Hansard debates

                      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 

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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.

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  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 

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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.