Our Strategy
The future of National Digital Research Infrastructure
As part of development of the new NCRIS Investment Plan, the Department of Education is developing a National Digital Research Infrastructure Strategy.
The Strategy aims to provide a vision and strategic direction to steer the National Collaborative Research Infrastructure Strategy (NCRIS) response to major challenges facing Australia’s NDRI system and guide Government investment and decision making.
Research Australia’s submission to the Consultation has proposed a definition of ‘digital research infrastructure’ and a vision that better reflects the expected outcomes if the Strategy is successful. We also emphasised the need to consider and prepare for the increasing complexity of data as well as increased volumes of data.
Research Australia’s submission is available here.
Submission to Diabetes Inquiry calls for better data and action on diabetes research
The Minister for Health and Aged Care asked the Standing Committee on Health, Aged Care and Sport to conduct an inquiry into Diabetes in Australia. Research Australia’s submission highlights the failure of the most recent National Diabetes Strategy to develop useful measures of progress and the absence of funding for the proposed research agenda, or any mechanism or structure to implement it.
This is an issue that has arisen consistently with recent health agendas and plans (e.g. dementia, primary care) that propose a research agenda as part of the plan but have no funding and no means of implementing it. Research Australia has proposed the Inquiry consider a role for the Australian Centre for Disease Control in the application of research to chronic diseases.
Research Australia’s submission is available here.
The Committee published its report on 4 July 2024, available here. Among its recommendations are that the Government involve the Australian Centre for Disease Control in managing research priorities for diabetes and increase diabetes research funding.
Making better use of GP Data and enhancing GP decision making
Most GPs these days use a practice management system (PMS), software which helps capture and manage patient information. Many of these systems also use AI enabled Clinical Decision Support (eCDS) software to support clinical decision making by suggesting possible diagnoses and treatments.
The Australian Government is investigating options for making greater use of data held in PMSs, and also the options for oversight of the quality of eCDS. Research Australia’s submission has provided examples of the types of research outcomes that can be achieved with GP data, and suggested how research could support the validation of eCDS and confidence in its effectiveness.
Research Australia’s submission is available here.
Making better use of Health Identifiers for research
The Health Identifiers Review is being conducted by the Department of Health, with the objective of increasing the usage of Health Identifiers in the health system. Research Australia is seeking an amendment to the Health Identifiers Act to explicitly permit Health Identifiers to be used when preparing datasets for research purposes.
Research Australia’s response to the consultation is available here.
Draft Data Code must provide more guidance
Following passage of the Data Availability and Transparency Act earlier this year, the National Data Commissioner has now released a draft Code of Conduct to provide further guidance on how to apply the data sharing principles, privacy protections, the public interest test and ethics requirements, as well as data sharing agreements.
The definition of ‘data project output’ continues to be problematic, with the terms ‘output’, ‘final output’ and ‘use of a data output’ all used ambiguously. It appears there are some circumstances in which the use of a data output is itself a data output and others where it is not, but the distinction is not clear. This is important because data outputs are regulated by the Act and the Code.
Research Australia’s submission addresses this issue and a number of others, including the public interest test and the circumstances in which designated persons need to be identified in a Data Sharing Agreement.
The final Data Code was published on 16 December 2022 and is available here.
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.
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.
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.