The Albanese government is currently pushing legislation through the lower house to produce a National Occupational Respiratory Disease Registry. Bills are being debated in parliament this week after being introduced to the House of Representatives on 21 June 2023 by the Assistant Minister for Health and Aged Care. Unfortunately, the development process has lacked genuine consultation and user engagement. What is being produced is a system that is punitive to physicians who are trying to look after their patients and may unintentionally make it more difficult for patients with silicosis to access medical care.

A registry for workers exposed to occupational silica dust was first called for by the Thoracic Society in 2018 and 2020. In fact, Thoracic Society members were the first to identify workers with silicosis in 2016 and have been strongly advocating for their protection ever since.

The Thoracic Society is an 1,800-strong respiratory not-for-profit with membership from world-leading clinicians, scientists, researchers, and other health professionals. Thoracic Society members care deeply about the lung health of their patients and wider community.

The National Dust Diseases Taskforce recommended the development of a national dust disease registry in June 2021. The advice was to prioritise silica and occupational respiratory disease research expertise in Australia and operationalise the registry as soon as possible, with an initial focus on mandatory reporting of silicosis, and voluntary reporting of other occupational respiratory diseases.

If implemented correctly, this registry is an excellent opportunity to put in place nation-wide occupational health monitoring, surveillance, and screening.

Vincent So

Unfortunately, looking at the draft legislation and the road ahead, there have been some crucial missteps taken by the Department of Health in developing the registry. These issues – which the Thoracic Society has brought to the attention of the Legislation Committee – will plague health professionals, and ultimately impact the effectiveness of this much needed protection mechanism for Australian workers.

The Thoracic Society’s policy stance is led by our members – professionals on the frontline who have witnessed firsthand the impact of patients suffering from dust-related occupational diseases. Our members possess the clinical and research expertise to understand the implications of even minor deviations in the draft legislation, and they have concerns with the proposed shape of the registry.

Let’s delve into key aspects of the legislation that warrant careful re-consideration.

A registry for early detection and protection

This registry should serve as an early warning system, alerting authorities to emerging health issues in workplaces. To be effective, it needs to include data from all screened individuals and track their complete occupational history. The proposed system will mean that health professionals who diagnose and treat at-risk workers will lack the data needed to access other at-risk workers early. Researchers and regulatory bodies will also not be able to see the true extent of dust-exposure in workplaces or gauge the true number of at-risk workers. In short, they will not be able to help prevent other workers in these companies from future dust-disease.

A learning registry

The registry should serve as more than just a repository of data. It should contain information on exposures, exposure circumstances, and disease progression. Over time it should evolve into a platform that gives medical practitioners and policy makers an evidence-based understanding of occupational hazards and impacts. Incorporating clinical governance into the legislation is the only way to protect the quality and integrity of the registry’s data. Regular and robust lines of communication between the clinicians who identify cases and the governments that need to respond is the only way to ensure that as many exposed workers are treated as possible. We recommend a full clinician-informed review process within one or two years of implementation to guarantee it is fit for purpose.

A registry which supports patients and clinicians

Whether government, health practitioner, or professional health society – we are all working to protect workers health. A excessive fine (approximately $9,000) does not create an environment to protect workers health. Realistically, most doctors who identify silicosis in their patients will not have the administration support to enter data into the registry. This means that the already time-poor doctor will spend more of their time doing administration instead of seeing more patients.  Doctors are not trained, resourced, or paid for data entry creating risk for the registry. Data entry could be incorrect or incomplete, and doctors may then be fined. To protect their practice, some doctors may perversely be incentivised to avoid referrals from GPs for silicosis screening – an unintended consequence that no one wants to see. A shortage of doctors will affect patient access to care and extend wait periods for the average Australian.

A punitive approach is not the answer

The government needs to avoid punitive legislation which makes silicosis patients a liability. Positive incentives to encourage doctors to enter data could include working with clinicians to ensure a clinically effective system is in place; one which supports at-risk workers by monitoring workplace exposures; one which utilises data to examine a worker’s occupational history; and one which allows thorough examination of clinical records for both management of disease but also research to lead to better clinical outcomes.

As leading health promotion advocates for lung health professionals in Australia and New Zealand, our members remain committed to working with the government to ensure the safety and well-being of all workers. We must seize this opportunity to set the gold standard for worker protection in the realm of occupational respiratory diseases, demonstrating our commitment to the health and prosperity of the Australian workforce.

Vincent So is CEO of The Thoracic Society of Australia and New Zealand.