access to data for research Archives

Reforming the Privacy Act to better support health research

The Attorney General’s Department is undertaking a multi stage review of the Privacy Act 1988. In February 2023 the Department published the Report of the Review of the Privacy Act and of the consultation undertaken in 2021 and 2022. The Report contains many proposals for amendment of the Act, a few of which have direct implications for the use of personal information in research, and consent to the use of information for research purposes. Research Australia responded to these privacy related matters, supporting a broder research consent, and further consultation on the exceptions from consent which permit research to be undertaken.

Research Australia’s submission is available here.

The Government’s response to the report was released on September 2023 and is available here. The Government has accepted the report’s recommendations relating to research and will consult further before developing legislation. Research Australia will continue to participate with further consultations as legislation is developed.

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.

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 Availability and Transparency- Draft Bill and Accreditation Framework

Research Australia has been advocating for many years for improved access to public data for research. We made submissions to the Productivity Commission’s 2016 Inquiry into Data Availability and Use. Strongly supportive of the Commission’s recommendations, we have worked with the Department of Prime Minister and Cabinet on the consultations which have culminated in the release of the Data Availability and Transparency Bill exposure draft and the proposed Accreditation Framework.

The Draft Bill and accompanying Accreditation Framework for researchers are broadly in line with previous consultations and discussions. Research Australia has made some recommendations designed to improve the operation of the legislation and the Framework.

Research Australia’s submission is available here.

The Data Availability and Transparency Bill was introduced into the House of Representatives on 9 December 2020. Research Australia expects the legislation to be passed by the Parliament in 2021.