12 March 1991 - Current
IMPROVING CANCER OUTCOMES BILL 2014 Second reading Ms WOOLDRIDGE (Minister for Mental Health) -- I move: That this bill be now read a second time. Speech as follows incorporated into Hansard in accordance with resolution of house: Victoria has a strong and engaged cancer sector that has driven significant improvements in cancer prevention, treatment and research, supported by the legislative framework of the Cancer Act 1958. As part of a 2012 review
of the Cancer Act 1958, stakeholders identified major impediments to cancer research, programs and service planning and called for reforms to enable the collection of a broader range of data, improve access to collected data, and allow data sharing and linkage. The Improving Cancer Outcomes Bill 2014 represents the government's response to address the issues within the existing legislation that were identified by the sector. This bill will meet the desired policy objectives and achieve the modern, principles-based and flexible legislative framework that is required, whilst setting parameters for prescribing specific elements under regulation. It will support improved service delivery and research, deliver better outcomes for those with cancer, and help prevent cancer in the first place. The bill I introduce today adopts an approach that reflects the principles in our existing privacy legislation, which provides protections for health information under the Health Records Act 2001. It continues to recognise the importance of registers in underpinning an organised approach to population cancer screening, and cancer control: this is a long-established best practice approach both nationally and internationally. This approach will consolidate Victoria's leadership in cancer control and strengthen Victoria's ability to respond to scientific, technological and policy developments in cancer into the future. History Victoria has a long tradition of dedicated cancer legislation, the nature and purpose of which have evolved over time. In 1936, the Anti-Cancer Council Act provided for the incorporation and governance of the Anti-Cancer Council of Victoria, empowering the council to raise funds for coordinating and funding cancer research. In 1948 the Cancer Institute Act established the Cancer Institute, subsequently renamed the Peter MacCallum Cancer Institute. Peter Mac provided cancer treatment services and undertook cancer research. Then in 1958 these two pieces of legislation were consolidated into the Cancer Act 1958, which is the basis of the act that has been in operation to this day. By 1980, the importance of information about the incidence of various types of cancer, until that time unknown, was recognised in a new part to the Cancer Act: this part made it compulsory to report diagnoses of cancer to the Anti-Cancer Council. The passage of the Health Services Act in 1988 was a further key change in legislation which brought Peter Mac under the uniform public health service governance provisions of that act. And while cancer legislation continued to evolve, so too did cancer research. In particular, it was found that early detection could lead to cure in some types of cancer. In the case of cervical cancer, it was considered mostly preventable and completely curable if detected early enough. Cervical screening -- known more familiarly to most as pap tests -- was introduced, and with it the need to collect information about its effectiveness. The establishment of a central cervical screening register would allow laboratories with access to previous results to be better placed to detect changes to cervical cells, and enable reminders to be sent to women due for their next screening test. Hence, Parliament enacted the Cancer (Central Registers) Act in 1989, which amended part III of the Cancer Act 1958 to authorise the reporting of pap test information to a central register. This act not only established the Victorian Cervical Cytology Register (the cervical screening register), it also allowed for additional cancer screening registers to be established by regulation. Subsequently, Victoria's breast screening register was first established by the Cancer (BreastScreen Register) Regulations 1994. More recently, researchers established a link between the human papilloma virus (HPV) and cervical cancer. With HPV being considered a precursor to cervical cancer, the act was amended in 2008 to allow for HPV test results to be recorded on the cervical screening register. The inclusion of this information on the cervical screening register facilitated improved clinical management of women participating in the cervical screening program. Victoria currently has three registers: The Victorian Cancer Registry managed by the Cancer Council of Victoria which captures cancer diagnoses, the cervical screening register maintained by the Victorian Cytology (Gynaecological) Service and the BreastScreen Victoria Registry maintained by BreastScreen Victoria. Bringing governance into the modern era It is clear that in the 78 years since the initial 1936 act was passed the nature and purpose of Victoria's cancer legislation has evolved considerably. The Cancer Act 1958, which came into operation on 1 April 1959, has provided the legislative and regulatory framework for cancer prevention, research and treatment, and regulated the governance of the Cancer Council of Victoria, the Peter MacCallum Cancer Institute and the reporting of cancer cases and screening tests to registries. Parts I and II of the 1958 act, which deal with the governance of the Cancer Council Victoria (CCV) and the objectives of the Peter MacCallum Cancer Institute, are historical elements of the early and important efforts to reduce the burden of cancer in Victoria by concentrating resources and expertise in these specific entities. These two entities continue to deliver exemplary contributions to cancer control, however they are now joined by many others. Victoria's cancer sector now consists of multiple organisations, including various peak bodies, research institutes, hospitals and other service providers. Cancer programs and services have been mainstreamed and expertise rests within many different entities and individuals. The sector is funded by multiple sources including government, industry, research grants, philanthropy and public fundraising. Consequently, the governance arrangements in parts I and II of the 1958 act no longer reflect Victoria's present day cancer sector, nor best practice governance principles. Up until 1980, the act focused solely on the work of the Anti-Cancer Council and the Peter Mac in coordinating, funding and providing cancer research and treatment. Since 1980, the focus of the act has shifted towards cancer information, more specifically, information about persons screened for and diagnosed with cancer. Part III, the heart of the act, deals with cancer reporting and registers. The introduction of legislation to allow for the collection and use of information about persons screened for and diagnosed with cancer has delivered enormous benefits to the Victorian community through improvements to the clinical management of individuals, our understanding of cancer and ability to respond to the challenges posed by this disease. The collection and use of cancer information is fundamental to Victoria's response to the challenges posed by cancer.
Notwithstanding the benefits brought about by amendments to the 1958 act, the legislative framework does not capitalise on some of the key developments which have since taken place. Whilst the legislation has undergone many amendments during this time, it has failed to keep pace with advances in research, treatment and prevention, and requires very significant change to support Victoria's current and future cancer information needs. The 1958 act has constituted a major barrier to managing cancer data effectively in Victoria; further amendments will not adequately address the issues. Consequently, the government has chosen to repeal the 1958 act and introduce a new principal act that can meet the policy objectives for this legislation and achieve the modern, principles-based and flexible legislative framework that is required. New directions for cancer control in Victoria Cancer continues to be a leading cause of illness and death in Victoria with around 80 new diagnoses and 30 deaths every day. Cancer imposes a significant social and economic cost on the Victorian community, and the Victorian government invests significantly in cancer services, research, and infrastructure. This investment needs to be underpinned by evidence-based policy and a legislative framework that supports linkages and collaboration across the system and promotes the coordinated use of information and knowledge. This bill complements and supports other legislation to promote and protect public health and wellbeing. These include the Public Health and Wellbeing Act 2008, the Radiation Act 2005 and the Tobacco Act 1987, which together contribute to a more effective cancer control system. The Tobacco Act 1987 specifically seeks to reduce the burden of one of the major causes of cancer death in Victoria -- namely, smoking rates. However, cancer is one of the leading causes of ill health and burden to Victorians and a dedicated cancer act is required to focus public and political attention on cancer awareness, prevention, treatment and research, as well as providing a vehicle for a policy focus on cancer by government, all of which will achieve better health outcomes. The key to driving even greater advances in cancer outcomes in Victoria is the coordinated use of information and knowledge; data linkage and sharing within a modern legislative framework is central to achieving this. Government, health administrators, service providers, researchers, private industry and community members require consolidated information on the characteristics of cancer and its burden on the community. There is a need for intelligence and analysis to enhance our understanding of how cancer and its risk factors affect different populations; how it is being treated and managed; the gaps that exist in service availability; clinical and cost effectiveness; and the impact of policy initiatives on both patient-centred and system-focused outcomes. Data on all of these elements is fundamental for effective planning and the efficient use of resources. There is currently a range of disconnected datasets relevant to understanding cancer control in Victoria and nationally. The current act has been a barrier -- for example, it prohibits ongoing data linkage between Victorian cancer and screening registries, and prohibits collecting and disclosing information with the national HPV vaccination program registry. Hence, a woman's HPV vaccination status could not be recorded with her cervical screening test results, and if she moved interstate her screening results could not be provided to another registry. The new bill will allow this. Effective strategies to integrate and interrogate these datasets will deliver better patient experiences, a more efficient care delivery system and cost-effective outcomes. These strategies require an enabling legislative environment as a matter of urgency. A new Improving Cancer Outcomes Bill for Victoria The principal aim of the new bill is to support Victoria's efforts to reduce cancer incidence, morbidity and mortality and to enhance the wellbeing of those affected by cancer. In order to achieve this aim, the objectives of the bill are to: establish a modern, flexible and principles-based legislative framework; support the Victorian government's overall strategy for cancer control; and strengthen Victoria's ability to respond to scientific, technological and policy developments in cancer. The new bill articulates functions of the Secretary to the Department of Health across the spectrum of health services and systems relating to cancer, and specifies the range of roles that are to be performed by the secretary in fulfilling these functions. The bill empowers the secretary to collect, use and disclose information in order to perform the secretary's functions with respect to cancer. The bill continues the mandatory reporting of cancer diagnosis information. The bill also imposes a mandatory reporting obligation to facilitate the collection of information about cancer screening. Not only is this information useful to mitigate an individual's risks from cancer, it is also crucial to support the planning and funding of cancer prevention programs and services, as well as to inform cancer research. The details of the reporting obligations, including who is obliged to report and what information is to be reported, will be prescribed by regulation. Information that is collected under this bill will be protected under health records legislation. Victorian privacy legislation has evolved in line with consumers' expectations that their health and personal information will not only be protected and used to support individual care, but also contribute to population health benefits through research, monitoring, evaluation, planning, quality and benchmarking activities. The health privacy principles establish clear provisions for an individual's right to access their information and to be informed of how it may be used. In addition, as part of operational implementation patients may elect not to receive reminders to undergo screening, and options for opting off will also be further considered as part of subordinate regulations. By clarifying the purposes for which cancer information is collected, and making clear the parameters surrounding its use and disclosure, the bill provides a clear framework for managing data relating to cancer. Better patient outcomes can now be achieved by facilitating appropriate data linkage and integration as well as supporting research. A cancer plan for Victoria A new act brings a new opportunity for government to set the directions for driving cancer control improvements and innovation for Victoria. As such, for the first time the bill requires the preparation of a regular four-yearly cancer plan, providing an essential strategic policy framework for cancer in Victoria; this is appropriate given the significant burden of cancer in our community. It is intended that the cancer plan
will draw upon the information collected by the secretary in accordance with the new legislative scheme, to: report on the status and burden of cancer in Victoria; establish Victoria's objectives and policy priorities with respect to cancer; state how these objectives and policy priorities will be achieved based on the available evidence; and specify how the state will work together with the sector and other stakeholders to achieve these objectives and policy priorities. This important feature provides us with the means to identify and partner with key stakeholders across the cancer spectrum; engaging them in setting the agenda for reducing the cancer burden on Victorians and ensuring their participation as significant players in the implementation of the plan. Acknowledgements As we stand at the cusp of this new era of cancer control, I wish to take this opportunity to formally acknowledge the significant role of the Cancer Council Victoria and Peter MacCallum Cancer Institute. I applaud their efforts as longstanding leaders in their field and successful champions of best practice cancer research and treatment. Cancer Council Victoria and Peter MacCallum Cancer Institute: the Victorian government thanks you for your invaluable contribution, past, present and future. In addition, I would also like to recognise at this time the numerous players in the broader cancer sector: Victorian public health services providing specialist cancer services: including the Victorian Comprehensive Cancer Centre, Olivia Newton-John Cancer and Wellness Centre, Monash Comprehensive Cancer Consortium, the Paediatric Cancer Service, Integrated Cancer Services, metropolitan and regional cancer centres; private health services who provide specialist cancer care and support; healthcare organisations including BreastScreen Victoria and the Victorian Cytology Service for their efforts to prevent and detect cancer early; research institutes; and a range of philanthropic and non-government organisations who raise money for cancer, fund services and research, and provide support and care -- amongst many others -- for the difference they too make to the lives of Victorians living with cancer and their families. All of these individuals and organisations are our partners in the future of cancer control and we look forward to continuing to work collaboratively with you as we strive for better health outcomes for all Victorians. I commend the bill to the house. Debate adjourned on motion of Ms D'AMBROSIO (Mill Park). Debate adjourned until Wednesday, 3 September.