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.
The Senate Community Affairs Reference Committee is inquiring into the ‘accessibility and quality of mental health services in rural and remote Australia’. Research Australia’s submission to the Committee’s initial call for submissions has emphasised the important role that research can play in both understanding and overcoming the issues rural and remote Australians face in getting access to mental health services. Research Australia has encouraged the Committee to engage with Australia’s heath and medical researchers in the course of its Inquiry.
Research Australia has made a submission to the Parliamentary Inquiry into the Electoral Legislation Amendment (Electoral Funding and Disclosure Reform) Bill 2017, arguing that the regulatory burden the Bill will impose on research organisations that engage in public comment on Government decisions, programs and legislation is unwarranted.
In particular, Research Australia has focused on the definition of ‘political expenditure’ in the Bill, which could include activities such as responding to Government reviews and inquiries, and the fact that the Bill will capture research grants from overseas funding bodies as ‘gifts’ that need to be monitored in relation to political expenditure.
The Inquiry received many submissions from charities and other organisations about the Bill. On 9 April 2018 the Committee released its report, recommending that several parts of the Bill be reconsidered and amended by the Government. The report is available from the Committee’s website here. The Government has yet to respond. Research Australia will continue to monitor developments.
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
The Government has today announced an $69 million boost in funding for research in to rare cancers and rare diseases, including $26 million allocated to 19 projects as a part of the Medical Research Future Fund’s “Rare Cancers, Rare Diseases and Unmet Needs Clinical Trials Program”. This program has been expanded from $13 million when announced last year to $26 million in recognition of the quality of the applications received.
A $10 million targeted call for research into rare diseases and cancers is expected soon, and an additional $33 million will be made available in the next financial year to further expand research in this area.
Research Australia welcomes the additional funding, and recognises the importance of funding for these areas which impact many Australian families.
Last year Research Australia made a submission to the Senate Select Committee Inquiry into Funding for Research into Cancers with Low Survival Rates, which you can read in full here.
Research Australia made a submission to the Senate Committee inquiring into the Therapeutic Goods Amendment (2017 Measures No. 1) Bill 2017. This Bill is the latest instalment in amendments to implement the recommendations of a Review conducted in 2015 with the aim of improving the processes for the approval of medicines and medical devices by the Therapeutic Goods Administration (TGA), and to provide consumers with better information.
Research Australia supported the amendments to improve access to potentially lifesaving medicines for patients with few or no other options. In doing so, it will implement a scheme that is similar to those already operating in the USA and European Union.
Research Australia also supported the proposed changes to the marketing of complementary medicines, although we urged the Senate Committee to recommend the legislation be amended to include disclaimers to the effect that the efficacy claims for the products have not been independently assessed and/or are based on traditional use rather than scientific evidence.
The Senate Committee issued its Report on 2 February, noting Research Australia’s submissions. It has recommended that the Senate pass the Bill. In responding to concerns raised by the Committee about advertising of complementary medicines, the Department has outlined measures that will be taken to ensure the public is aware that efficacy claims are based on traditional use rather than scientific evidence. The Committee has also urged the Government to ensure the TGA is adequately resourced to undertake its monitoring activities.
Research Australia’s submission in response to the NHMRC’s Peer Review Consultation has urged the NHMRC to consult further on options for a two stage application process for the Ideas Grants.
There is considerable interest within our membership and across the health and medical research sector in a two-stage application process, and while there is not yet agreement on the approach, there is an appetite for change. Research Australia believes that a two-stage application process for Ideas Grants, incorporating an abbreviated application at the first stage, provides the chance to reduce the burden on applicants and reviewers alike, while better supporting the objectives of Ideas Grants to promote innovative and novel research.
In particular, the process could provide the focus on novel and innovative ideas and reduced emphasis on track record that the NHMRC is seeking. Research Australia’s submission explores the opportunity to adopt a two-stage application process for Ideas Grants and puts forward some considerations for further investigation and consultation.
Research Australia’s submission to the Department of Industry, Innovation and Science’s consultation on a Digital Economy Strategy has emphasised the importance of digital innovation in the heath sector to Australia’s economy, national wellbeing and future prosperity.
It highlights a number of current initiatives in the health sector that are relevant to digital innovation and makes twelve recommendations to improve the adoption of digital technologies in health; increase innovation in healthcare delivery; and make better use of health data.
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.
Research Australia’s Collaborative Strategy and Priority Projects are now available for you to download and share.
Research Australia envisions a world where Australia unlocks the full potential of its world-leading health and medical research sector to deliver the best possible healthcare and global leadership in health innovation.
Connecting researchers, funders, and consumers to increase investment in health and medical research from all sources.
Engaging Australia in a conversation about the health benefits and economic value of its investment in health and medical research.
Influencing government policies that support effective health and medical research and its routine translation into evidence-based practices and better health outcomes.
To use our unique convening power to position health and medical research as a significant driver of a healthy population and contributor to a healthy economy.