Private Health Insurance (National Joint Replacement Register Levy) Amendment Bill 2026
Dr RYAN (Kooyong) (17:40): The Private Health Insurance (National Joint Replacement Register Levy) Amendment Bill 2026 removes the $5,000 cap on the levy payable per device per financial year by sponsors of joint replacement prostheses. The levy funds the Australian Orthopaedic Association National Joint Replacement Registry. To date, the cap has meant that small and medium sized device companies have been forced to carry a disproportionate share of the registry's costs.
Removal of the cap will ensure that the levy paid is proportional to the number of devices sold by each company. The National Joint Replacement Registry is an excellent demonstration of what can be achieved with good clinical data, but its success reflects how Australia is failing in other ways with our health data. In 2002, Australian surgeons performed more than 50,000 hip and knee replacements.
At that time, we had no good data on the long-term effect of those devices. The best estimate was that one in five hip replacements would eventually need revision. Australian orthopaedic surgeons decided that that wasn't good enough.
They built a registry which now collects data from every relevant hospital in Australia, public and private, on every joint replacement performed. That registry has saved Australians from real harm. In 2007, the registry identified the ASR metal-on-metal hip resurfacing device as an outlier, with a revision rate more than double that of comparable prostheses.
By the end of 2009, the manufacturer had withdrawn both ASR devices from the Australian market. Australia now has more than 140 clinical registries operating nationally and across jurisdictions. They inform best-practice care, quality improvements, health policy and resource planning.
Some of them are world leading. But they're a patchwork, established at different times for different reasons and funded in different ways. The Joint Replacement Registry is funded by an industry levy collected under its own legislation.
Other registries are funded through time limited Commonwealth grants. The National Clinical Quality Registry Program provides $40 million over four years to support 10 existing national registries. Other registries rely on the Medical Research Future Fund or on time limited NHMRC grants.
Some are funded by state governments. Some are funded by specialist colleges or universities, charities or patient groups. Others are funded by pharmaceutical companies with a commercial interest in their outcomes.
Many, if not most, survive on the goodwill of clinicians who enter data into those registries in their own time, and I know this from personal experience. I founded the Australian Neuromuscular Disease Registry in 2020. It's housed at the Murdoch Children's Research Institute.
It's one of 70 registries in the TREAT-NMD global network, which harmonises datasets so researchers across the world can pull data across borders, which was essential when every one of the conditions that we were studying was rare. The registry is funded by patient groups like Muscular Dystrophy Australia and Save Our Sons, with some support from pharma. It largely depends on the dedication of clinicians like my former colleagues Dr Eppie Yiu and Mrs Robin Forbes.
The reality is that long-term data has never mattered more. If we look at the gene therapies and genetic therapies now being given to Australian children with neuromuscular disease, which are given once and meant to last a lifetime, approvals are largely based on short-term data from small clinical trials. The TGA has adopted the European guideline on the quality and clinical aspects of gene therapy medicines— A division having been called in the House of Representatives— Sitting suspended from 17:44 to 17:57 Dr RYAN: The TGA has adopted the European guidelines on the quality and clinical aspects of gene therapy medicines but has not adopted the companion European guidelines on long-term safety and efficacy follow-up, which recommend that patients receiving gene therapies be followed for up to 15 years.
The long-term follow-up that those patients need falls back on registries like ours, registries run on goodwill and short-term grants. When the Commonwealth consulted on a national clinical-quality registry strategy, stakeholders were unified in saying that our approach to registries is ad hoc and fragmented and that the sector needs sustainable national funding.
But funding was absent when the national Clinical Quality Registry Strategy was finally released in 2021 and is still absent five years later, so whether a condition, a device or a procedure is properly monitored in Australia depends less on its importance to public health than on whether a group of committed clinicians start a registry of their own. Australian women harmed by transvaginal mesh implants know what that costs.
So do those who received defective breast implants produced by Dow Corning and those placed at risk by the now recalled Philips sleep apnoea devices. Last week in Kooyong I met with Catherine Shang, the CEO of the Australian Cardiovascular Alliance. Heart disease and stroke account for one in four deaths in Australia, but we have no national profile of them.
Cardiovascular data is held in hospital records and standalone registries in different formats in different jurisdictions. Compare that with cancer, where mandatory reporting of every diagnosis has supported a national database since 1982. The gap is most stark in sudden cardiac death.
Sudden cardiac arrest affects over 25,000 Australians every year. On average, one Australian under 35 suffers a sudden cardiac arrest every day. Those statistics are derived from a Victorian registry that was enabled through a philanthropic donation but has now stalled.
Kooyong constituents Gordon and Bronwyn Thoms know the cost of that. In 2023, their daughter, Alexandra, died from sudden cardiac arrest at just 23 years of age. Alexandra was a happy 23-year-old who had recently completed her double degree.
She died in her sleep without warning. Before losing Alexandra, the Thoms family had no concept that a seemingly healthy young person could die suddenly from an undiagnosed cardiac condition. That lack of awareness is itself part of the challenge that we face.
Tragically, it took Alexandra's death to find the underlying genetic cause that then enabled preventive monitoring and potentially life-saving intervention for other family members. Alexandra's brother, Charlie, was diagnosed with the same cardiomyopathy and subsequently received an implanted defibrillator. The Australian Sudden Cardiac Arrest Alliance has brought the sudden cardiac arrest community together to identify what we need to do.
Working with clinicians, researchers, survivors and bereaved families, they have developed evidence based recommendations for a coordinated national sudden cardiac arrest plan. One of AuSCAA's central recommendations is a near-real-time registry of cardiac arrest cases able to identify risks, measure outcomes and drive continuous improvement. Victorian researchers were tracking every arrest in people aged one to 50, determining the cause and circumstances of each to target prevention.
A similar registry being established in New South Wales now is struggling to connect emergency services with forensic information, and its ongoing funding is uncertainty. Organisations like AuSCAA shouldn't have to fight for data infrastructure and coordinated action. The Commonwealth should be providing that.
It now needs to meet with AuSCAA. It needs to act urgently to fund and implement a national sudden cardiac arrest plan. Another problem is the fact that our registries and the larger government data collection don't speak to each other.
The Australian Institute of Health and Welfare holds national hospital mortality and cancer data. Communicable diseases are reported through the National Notifiable Diseases Surveillance System. Occupational lung diseases, like silicosis, are captured in the National Occupational Respiratory Disease Registry.
Each of these have their own legal basis, governance, data standards and custodians. But, when registries want to link data with hospital records or death records, they're often forced to do that as a one-off project. They have to seek approvals in each jurisdiction, negotiate with multiple data custodians and satisfy multiple ethics committees.
One-off linkages are labour intensive, slow and expensive. This country collects enormous amounts of healthcare data but then walls it up in separate silos. Look at Medicare.
Every time an Australian sees a GP or a specialist, undergoes a procedure, has a pathology test or an imaging study or fills a PBS script, the Commonwealth has a record of that. Medicare and the PBS constitute one of the biggest and most complete longitudinal, population-wide health datasets in the world. But our clinical registries struggle to access that data.
Think about what routine access to that data could do. A registry tracking a new hip or knee device could see, without asking a single extra question of the surgeon or the patient, whether recipients go on to need more physiotherapy, less pain medication, more imaging or more specialist reviews than recipients of other devices. A registry for a chronic condition could measure in real time whether the care that Australians receive matches the guidelines that we spent so much time and money writing.
The Commonwealth is already paying for this data. It has the legal authority to share it safely and under strict privacy considerations, but it's lacked the infrastructure, the will and the single focus for it until now. This year, after nearly four decades of advocacy from public health experts, Australia has finally established the Australian Centre for Disease Control.
The CDC was created to be a data-driven organisation, one able to modernise our surveillance systems and enable data sharing and linkage across the Commonwealth, the states and the territories. It already houses the National Notifiable Diseases Surveillance System and the National Occupational Respiratory Disease Registry. The COVID-19 response inquiry recommended that the CDC be expanded to include non-communicable diseases, building on that data infrastructure and that linkage capacity.
I believe that clinical and disease registries should be part of that expansion. Imagine if, instead of 140 separate registries, each with its own funding fights, IT systems, data standards and linkage negotiations, we had a national registry platform hosted by the CDC, working closely with the AIHW and the safety and quality commission. Registries could keep their own clinical leadership.
They should, but the infrastructure, the secure data environment, the common standards and the enduring links to Medicare and the PBS, to hospital records, to other registries and to the National Death Index could be built once and shared by all. That would mean routine rather than one-off data linkage and a sustainable, transparent funding model which doesn't depend on which registries happen to have their own act of parliament.
Australians are rightly cautious about how their health information is used. A national platform would need strong legislative safeguards, independent oversight and genuine transparency about who accesses what data and why, but I think it's fair to say, given my experience of the milieu, that a single well-governed, well-secured national system could well be safer than dozens of underresourced ones, each managing sensitive data on its own.
As it stands, progress in the health portfolio is slow. I would argue too slow. The government's health technology assessment review made 50 recommendations more than two years ago, and its implementation advisory groups roadmap has been in limbo since the end of last year.
The strategic examination of research and development handed the Albanese government 20 recommendations last December. We're still waiting for a government response to those. There are more reasons for urgency.
The government is now working through how artificial intelligence should and could be adopted and used in our healthcare system. AI is only ever as good as the data that it learns from. Coordinated, high-quality national health data should be the foundation of the government's AI agenda in health, not an afterthought.
The national joint replacement registry has shown us what Australian doctors are capable of. This bill helps to make that registry sustainable. I support it, and I thank the government for introducing it, but I'd urge the minister to see this bill as a start of the conversation.
Every Australian who has a hip replacement deserves to know that someone is watching to see how well it works—that's happening—but so does every Australian who receives a heart valve, a breast implant, a new cancer treatment or the diagnosis of a rare disease. We have that data. We have that expertise, and we now have a national centre for disease control.
What we need is the ambition to bring them together in the interests of data interoperability to further advance our healthcare system. With that in mind, I move the amendment as circulated in my name: That all words after "reading" be omitted with a view to substituting the following words: "the House: (1) notes that: (a) for more than two decades, the National Joint Replacement Registry has demonstrated the value of high-quality clinical registry data to patient safety; (b) Australia's more than 140 clinical registries are fragmented and poorly integrated, and rely on inconsistent and often insecure funding; and (c) Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data remain largely unused by clinical registries despite their unique value as population-wide, longitudinal health records; and (2) calls on the Government to urgently: (a) develop a coordinated national approach to health data collection, including for clinical quality registries; (b) establish common data standards and enduring, privacy-protected linkage between clinical registries, MBS and PBS data, hospital, cancer and death records, and national genomic data resources; (c) house a national clinical registry in the Australian Centre for Disease Control; (d) prioritise the development of coordinated, high-quality national health data so that the research potential of artificial intelligence in health can be fully realised; and (e) release and respond to the Health Technology Assessment Review Implementation Advisory Group's final report and respond to the Strategic Examination of Research and Development report".