Cancer Australia Connections September 2008

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From the CEO
Cancer Australia continues to work to improve cancer outcomes, through implementing Australian Government cancer programs and working with numerous organisations around the country.
The Government, in its recent budget, has provided additional funding of $5.1 million over the next three years to the National Centre for Gynaecological Cancers (NCGC). As a result of this ongoing commitment of funds, the NCGC Working Group has become the NCGC Advisory Group. Work being undertaken by the Centre is outlined below.
Funding for targeted research initiatives has also been increased by a further $5 million per year over three years, and you can read about our new research developments.
Our CanNET program has reached its funding midpoint and we are continuing to work closely with all the states and the Northern Territory to develop these pilot cancer service networks. We look forward to further positive developments in the period to June 2009.
I would like to take this opportunity to thank the Cancer Australia Advisory Council and the Advisory Group members for their tireless work and the expert advice they provide Cancer Australia.
Death of Christopher Newell AM, Chair of the National Consumer Advisory Group
It is with great sadness that Cancer Australia acknowledges the death of the Chair of Cancer Australia’s National Consumer Advisory Group, the Reverend Dr Christopher Newell. Christopher died on 24 June 2008 in Hobart.
Christopher will be fondly remembered for his dry wit and humour and his incredible commitment and dedication to ensuring that the consumer voice was clearly heard. He provided wonderful guidance to the National Consumer Advisory Group and his death will be a great loss to this group.
Christopher was appointed a Member of the Order of Australia for services to people with disabilities, to health consumers and the development and practice of ethics. He was an Associate Professor in medical ethics at the University of Tasmania and a delegate at the recent '2020 Summit' convened by the Prime Minister, the Hon Kevin Rudd, in April 2008 in Canberra.
Professor Newell is survived by his wife Jill and his three daughters Hannah, Hayley and Christine. We offer Christopher’s family our deepest sympathy for their sad loss.
Updated Cancer Australia Details
In May 2008, Cancer Australia relocated its Canberra offices to Woden. Cancer Australia’s four national managers, their responsibilities and their contact details are as follows:
Research and Clinical Trials
Dr Cleola Anderiesz
cleola.anderiesz@canceraustralia.gov.au
National Centre for Gynaecological Cancers/ Consumer Support
Susan Hanson
susan.hanson@canceraustralia.gov.au
Education and Service Development
Dr Joanne Ramadge (Deputy CEO)
joanne.ramadge@canceraustralia.gov.au
Chief Financial Officer/ Chief Operating Officer
Josephine Stevens
josephine.stevens@canceraustralia.gov.au
Cancer Australia’s postal address is unchanged:
P.O. Box 1201, DICKSON ACT 2602.
However our main switch number is now (02) 6289 1373.
National Centre for Gynaecological Cancers Update
Cancer Australia has successfully secured ongoing funding of $5.1 million for the next three years to consolidate and further develop the National Centre for Gynaecological Cancers. Susan Hanson has been appointed Manager of the National Centre for Gynaecological Cancers, and will also retain management of Consumer Support activities. Both roles focus on improving outcomes for people affected by cancer through: supporting people affected by cancer; encouraging consumer involvement, building the evidence for best practice and enabling the workforce to provide quality care.
Susan and the team - Julie Mueller, Ella Curnow, Anne Molan, Karla Lister and Nicolle Burt - are currently developing the second phase of the National Centre for Gynaecological Cancers’ work. Susan would like to take the opportunity to acknowledge the work of the National Centre for Gynaecological Cancer Advisory Group, and of Dr Joanne Ramadge, Bernie Loughrey, Jenny Aitchison and Katie Saxby who were pivotal in laying a strong foundation for the Centre’s program activities.
A busy first year of work has drawn to a close for the Centre with final reports received and planning commenced for the 2008-09 financial year. The Centre has developed its own website at www.gynaecancercentre.gov.au and has produced a brochure on the NCGC that can be obtained from the website or by calling the Project Manager of the Centre on 02 6289 1466.
A summary of the work undertaken by the Centre under the guidance of the National Centre for Gynaecological Cancers Advisory Group is described below:
Development of information/ fact sheets for consumers and health professionals on gynaecological cancers
The Centre commissioned GSB Consulting to undertake an extensive review to identify available international and national gynaecological cancer resources and where there were resource gaps. Building on this work, the Centre has recently announced a Request for Tender, for the development of a suite of gynaecological information/fact sheets for consumers and health professionals.
This project will draw together existing best practice resources and supplement them with new or revised materials which reflect Australian health care. This will ensure that the gynaecological cancer journey – from diagnosis, through active treatment and care, is supported at every point by best practice information/fact sheets. These information sheets will be accessible through the National Centre for Gynaecological Cancers website.
This Request for Tender was advertised on AusTender on 1 August 2008. The Tender closed on 26 August and we hope that a contract will be signed with the successful organisation by mid-October.
Consumer Fellowship
The National Centre for Gynaecological Cancers has also commissioned the Winston Churchill Memorial Trust to administer and award the Centre’s first Consumer Fellowship in 2008-09. The Jeannie Ferris, Cancer Australia Consumer Churchill Fellowship will be advertised later this year.
The Fellowship will support a consumer to develop a project to assist in reducing the impact of gynaecological cancers on affected women, their families and carers. As the title suggests, it will be open to women who have had a gynaecological cancer or a person who has been directly involved in supporting a woman with a gynaecological cancer. For more information on the Winston Churchill Memorial Trust go to: http://www.churchilltrust.com.au/
New Clinical Fellowship
In 2008-09 the National Centre for Gynaecological Cancers will co-sponsor its first clinical fellowship with the National Health and Medical Research Council’s (NHRMC) National Institute of Clinical Studies (NICS). This Fellowship will support a health professional, with knowledge and experience in the area of gynaecological cancers, to undertake a project that identifies and addresses a current important evidence-practice gap in the management of gynaecological cancers. For more information on the National Institute of Clinical Studies go to: www.nhmrc.gov.au/nics/ The Clinical Fellowship was released on Friday 29 August.
gplearning module on Gynaecological Cancers
A new online learning activity on the diagnosis and management of patients with gynaecological cancers has been launched on the Royal Australian College of General Practitioners’ (RACGP) gplearning website: www.racgp.org.au This interactive resource is designed to increase General Practitioners’ knowledge and skills in recognising and managing patients with ovarian, cervical, vulval and endometrial cancers.
Priority areas for the Development of Clinical Practice Guidelines for Endometrial Cancer
A consultation process was recently completed which identified priority areas for the development of clinical practice guidelines for endometrial cancer. We are currently planning the next phase of this work.
Referral patterns of care by GPs and Gynaecologists for women with gynaecological cancers
The Centre has commissioned Monash University to develop and pilot a survey instrument to measure the referral patterns of care for women affected by gynaecological cancers. We are currently planning the next phase of work for this project.
Development of a minimum dataset for gynaecological cancers
The National Centre for Gynaecological Cancers, in collaboration with the National Breast and Ovarian Cancer Centre (NBOCC), has developed a minimum dataset and data dictionary on gynaecological cancers. The development of this dataset will help facilitate the collection of nationally consistent information on gynaecological cancers.
Review of gynaecological cancers workforce
The National Institute of Labour Studies has been commissioned by the Centre to review the gynaecological cancers workforce. This project is examining a number of workforce issues including:
- existing data on the gynaecological cancers workforce;
- actions taken on workforce issues by state and territory governments in their Cancer Control Plans; and
- the views of the gynaecological cancers workforce.
This project has been extended for a further three months so that the project team can undertake a review of national and international literature on innovative workforce models of care and practice. This review will assist us with our next phase of work.
Boosting Cancer Research
Support for Cancer Clinical Trials program: Two new clinical trials groups
Under the Support for Cancer Clinical Trials program, Cancer Australia has established two new multi-site, collaborative cancer clinical trials groups – the Cooperative Trials Group for Neuro-Oncology and the Australasian Sarcoma Study Group.
More than 1,000 cases of neurological tumours (cancers affecting the central nervous system, such as the brain and spinal cord) are also diagnosed each year in Australia, with a high mortality rate.
Sarcomas are malignant tumours affecting connective tissue such as muscle and bone. More than 800 Australians are diagnosed with sarcomas each year, with a high proportion of cases occurring in young adults and adolescents.
Funding these groups will improve access to clinical trials for people with these cancers by increasing the number of studies and increasing, over time, the number of participating sites. Cancer Australia’s provision of seed funding to the neuro-oncology and sarcoma trials groups will also increase national involvement of clinicians and researchers in cancer clinical trials.
Cancer Australia is also pleased to announce establishment of two new national initiatives to support the multi-site, collaborative national cancer clinical trials groups, to increase their capacity to conduct cancer clinical trials. They are the:
Cancer Australia Chair in Cancer Quality of Life
Professor Madeleine King has been appointed to the position of Cancer Australia Chair in Cancer Quality of Life for the next three years. The chair will be based at the University of Sydney, within the national Psycho-Oncology Co-operative Research Group, which has created a Quality of Life Office.
The Cancer Australia Chair in Cancer Quality of Life will provide expert advice and support to the multi-site, collaborative national cancer clinical trials groups funded under the Support for Cancer Clinical Trials program, to initiate and incorporate quality of life studies into cancer clinical trials.
A diagnosis of cancer and its treatment has a considerable impact on the quality of life of individuals, their families and carers. Quality of life encompasses physical and psychological functioning, and supporting research and clinical trials in this area helps identify effective interventions which can improve cancer outcomes.
Cancer Clinical Trials Development Unit
As part of the Support for Cancer Clinical Trials program, the services of a Cancer Clinical Trials Development Unit have been engaged to provide:
- expert advice, support and trial development services for the newly established multi-site, collaborative national cancer clinical trials groups, and
- expert advice, mentoring and support services in the area of health economics and pharmaco-economics for both new and existing multi-site, collaborative national cancer clinical trials groups funded under the program.
The Unit’s services will be provided jointly by the NHMRC Clinical Trials Centre, The University of Sydney and the Centre for Biostatistics and Clinical Trials, Peter MacCallum Cancer Centre.
The centralisation of Cancer Clinical Trials Development Unit services will afford economies of scale in the provision of technical advice and support to the multi-site, collaborative national cancer clinical trials groups.
The Unit will assist the new national groups to build their capacity to design and conduct quality cancer clinical trials and will help all national cooperative trials groups to gather economic evidence for future decision making. Other services from the Unit can be purchased by existing groups.
Priority-driven Collaborative Cancer Research Scheme (PdCCRS)
The Priority-driven Collaborative Cancer Research Scheme (PdCCRS) aims to support research which reduces the impact of cancer in the community and improves outcomes for people affected by cancer through a coordinated national approach to funding cancer research in identified priority areas.
Cancer Australia is pleased to announce that 24 applicants were successful from the 2007 Round of the PdCCRS. These grants will be funded by Cancer Australia in partnership with the Diagnostics and Technology Branch of the Department of Health and Ageing, the Prostate Cancer Foundation of Australia and the National Breast Cancer Foundation. Details of successful applicants can be found on the Cancer Australia website.
In the 2008 round of the PdCCRS, Cancer Australia has partnered with beyondblue: the national depression initiative, Cancer Council Australia, Cure Cancer Australia Foundation and the National Breast Cancer Foundation. The call for applications opened in December 2007 and closed on March 14 2008. The National Health and Medical Research Council (NHMRC) is currently reviewing applications as the first stage of the assessment process. Results are expected to be announced towards the end of 2008.
Listing of the Cancer Australia Programs on the Australian Competitive Grants Register
Cancer Australia’s Priority-driven Collaborative Cancer Research Scheme (PdCCRS) and Support for Cancer Clinical Trials program are now listed on the Australian Competitive Grants Register (ACGR).
Funding awarded through the PdCCRS and Support for Cancer Clinical Trials program can now be included in applications from universities to the Department of Education, Employment and Workplace Relations (DEEWR) for additional infrastructure funding support via the Research Infrastructure Block Grants (RIBG) scheme.
Listing on the ACGR adds financial value to grants awarded through the PdCCRS and the Support for Cancer Clinical Trials program, by providing an opportunity for universities to access additional funding for infrastructure support for research.
National Audit of Cancer Research Projects and Research Programs
Cancer Australia has completed a National Audit of Cancer Research Projects and Research Programs, 2003-2005. Results from this audit provide the first national picture of Australian and international funding to Australian cancer research projects and research programs.
The audit identifies where funds were spent across different tumour streams and the continuum of cancer research. This audit provides important baseline data on the investment in cancer research projects and research programs at the national level.
Data from this audit can assist both the Australian Government and other funders of cancer research to identify areas for future investment and for planning cancer research. The report from the National Audit of Cancer Research Projects and Research Programs can be found on the Cancer Australia website.
Supporting Health Professionals
Medicare Benefits Schedule (MBS) Items that Support Primary Care
The CanNET program is endeavouring to better engage primary care and other private clinicians and services in cancer control. A range of MBS items are available to ensure that private clinicians involved in the delivery of cancer care are remunerated for their time and input. Despite their availability, many of these MBS items are underutilised, especially those related to multidisciplinary care planning.
To assist the CanNETs, Cancer Australia has generated a two-sheet quick reference document that outlines the Medicare items under which a variety of cancer-related consultations may be charged. This resource will assist the CanNET sites and all those working in primary care to:
- address some of the barriers to clinician engagement in activities such as multi-disciplinary team meetings,
- provide information for general practitioners who would like to be more involved in cancer treatment and survivorship planning with patients, and illustrate the range of MBS items available for cancer care, and
- promote the consistent application of these Medicare items in cancer control across Australia.
The Medicare items for Cancer Care resource is available on the Cancer Australia website.
Cancer Learning website

The creation of a central web-based information hub ‘Cancer Learning’ is one of the centrepieces of the Professional Development Packages for Cancer Professionals Program. Cancer Learning is underpinned by a national continuing professional development framework. This framework now covers all stages of the patient journey and is currently being reviewed by experts for validation.
Cancer Learning is operational and currently being piloted with a range of cancer professionals in conjunction with another Cancer Australia initiative, the Cancer Services Network National Demonstration Program (CanNET). Cancer Learning can be accessed at http://www.cancerlearning.gov.au/
Cancer Learning incorporates continuing professional development packages in five key areas:
- latest treatments and evidence based practice,
- fundamentals of oncology,
- coordination of care,
- multidisciplinary care, and
- supportive care, including psychosocial support.
This website has an extensive range of information/resources to enable health care providers to:
- find continuing professional development material,
- build education programs, and/or
- plan their own professional development.
It will continue to undergo testing and refinement in the lead up to its official launch later this year. In 2009, the Cancer Learning team will be working closely with the National Cancer Nursing Education Project (EdCaN) to further develop and maintain the Cancer Learning hub. The team will also be responsible for integrating the material developed by EdCaN into Cancer Learning.
A National Professional Development Framework for Cancer Nursing
On 12 June 2008, Professor Peter Brooks, University of Queensland’s Executive Dean of the Faculty of Health Sciences, launched EdCaN’s A National Professional Development Framework for Cancer Nursing at the 11th CNSA Winter Congress. This framework outlines both a projected pathway for cancer nursing specialisation and the expected capabilities at each stage. This document is the culmination of a two year consultation process involving people affected by cancer, cancer (and other) nurses and other key stakeholders. This framework can be downloaded from: http://www.edcan.org/pdf/EdCanFrameworkr1-4.pdf
Curriculum resources to support cancer nursing professional development are being developed. These modules will be avilable in CD-ROM and online formats in early 2009.
Standard Cancer Treatment Program (CI-SCaT)
The Cancer Institute NSW (CI NSW) Standard Cancer Treatment Program (CI-SCaT) https://www.treatment.cancerinstitute.org.au/ was originally developed to encourage standardised cancer treatments and is currently focused on administration of chemotherapy in the oncology setting. Cancer Australia is now funding the Cancer Institute NSW to develop and trial protocols for general practitioners’ involvement in mid-cycle adjuvant chemotherapy for breast and colorectal cancers.
The Primary Health Care Reference Group, consisting of academics, general practitioners, community nurses, palliative care specialists, aboriginal health workers, and a member of the Royal Flying Doctor Service has been established to support the development of the protocols. These protocols are intended to further support the role of primary care in cancer control.
Building Consumer Support
Building Cancer Support Networks Grants program
Round 1: All but four of the fifteen projects funded under the first round of the Building Cancer Support Networks Grants program have concluded, and a number of final reports are currently being assessed by Cancer Australia. These grants provided seed funding to assist community based organisations in establishing support for people affected by cancer.
A range of organisations were supported through this grants round, including national organisations such as Brain Tumor Australia, the Australian Lung Foundation, the Prostate Cancer Foundation of Australia, the Leukaemia Foundation of Australia and Ovarian Cancer Australia. Local organisations funded included the Mallee Health Centre and CanRevive, a Chinese community organisation especially established for Chinese speaking people in NSW affected by cancer.
The organisations funded undertook a variety of activities during the three year period of their projects. Some of these activities included:
- Supporting men with prostate cancer by providing information and social support,
- Developing a 'virtual support group' for people with haematological cancers,
- Providing telephone and social support for members of the Chinese community,
- Maintaining support groups and developing resources for people affected by ovarian cancer, and
- Developing new support groups in rural areas of South Australia and Victoria.
Round 3: The third round of the Building Cancer Support Networks Grants program is now complete, with 17 organisations contracted to undertake a variety of projects to support people affected by cancer.
Information about the Round 3 projects which have been successful in securing a grant is on the Cancer Australia website.
Consumer Values Statement
One of the key outcomes of the National Consumer Advisory Group has been the development of a Consumer Values Statement. This document provides a set of aspirational statements which outline some key values that consumers on the National Consumer Advisory Group believe should be incorporated throughout Cancer Australia’s activities.
The National Consumer Advisory Group is keen to receive any feedback or comment on the Consumer Values Statement, which is on the Cancer Australia website.
The National Framework for Adolescent and Young Adults with Cancer
Cancer Australia in collaboration with CanTeen and led by an expert National Reference Group of consumers, clinicians, researchers and policy makers have developed a national framework to guide quality care for adolescents and young adults with cancer.
Consumer Resource Development Project
Cancer Australia has developed a number of resources to assist with the support of people affected by cancer, and to assist consumers in their roles within Cancer Australia.
These resources were developed for Cancer Australia by the Health Issues Centre in Victoria following considerable consultation with consumers and consumer organisations across Australia.
The resources are currently in the process of been edited and formatted prior to printing. They should be available on the Cancer Australia website in the next few months.
Improving cancer data
Three key documents supporting the development of a National Cancer Data Strategy for Australia are nearing completion. It is anticipated that following documents will be published and become available on-line over the coming months:
- The National Cancer Data Strategy: Foundation Document was removed from the Cancer Australia website following a period of public consultation. The feedback received was generally positive. Wherever possible, the feedback has been incorporated into a revised version of the document.
- Datasets for Cancer Research and Control in Australia lists national cancer-related data sets and their custodians.
- The Specialist Minimum Dataset Development for Specific Cancers in Clinical Cancer Registration will provide a framework for the development of specialist minimum data sets where these are not currently available.
We are continuing to work towards improving data quality and access related to bio-specimen tissue banks. A collation of datasets available from key tissue banks across the country has recently been completed. The report will enable a comparison to be made between these organisations, which will highlight the commonalities and gaps in their data collections, and will guide the development of national standards and guidelines for bio-specimen tissue bank datasets.
The working group to review the Clinical Cancer Core Data Set has been established and will meet in the latter part of the year.
Survival and Prevalence Report
Cancer Australia has collaborated with the Australian Institute of Health and Welfare (AIHW) and the Australasian Association of Cancer Registries (AACR) to produce Cancer survival and prevalence in Australia - Cancers diagnosed from 1982 to 2004. The publication is an important contribution to cancer control at a national level because in addition to nationally reported incidence data, for the first time there are nationally reported prevalence data. The addition of current prevalence data will assist with policy development, workforce and service planning and will be influential in informing priorities for research.
The report is available through the AIHW and Cancer Australia websites.
National Meetings
Strategic Forum
The most recent meeting of the Strategic Forum was held 31 March 2008. The Strategic Forum brings together senior bureaucrats and cancer clinicians from each state and territory, Cancer Australia, the Department of Health and Ageing, the National Aboriginal Community Controlled Health Organisation, cancer consumers, the New Zealand Cancer Control Council, the Private Cancer Physicians Australia and the Australian Health insurance Association, to explore common issues in cancer control and to identify ways forward in agreed areas.
The meeting in March addressed two issues: cancer data and the Service Delivery Framework for Adolescent and Young Adults (AYA) with cancer.
Issues of cancer data that were addressed included; recording metastatic status; Indigenous identifiers and access to cancer data. The forum invited guest speakers with expertise across a range of areas that impact on cancer data and included David Roder (Data Manager Cancer Australia), Penny Allbon (CEO Australian Institute of Health and Welfare), Andrew Hayne (Director of Policy, Office of the Privacy Commissioner), Bill Lawrence, (Deputy CEO Australian Commission on Safety and Quality in Healthcare), Graham Giles (Chair, Australian Association of Cancer Registries), and Peter Thomson (Medicare Australia).
The Forum agreed that there was a need to:
- Develop strategies that would allow the release by the AIHW of cancer registry nationally aggregated data to national agencies,
- Develop strategies to ensure the recording of Aboriginal and Torres Strait Islander status on cancer registries,
- Develop strategies to initiate the recording of metastatic status, and
- Identify key stakeholders to implement the AYA Framework across the public and private health sectors.
There was also agreement that Cancer Australia, the Australian Institute of Health and Welfare, the National Aboriginal Community Controlled Health Organisation and the Australian Association of Cancer Registries would lead work in these areas. Progress in relation to these issues will be reported to the next meeting of the Forum in October 2008.
In relation to the AYA Service Delivery Framework, the Forum agreed to explore strategies to provide workforce education and training resources to assist the implementation of the AYA framework.
Cancer of Unknown Primary Meeting
A small group of clinicians, researchers and epidemiologists met in Sydney on 16 June 2008 to discuss Cancer of Unknown Primary (CUP) in Australia. Professor David Roder presented an overview of national incidence and mortality data for CUP, which, coupled with the recent Cancer Institute NSW monograph on Unknown Primary Cancer in New South Wales (April 2008), provided an excellent basis for further discussion.
Whilst all people diagnosed with cancer have to deal with uncertainty, this is magnified in those with a CUP diagnosis, where the primary site cannot be identified, or course of treatment readily agreed upon. People diagnosed with CUP have very low 5-year survival.