Improving My Health Records Privacy

The commencement of the Opt Out period for the My Health Records (MHR) in July led to heightened concerns about privacy, and in particular the ability of law enforcement agencies and other third parties to obtain access to an individual’s MHR without  a court order. The Government has introduced a Bill to amend the legislation and address this issue. Research Australia has made a submission to the Senate Inquiry considering the Bill. Research Australia supports the Bill and the need to ensure public confidence in the MHR.

Read Research Australia’s submission.  The Senate Committee’s Report was released on 12 October.

Research Australia proposes new MRFF Priorities

Research Australia has a made a comprehensive submission to the consultation on the new MRFF Priorities 2018-2020.

Working with our broad membership, Research Australia’s approach was to start with the Strategic Platforms and examine every Priority and all the existing and proposed funding programs.  We looked at how well they were aligned, where the gaps were, and what wasn’t working. Research Australia gratefully acknowledges the contribution made by our members through discussions and the exchange of ideas and proposals.

Research Australia proposes that four Priorities be retained in their current form and that a further seven be retained but amended. We also propose five existing Priorities be discontinued and six new Priorities created. Research Australia’s response to the consultation is available here.

With the consultation period now completed, the next stage rests with the MRFF Advisory Board which is responsible for developing and issuing the next Priorities. We wish the Board well with this important task and look forward to seeing the new MRFF Priorities towards the end of 2018.

 

Improving Research Funding

Research Australia’s submission to the Parliamentary Inquiry into Research Funding has proposed a review across all funding agencies and government departments to eliminate unnecessary inconsistencies in application guidelines, processes and acquittal procedures. We also called for the development of a common approach to the calculation and payment of funding to cover the indirect costs of research.

Research Australia’s submission

Research for a Sustainable WA Health System

Research Australia has urged the Expert Panel responsible for undertaking WA’s Sustainable Health Review to give greater emphasis to the role health and medical research can play in creating a more sustainable health system for Western Australians.

While welcoming the identification by the Review Panel of the need to ‘Harness and support health and medical research, collaboration and innovation’ as one of the Interim Report’s 12 Directions, our response further elaborates the role for health and medical research in achieving the other 11 Directions identified by the Review Panel. We have used examples and case studies provided by our WA members to highlight the many ways that research is already helping reform WA’s health system, and the many opportunities to further leverage and expand this partnership for the benefit of the whole community.

Research Australia’s submission to the WA Sustainable Health Review

Prestigious Japan Prize won by Australian medical researcher

Australian Laureate Professor Jacques Miller has been jointly awarded the prestigious Japan Prize for research undertaken in the 1960s that established the basic concepts underlying modern immunology and led to the development of immunotherapies which have saved countless lives around the world.

Professor Miller undertook this research while working at the Walter and Eliza Hall Institute (WEHI) in Melbourne, in collaboration with American researcher Professor Max D Cooper. The Japan Prize Foundation said the work of the two winners laid “the conceptual groundwork for our understanding of nearly all fields touched by immunology.”

‘Research Australia congratulates Professors Miller and Cooper on this very significant award, recognising the extraordinary contribution they have made to science and human health’ said Research Australia CEO Nadia Levin. ‘This award is further evidence of the long history of world class health and medical research undertaken in Australia, and the contribution it makes to better human health around the world.  It is also a reminder of the need for patience. New discoveries in basic research can take decades to make an impact in the community, but when they do the benefits can be immense’.

Professor Miller is also widely regarded as the last person to discover the function of a human organ, the Thymus, and is a previous recipient of the Copley Medal of the Royal Society of London and the Prime Minister’s Science Prize (2003). Although he formally retired from WEHI in 1996 he continues to be actively involved in immunology research at the Institute.

Professor Miller becomes just the second Australian researcher to win the prize since it was first awarded in 1985, joining Professor Frank Fenner who won the award in 1988 for overseeing the eradication of smallpox.

The Japan Prize is awarded annually to scientists and engineers from around the world who have made significant contributions to the advancement of science and technology, thereby furthering the cause of peace and prosperity of mankind. More information is available at http://www.japanprize.jp/en/index.html

 

My Health Records for research

With the My Health Record gaining wider acceptance, the Australian Government has commenced a consultation on how this data should be used in future for research and public health purposes. The challenge is to establish a Framework that adequately protects individuals’ identities without unnecessarily restricting who can access the data for research purposes, how they can use it, and the time it takes to get access.  This is the balance that Research Australia’s submission emphasises- datasets should be as available as possible to researchers, subject to adequately protecting individuals.

The consultation paper on the Framework ruled out the use of My Health Record data for commercial purposes, which is contrary to Government policy as outlined on the Australian Government Public Data Policy Statement.  Another complication is that the Framework is being developed in advance of the Government’s response to the Productivity Commission Report on Data Availability, which has proposed a range of significant changes including creating a new National Data Custodian and allowing ‘trusted researchers’ to access identified data. Research Australia’s submission has emphasised the need for the Framework to be forward looking, so as to accommodate future developments is what is a fast moving policy area.

Research Australia’s submission

Why online health records help us all

Friday 1 September 2017

In an era of big data, the opportunity to harness the masses of information, including personal health records, through better collection, linkage and access, has the potential to transform our health systems and the way we deliver healthcare.

The more a doctor who is treating you knows about your medical history (and the quicker that history can be accessed) the better chance you have of it saving your life. If you are in an accident, unconscious and seriously hurt, then you really want those taking care of you to be able to access all your information about allergies, illnesses and medical history. It could make the difference between life and death.

You might assume doctors in various parts of the health system can already access your information, when the reality is that in most cases they cannot.The Australian health system is fragmented and information is not easily shared between the various GPs, medical specialists, private clinics and hospitals you visit over a lifetime. This means the data a medical professional looks at might not be complete or you may have to recall your own history repeatedly. This can lead to poor diagnoses and increased cost to the health system, with every repeat test and scan that might otherwise have been avoided.

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2030 Strategy for Science, research and innovation

As we are all too aware, Australia scores poorly on the translation of its research discoveries into new products and services. We need to improve the extent to which Australia’s research effort is directed to the questions and problems of greatest importance and how effectively our research is applied to provide solutions.

Bringing research and innovation together in the one Strategic Plan provides an opportunity to drive these improvements and to overcome some of the historic divides between programs to invest smartly in research and in programs to support and drive innovation. In addition to the research, innovation and investment communities, active engagement with the state and territory governments will be vital; it needs to be a ‘whole of governments’ strategy.

Just as importantly, the 2030 Strategic Plan needs a whole of community communication strategy to ensure all levels of society understand the imperative for a greater and more strategic investment in research, technology and innovation, and the benefits this can bring as we plan for the Australia we want in 2030.

Download Research Australia’s submission here.

Federal Budget 2017-18 | First grants issued by MRFF

Response to Budget 2017

Research Australia welcomes first grants issued by Medical Research Future Fund

Government delivers on promise to establish flow of funding into health and medical research $20 billion capital target to be achieved in 2020-21

After a long-fought campaign to bring the Medical Research Future Fund (MRFF) to reality, health and medical researchers have welcomed the first round of grants issued from the MRFF, as announced tonight in the Federal Budget. $65.9 million is available for 2016/17, with the detail of $25 million of this spending released tonight. Just as importantly, we now have a clear path to achieving the capital target of $20 billion, with the Budget papers revealing this target will be achieved in 2020-21.

Research Australia Director and CSL’s Senior Vice President of Research, Dr Andrew Nash, said the Budget announcement tonight confirmed the Government has begun to deliver on its promise to establish a consistent flow of funding for health and medical research.

“The grants announced tonight represent an important milestone in the establishment of this landmark source of funding for health and medical research.
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Federal Budget 2017-18 | Highlights

We have just got out of the Health Portfolio Federal Budget Lockup and here’s some early news on items affecting our sector.

We will provide you with more details around how the Federal Budget 2017-18 directly impacts health and medical research in the next few hours.

  • In 17-18, the total Health budget including (Aged Care & Sport) will increase 2.8% on last year to $94.2bn – that is 20% of total Commonwealth spend.
  • $5bn of that relates to HMR which includes:
    • $10M in preventive health research funded from MRFF
    • $78.8m for cancer research including $68m for a Proton Beam Facility in South Australia and $14.8m for childhood cancer.
  • Funding of $642.9 million will be made available in 2020 – 21, bringing total investment in HMR over the first 5 years of the MRFF to 1.4b, this is in addition to NHMRC funding.
  • $374.2m for national expansion of My Health Record to an opt-out system as agreed by COAG last year which will deliver enormous savings to the nation’s health bill over the next decade.
  • A compact with the pharmaceutical sector will mean lower cost medicines for consumers and in return allow more new drugs on the PBS and provide certainty and funding viability for the sector – congratulations to Medicines Australia

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