Chapter 2Views on the bill
2.1This chapter considers views and evidence received from submitters regarding the National Occupational Respiratory Disease Registry Bill 2023 (the bill) and the National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023 (Consequential Amendments bill) (together, the bills).
2.2Broadly speaking, submitters were supportive of the bill and its overarching purpose to establish the National Occupational Respiratory Disease Registry (the Registry).
2.3However, some highlighted possible areas of improvement for the bill, including in relation to:
the scope of the Registry and the types of data collected;
provisions around access to Registry data;
reporting requirements; and
oversight and review of the Registry.
2.4This chapter will outline submitters’ views on the bills and conclude with the committee’s view and recommendation.
Overarching views on the bill
2.5The Department of Health and Aged Care (the department) submitted that the bill creates a legislative framework to establish and manage the Registry. It explained that the Registry will capture and share data on the incidence of occupational respiratory diseases, causative exposures and respiratory health data, to assist in the:
detection of new and emerging threats to worker’s respiratory health; and
targeting and monitoring the effectiveness of interventions and prevention strategies.
2.6Several submitters expressed general support for the broad policy intent and purpose of the bills.
2.7Cancer Council Australia commended the government for introducing the bills and noted that the Registry ‘will be critical’ in identifying areas where exposures to occupational respiratory carcinogens are occurring and in informing initiatives aimed at preventing or reducing workers’ exposure to these carcinogens.
2.8The Public Health Association of Australia considered that the reform is ‘onevital step’ towards:
providing essential disease and treatment surveillance;
supporting data collection of engineered stone related diseases and their long‑term health implications; and
improving primary prevention strategies to ensure workplace safety.
2.9The Mining and Energy Union expressed similar support for the bill’s disease surveillance and prevention functions:
A robust and comprehensive national registry of occupational respiratory diseases, as envisaged by the Bills and recommended by the National Dust Disease Taskforce, would facilitate more stringent monitoring of occupational exposures, and provide information to support preventative action.
2.10The Australian Nursing and Midwifery Federation also welcomed the establishment of the Registry and noted that it will likely improve the prevention of occupational lung diseases in Australia and has the potential to improve the health of Australian workers more broadly.
2.11Some submitters also recognised that the bill addresses key recommendations of the National Dust Disease Taskforce.
Scope of the Registry
2.12Submitters broadly welcomed the bill’s establishment of the Registry and its key role in facilitating the collection of data and information relating to individuals diagnosed with, or being treated for, occupational respiratory diseases in Australia.
2.13WorkSafe WA expressed its support for the establishment of the Registry and its intention to ‘monitor the incidence and prevalence of occupational respiratory diseases in a coordinated and consistent way’.
2.14Cancer Council Australia considered that the Registry’s national-level collection, analyses, and publication of occupational respiratory disease data are crucial in measuring the incidence of occupational respiratory diseases in Australia, given this burden is currently unknown.
2.15Cancer Council Australia also outlined that the Registry could help identify occupations and workplaces of concern, facilitate the detection of new and emerging diseases, as well as enable the timely implementation of targeted prevention initiatives:
… [the Registry] has the potential to help support the identification of industries, occupations, workplaces, and tasks at high risk of exposure to respiratory disease-causing agents. It is anticipated that the Registry will facilitate the detection of new and emerging occupational respiratory disease issues and enable the implementation of timely and targeted interventions and prevention activities.
Additional disease data
2.16Some submitters advocated for the number of diseases to be captured by the Registry to be broadened.
2.17Lung Foundation Australia noted its support for a ‘well‑resourced clinical registry that systemically collects health-related information’ on occupational lung diseases. However, it suggested that the remit of the Registry be expanded to include other respiratory diseases in addition to silicosis, including:
… Asbestos, Coal worker’s pneumoconiosis, Chronic Obstructive Pulmonary Disease (COPD), Hypersensitivity pneumonitis, Mesothelioma, Work-related asthma, and occupational lung infections.
2.18The Public Health Association of Australia, Lung Foundation Australia and the Australian Council of Trade Unions (ACTU) specifically recommended that all occupational respiratory diseases found in the Safe Work Australia List of Deemed Diseases in Australia be prescribed and require notification to the Registry upon diagnosis.
2.19WorkSafe WA cautioned that adding to the list of prescribed occupational respiratory diseases over time would add ‘complexity and risk’ and explained the negative implications that could arise if the scope of the Registry is changed:
It may increase costs to medical practitioners who will be required to report an expanded list of prescribed occupational respiratory diseases, and would have implications for the funding and administration of the [Registry]. Other unforeseen negative impacts may also arise.
2.20The explanatory memorandum to the bill confirmed that under the provisions, silicosis would be the only occupational respiratory disease initially requiring notification, but noted that the bill would allow legislative instrument to expand the prescribed occupational respiratory diseases in future, in recognition that new threats to occupational respiratory health may later arise.
2.21The department noted that ‘the [bill] delivers on a recommendation of the National Dust Disease Taskforce to strengthen the evidence base by establishing a registry, with an initial focus on mandatory reporting of silicosis, and voluntary reporting of other occupational respiratory diseases’.
Additional exposure data
2.22Submitters considered the collection of information around exposure locations and frequency to be vital for the purposes of the Registry. However, some submitters raised concern that under the provisions, only a limited number of exposure locations will be mandatory to notify via the Registry.
2.23The ACTU asserted that ‘as many individuals work across multiple sites and industries, a more detailed exposure history is particularly important’. It explained that all exposures are important for preventive action, and raised concern that if minimum notification information is limited to the details of only two worksites where exposure has occurred, other worksites may be missed.
2.24According to the explanatory memorandum, ‘minimum notification information’, though it is yet to be defined officially by the Commonwealth Chief Medical Officer (CMO), will include ‘the individual’s belief as to where the last and main exposures occurred’ amongst other pieces of data. The explanatory memorandum notes that medical practitioners will likely have the option to include additional exposure sites as under ‘additional notification information’.
2.25The department’s submission clarified that the bill seeks to balance the ‘benefits of understanding the incidence of disease’ with ‘the burden of reporting on physicians’.
Access to and use of data in the Registry
2.26Several submitters proposed changes to provisions relating to the access and use of information under the Registry.
2.27Some suggested that the bill should permit researchers to have greater access to Registry data. Lung Foundation Australia argued that additional information captured through the Registry should be available to approved researchers ‘asit can be vital to informing research, future policy change, effectiveness of interventions, adherence to regulations, service provision planning and more’.
2.28Similarly, the ACTU’s submission, strongly supported by the Australian Nursing and Midwifery Federation, also suggested that information about exposure should be available to researchers, subject to ethics approval, in order to allow researchers to ‘further develop regulatory responses to occupational lung diseases’.
2.29On a different matter, WorkSafe WA proposed that the Registry should provide live access to data for state and territory health agencies, workers’ compensation authorities and particularly work health and safety authorities, to allow them to ‘proactively identify job tasks, workplaces and worker exposure history where available’ to better identify where risks may be occurring so that appropriate responses and preventative control measures can be implemented.
2.30In a joint submission, the Royal Australasian College of Physicians, the Australasian Faculty of Occupation and Environmental Medicine and the Thoracic Society of Australian and New Zealand (RACP, AFOEM and TSANZ) recommended that the bill allow for the sharing of information between treating and managing medical practitioners if the patient consents.
Reporting requirements
2.31Submitters broadly supported the bill’s publication and reporting requirements for data in the Registry, however some urged for these provisions to go further.
2.32WA Health noted its support for the bill’s annual reporting requirement on the Commonwealth CMO.
2.33Further, the ACTU pointed out that requirement of the Commonwealth CMO to publish annual reports on certain statistical information ‘will provide access to data previously unavailable to the public’ including to parties with duties of care, such as employers and state and territory regulatory agencies responsible for ensuring compliance with relevant occupational health and safety laws.
2.34However, among other submitters, the ACTU recommended that the content of the annual public reports from the Commonwealth CMO be broadened to include occupation, main job task, industry, and state. It also advocated for broader demographic information to be included in reporting to state and territory departments of health and other relevant regulatory bodies.
Oversight and review
2.35Some submitters suggested that there be further oversight over for the Registry, including expert guidance.
2.36For example, the Public Health Association of Australia and the ACTU recommended that a national oversight body be established to provide independent review of the Registry. The ACTU contended that such a body could:
…review and provide input into the tracking of exposures and the industries and occupations where there is a risk for occupational respiratory diseases. This body could also provide expert guidance on the collection of comprehensive exposure histories.
2.37In relation to expert guidance, the joint submission from the RACP, AFOEM and TSANZ, proposed that clinical governance was a crucial element missing from the proposed legislation, and that a multidisciplinary team of experienced clinicians providing input into the governance and operation of the Registry would be best practice, to support the integrity and reliability of the data.
2.38Independently, TSANZ urged that the Registry undergo a ‘full clinician‑informed review process’ within one to two years of implementation to ensure it is fit-for-purpose.
2.39Some submitters echoed the concerns of the Senate Standing Committee for the Scrutiny of Bills (see chapter 1) about the powers granted to the Minister and the Commonwealth CMO to make rules which define key terms in the NORDR bill and the consequent lack of definition of key terms in the bill.
2.40For example, WorkSafe WA raised concerns that the provisions of the NORDR bill allow the Minister to make legislative instruments under clauses 12, 31 and 33, and that:
These legislative instruments enable the Minister to significantly change the application of the NORDR legislation and this power is only limited by the requirement that the Minister consults with and has “regard to” submissions made by the Commonwealth Chief Medical Officer and each State or Territory Health Minister.
Other matters
2.41Other matters raised by submitters included:
concerns regarding the bill’s inclusion of civil penalties for medical practitioners for non-compliance with mandatory notification provisions;
a concern about the bill’s reliance on ‘self-reported’ data relating to exposures;
a concern that the bill does not provide power to the Commonwealth CMO to act on trends or intervene to prevent future occupational respiratory disease cases;
a proposal to allow authorised delegates of prescribed medical practitioners to notify the Commonwealth CMO of diagnoses, to reduce the burden on medical practitioners;
concerns regarding the consultation process throughout the development of the bills; and
various calls for other, additional measures and initiatives to contribute to the prevention of occupationally caused respiratory diseases in Australia.
Committee view
2.42The committee notes the importance of addressing the growing issue of occupational respiratory diseases, especially silicosis, in certain industries, and recognises the importance of the Registry in helping to identify the shape and scale of the issue.
2.43The committee recognises the overwhelming support for the establishment of the Registry, and acknowledges that these bills form a key part of the government’s response to the recommendations of the National Dust Disease Taskforce.
2.44The committee acknowledges the view shared by several submitters that the mandatory notification requirements should not be confined to silicosis, but be inclusive of all dust-caused occupational respiratory diseases. The committee notes that this decision was made according to the recommendation of the National Dust Disease Taskforce, and understands that the legislation intends to balance the benefits of understanding the incidence of disease with the reporting burden on physicians.
2.45The committee also notes that specific attention is drawn in both the explanatory memorandum and the National Dust Disease Taskforce’s final report to the possibility of further diseases becoming mandatory to report via the Registry, in the future.
2.46In relation to the collection of data around multiple exposure locations, the committee recognises that more data would provide a clearer picture, and that the ‘last and main exposure location’ may not cover all possible exposure locations to give a comprehensive view of a worker’s occupational exposure to disease‑causing dust. However, on balance, the committee considers that the current level of mandatory data collection balances the need to collect information with the ability of workers and physicians to identify and notify the Registry of the most recent and important exposure locations. The committee also notes that under the provisions, it will also be possible to report additional exposure locations as part of ‘additional notification information’.
2.47On the matter of access to Registry data, the committee believes that the proposed legislation appropriately allows for data to be both used and distributed to effectively monitor and address the issue of occupational respiratory diseases in Australia, whilst also generally protecting the right to privacy of individuals whose information is captured by the Registry.
2.48The committee recognises the issues raised by one submitter, as well as the Joint Standing Committee on Human Rights and the Senate Standing Committee for the Scrutiny of Bills, about key elements left out of the bill, to be later defined in delegated legislation. The committee is satisfied that this is largely for the purpose of allowing the Registry to be responsive to changes in this area in the future, but suggests that future reviews of the Registry seek ways to put more information into the Act itself.
2.49In relation to oversight of the Registry, the committee notes that the Registry forms one part of a comprehensive approach to tackle the rise in dust-based occupational respiratory diseases, and is satisfied that the Registry will have appropriate supervision and oversight.
2.50The committee appreciates the further suggestions made by submitters, and suggests that they are taken into account at an appropriate point for review in the future.
2.51The committee recommends that the bills be passed.
Senator Marielle Smith
Chair