National Medicines Policy- researchers as partners

Research Australia’s submission to the review of the National Medicines Policy has made the case for researchers to be formally recognised as partners in the Policy alongside government, industry, healthcare providers and consumers. We have also supported the expansion of the policy to include vaccines and new health technologies. Our submission provides examples of how the Policy can be more consumer-centric, by making better use of the data already collected to understand consumer behaviour in relation to medicines.

Read Research Australia’s submission.

Research Australia responds to National Data Strategy Consultation

The Department of Prime Minister and Cabinet is responsible for developing a National Data Strategy to guide all of the Government’s initiatives in relation to data. Research Australia was invited to comment on a high level outline of the principles and topics for the strategy, as the first stage of the Strategy’s development.

Our response has emphasised the importance of building social licence for the greater use of data. We have also highlighted the need to increase the capacity of the APS and Government agencies to share data securely and safely, which is is not currently addressed as part of the strategy. The submission also draws attention to the need to work with State and Territory Governments to increase the sharing and linkage of datasets across the jurisdictions.

Read Research Australia’s submission here.

Better Use of Commonwealth Data

The Data Availability and Transparency Bill is intended to improve researcher access to datasets held by Commonwealth Government Departments and Agencies.  Its introduction to Parliament follows a three year consultative development process triggered by recommendations for legislative reform contained in the Productivity Commission’s report on the Availability and Use of Commonwealth Government Data. The Bill is the subject of an Inquiry by a Senate Committee.

Research Australia has been closely engaged with the development of the Bill and is supportive of its passage through Parliament. Our submission includes case studies of the public benefits that can be achieved from the use of health data, and the current barriers to access and use of data.

Research Australia’s submission is available here.

 

Research to improve Aged Care quality

Counsel assisting the Aged Care Royal Commission have made their final submissions to the Commissioners, and the public has been given the opportunity to comment on the recommendations. This was the last chance for public input before the Commissioners provide their report to the Government in early 2021.

Research Australia has followed the progress of the Royal Commission closely. We urged the inclusion of research in the Commission’s original terms of reference and we have liaised with the Commission’s officers to connect them with researchers who were able to assist the Inquiry.

We have been pleased to see the reliance the Commission has placed on research to understand the current system and its failures as well as to explore alternatives. It is clear that research can play a critical part in improving the delivery of aged care services and in helping Australians to age well, and we have welcomed the prominence the final recommendations to the Commissioners give to research.

Research Australia’s response to the final submissions document is limited to two recommendations. Recommendation 55 deals with the creation of an Aged Care Research Council with a dedicated research budget. Recommendation 56 deals with creation of a minimum national aged care dataset and the availability of data to researchers. Finally, we have responded to the request for public response to remarks made by Commissioner Briggs in respect of Research and Data Governance.

Research Australia’s submission is available here.

Data Sharing- developing new legislation

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.

Supporting Clinical Quality Registries – towards a national strategy

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 Commonwealth Department of Helath subsequently released the final National Clinical Quality Registry and Virtual Registry Strategy 2020-2030 in February 2021, available here. The nomination of key target areas for CQRs and a sustainable funding model for these are no longer part of the Strategy, although funding for key areas is still likely, possibly from the MRFF.

Supporting Data Sharing and Release

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

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

2017 Data Innovation Award Winner: Professor Helmut Butzkueven

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

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Reducing Hip Fractures with data

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”