Submission to Diabetes Inquiry calls for better data and action on diabetes research

The Minister for Health and Aged Care has 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.

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.

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 Health 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.