Chapter 7Data issues, gaps and opportunities
7.1This chapter discusses the evidence received by the committee in relation to cancer data in Australia.
7.2Firstly, it outlines the complex landscape of cancer control data in Australia and the key challenges this presents. It then discusses wide-ranging calls from submitters and witnesses to broadly improve how this data is collected, linked, analysed and made available, particularly in relation to rare and less common cancers.
7.3It also sets out evidence received by the committee in relation to key cancer data‑related issues, including:
calls for a centralised, national cancer data framework;
the changing nature of how cancer types are classified;
the lack of data regarding the stage of cancer at diagnosis;
the accessibility of data for research purposes;
key considerations for data and First Nations communities; and
views on the value of My Health Record.
7.4It concludes with the committee’s views and recommendations on these issues.
The complex landscape of cancer control data in Australia
7.5Evidence to the committee made clear that the systems and infrastructure for the collection, collation, and reporting of cancer data in Australia are vast and complex.
7.6According to the Australian Institute of Health and Welfare (AIHW), cancer is a notifiable disease in all Australian states and territories, with legislation requiring certain individuals and organisations to notify all new cases of cancer to jurisdictional cancer registries.
7.7The Australian Cancer Plan, developed by Cancer Australia, highlights that data across the cancer control continuum is captured differently across various institutions and organisations, including:
cancer services;
primary care services (including Aboriginal Community Controlled Health Services);
the National Cancer Screening Register;
the Australian Cancer Database; and
other jurisdictional cancer registries.
7.8The Australian Cancer Plan also notes that factors such as the segmented structure of the Australian health system, the delivery of cancer care across public and private systems, as well as other structural and legislative factors, including multiple data custodians responsible for different datasets (often with individual jurisdictional ethics requirements), challenge the ability to create a nationally consistent view of cancer control.
7.9The Daffodil Centre, a research partnership between Cancer Council NSW and the University of Sydney focussed on cancer control and policy, similarly advised that the challenges of data linkage and utilisation to improve both clinical decision making and policy, are multifaceted, and ‘compounded by the complex mesh of federal, state/territory, regional/local, public and private healthcare services and databases’.
7.10Likewise, Ms Megan Varlow, Director of Cancer Control Policy at Cancer Council Australia noted the complex nature of the various cancer data collections across the country, and pointed out that data is ‘a really big issue for all cancers, but particularly for rare and less common cancers’.
7.11The Daffodil Centre advised that data-driven solutions in the context of this inquiry, should recognise that improvements in the management of rare cancers ‘can provide unique opportunities to enhance learning relevant to all cancers’.
7.12Relatedly, the committee notes that much of the evidence it received about data, referred to broader health data challenges, and cancer data in general, rather than specific matters regarding data for rare and less common cancers. The committee considers that these broader health and cancer data matters are still pertinent to the inquiry, but notes that wherever possible, it will discuss the evidence received that specifically relates to rare cancer data.
Overarching calls for data improvements and reforms
7.13The committee heard broad calls and suggestions from inquiry participants to improve and reform cancer data in Australia.
7.14The Department of Health and Aged Care (the department) noted that improving cancer data will provide further insight into patterns and trends of diagnoses, and enable policy makers to better target initiatives and improve outcomes for people affected by cancer, including those with rare and less common cancer types.
7.15Similarly, the National Aboriginal Community Controlled Health Organisation (NACCHO) submitted that accurate data collection and reporting are critical to understanding the prevalence, incidence, and outcomes of all cancers. It also outlined that improvements to data collection and reporting will facilitate evidence-based policy development and inform targeted interventions to improve overall health outcomes.
7.16Cancer Australia told the committee that there is a need for better and more comprehensive cancer data in Australia to improve patient outcomes and health system performance. Cancer Australia’s website also notes that improving the collection, access, analysis and reporting of national cancer data will help to better understand unwarranted variations in cancer outcomes across the Australian population.
7.17The Daffodil Centre similarly emphasised that up-to-date, accessible and linked datasets are ‘increasingly important for improved patient outcomes’, in terms of delivering optimal care for individual patients now, and for research to inform treatment technologies and approaches into the future.
7.18The Daffodil Centre acknowledged that substantial work has been undertaken over the past 20 years to address many of these well-established health data challenges, such as the introduction of Australia’s My Health Record, the Australian Digital Health Agency, and several other government consultations and strategies. However, they considered that in their experiences as clinicians, researchers and advocates working with consumers, these initiatives ‘only scratch the surface of what could be achieved if there were fundamental changes in how patient data is collected, managed and accessed’.
7.19The Daffodil Centre recognised that these are large challenges, but cautioned that without action, many existing data issues will continue to worsen due to increased fragmentation and an inability for data systems to keep pace with technological developments.
Calls for a national cancer data framework
7.20Several inquiry participants advocated for a centralised, national cancer data registry, framework, or ecosystem.
7.21The VCCC Alliance, a partnership of 10 cancer research, academic and clinical institutions in Victoria, considered that data collected on a central registry with matched patient outcomes ‘will be an invaluable resource’ for clinicians and researchers alike, and may also lead to increased investment from pharmaceutical companies. It noted that a centralised data registry will require significant investment from the Commonwealth, and that legislation would also be required to ‘ensure a standardised health data sharing model that facilitates secure data exchange’.
7.22Ms Megan Varlow, Director of Cancer Control Policy at Cancer Council Australia similarly advocated for a national data framework:
I might be extremely optimistic, but the idea of a national data framework which brings all of the different data collections together, implements a national minimum dataset across the country and then thinks about bringing in genomic and other collections—which we know are there at an individual level but are not collected at the level of the population—is what we want to see...
7.23In further evidence to the committee, Cancer Council Australia noted it has long advocated for a ‘national-deidentified linked health dataset that brings together all cancer datasets and links to datasets, including data from electronic medical records’. Cancer Council Australia stated that the ability to link this data ‘will provide a complete picture of the factors that influence cancer care and outcomes’.
7.24Roche, a pharmaceutical and biotechnology company, specifically recommended that the Australian Government ‘set up a central registry with minimum data collection standard for rare cancers in line with the recommendations from other key stakeholders’.
7.25The department outlined that a priority area for action under the Australian Cancer Plan (the Plan), is the development and implementation of the National Data Framework and minimum dataset. The department submitted that the National Data Framework will provide a pathway for ‘improving the collection and reporting of comprehensive data across the cancer control continuum’.
7.26According to the Plan, which was launched in November 2023, the national cancer data framework is expected to be developed within two years.
7.27Further detail on Strategic Directive Four ‘Strong and Dynamic Foundations’ of the Plan, and the relevant goals and timelines for this work, is outlined in the figure below.
Box 7.1 Australian Cancer Plan, Strategic Objective 4: Strong and Dynamic Foundations,
2-year goal: Nationally agreed frameworks for collection and reporting of comprehensive cancer data, and implementation of new technologies into routine cancer care, with a focus on research priorities that drive innovation and fast-track opening of cancer clinical trials in Australia.
5-year goal: A national cancer data ecosystem supporting evidence-based, innovative models of care which incorporate national uptake of advanced technology and infrastructure, underpinned by world-class research and a clinical trials landscape in which all Australians have equal access.
10-year ambition: A modern, fit for purpose cancer control infrastructure, advanced by the innovative application of technology, research and data to improve Australia’s cancer outcomes. |
Source: Cancer Australia, Australian Cancer Plan, Strategic Objective 4: Strong and Dynamic Foundations, www.australiancancerplan.gov.au/so/strong-and-dynamic-foundations (accessed 10 April 2024).
7.28The department explained that Cancer Australia will lead the development of the National Data Framework, in partnership with the department, the AIHW, state and territory governments, and the cancer control sector.
7.29Professor Dorothy Keefe, Chief Executive Officer of Cancer Australia elaborated on this key action of the Plan at a public hearing:
… one of the foundational pieces of the implementation of the Australian Cancer Plan is the cancer data framework. We need a cancer data framework for Australia, and we need a minimum data set for collection. The data needs to be end to end, not just the bit where you're in the mainstream health system. A group at Cancer Australia is working on that now, in partnership with the AIHW and the cancer councils, because Cancer Council Australia had done some work in that area too.
7.30Some inquiry participants acknowledged these commitments of the Australian Cancer Plan, for example, Professor Karen Canfell, Director of The Daffodil Centre, expressed support for the national cancer data framework as a key priority under the Plan. She considered it important to include genomic and genetic information, as well as information on patient’s care pathways, in the minimum capture of the dataset.
7.31Associate Professor Christopher Steer, President of Private Cancer Physicians of Australia, told the committee that everyone associated with the management of cancer in Australia is ‘crying out for systematised, standardised data collection’ to inform appropriate treatment decisions, and expressed his hope this comes to fruition through actions under the Plan.
Calls for a national neuroendocrine tumour registry
7.32The committee also heard more specific calls for a national neuroendocrine tumour registry. Peter MacCallum Cancer Centre called for ‘sustainable and targeted funding’ to support a national neuroendocrine tumour registry, and added:
Resources to support a national registry database is also critical for enabling quality research to enhance our understanding of the disease and to address gap in knowledge of survival care for patients with NET in Australia.
7.33NeuroEndocrine Cancer Australia noted that it sponsors the only national neuroendocrine tumour registry, called PLANET (PLAnning for optimal treatment of NETs) which aims to ‘fill the data gap that exists due to a lack of randomized clinical trials in neuroendocrine cancers and the inefficiencies in the state cancer registries’. NeuroEndocrine Cancer Australia submitted that funding is vital for the ‘sustainability and progression of the PLANET registry’ to ensure the registry is maintained.
Addressing the changing nature of how cancer types are classified
7.34As noted in Chapter 1 of this report, the committee was made aware that the way cancer is classified is changing, with inquiry participants explaining that with improved technology and understanding of cancer in recent decades, the classification of cancer is moving away from descriptions based on tumour location (body part), to classification of subtypes at the genetic and molecular level.
7.35Associate Professor Benjamin Loveday, Surgical Oncologist at the Peter MacCallum Cancer Centre considered that the practice of classifying cancers by body part ‘is convenient but minimally helpful’. He explained that each bodypart can have many different types of cancer, which can all behave differently – so categorising things by body part makes such information ‘murky’ and ‘meaningless’ for clinicians.
7.36Associate Professor Loveday emphasised that having a precise understanding the exact type of cancer is crucial:
We really need to know what is the type of cancer we're dealing with. That's the key part of information. That's more difficult but it's much more relevant. If we're going to put effort into something, we should put effort into the right thing.
7.37Along with his colleague Associate Professor Grace Kong, a Medical Consultant, Nuclear Medicine Physician and the Co-Chair of the Neuroendocrine Tumour Unit at Peter MacCallum Cancer Centre, Associate Professor Loveday proposed that after subtype, ‘body part’ should then be captured as a subset in cancer data.
7.38Dr Anna Johnston, Director of Clinical Haematology at the Royal Hobart Hospital, also considered that both type and site should be captured by databases, which would enable data to be analysed either way.
7.39Mrs Kate Wakelin, Neuroendocrine Tumour Clinical Nurse Consultant at the Peter MacCallum Cancer Centre, noted that in addition to neuroendocrine and lung cancers, other cancers would also benefit from this lens. She emphasised that the specific subtype of cancer has ‘far more implications on the treatment, the prognosis and the wellbeing of the patient than the body part it's grown from’.
7.40Rare Cancers Australia flagged that the rare molecular sub-types of cancers are not yet included in the statistics collated by the AIHW. It considered that as a result of this, estimates for the proportion of all rare and less common cancer cases in Australia are ‘significantly underestimated’.
7.41Rare Cancers Australia specifically stated that action is required to improve AIHW data collection for rare and less common cancers, to include rare sub‑type level information.
7.42Ms Meredith Cummins, Chief Executive Officer of NeuroEndocrine Cancer Australia also raised concern that the AIHW reports cancer data by body part, and explained the challenges this creates in the neuroendocrine cancer context:
One problem that we do have with the Australian Institute of Health and Welfare data is that they're now reporting all cancers by body part. As we know, neuroendocrine cancer can happen anywhere in the body, so it makes it very difficult for us to get true data, unless we really dig down to the histology of the disease. If it's in the pancreas, we have to look to see whether it's an adenocarcinoma or a neuroendocrine tumour, so it makes it very difficult to see what the numbers are and to get an accurate amount.
7.43Ms Cummins proposed that there be a review of how cancer is classified, she specifically suggested:
Rather than just having breast cancer, ovarian cancer and brain cancer, it should be put down as neuroendocrine, neoplasia or neuroendocrine cancer. Then there should be subsets of that so that we can actually collect the appropriate data. I think it's up to the individual cancer registries around the states as well to actually incorporate that so that then it can be nationally recorded and available.
7.44The Daffodil Centre and the University of Sydney Cancer Research Network also considered that improved data collection, organised by rare cancer and subtypes will be key to both informing and predicting responses to tailored treatments. In particular, it recommended that there be ‘greater recognition of the increasing number of rare cancers classified as subtypes of more common cancers’.
A lack of data regarding cancer stage at diagnosis
7.45The committee heard from representatives of the Australian Cancer Atlas (theAtlas), an initiative which aims to quantify the geographical variations of the impact of cancer across the Australian community, by bringing data together from all states and registries, into an interactive, digital platform.
7.46Representing the Atlas, Dr Kerrie Mengersen, Distinguished Professor at the Centre for Data Science at Queensland University of Technology, told the committee that its research has found substantial evidence that incidence and survival of rare cancers, including neuroendocrine tumours, varies markedly across geographic areas in Australia. Dr Mengersen advised that areas with higher incidence, tend to have lower survival rates, and that a larger proportion of areas in more remote or socioeconomically disadvantaged regions have higher incidence of rare cancers and poorer survival outcomes, when compared to major cities.
7.47However, Dr Peter Baade, Senior Manager of Descriptive Epidemiology at Cancer Council Queensland, also representing the Atlas told the committee that it is difficult to determine the reasons why this variability occurs.
7.48Dr Baade told the committee that not all detail around the clinical characteristics of cancers are routinely collected at a population level. Dr Baade specifically pointed out that detail around the stage of disease and the spread of the cancer, at the time of diagnosis, is not captured.
7.49Dr Baade explained that this makes it difficult to determine whether geographical variability in cancer outcomes are ‘predominantly driven by better and earlier diagnosis or if it's predominantly driven by the details about better treatment or use and management afterwards’.
7.50He added that until the drivers of outcomes are able to be quantified, the goal of reducing the significant amount of geographical variability in cancer outcomes across the country will be compromised.
7.51Cancer Australia also recognises the need for high quality, comprehensive national data on the stage (including tumour, node, and metastasis) of cancer at diagnosis. It notes that ‘the lack of information on cancer stage at diagnosis is a fundamental gap in Australia’s national cancer data’, and that such data would add ‘significant value’ to existing data on incidence and mortality for ‘monitoring service needs, patterns of care and outcomes across the population’.
7.52According to Cancer Australia, it is working in conjunction with the AIHW to explore ways to transfer tumour, node, and metastasis stage data into a national database on an ongoing basis.
The accessibility of data for research purposes
7.53The committee heard that current health data systems and structures can make it difficult for health and medical researchers to carry out their work.
7.54For example, Mr Paul Flynn, Group Chief Executive Officer of the Hospital Research Foundation Group explained that even though existing, comprehensive datasets may be available, such as through major hospitals, accessing this data can often be challenging for researchers. He elaborated on these matters and advocated for this issue to be addressed:
… One [issue] is the data that can inform future research. For example, any major quaternary hospital has decades of data. It's access to that data that is difficult. If you are a university and you're not clinically aligned to that hospital, you're going to have trouble getting access to that data even if it's de identified data. There is work going on all over Australia to try and find a legal pathway to that. That would be a very useful outcome if we could find a legal pathway for accredited researchers to be able to access de‑identified clinical data.
7.55Associate Professor Kathy Tucker, a clinical cancer geneticist with over 30 years of experience working with people with rare genetic syndromes, expressed similar concerns. She provided a firsthand example that illustrated some of the challenges researchers can have when attempting to access data:
We were doing a study on adults who have a rare cancer predisposition syndrome where they're at risk of getting lots and lots of tumours. For us to access their data, we had to contact each of the public health services and private health services. It actually takes a lot of time and effort, but all of that information is already there. In the end, we were able to get that information, but it took a lot of cost we could have otherwise used some other way.
7.56Associate Professor Tucker considered that solutions are urgently needed to ensure data can be accessed in a more streamlined way, whilst also being mindful of patient consent.
7.57Professor Anna DeFazio, Convenor of the University of Sydney Cancer Research Network, also discussed these issues. She outlined the ‘challenging and costly’ process researchers undertake when gathering data from a wide range of sources, including various jurisdictional, public and private hospitals, as well as different pathology laboratories.
7.58Professor DeFazio considered that having better access to data ‘can help research overall’, however, she also recognised privacy considerations and the importance of patient consent in this context.
7.59Professor Hamish Scott, Head of Genetics and Molecular Pathology at SAPathology also noted the variety of ethical, legal, infrastructural and technical considerations, whilst calling for improved data sharing in the context of rare cancers:
Clinical laboratory data from standard care and research needs to be available in what we call federated databases nationally, and even internationally, so we can actually understand what's happening with patients with rare tumours. That poses significant legal, technical and infrastructure challenges as well as ethical and social considerations, including health and life insurance.
7.60Finally, Professor Karen Canfell, Director of the Daffodil Centre noted the need for timely access to such data for research, particularly in the context of the Australian Cancer Plan:
In terms of research, I think the challenge has been comprehensive, nationally linked datasets; an enduring resource; and timely access to such data, so we very much support the relevant recommendations in the Australian Cancer Plan, because there's some way to go in achieving all of those aspects.
Data considerations for First Nations communities
7.61Particular considerations regarding data and First Nations individuals and communities were highlighted by some inquiry participants.
7.62NACCHO noted that Aboriginal and Torres Strait Islander communities have rights to the collection, ownership, and application of their data.
7.63Further, at a public hearing of the inquiry, Mr Paul Flynn, Group Chief Executive Officer of the Hospital Research Foundation Group, recognised the key principle of ‘nothing about us without us’ when it comes to First Nations communities, and pointed out that the wishes of First Nations communities in terms of the use of their data, must be considered.
7.64NACCHO raised concern that whilst data for all cancer types for Aboriginal and Torres Strait Islander people should be easily accessible, this is currently not the case. It recommended that the National Agreement on the Closing the Gap (Closing the Gap) Priority Reform Four (which relates to the shared access of data and information) should be implemented to ensure ‘commitment to the collection, handling, and reporting of data at sufficient levels of disaggregation, and in an accessible and timely way’.
7.65NACCHO also outlined that Closing the Gap Priority Reform Four recognises that access to data and information is crucial for Aboriginal and Torres Strait Islander people, communities and organisations to set priorities and drive positive change.
7.66Mrs Tiffany Boughtwood, Managing Director of Australian Genomics noted that a range of matters must be addressed in terms of data which captures the experiences and outcomes of First Nations people with rare and less common cancers. She told the committee:
There's a real challenge with not only capturing the access and outcomes of Indigenous Australians with rare or less common cancers but we also know that rates of participation in clinical trials is vastly less than for non-Indigenous Australians, which is such a challenge. That data is just not captured, so the opportunities to benefit from advancements in genomics and in therapies is not equitably available … A lot of it is resourcing, as per usual, but there are a lot more nuanced elements around visibility of the experience, understanding cultural safety and the experience of racism within health care, which has been increasing over recent years.
7.67Further, as discussed in Chapter 5 of this report, Australian Genomics’ submission to the inquiry, noted that in Australia, there is no mandatory requirement to collect or report on the number of Aboriginal and Torres Strait Islander people who are screened, enrolled, complete or withdraw from a clinical trial.
7.68The committee understands that as noted in the Australian Cancer Plan, under Strategic Directive 4, the following key actions have been committed to:
Action 4.2.4: Establish Aboriginal and Torres Strait Islander-led initiatives which strengthen Indigenous Data Sovereignty and governance of cancer data.
My Health Record
7.69The Australian Digital Health Agency administers the My Health Record system, and explains that it is ‘a safe and secure place to keep your key health information, available to you and your healthcare providers anytime, including in an emergency’. It notes that information such as immunisations, pathology and diagnostic imaging reports, prescription and dispensing information, hospital discharge summaries and more, can be kept inside the system.
7.70Broadly speaking, witnesses had reservations about the value of My Health Record in the context of improving data for rare and less common cancers.
7.71Ms Varlow, Director of Cancer Control Policy at Cancer Council Australia told the committee that ‘My Health Record isn't the place that we get data from for people who are living with and affected by cancer’. She explained that as cancer is a notifiable disease in Australia, medical data comes from state and territory cancer registries, as well as clinical trial data and electronic medical health records across the country.
7.72Ms Varlow advised that most organisations, clinicians, hospitals and services are not using My Health Record in the way that it is designed. She considered that it is currently not useful, but may have some potential:
The use of My Health Record in the way that it was intended would make a big difference. Seeing that playing out in real life is continuing to be a challenge.
7.73In the childhood cancer context, the Sydney Children’s Hospital Network similarly explained that the My Health Record system is not regularly utilised for patients in public hospitals, and it considered that the platform ‘does not contain very much useful information for our patient cohorts’. It continued:
It is difficult to see how My Health Record may be of benefit when trying to access new trials or evidence for childhood cancer…
For children with cancer in Australia, there are many avenues by which data is captured, including the Australian Childhood Cancer Registry, which provides appropriate data to identify the incidence and prevalence of cancer occurring in children in this country. This means there is already a national resource that can be accessed by academia and industry to consider new research.
7.74Associate Professor Christopher Steer, medical oncologist and President of Private Cancer Physicians of Australia, considered that ‘My Health Record is a tool, but certainly not a perfect one’. He suggested that the work underway through the Australian Cancer Plan may be better placed to create ‘a more standardised data collection platform’.
7.75Noting these existing challenges and concerns, some inquiry participants expressed optimism about the future role and potential of My Health Record.
7.76For example, Ms Rachael Anderson, Market Access Director at AstraZeneca noted that currently, there is not enough data in the My Health Record system, however she was hopeful about its future potential:
In an ideal world the My Health Record could be enormously helpful, particularly when we're doing cost-effectiveness analyses. We need so much data, as you were talking about, on prior treatments or diagnostic outcomes, so the My Health Record ideally could be enormously helpful.
7.77Professor Karen Canfell, Director of the Daffodil Centre, also considered that there would undoubtedly ‘be a role for My Health Record in major data linkages of the future’.
7.78Supplementary evidence from Cancer Council Australia was also optimistic about the future of My Health Record, but cautioned that until greater levels of participation with the platform are reached across the whole healthcare system, and all patient-level healthcare data is inputted, it ‘will not reach its full potential’:
[My Health Record] has the potential to be a valuable source of population, individual, and service and system level information about healthcare utilisation and outcomes in Australia. This could provide access to population-wide cancer data which could be used by researchers and service providers to identify where improvements to care and service provision can be made and enable greater insights into the factors that contribute to the development of cancer. This could lead to improved use of health data informing the delivery of programs and services to reduce the impact of cancer in Australia and deliver more equitable cancer outcomes.
Committee view
7.79The committee notes the vast complexities in how cancer data (and health data more broadly) is collected, analysed and made available in Australia, particularly due to the varying number of datasets, data custodians and reporting requirements across Australia’s public and private health sector, and across all states and territories.
7.80However, the committee is of the view that many components of this cancer and health data landscape must be urgently addressed to provide a more accurate picture of cancer diagnoses and trends (including rare and less common types) across the country, and to enable medical practitioners, researchers and policymakers alike, to develop and implement interventions to improve overall health outcomes for patients into the future.
7.81The committee acknowledges that these are significant challenges, but agrees that reforms in this space must be prioritised, noting that technological advancements, and the growing emergence of genomic data will likely deepen data complexities and exacerbate existing issues.
7.82The committee also believes that the data issues it has heard in relation to rare and less common cancers, have illuminated broader cancer and health data challenges. The committee considers that addressing the issues in this space will result in wider learnings and improvements for other cancers and health data more broadly.
National cancer data framework
7.83The committee agrees with inquiry participants that a national cancer data framework is required to bring the disparate data collections across the country together; implement a nationally consistent minimum dataset; and facilitate a standardised, secure data sharing model where information is made available in a timely and accessible way.
7.84The committee understands that work, is already underway under the Australian Cancer Plan, as led by Cancer Australia, to develop and implement a national cancer data framework and minimum data set in the next two years.
7.85The committee considers it vital that this national cancer data framework and minimum dataset is prioritised and delivered to this timeframe. Further, the committee urges Cancer Australia to work closely with key cancer control sector stakeholders including medical professionals, researchers and patients, to ensure that key data issues are addressed in the new framework’s design and implementation.
7.86The committee recommends that the Australian Government ensure the timely delivery of the national cancer data framework and minimum dataset, as per the timeframes set out in the Australian Cancer Plan.
Existing data gaps and challenges
7.87Over the course of this inquiry, the committee heard a range of other data‑related gaps and issues that require reform, and that committee considers that these matters should be addressed throughout the delivery of the Australian Cancer Plan and its data-related actions and goals.
7.88For example, inquiry participants highlighted that the way we understand cancer has rapidly evolved in recent years, moving from classification of cancer by tumour or body part, to more precise, molecular or genomic classifications by subtypes. The committee heard compelling evidence that moving towards this more precise level of classification in cancer data sets would be more helpful for clinicians and patients, and agrees that databases and cancer registries should be collecting and reporting cancer information in this way wherever possible.
7.89The committee understands that AIHW does not currently report cancer data by molecular or genetic subtype, but notes that it draws on data from state and territory clinical registries for its analysis and publication of data. Noting this, the committee encourages the Australian Government to work with states and territories, as well as public and private health services, to shift the way this cancer data is collected and reported – to have a greater focus on molecular cancer types and subtypes.
7.90Further,the committee also recognises that there is a ‘fundamental gap’ in Australia’s cancer data, with information regarding the stage of cancer at diagnosis, not consistently or systematically collected across the country.
7.91The committee recognises that Cancer Australia has made some progress to address this issue, however the committee strongly considers that this work be progressed as a matter of priority, particularly as reforms are implemented via the introduction of the national cancer data framework under the Australian Cancer Plan.
7.92The committee considers the capture of cancer staging data is crucial to increasing our understanding of reasons for geographical variability in cancer outcomes across the country, as well as to better understand the extent to which earlier diagnosis, or treatments are affecting health and survival outcomes.
7.93Finally, the committee was concerned to hear that current data structures and frameworks in Australia can make it challenging for health and medical researchers to carry out their work, with the disparate number of datasets and data custodians across the country is making this information difficult and laborious to access.
7.94The committee notes that patient privacy and consent should always be paramount when it comes to public accessibility and academic use of such data, but it believes that where appropriate, researchers should have easy and timely access to this data to support their work. This is in recognition that timely access to data is vital for individual rare and less common cancer patients as they go through treatment now, but also for improving health outcomes and reducing the impact of rare cancers in the long-term – through future research and treatment breakthroughs.
7.95The committee recommends that the Australian Government, in consultation with the cancer control sector, address the following key data-related issues in its delivery of the national cancer data framework and minimum dataset, under the Australian Cancer Plan:
ensure that data is collected and reported in a way that includes information on both tumour location and body part, as well as molecular level information on cancer type and subtype;
ensure that information on the stage of cancer at diagnosis is consistently captured;
where appropriate, ensure that researchers and academics have access to such data in an accessible and timely way; and
ensure that patient privacy and consent is upheld throughout this work and in any future reforms.
7.96The committee firmly understands that First Nations individuals and communities have rights to the collection, ownership, and application of their data and it emphasises that these rights must be upheld, and remain at the forefront throughout any health and cancer data reforms.
7.97The committee considers that in the context of this inquiry, the Australian Government must prioritise commitments under the National Agreement on Closing the Gap, particularly in relation to Priority Reform Four, which recognises that access to data and information is crucial for Aboriginal and Torres Strait Islander people, communities, and organisations to set priorities and drive positive change.
7.98The committee recommends that any existing or future reforms to health and cancer data, must prioritise, and align with the National Agreement on Closing the Gap Priority Reform Four, to ensure:
commitment to the best practice collection, handling, and reporting of Aboriginal and Torres Strait Islander data; and
that such information and data is available to Aboriginal and Torres Strait Islander people in a timely and accessible way.
Senator Penny Allman-Payne
Chair