Introducing Flying Blind 2

Introducing Flying Blind 2

Australia holds high quality digital
health data that could be of incredible value to health and medical researchers. In spite of the abundance of digital data, Australian health and medical researchers spend several months and even years to assemble data required for their research.

Research Australia’s annual consumer surveys demonstrate that Australian consumers are willing to share their health data to support research. However, this is not reflected in the current restrictive environment where researchers face a myriad of problems as they navigate a complex environment enmeshed in legislative, ethics and other barriers around data accessibility for research. Very often these obstacles result in long delays where research funding almost runs out, forcing many researchers to abandon linked data studies and make do with small data sets or seek overseas data banks to address their research questions.

Flying Blind 2 offers a way forward with a series of recommendations to enhance medical research in Australia, saving lives and saving dollars. The report proposes:

1. A harmonised process of data governance that provides a path from collection to researchers, and that ensures privacy and confidentiality are maintained.

2. Appointing organisations to act as data holding organisations for both structured and unstructured data

3. Creating Accredited Release Agencies to build data collections suitable for research

4. Privacy, Security, Confidentiality by Design

5. Publicly accessible protocols so that all Australians can see how health data is used, and how it is making a difference.

6. A single national data rich access point for researchers, that would also benefit the healthcare and health technology sectors.

Flying Blind
Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape. Flying Blind 1 focused on the consumer health journey and released in 2016. Flying Blind 2 focuses on enhancing medical research through data access. It was released in November 2018. Volume 3 will provide a view of data from the perspective of funders, policy and regulatory agencies.

Flying Blind is a collaboration between the newly established Digital Health Cooperative Research Centre (CRC), the Capital Markets CRC and Research Australia.

The Capital Markets CRC has been transforming research for over 20 years. We apply world-leading research infrastructure and analytical expertise to global markets including finance, health, energy and digital finance. The aim is to make them all fairer and more efficient, thereby benefiting our partners.

The Digital Health CRC was announced in April 2018. It is a $200+ million opportunity to transform health delivery: improving health outcomes; reducing waste in the health system; building businesses and jobs.

Our 80-member organisations represent every segment of the health system from patient to community, hospital to insurer, start-up to big government.

Our researchers, from 16 universities, will work with our health partners to develop and test solutions that work for real patients in real hospitals and other settings of care. And our business partners will work alongside them to ensure that the solutions are scalable and implementable. We’ll develop them in Australia, then take them to the world.

Research Australia is the voice of health and medical research participants across the health and medical research pipeline. We have broad insight into what patients and consumers, funders, researchers and commercial groups can contribute and require from it.

Click here to view Flying Blind, a series of three reports: https://flyingblind.cmcrc.com/

Research Australia Welcomes Frontier Funding Open for Application

Thursday 6 December 2018

RESEARCH AUSTRALIA WELCOMES FRONTIER FUNDING OPEN FOR APPLICATION

Research Australia has enthusiastically welcomed the announcement by the Minister for Health, Hon Greg Hunt MP, that the Frontier Health and Medical Research Program is now open and taking applications.

This morning at the University of Canberra, Minister Hunt officially launched the Frontier Health and Medical Research Program, which will give researchers significant funds for their innovative and transformational medical research.

The Government’s Frontier Health and Medical Research Program will invest $240 million over five years in cutting edge medical science which promises new treatments and technologies to improve health, and open new markets for industry growth. This includes fields such as space medicine, artificial intelligence, robotics and microbiomics.

Research Australia CEO and Managing Director, Nadia Levin, said, “There is incredible frontier research underway in Australia today which will transform the way future generations manage their health.

“Research Australia first called for a funding boost to these disciplines because we understood the potential which already exists in Australia to become a world leader in frontier disciplines.

“We absolutely welcome today’s announcement. It’s wonderful to see the Government and the Australian Medical Research Advisory Board have taken on board the views of the health and medical research sector in developing a program for investing in frontier medical innovation.”

Funded from the Medical Research Future Fund, this Australian-first program was developed in consultation with Research Australia on behalf of the health and medical research community, and consists of a two-tiered process.

In the first stage, up to ten successful applicants will receive funding of up to $1 million each over one year to develop planning for their revolutionary research projects.

In the second stage, a number of research plans developed under stage one will be chosen to receive a further funding boost to progress their ideas into new technological advances or approaches to transform the future of healthcare.

“This is new and bold health and medical research funding which takes an economies-of-scale investment approach. Importantly, it positions Australia as a valuable contender in the global health space which means more opportunities for us all,” Ms Levin said.

To apply visit: www.business.gov.au/fhmr

Media contact: Lucy Clynes, Research Australia, 0404 068 912

To view the media release, please click here

 

 

Research Matters October 2018

There’s certainly been a lot of activity over a range of issues and policy areas recently and we’ve consolidated the key areas for our members in on Research Matters update.

This communication features important information on:

  1. Policy & Advocacy – Your Voice
  2. Consultations, Enquiries & Reviews; Mental Health & Aged Care
  3. MRFF; Grants & Priorities
  4. In Parliament; MHR, R&D Tax Incentives, Electoral Funding Reform
  5. COAG; Obesity, Human Tissue Acts
  6. Submissions Update

    Please click here to view Research Matters October 2018

2018 Annual General Meeting

Members are invited to attend the 2018 Annual General Meeting (AGM) of Research Australia Limited on Thursday 29 November at 09.30am being held at the Garvan Institute of Medical Research, Level 7 Boardroom, 384 Victoria Street, Darlinghurst NSW.

As you are no doubt aware, the AGM is a statutory requirement to receive and consider the financial statements and reports of directors, and election of directors.  It is anticipated that the AGM will run for a short time and will be followed by a light morning tea.

The following business will be transacted during the AGM:

ORDINARY BUSINESS

ANNUAL ACCOUNTS
To consider the annual report, financial statements and report of the Directors and auditor for the year ended 30 June 2018.

RESULTS OF DIRECTOR APPOINTMENT/S
To note the Directors who return and the appointment of new Director/s in accordance with the Company’s Constitution.

OTHER BUSINESS
Any other business that may be brought forward at a general meeting in accordance with the Constitution.

Note: A Member who is entitled to vote at the meeting has a right to appoint a proxy and should use the proxy form available here. One vote is entitled per member organisation.

The proxy form must be signed and dated by the Member and must be received via email no later than 5:00pm Monday 26 November 2018.

Notice of Election to the Research Australia Ltd Board of Directors
The new Board will be announced at the Research Australia AGM (details above).

Call for nominations will open today, Monday 12 November 2018.
The nomination form can be found here.

If you have any questions regarding the election process and/or the AGM please do not hesitate to contact Nadia Levin, CEO & Managing Director on (02) 9295 8546 or ceo@researchaustralia.org.

By Order of the Board

Australians embrace health and medical research in a changing landscape of healthcare

Media Release
September 12, 2018

Australians continue to place improving hospitals and healthcare as the number one spending priority for the Australian Government ahead of infrastructure, education standards and employment opportunities.

We are pleased to see that more funding for health and medical research is the 6th most important of the 27 priorities presented in the poll. (It has been consistently in top 10 ever since we started polling in 2003.)

Interest among Australians in health and medical research is high with 89% saying they are interested in health and medical research.  However, while confident in their ability to contribute to decision making about the future direction of HMR most Australians don’t know how, and many don’t believe they’d be heard.  Our governments and research organisations clearly have more work to do to meaningfully engage with the broader community.
Continue reading “Australians embrace health and medical research in a changing landscape of healthcare”

Research Australia Welcomes My Health Record Reforms


 

 

 

MEDIA RELEASE
1 August 2018

My Health Record: Health and medical researchers welcome strengthened privacy

Australia’s health and medical research sector has welcomed Government moves to strengthen privacy protections of the My Health Record.

“Australians must be able to confidently participate in this scheme. Strengthening the My Health Record Act is an important first step in ensuring public trust in the system.

“People have real concerns over privacy and access of their My Health Record and those concerns must be heard and addressed through additional communications to the public about the benefits and purpose of the My Health Record. This is too important an opportunity to forego because of a lack of information,” said Research Australia’s CEO, Ms Levin.

An overnight poll of Research Australia members shows continued support from the health and medical research community for the My Health Record, with a majority of respondents in favour of the scheme.

Research Australia has written to Federal Health Minister, Greg Hunt, offering the assistance of health and medical researchers in explaining how My Health Record data could be used to further vital health and medical research and improve our health system.

Research Australia is the national peak body representing the whole of the health and medical research pipeline: www.researchaustralia.org

Media contact: Lucy Clynes 0404 068 912

Research Funding Inquiry – your ideas needed

The Education and Training Minister has asked The House Standing Committee on Education, Employment and Training to inquire into and report on the efficiency, effectiveness and coherency of Australian Government funding for research, in the following terms:

  • The diversity, fragmentation and efficiency of research investment across the Australian Government, including the range of programs, guidelines and methods of assessment of grants;
  • The process and administrative role undertaken by research institutions, in particular universities, in developing and managing applications for research funding;
  • The effectiveness and efficiency of operating a dual funding system for university research, namely competitive grants and performance-based block grants to cover systemic costs of research; and
  • Opportunities to maximise the impact of funding by ensuring optimal simplicity and efficiency for researchers and research institutions while prioritising delivery of national priorities and public benefit.

This inquiry will be focused on federally funded research agencies, their funding mechanisms and university collaborative research. The inquiry will not consider the National Health and Medical Research Council’s Funding Programs, which are in the process of being reformed.

Research Australia will be making a submission, and we want input from our membership, to ensure we are accurately representing your views.

For context, areas areas we have addressed in the past include:

  • The inadequate level for funding of indirect costs
  • ‘falling between the cracks’- the scope for research proposal to fall between the ARC and NHMRC. Do you have an example?
  • The need for predictable, sustainable levels of funding for programs.

Please contact Greg Mullins, Head of Policy, (greg.mullins@researchaustralia.org) or Lucy Clynes, Head of Government Relations (lucy.clynes@researchaustralia.org) if you would like to have any questions or would like to contribute to Research Australia’s submission.

 

Nominations open for GSK Award for Research Excellence

Nominations for GSK’s Award for Research Excellence are open until 6 July 2018. The longstanding award seeks to assist leading Australian researchers by providing the winner with an $80,000 grant to support their research journey.

The GSK Award for Research Excellence is one of the most prestigious available to the Australian medical research community. It has been awarded since 1980 to recognise outstanding achievements in medical research with potential importance to human health.

Last year’s award was received by Professor Timothy Hughes – considered a world-leader in chronic myeloid leukaemia (CML) research – for pioneering the use of tyrosine kinase inhibitors (TKIs) in the treatment of CML. You can view his winning video here.

Speaking about the award, Professor Hughes said “Awards like GSK’s Award for Research Excellence bring much needed support to the research community in Australia. Not only through the direct impact of the award’s funding, but also through raising awareness of the scientific expertise and innovative activities in our country.”

Professor Hughes and his team at the South Australian Health and Medical Research Institute are currently focused on treatment response to optimise disease management and patient outcomes. The $80,000 prize that comes with the GSK Award for Research Excellence will help support a Leukaemia Fellow to work alongside Professor Hughes in furthering research into CML.

The award was presented to Professor Hughes at Research Australia’s Health and Medical Research Awards 2017 in Melbourne. Dr Andrew Weekes, Medical Director, GSK Australia, said, “GSK is proud to be able to support Australian researchers with this award, now in its 38th year.

Successful applicants are generally mid-career researchers with a long-standing commitment to their field. The winner will be announced on Thursday 8 November 2018 at the Research Australia Health and Medical Research Awards dinner, being held at the Sofitel Sydney, Darling Harbour.

Further information is available on the GSK ARE website where nominees may be submitted. Please email any enquires to are.arenominations@gsk.com. Nominations close 2 July 2018.

 

Research Australia puts data front and centre in NSW Parliament House

An incredible panel of data experts has described and challenged the opportunities that data provides in delivering better outcomes for patients and consumers at Research Australia’s inaugural Speaker Series event at NSW Parliament House.

Researchers, policymakers and politicians discussed some of the most topical issues around the use of data in health and medical research, diving in to the complex issues of data safety, how data can be used to make Australian’s lives better and exactly why the research community wants your data.

The Hon Catherine Cusack MLC, NSW Parliamentary Secretary for Digital Inclusion welcomed attendees to the first in a series of events designed to highlight some of the most topical issues facing the sector today, with big names in the sector both on the speaking panel and in the audience.

Chaired by ABC’s National Medical Reporter Sophie Scott, the panel discussed the topic of “Is New South Wales ready to harness the transformative power of data in health and medical research?”. The panel itself included Dr Jean-Frédéric Levesque (CEO of the NSW Agency for Clinical Innovation), Professor Emily Banks (Scientific Director of the Sax Institute’s 45 and Up Study), Dr Avi Ratnanesan (CEO of Energesse) and Harry Iles-Mann (Patient/Consumer Advocate).

With the Australian Digital Health Agency’s creation of a My Health Record for all Australians, the discussion focused on the collection, use and protection of consumer data in the health system. The audience was taken on a health consumer’s journey through the eyes of Harry Isles-Mann, who shared the good and bad of his experiences and why he is so passionate about engaging the public in the future of health and medical research.

Dr Levesque spoke to the audience about where NSW is heading regarding data-centric projects that will impact health consumers, and how the state is placed compared to other health systems through the lens of his time in senior positions responsible for publicly reporting information in the Canadian health system.

The crowd included representatives from the Australian Digital Health Agency, NSW Ministry of Health, Australian Institute of Health and Welfare, NSW Department of Premier and Cabinet, Austrade, the Australian Red Cross Blood Service, the Centenary Institute, Ingham Institute and Bupa Health Foundation.

The 45 and Up study run by the Sax Institute is the largest ongoing study of healthy ageing in the Southern Hemisphere, following a group of more than a quarter of a million people. This placed the study’s Scientific Director, Professor Banks, in a unique position to share insights on how important data is to researchers whilst Dr Ratnanesan described how his company translates the voice of the consumer to healthcare providers.

The discussion’s focus on data was no coincidence, with Research Australia defining “Data as a national resource” as one of their key strategic objectives. The focus of the objective being on harnessing the transformative power of data to accelerate advances in health. You can read a copy of the Collaborative Strategy here.

The event as made possible by the event partners, the Vodafone Foundation and the Garvan Institute of Medical Research. Dan Lloyd, Vodafone Foundation Chief Strategy Officer, was on hand to talk about the DreamLab app which uses smartphones to donate data to download tiny research problems, calculate them, and then send the result back to the research team at Garvan.

Stay tuned to the Speaker Series page on this website for more information on upcoming Speaker Series events.

 

HMR sector welcomes budget investment in frontier medical innovations

Australia’s health and medical research sector has welcomed the announcement in tonight’s Federal Budget of a $240m investment in a Frontier Health and Medical Research Program.

Research Australia CEO and Managing Director, Nadia Levin, said “We know that across Australian universities, medical research institutes and of course our thriving health innovation sector, there’s incredible frontier research being done.

“Exponential digital disruption, machine learning, augmented intelligence and an array of new devices will see a digital revolution in healthcare which will easily match the progress of the biological revolution of the 21st century.

“This targeted, confident, large-scale investment sends a signal to the world that Australia is serious about becoming a global leader in health innovation.” said Ms Levin.

The Program announced tonight reflects Research Australia’s earlier call for an investment in Medical Frontiers.

“It’s wonderful to see the Government and the Australian Medical Research Advisory Board have taken on board the views of the health and medical research sector in developing a program for investing in frontier medical innovation.

“It will enable health innovators to explore frontier applications of technology to areas of healthcare which will change the way future generations maintain and improve their health,” Ms Levin said.

The Government’s Frontier Health and Medical Research Program will invest $240 million over four years to establish a landmark program for researchers and collaborators to support innovative ‘out of the box’ ideas and discoveries. It will unlock groundbreaking research which promises new treatments and technologies to improve health, and open new markets for industry growth.

The Program will operate under a two-stage process:

  • Stage one will involve a competitive expression of interest, where researchers articulate their idea and its merit, and demonstrate its novelty, competitiveness and transformative nature, and its potential for partnerships. Successful applicants will have approximately one year and $1 million to advance their idea, ready to put forward for potential stage two investment.
  • Stage two will support the best applicants to realise a new frontier in health and medical research and build new industry ecosystems through up to five years of funding – ranging from $10 to $20 million per year.

In the 2018 Federal Budget, the Government has reaffirmed its commitment to fully funding the Medical Research Future Fund with $20 billion capital target to be achieved in 2020-21. Consistent with Research Australia’s earlier calls for investment in this area, the Frontier Health and Medical Research Program will be funded from the Medical Research Future Fund.

Case Study: Exploring new frontiers in immunotherapy

Immunotherapy manipulates the human immune system to trigger immune responses to new disease targets. While immunotherapy has shown success in a range of applications, like cancer, its full potential is yet to be realised.

Associate Prof Tony George from the School of Life Sciences at the University of Technology in Sydney is exploring new frontiers in immunotherapy. Assoc Prof George and his team have discovered a compound called ‘CZ’ and are investigating whether CZ could trigger the body’s own immune system to fight malignant mesothelioma.

Exposure to blue asbestos is responsible for causing mesothelioma. Australia has the second-highest mesothelioma death rate in the world, trailing only that of the United Kingdom. According to cancer experts, an additional 25,000 people are expected to die from it over the next four decades.

Early results from trials conducted in mice show that the CZ compound was able to protect the mice from asbestos-induced mesothelioma, almost certainly after tumours had started. Further funding is required to design clinical trials to understand the efficacy of CZ on the human immune system.

Beyond its application to mesothelioma, this frontier immunotherapy has potential in encouraging the body’s own immune system to boost the efficacy of other anti-cancer drugs.

To find out more, or to get involved please contact Lucy Clynes, Head of Government Relations on (02) 9295 8518.