Research Australia has responded to the Australian Government’s latest Discussion Paper on the development of Data Sharing legislation. The legislation aims to improve the sharing of data by Australian Government departments and agencies.
Research Austrlaia’s submission has urged further consideration be given to how public benefit and commercial use are to be defined and how tests for these might be applied. It has also supported the approach to the accreditation of research institutions and individuals, and cautioned against ethics approval by an HREC becoming a default requirement for all data sharing applications.
Research Australia’s submission is available here.
The next stage will be the release of draft legislation for consultation, expected in early 2020.
Clinical Quality Registries (CQRs) collect and use data about patients’ treatments to improve the delivery of healthcare. CQRs already play a vital role in helping Australia deliver safer, higher quality healthcare, but the approach to CQRs in Australia is ad hoc and fragmented. The Australian Commission for Safety and Quality in Healthcare has been working for more than a decade to improve this situation and the Australian Government has recently released a draft National CQR Strategy for the next 10 years.
Research Australia made a submission in response to the Draft Strategy, welcoming the progress being made in this area, and making suggestions for how the Draft Strategy could be improved. These include broadening the focus from the clinician/patient relationship to capture other patient interactions with staff that affect health care. Accreditation of CQRs and a sustainable national funding model with the support of state and territory governments are also critical elements for the Strategy.
Research Australia’s submission is available here.
The Productivity Commission has recommended that if Australia is to make better use of Government held data, including for research purposes, the law needs to be changed. The Government has acted on three key recommendations of the Productivity Commission in its proposal for new Data Sharing and Release legislation. This includes providing a new framework and guidance for the release of data by Government departments and agencies; creation of a new National Data Commissioner (NDC), to oversee the Framework and champion the release and use of data; and the creation of accredited ‘trusted users’ to facilitate access to data by researchers.
Research Australia’s submission is broadly supportive of the proposals in the Paper but has suggested an expanded role for the NDC and raised some concerns about how the accreditation of ‘trusted users’ will be implemented. The Department of Prime Minister and Cabinet has committed to further consultation and we await the development of draft legislation by the end of 2018.
Research Australia’s submission
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.
The Data Innovation Award award is presented to an individual or team that has developed the most innovative method of gathering, making available, processing or interpreting
data in a way that advances health and medical research.
Congratulations to Award Winner: Professor Helmut Butzkueven
Continue reading “2017 Data Innovation Award Winner: Professor Helmut Butzkueven”
Falling over and breaking any bone, let alone your hip, is not something any of us wants to think about, but it is all too often the reality for older people, with serious consequences.
One in 20 older hip fracture patients will die before they leave the hospital; one in 10 aren’t able to go home and instead transfer to an aged care facility, and more than half are still unable to walk after 12 months.
Continue reading “Reducing Hip Fractures with data”
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.
Flying Blind | The Australian Health Data Series
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.
CMCRC in collaboration with Research Australia is currently working on the second report which examines Australia’s health and medical research data environment and traces the difficulties that Australian researchers face at each stage of their journey as they attempt to access research data. Volume One dived into consumers and digital health through the patient journey, service fragmentation, health data silos, legislation, regulation and policy and consumer concerns and perceptions.
As we write Volume Two: Researchers and the Health Data Maze, we’ll be publishing regular blog posts of interest to this topic. The blog is updated regularly by members of the CMCRC’s Health Market Quality program and Research Australia. If you would like to be a guest blogger please email Lucy Clynes with your expressions of interest.
Bookmark this website today: https://flyingblind.cmcrc.com/researchers-health-data.
Continue reading “The Australian Health Data Series”
Health & Medical Research Awards
2016 Data Innovation in Health & Medical Research Award
Presented to an individual or team that has developed the most innovative method of gathering, making available, processing or interpreting data in a way that advances health and medical research. This new Award is being presented for the first time in 2016.
Congratulations to Award Winner: Capital Markets CRC, Health Market Quality Team
Continue reading “2016 Data Innovation in Health & Medical Research Award Winner: Capital Markets CRC”
Media Release: Wednesday, 7 September 2016
Some 91 per cent of Australians would be willing to share their de-identified medical data if it went towards research purposes.
That’s just one of the important findings from a Roy Morgan Research poll conducted on behalf of Research Australia as part of their annual national Australia Speaks study.
“What scientists and researchers need is data to develop new treatments and to track changes in the rise and fall of diseases over time,” said Research Australia CEO, Nadia Levin.
Continue reading “New Poll: Australian’s will share their personal health data if privacy protected”