wrong-doing,” said Professor Brough.

effect on, not only the activities of their companies, but their working cultures as well,” she said.

how the issue is addressed. If people are disbelieved or silenced, demoted or worse, things can soon become very negative.”

Professor Brough’s background is in organisational psychology where she has been prominent in working with Queensland Police.

Professors Brough and Brown will be conducting research with company and departmental managers to assess organisational whistleblowing policies and to identify ‘best-practice’ in the management of the whistleblowing process.

While the big stories of Wikileaks, Edward Snowdon and the Reserve Bank scandal have featured in our headlines, Professor Brough explains it is the regular, much smaller level disclosures that form the bulk of whistleblowing reports. The act itself does not need to involve the media or police; it may just be a simple attempt by a person in their section of a company to alert management to a misdeed or poor practise in their area.

“For the whistle-blowers the results are often catastrophic, with people losing employment and employability, all for essentially doing the right thing.”

“On the everyday level, you would think whistleblowing would be encouraged. The person is usually not trying to make the company look bad, they’re trying to help their companies,” Professor Brough said.

“But there are positive stories out there.

There are companies and organisations for which whistleblowing has a positive

“But what we know is that it all comes down to that first report to the supervisor.

How that is handled will often determine

Past events will also be explored to discover how whistleblowing events were handled and what companies learnt from them.

Another unique feature of the study is that it will incorporate public and private sector organisations in Australia and New Zealand.

While the public (government) sector still finds disclosure an extremely difficult process to deal with, Brough and Brown are hoping they follow the lead of the private sector who are increasingly wanting to engage and create a process around disclosure.

“I think we need to acknowledge that the public sector is largely uncomfortable with the idea of whistleblowing, but are showing more interest in being involved in studies like this. There are so many competing interests, obviously with politics at the top, that hesitation is instinctive,” said Professor Brough.

“It is also a long-term part of the culture which is not an easy thing to reform and being a public sector organisation, competing interests around the results of reform create a real bind for managers.”

However private sector interest has been significant. The study was able to build committed partnerships with private sector businesses seeking some research that could provide guidance on such an important issue for them.

Through comparisons of employee and managerial experience the study results hope to provide a clearer basis for reform of policies, procedures and law; and set new benchmarks for comparative research worldwide. www.griffith.edu.au Menzies Health Institute Queensland (MHIQ) Applied Psychology’s Professor Paula Brough

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Research Australia grassROOTS SPRING 2015

Board of Directors Chair 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 AC Director & CEO Burnet Institute

Professor Alexandra McManus Director Centre of Excellence Science Seafood & Health Curtin University Barry Thomas Vice-President, Director Asia Pacific Cook Medical 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 Andrew Giles CEO Garvan Research Foundation Associate Professor Greg Kaplan Chief Operating Officer Ingham Institute

Editor’s Corner Who can put an article in grassROOTS? 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 22 October, 2015. 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 accompanythe article.

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