Key points

• The Government has introduced the National Occupational Respiratory Disease Registry Bill 2023 (NORDR Bill) and the National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023 as part of its response to the recommendations from the National Dust Disease Taskforce’s Final Report.
• The NORDR Bill will establish a national occupational respiratory disease registry (the Registry) that will contain specific information on individuals diagnosed with, or are being treated for, occupational respiratory diseases (for example, silicosis and asbestosis).
• The NORDR Bill contains limited detail on key elements of the proposed registry. For example, the list of occupational respiratory diseases that will be captured and the medical practitioners that will be required to provide information will be prescribed by the Minister in subordinate legislation.
• When diagnosing a person with a prescribed occupational respiratory disease, medical practitioners will not need to have a person’s consent to notify the Commonwealth Chief Medical Officer of the minimum notification information.
• The NORDR Bill enables information to be collected on occupational respiratory disease and is not limited to occupational dust-related disease – this could enable the identification of other agents/ industries/ tasks to support enhanced prevention and identification. Information available from the Department of Health and Aged Care suggests that the registry will include information on additional causative agents rather than ‘only’ dust, such as ‘passive smoking’, ‘welding fumes’ and ‘acrylates’.
• Stakeholders have called on the Government to introduce further measures to better protect workers and prevent occupational respiratory diseases.

Introductory Info

Date introduced: 21 June 2023
House: House of Representatives
Portfolio: Health and Aged Care
Commencement: National Occupational Respiratory Disease Registry Bill 2023: On a single day to be fixed by Proclamation or, if it does not commence within 6 months of Royal Assent, it commences the day after.
National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023: The same day as the National Occupational Respiratory Disease Registry Bill 2023 commences.

Purpose and structure of the Bills

The purpose of the National Occupational Respiratory Disease Registry Bill 2023 (NORDR Bill) is to:

• establish a national occupational respiratory disease registry (the Registry) that will contain specific information on individuals diagnosed with occupational respiratory diseases
  • the Registry may also contain information on individuals being treated for occupational respiratory disease
• the Registry will facilitate the national collection, analyses and publication of occupational respiratory disease statistics which will
  • identify the incidence of occupational respiratory disease in Australia
  • inform the design and evaluation of preventive actions
• the Registry will support the identification of industries, occupations, workplaces and tasks at high risk of exposure to respiratory disease-causing agents.

To achieve this, the Bill has 4 Parts, the main parts being:

• Part 2 – establishment of the Registry and its notification requirements and
• Part 3 – provisions for accessing and using the information in the Registry.

The purpose of the National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023 (Amendments Bill) is to amend the Freedom of Information Act 1982 to recognise the proposed National Occupational Respiratory Disease Registry Act 2023.

Background

It is estimated that around 38% of the burden of disease in Australia in 2018 was preventable by reducing exposure to modifiable risk factors.

Burden of disease can be measured as ‘fatal burden’ and ‘non-fatal burden’ of disease. Fatal burden of disease refers to dying prematurely and is measured by years of life lost. Non-fatal burden of disease refers to living with ill health and is measured by years lived with disability.

The leading risk factor contributing to fatal burden was tobacco use and overweight/obesity was the leading factor for non-fatal burden. In 2018, Tobacco use was estimated to contribute 8.6% of Australia’s total disease burden and overweight (including obesity) another 8.4%. Occupational exposures and hazards were estimated to contribute 1.8% of overall burden, ranking as the twelfth leading risk factor overall and ranking ninth for males.

However, unlike many conditions that are associated with occupational exposures and hazards, in the case of the three pneumoconiosis categories reported (including silicosis), occupational exposure was responsible for the entire burden. In addition, occupation exposure accounted for 65% of the mesothelioma burden (a type of cancer that has been linked to asbestos exposure). As such, if occupational exposure could be avoided, the subsequent diseases could be prevented. While diseases like silicosis are preventable, there is no cure for people that have them.

In addition, while some occupational lung conditions appear to be declining, there is evidence suggesting that silicosis may be on the rise, especially among people inhaling dust from engineered stone.[1]

Occupational lung diseases

Occupational lung diseases are respiratory conditions that, through occupational exposure to a hazard (risk factor), are associated with specific diseases. These hazards come in different forms (such as dust, microorganisms and gases) and have been linked to a number of conditions, including:

• pneumoconiosis – such as asbestosis, silicosis and coal workers pneumoconiosis (often known as ‘black lung’)
• chronic obstructive pulmonary disease (COPD) and
• lung cancer.

The number of people living with occupational lung diseases in Australia is unknown.[2] There are several factors that can impact the identification of occupational lung diseases. For example, chronic silicosis and asbestosis may not be diagnosed for many years after the exposure, or there may not be any physiological differences between conditions arising from occupational exposure and non-work related exposure, as may be the case with COPD.[3]

The New South Wales (NSW) and Queensland (Qld) governments have released annual reports on their dust disease registers that include reported cases of dust related disease for 2021–22 by disease type. In 2021–22, the Qld Notifiable Dust Lung Disease Register received new confirmed dust related respiratory condition notifications for 255 workers, with the majority being diagnosed with 1 disease and 13 people being diagnosed with more than 1 disease. Mesothelioma was the most frequently reported disease, with 74 new cases reported that year (see Table 1).

Table 1      Cases reported to the Qld Notifiable Dust Lung Disease Registry (2021–22)

Source: Queensland Health, Notifiable Dust Lung Disease Register annual report 2021–22, 2.

The NSW Dust Disease Register was notified of 476 cases of dust-related respiratory diseases in 2021–22, the most common was mesothelioma, with 270 cases reported (see Table 2).

Table 2      Cases reported to the NSW Dust Disease Registry (2021–22)

Source: Safe Work NSW, NSW Dust Disease Register annual report 2021–22, 5.

Silica-related diseases

There are growing concerns about the re-emergence of silicosis, which is a condition caused by inhalation of crystalline silica.[4] Crystalline silica is also associated with other conditions, such as lung cancer and kidney disease.

Crystalline silica is found in many things (for example, sand and stone) and is used in a variety of products, such as tiles, bricks and engineered stone (often used in kitchens and bathroom benchtops).

The first reported Australian case of silicosis associated with engineered stone was in a stonemason in 2015. In 2022, it was reported that 579 cases had been identified, which is assumed to be an underestimation of the real number.[5]

While the prevalence and incidence of silicosis is unknown, the silicosis cases that have been reported in NSW and Queensland registers up until 30 June 2022 are summarised in Table 3.

Table 3      Total number of silicosis cases reported to NSW and Qld dust disease registers

Source: Safe Work Australia, Decision Regulation Impact Statement Managing the risks of respirable crystalline silica at work, 25.

There is evidence suggesting that silicosis from exposure to engineered stone may be ‘associated with shorter duration of exposure, more rapid disease progression and higher mortality’ then silicosis associated with natural silica sources.[6] In addition, concerns have been raised that existing screening methods (respiratory function tests and chest X-rays) may lack sensitivity for silicosis, especially in the early stages, for high-risk populations.[7] In the National Dust Disease Taskforce final report (discussed in the next section), it was noted that WorkSafe Victoria was undertaking work to better understand the epidemiology of silica-related disease, including acute and accelerated silicosis.[8]

The Cancer Council estimated that approximately 587,000 people had occupational exposure to silica dust in 2011. Based on that figure, it estimates that about 5,758 people will go on to develop lung cancer in their lifetime due to that exposure.

Researchers have estimated that about 1% of the Australian adult population in 2016 (approximately 10,390 people) will develop lung cancer as a result of exposure to silica dust in their workplace. In addition, they have estimated that of the 2016 adult population, between 83,090 and 103,860 people will go on to develop silicosis due to occupational silica exposure.[9]

National Dust Disease Taskforce

In April 2019, the Coalition Government committed ‘$5 million to establish a National Dust Diseases Taskforce to develop a national approach for the prevention, early identification, control and management of dust diseases in Australia’.

The Taskforce was established in July 2019 and provided its initial advice to the Minister for Health in December 2019. This advice made 17 findings and 5 early recommendations; the early recommendations included:

• the development and implementation of a prevention strategy, with an initial and immediate education campaign
• development of a national approach to capture data, information collection and sharing to improve the understanding of occupational dust diseases in Australia, including the staged establishment of a national dust disease registry
• research to better understand accelerated silicosis, with an aim to improve prevention and treatment options.[10]

The Government announced in January 2020 that is was working to accept all 5 recommendations from the interim advice. In agreement with state and territory governments, the exposure standards for silica dust were halved to 0.05mg/m³ (averaged over an 8 hour period) on 1 July 2020 through amendments to the Work Health and Safety Regulations 2011 (Cth).[11]

The Taskforce provided its final report to the Minister in June 2021, amongst its findings was that almost 1 in 4 people exposed to silica dust from engineered stone before 2018 have subsequently been diagnosed with silicosis. Given the delay in health effects among some people, this figure is expected to climb.[12] Building on its earlier recommendations, the Taskforce made 7 recommendations, these included:

• enhanced work health and safety measures
• urgently undertake a regulatory impact analysis to identify and decide on measures for implementation that would provide the highest level of protection for workers[13]
• develop guidelines to identify people at risk of silica dust exposure and improve the quality, frequency and coverage of health screening for current and former workers
• design and implement preventative measures
• improve support for people affected by dust related diseases and their families
• improve the supports available for the health sector to improve the diagnosis and management of people affected by silicosis
• implement the national occupational respiratory disease registry as soon as possible, with an initial focus on mandatory reporting of silicosis, and voluntary reporting of other occupational respiratory diseases and
• establish cross-jurisdictional mechanisms to improve communication and information sharing, coordinate response and report on progress.[14]

These recommendations were informed by a 3-phase consultation process and the Taskforce received more than 120 submissions, 146 people attending forums and 11 targeted sessions being undertaken.[15]

The March 2022–23 Budget provided $11 million over 4 years from 2022–23 as part of the Commonwealth’s response to the final report, utilising existing resources from the Department of Health.[16]

A Commonwealth and state/territory governments’ joint response to the final report was released in April 2022. It included a commitment to operationalise the national occupational respiratory disease registry, which was expected to be in place by the end of 2022.

The 2023–24 Budget provided $10.0 million over 4 years from 2023–24 (and $1.9 million per annum ongoing) to address the increase in occupational silicosis and develop a national strategy for the prevention of silicosis and silica-related disease. This measure included:

• $4.7 million over 4 years ($0.8 million ongoing) to establish an occupational lung diseases team to oversee the implementation and explore long-term reforms for improvements to the occupational lung diseases framework
• $4.2 million over 4 years ($1.1 million ongoing) to extend the scope of the Asbestos Safety and Eradication Agency to include the prevention of silicosis and other silica related occupational diseases, as well as broaden the functions of the Asbestos Safety and Eradication Council and
• $1.2 million over two years from 2023–24 ‘to Safe Work Australia’s social partners to increase awareness and support better work practices relating to managing silica dust in the workplace’.

The cost of the measure is to be met through portfolio reprioritised resources.[17]

The Department of Health and Aged Care established a National Registry Build Advisory Group to provide advice on user experience and delivery of the intended purpose of the Registry. This Advisory Group includes representatives from several health stakeholder organisations, respiratory researchers and state and territory governments.

Committee consideration

Senate Standing Committee for the Scrutiny of Bills

The Senate Standing for the Scrutiny of Bills (Scrutiny of Bills Committee) has not reported on the Bills at the time of writing.

Policy position of non-government parties/independents

At the time of writing, non-government parties and independents do not appear to have commented on the Bills.

Position of major interest groups

There have been strong views expressed by stakeholders on the broader issue on worker safety from occupational respiratory diseases.[18] However, only limited comments have been identified on the NORDR Bill.

The Department of Health and Aged Care website indicates it is reviewing stakeholder feedback on the draft NORDR legislation it released in November 2022 (noting the website was last updated in February 2023).[19] Stakeholder submissions and/or a summary of the feedback does not appear to be available on the Department website.

The Australian Council of Trade Unions have welcomed the introduction of the NORDR Bill but call on the Government to implement further reforms to prevent occupational respiratory diseases, including banning engineered stone.[20]

In an interview with industry media, Dr Ryan Hoy, a respiratory and sleep disorders physician, has welcomed the introduction of the Bill as the first step in a new approach to workplace health and safety but say that government action has been too slow and a lot more work is needed to protect people who may have workplace exposure to silica.

Financial implications

The Explanatory Memorandum notes the initial $5.1 million to establish the Taskforce included $1.6 million for the development of a national registry. In addition, $2.4 million has been provided to operate the registry until 2025–26.[21]

Statement of Compatibility with Human Rights

As required under Part 3 of the Human Rights (Parliamentary Scrutiny) Act 2011 (Cth), the Government has assessed the Bill’s compatibility with the human rights and freedoms recognised or declared in the international instruments listed in section 3 of that Act.

The Government considers that the Bills are compatible, noting that ‘to the extent that they may limit human rights, those limitations are reasonable, necessary and proportionate’.[22]

Parliamentary Joint Committee on Human Rights

The Committee had not reported on the Bills at the time of writing.

Key issues and provisions

Object and purpose of the Registry

The NORDR Bill will establish a Registry that will record the incidence of occupational respiratory diseases in Australia, which will therefore inform activities to prevent further workers being exposed to respiratory hazards (clauses 3 and 11).

Clause 13 sets out the purpose of the Registry, which includes:

• collecting, storing, analysing and publishing information on the diagnosis and progression of occupational respiratory diseases (paragraph 13(1)(a))
• collecting, analysing and publishing statistics on occupational respiratory diseases and providing the statistics to state and territory governments and prescribed medical practitioners[23] (paragraphs 13(1)(b) and (c))
• monitoring the incidence of occupational respiratory diseases and preventive activities (paragraph 13(1)(d)) and the effectiveness of these activities (paragraph 13(2)(c))
• informing the identification of industries, occupations, tasks and workplaces with a risk of exposure to respiratory hazards (paragraph 13(2)(a))
• providing prescribed medical practitioners with access to individual patient information on the Registry to inform that person’s healthcare for the respiratory disease/s (paragraph 13(2)(b))
• supporting research, including the identification of individuals for clinical trials and observational studies (paragraphs 13(2)(e) and (f)).

Definitions to be provided in delegated legislation

Several key terms used in the NORDR Bill and that underpin its application and operation will be defined in delegated legislation made by the Commonwealth CMO, including:

• minimum notification information and
• additional notification information.[24]

In addition, the Minister (or their delegate) will make rules to define the terms:

• prescribed occupational respiratory disease and
• prescriber medical practitioner.[25]

Subclause 33(2) requires the Minister to consult with, and have regard for submissions from, the Commonwealth CMO and relevant state or territory authorities via their Health Minister before making rules with the definition of prescribed occupational respiratory disease.

Operation with state and territory laws and in external territories

Clause 7 recognises and makes provision for existing state laws on reporting occupational respiratory diseases and, if the state legislation is able to operate concurrently with the NORDR Bill, then it will not exclude or limit the operations of those arrangements. This will mean that Registry will not legislatively override existing state occupational disease registers where there is one already in place.

Clause 6 provides for the NORDR Bill to be operational in every Australian external territory, which will include mandatory reporting requirements for prescribed medical practitioners.

Information in the Registry

Clause 12 of the NORDR Bill provides the Commonwealth Chief Medical Officer (CMO) with the power to determine the specific information in legislative instrument that will be captured in the Registry, including:

• minimum notification information on the individual who has been diagnosed or is being treated for an occupational respiratory disease
• additional notification information on the individual.

While the details on what will be captured in the notification information as outlined in the subordinate legislation is not yet available, the Department of Health and Aged Care has released some guidance to support the roll out of the Registry, which has information on the data fields that may be included:

• the person’s details, for example, phone number, country of birth, Indigenous status and date of death
• disease and exposure details, for example, primary and secondary causing agents, the last and main industry, occupation and tasks when exposure occurred
• lung function test values
• occupational likelihood, which captures the medical practitioner’s view of the likelihood that the individual’s work caused or contributed to their respiratory disease/s.[26]

Notification process

Diagnosis of a prescribed disease (following commencement of the Act)

In instances when a prescribed medical practitioner diagnoses a person with a prescribed occupational respiratory disease, the medical practitioner is required to notify the minimum notification information to the Commonwealth CMO (subclause 14(1)).

The individual’s consent is not required for the practitioner to provide this information (subclause 14(2)).

If a prescribed medical practitioner contravenes this requirement, they will be liable for civil penalty of 30 penalty units (currently $9,390) (subclause 14(3)).[27]

If a prescribed medical practitioner is treating a person with a prescribed occupational respiratory disease, diagnosed at or after the commencement of the Act, and their minimum notification information is not included in the Registry, the medical practitioner may notify the Commonwealth CMO of the relevant information without the person’s consent (subclause 15(2)).

The prescribed medical practitioner who provides the minimum notification information can, with the person’s consent, provide additional notification information to the Commonwealth CMO (subclauses 14(5) and 15(3)).

Existing prescribed occupational respiratory disease

When a prescribed medical practitioner has previously diagnosed a person with a prescribed respiratory disease prior to the commencement of the Act and is treating them for that disease, with the person’s consent, the medical practitioner may notify the Commonwealth CMO of the person’s minimum notification information (subclause 15(1)).

Updating information

A prescribed medical practitioner may correct or update minor or technical information in the Registry by notifying the Commonwealth CMO without the person’s consent. For more significant changes, the medical practitioner will be required to obtain consent (subclauses 15(4) and (5)).

The Commonwealth CMO must update a person’s personal information at the request of that individual (clause 19) provided the information accurate, up-to-date, complete, relevant and not misleading.

Non-prescribed disease

Under clause 16, if a prescribed medical practitioner diagnoses a person with a non-prescribed occupational respiratory disease following commencement of the Act, with the person’s permission, the medical practitioner may notify the Commonwealth CMO of the minimum notification information.

In instances where the medical practitioner has diagnosed a person with a non-prescribed occupational respiratory disease that is notifiable under their state or territory legislation, the medical practitioner is also required to notify the Commonwealth CMO of the diagnosis and may also provide the minimum notification information. The medical practitioner does not need to obtain the person’s consent to do this.

In both of these circumstances the medical practitioner, with the person’s consent, may also notify the Commonwealth CMO additional notification information (subclause 16(3)).

Request for additional information

Clause 18 provides for the Commonwealth CMO, or a contracted service provider, to request additional notification information by electronic communication where a prescribed medical practitioner has notified minimum notification information. The person is not required to comply with the request.

Use of the information in the Registry

Part 3 of the NORDR Bill provides for dealing with information in the Registry and provides general, authorised dealings with the information and dealings by Commonwealth and state and territory authorities (such as disclosing or using the relevant information).

For the purposes of including information in the Registry, a person is permitted to collect, record, disclose and otherwise use:

• personal information (as defined in the Privacy Act 1988)
• workplace identifying information (as defined in clause 8)
• information that is commercial-in-confidence (subclause 21(1)).[28]

Subclause 21(2) permits the collection, recording, disclosure and otherwise use of this protected information under specified circumstances by:

• people engaged by the Commonwealth who do so for purposes of the Registry
• prescribed medical practitioners for the purposes of the individual’s healthcare of the occupational respiratory disease or checking that the relevant information is in the Registry
• people performing their functions/duties or exercising their powers under the proposed NORDR Act
• people who are authorised or required to do so under a Commonwealth, state or territory law
• the Commonwealth CMO, if they believe the information is necessary for enforcement activities
• the person’s whose information it is for the purpose of which it was disclosed to them
• court or tribunal proceedings or in accordance with a court/tribunal order
• coronial inquiry or at the order of a coroner.

Provisions also allow for access for research purposes, with some limitations applied, including any that are outlined in the rules (subclause 21(3)).

Subclause 22(3) provides for the Commonwealth CMO to disclose minimum notification information for an individual to a relevant state or territory authority if that person:

• resides in that state or territory, or
• were exposed to the respiratory disease-causing agent in the state or territory, or
• was diagnosed with an occupational respiratory disease in the state or territory.

Clause 31 provides for the Secretary to charge a fee for the disclosure of protected information to a person, other than a Commonwealth authority, under clauses 21 and 22 if the disclosure is made is response to a specific request by that person. The amount will be determined by the Commonwealth CMO by legislative instrument or through methodology set out in the instrument. Provisions are made for debt recovery for this fee.

If a person uses the protected information and they are not authorised to do so, they will have committed an offence, with a maximum penalty of 120 penalty units or 2 years imprisonment or both (clause 23). Clauses 24 and 25 provide for exceptions to this arrangement and relate to the provision of information to the person about whom the information is about, or their personal representative,[29] or to the person who originally provided the information.

The Commonwealth CMO is required to publish an annual report on the number of notifications of each prescribed and non-prescribed occupational respiratory disease and may publish other reports using the information included in the registry (clause 26). If the reports include any protected information, the Commonwealth CMO must take reasonable steps to de-identify the information.

Exemption from freedom of information requests

Proposed section 1 of the Amendments Bill will insert the proposed Registry Act into Schedule 3 – Secrecy provisions in the Freedom of Information Act 1982 making information on the Registry exempt from disclosure under a freedom of information request.