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Cancer Australia Connections March 2008

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• From the CEO

  Cancer Australia is tasked with providing national leadership in cancer control. It’s our role to help to bring together the many groups and organisations working in cancer control in Australia. 

  In the eighteen months of operation, Cancer Australia has added significant value to key areas of cancer control at a national level. This includes crucial foundation work being done by the National Centre for Gynaecological Cancers. 

  Since our establishment in late 2006, we have worked with a large number of organisations working in the cancer control sector across Australia, to fill gaps in existing activity, and to add value to make the most of existing programs.
  
  In this short space of time, we have started to make a difference to all our stakeholders – people affected by cancer, cancer care professionals – including primary care, community cancer organisations and peak bodies, researchers, and policy makers. Some highlights of our work include: 
  

  • involving consumers in all our advisory and reference groups, and forming a National Consumer Advisory Group, to ensure consumer interests are paramount in program development and planning;
  • partnering with the Cancer Councils to support development of quality and sustainable support options for people affected by cancer;
  • establishing the National Centre for Gynaecological Cancers in consultation with key stakeholders, to improve awareness and outcomes for women affected by gynaecological cancers;
  • establishing the Cancer Service Networks National Demonstration Program (CanNET) – a partnership with governments in all states and the Northern Territory to improve access to best-practice treatment and support for people with cancer, wherever they live;
  • creating the Priority-driven Collaborative Cancer Research Scheme with community cancer organisations that fund research, to better coordinate research funding in Australia, encourage research collaborations and improve consumer involvement in research, adding an extra $3M in 2007 and up to $8M in 2008 to the available research funds;
  • building capacity of Australia’s national Cooperative Cancer Clinical Trials Groups by supporting existing groups, establishing new groups where there is a need, and developing shared national infrastructure to support cancer clinical trials;
    
  • collaborating with governments, service providers, consumers and cancer data organisations to develop a National Cancer Data Strategy to address the gaps and issues with the collection and use of cancer data, so we can better evaluate and improve cancer outcomes; and
  • developing specific initiatives to better engage primary care as a valid part of the cancer control team. 

  We continue to work hard to find ways to improve care and services, support cancer care professionals, boost Australia’s capacity to undertake research and make sure the results of our work reach our stakeholders, where the impact will be most felt. The opportunity for Cancer Australia to provide improved leadership through coordination of care is a once-in-a-generation opportunity. The investment we make in cancer control over the next few years will be felt in the decades ahead. Ultimately, Cancer Australia is here to reduce the impact of cancer for every Australian affected by cancer now and in the years ahead.  

  Key opportunities in the coming year include:
  

  • progressing the National Centre for Gynaecological Cancers;
  • building resources to link people with cancer to clinical trials that are available to them;
  • working even more productively with stakeholders; and
  • using the findings of our research and cancer control audits to inform Cancer Australia’s strategic direction and identify priorities for improving cancer control in Australia.

  We look forward to working with the people of Australia, dedicated cancer and health professionals, other cancer organisations and state and territory governments to realise the improvements in cancer control that can be achieved in the next decade.

• Consultations

  Adolescent and Young Adult Cancers National Service Delivery Framework

  Cancer Australia is collaborating with CanTeen to develop a National Service Delivery Framework for young Australians affected by cancer.

  The draft Adolescent and Young Adults Cancers National Service Delivery Framework concentrates on the specific service delivery needs of adolescents and young adults affected by cancer, to improve outcomes for this group throughout their cancer journey and as they move on with their life. 

  Cancer Australia’s National Reference Group for Adolescents and Young Adults with Cancer met for the first time in May 2007. The inaugural meeting identified that adolescents and young adults with cancer have specific needs not currently met by paediatric and adult cancer centres, which can result in poorer outcomes for this age group. Of particular concern are psychosocial, developmental, fertility education, and vocational reintegration needs that are not always being met. 

  In response to this identified need, CanTeen and Cancer Australia have collaboratively developed a National Service Delivery Framework for young Australians affected by cancer.

  This document has been developed following extensive consultation with consumers, the Adolescent and Young Adult Cancers National Reference Group, service providers across Australia, and a review of state and territory cancer plans.  It has been informed by similar Adolescent and Young Adult National Service Delivery Frameworks in the United Kingdom and New Zealand.

  The draft Adolescent and Young Adults Cancers National Service Delivery Framework concentrates on the specific service delivery needs of adolescents and young adults affected by cancer, to improve outcomes for this group throughout their cancer journey.   

  Key elements of the proposed model are:

  • Care provided by health professionals with adolescent and young adult knowledge and skills.
  • Care based on best practice and the best available evidence.
  • Care coordinated across settings.
  • Adolescents and young adults empowered in decision-making.
  • Multidisciplinary treatment and supportive teams with skills in Adolescents and Young Adults and tumour-specific cancers.
  • Comprehensive assessment by multidisciplinary treatment and supportive teams.

  The proposed model recommends a comprehensive assessment for all adolescents and young adults with cancer, undertaken centrally, with subsequent care provided locally wherever possible. It proposes that all adolescents and young adults with cancer have a treatment and supportive care plan in place that includes formal linkages to an adolescent and young adult cancer service team.  

  The proposed model was discussed in detail at the National Reference Group for Adolescents and Young Adults with Cancer, held in Sydney on 27 February 2008.  
  

• National Meetings

  Updates on national group meetings

  Several of Cancer Australia’s national groups have met recently or have meetings this month. 

  Advisory Council 
  
  The 5th meeting of Cancer Australia’s Advisory Council was held in Hobart early in March.  The meeting discussed a range of Cancer Australia’s programs, and in particular provided input to the report on the National Audit of Cancer Research Projects,and the Adolescent and Young Adults National Delivery Framework.  The Council considered a range of documents to which they provided advice and comment. The Advisory Council will next meet in August 2008. 

  National Cancer Data Strategy Advisory Group
  Cancer Australia’s National Cancer Data Strategy Advisory Group met in Sydney on 12 March. Membership reflects the diversity of professionals working across the spectrum of cancer data collection, analysis and coordination, as well as end users and beneficiaries of cancer data.  It includes consumers, researchers, a range of health professionals and policy makers. Its role is to advise Cancer Australia on the development of a National Cancer Data Strategy.  It is chaired by Professor David Currow of Cancer Australia. The focus of the March meeting was exploration in detail of specific elements of the National Cancer Data Strategy – tumour staging, patterns of care, data linkage and biospecimen tissue banking.  

  National Research Advisory Group
  The National Research Advisory Group met on 13 March in Melbourne. At this meeting the report on the national Audit of Cancer Research projects was discussed. 

  National Consumer Advisory Group
  The National Research Advisory Group met on 19 March in Sydney. The group discussed issues including facilitating consumer input into cancer research.  

  Strategic Forum
  Cancer Australia’s intergovernmental Strategic Forum will meet in Melbourne on 31 March.  Membership includes senior government officials from the Department, each state and territory government, expert clinicians, consumer representatives and representatives from other key national organisations.  The Forum provides advice to Cancer Australia on a range of cancer related issues.  It is chaired by Janet McDonald from Cancer Australia’s Advisory Council. The focus of the March meeting will be on progressing national cancer data management issues. 

  Adolescent and Young Adult Cancers National Reference Group 
  This group met in Sydney on 27 February and discussed the draft Adolescent and Young Adult Cancers National Service Delivery Framework (see "Consultations" article). The group also provided advice and input on issues including consumer involvement in research, information for consumers on cancer clinical trials, and the work program of Cancer Australia’s consumer interests and community partnership team.

• National Centre for Gynaecological Cancers Update

  The National Centre for Gynaecological cancers continues to work towards improving outcomes for people affected by gynaecological cancers.  With the expert advice and guidance of the National Working Group for Gynaecological Cancers, the Centre has begun a number of projects to increase support for gynaecological cancer consumers, strengthen the gynaecological cancers workforce, and build the evidence base for the control of gynaecological cancers.  

  

  Current projects include:

  • development of minimum clinical datasets for cervical, endometrial and ovarian cancers;
  • development of an accredited online learning activity for general practitioners;
  • development of National Centre for Gynaecological Cancers web pages within the Cancer Australia website;
  • a review and quality assessment of existing resources for consumers and health professionals;
  • a consultation process to identify priority areas for the development of clinical practice guidelines;
  • research into patterns of care for gynaecological cancers;
  • a review of the gynaecological cancers workforce, including analysis of existing workforce data, identification of gaps in existing data.

  The Centre has also contributed to two gynaecological cancers grants as part of the Building Cancer Support Networks grants program. 

  To keep up to date on the work of the Centre, visit http://www.gynaecancercentre.gov.au/ and bookmark this page.

• Research grants close

  Applications for the 2008 round of the Priority-driven Collaborative Cancer Research Scheme closed on March 14 2008.The Priority-driven Collaborative Cancer Research Scheme (PdCCRS) aims to support research that reduces the impact of cancer in the community and improves outcomes for people affected by cancer by focusing on research that can be applied in cancer control. Grants funded by the PdCCRS differ from those provided by other funders of cancer research in that the applications must be: 
  

  • Outcome/impact focused (projects will improve outcomes in cancer control and/or impact on populations with poorer outcomes within the community).
  • Collaborative (projects are cross-disciplinary, national or multi-state and/or key researchers are part of the grant application).
  • Engage consumers (consumers are involved in the design and ongoing conduct of the research project).
  • Incorporate record of impact (applications should describe how in the past, key researchers on the application had research.

  In 2008, this program is a collaborative initiative of Cancer Australia with the following funding partners: beyondblue: the national depression initiative, The Cancer Council Australia, the Cure Cancer Australia Foundation, and the National Breast Cancer Foundation.

  The call for applications for the 2008 round of the PdCCRS opened in December 2007 and closed on March 14 2008.

  The National Health and Medical Research Council (NHMRC) is facilitating the registration and assessment of these grant applications, and will co-badge and endorse grants funded through the PdCCRS.

  It is anticipated that recipients of Priority-driven Collaborative Cancer Research Scheme

• Have your say - Data strategy

  

  Accurate data are vital for sound planning of service delivery, and to better understand cancer outcomes. 

  Cancer Australia is developing a National Cancer Data Strategy to improve consistency in the collection and use of cancer data and we want to hear your views. 

  In Australia, there are currently only two census points where cancer data collection is mandatory: at diagnosis (incidence) and at death (mortality).  With advances in prevention, screening and treatment, many people affected by cancer are now living longer, either free of disease or with recurrent disease, yet few data exist to monitor quality of life after treatment, intermediate and long-term toxicities and the effects of new treatments and technologies. 

  Cancer Australia is collaborating with governments, service providers, consumers and cancer data organisations to develop a National Cancer Data Strategy to address the gaps and issues with the collection and use of cancer data, so we can better evaluate and improve cancer outcomes.  This work is being led by Professor David Roder, an eminent cancer epidemiologist, and is overseen by the National Cancer Data Strategy Advisory Group, which continues to provide strategic direction and technical advice on all of Cancer Australia’s cancer data improvement initiatives.   

  The Towards a National Cancer Data Strategy: Foundation Document has been available for review and feedback since November, and the comment period closed at the end of March. Feedback will be used to further refine the Foundation document, which will become a companion to the National Cancer Data Strategy. The National Cancer Data Strategy will provide a direction for collaborative effort to improve cancer data development for the Australian community. 

  It’s expected the National Cancer Data Strategy will be published later this year.
  

• Improving cancer data

  Cancer Australia is taking the initiative to progress a number of the cancer data priorities that have been identified by stakeholders to date.   

  Professor David Roder is continuing to map nationally available cancer-related data items.  An important pre-requisite for productive use of data is knowledge of what exists and where. This also helps planning for additional data collection. 

  Cancer Australia has taken on the stewardship of the existing generic Minimum Data Sets (MDS) for clinical cancer registration developed by the National Cancer Control Initiative.  In the next few months we will be developing a process to engage stakeholders in reviewing the MDS.  It is anticipated this process will be finalised by the end of this year.  

  Work on the development of a National Framework for the development of Specialist Minimum Dataset for specific cancers is also progressing well.  This framework will be a valuable resource to support consistent data collection for improving cancer treatments, and ensure any specialist minimum datasets are consistent with the generic minimum dataset for clinical cancer registration. 

  We are also looking at data quality and access related to bio-specimen tissue banks. There are numerous bio-specimen tissue banks across Australia, which collect and store tissue specimens for both clinical and research purposes.  Bio-specimen tissue banks provide an invaluable resource for cancer research, which will only increase in significance.  A teleconference was held at the end of February with key stakeholders from bio-specimen and tissue banking institutions around Australia to discuss data quality and consistency in tissue banking.  This resulted in the commitment of all parties to collaboratively identify strategic areas where joint effort would be of benefit.  Working groups are currently being established to provide more direction for this work. 
  

• Primary care in cancer control

  One of the important actions that will help close the gap in cancer outcomes for some sections of the Australian community is better engaging general practitice (GPs and practice nurses) in cancer care. 

  Cancer Australia has begun work on a range of projects that will expand the role of GPs and practice nurses in the delivery of cancer care. 

  The incidence of some cancers (including lung, melanoma, cervical, and unknown primary) is higher for Australians living outside major cities and the mortality rates for many cancers are also higher¹. Rural residents with lung and colorectal cancers fare worse than those from the city. More advanced disease at diagnosis and limitations in access to treatment in some rural and regional areas are contributing factors to lower survival rates. Outcomes after cancer are also worse for people of Aboriginal and Torres Strait Islander origin, those who are culturally and linguistically diverse, and people who are socio-economically disadvantaged. 

  One way to reduce the disparity in outcomes and to improve cancer control is to better engage and support general practitioners (GPs) and practice nurses in the delivery of cancer care jointly with oncology units. GPs are often the first point of contact for people with early symptoms of cancer and they have a significant role to play in prevention, screening, follow-up after treatment and palliative care. Their role in managing toxicities of treatment and providing support during treatment is being supported on a number of levels (as outlined below).  

  The National Service Improvement Framework for Cancer  has identified the following national priority action for change that specifically relates to primary care: 

  Establish national approaches to assist primary health care providers, especially general practitioners, to offer high quality and appropriate assessment of risk, detection of cancer, referral to treatment, coordination of treatment and supportive care (from diagnosis to palliative care).(p8) 

  The following provides an overview of the new projects that are being funded by Cancer Australia to help implement this national priority action for change:  
  

  • Web-based cancer treatment protocols appropriate for GPs. The Cancer Institute NSW has developed standard chemotherapy protocols (CI-SCaT) to support the delivery of evidence-based cancer care. Cancer Australia is funding the Cancer Institute NSW to develop and trial primary care protocols for the management of mid-cycle adjuvant chemotherapy for breast and colorectal cancers.
  • Cancer Service Networks National Demonstration Program (CanNET). This program is supporting linkages between rural and metropolitan cancer services to form ‘virtual’ organisations connected at local, regional and national levels. Multidisciplinary care, consumer engagement and stronger links with general practice teams are key elements of this program. The development of an electronic Directory of Services with a focus on cancer type and nearest multidisciplinary team will help GPs identify appropriate care pathways for their patients.
  • Continuing Professional Development for Cancer Professionals (CPD). A consortium led by Sydney University’s Centre for Innovation in Professional Health Education and Research, is developing continuing professional education packages for primary care in the following areas: multidisciplinary care; continuity of care; appropriate referral; fundamentals of oncology; psychosocial support; and evidence-based care. The packages will be piloted in March and April 2008 within the CanNET projects.  Once this has been completed the learning packages will be available from CancerLearning, through the Cancer Australia website.
  • National Cancer Nursing Education Project (EdCaN). EdCaN is being developed by the Peter MacCallum Cancer Centre in association with other cancer care institutions, universities and professional colleges and associations. One element of this project supports the education and training of general practice nurses in chemotherapy delivery and the primary care management of toxicities of chemotherapy and radiotherapy.
  • Development of diploma of clinical oncology for registered medical practitioners.  The diploma is being developed by the Medical Oncology Group of Australia in consultation with the relevant medical colleges.  It is based on a multidisciplinary model of care. It is anticipated that the knowledge, skills and expertise gained through the completion of the diploma will support and enhance the primary care role across the cancer control continuum, including the active management of chemotherapy and related toxicities and management of toxicities of radiotherapy treatment.
  • Gynaecological cancer case studies. Gynaecological cancers can be difficult to diagnose because many symptoms are non-specific. Symptoms often do not occur until the cancer is advanced. The National Centre for Gynaecological Cancers is developing gynaecological cancer case studies to be used as training tools for GPs.  Case studies follow hypothetical patients from initial presentation at their GP through referral, treatment and supportive care, including regular review by the GP. The case studies are intended to provide advice to GPs about decision points and potential actions at those points.  

  To find out more about how Cancer Australia is supporting Professional Development for Cancer Professionals visit the Professional Development section of our website. 

  
  ^{[1] Cancer in Australia: an overview, 2006, Australian Institute of Health and Welfare/Australasian Association of Cancer Registries, Canberra June 2007, pp x-xi.}
  

• CanNET update

  The Cancer Service Networks National Demonstration Program (CanNET) is gathering momentum in every state and the Northern Territory.   

  A national strategy to support collaboration amongst the CanNETs has been developed jointly by all the CanNETs to support transfer of knowledge between CanNET projects, and promote information sharing and discussion of learnings and challenges. 

  This directory of services will be web-based, accessible by people newly diagnosed with cancer and their general practitioners, and facilitate referral to the most appropriate initial cancer assessment and treatment team.   

  A review of the available evidence reveals that there is a range of existing directories, many of which are tumour-specific and web-based. Despite the existence of these directories the biggest gap for consumers at a national level is identifying an appropriate initial cancer assessment team, which can be challenging for both consumers and general practitioners.   

  Being referred to the most appropriate initial cancer assessment and treatment team at the time of diagnosis or relapse is critical to receiving the best evidence-based care to ensure best outcomes.  To find out more, visit the CanNET website. 
  

• Cancer Learning resources

  Have you developed resources in Cancer Education and Professional Development?

  Would you like to share your resources with cancer care providers across Australia?  

  The Cancer Learning online hub is an initiative of Cancer Australia, which aims to bring together in one place the enormous variety of evidence-based learning activities, resources and information in cancer care available across Australia. 

  You are invited to submit your resources for inclusion on the hub, for example:

  • online course or learning module
  • information about a face-to-face workshop
  • printed learning materials
  • checklist or other practical tool
  • learning resource eg CDRom, DVD
  • information eg about an initiative that worked
  • web site

   All resources submitted to Cancer Learning will be reviewed against established criteria prior to inclusion.  

  For further information, or to submit a resource, please contact Gemma Connolly on 02 9351 3888 or email gemmac@med.usyd.edu.au 

  It is anticipated that Cancer Learning will be available by June 2008. 
  

• Survival and Prevalence report

  An important collaboration between Cancer Australia, the Australian Institute of Health and Welfare, and the Australasian Association of Cancer Registries will result in the first national report on cancer prevalence in Australia. 

  The Cancer Survival and Prevalence in Australia report is the collaboration between Cancer Australia, the Australian Institute of Health and Welfare and Australasian Association of Cancer Registries, to support Cancer Australia’s National Cancer Data Strategy. 

  The report is the first national report on prevalence and the findings will highlight both the burden of cancer and the challenge faced in reducing that burden. It will identify survival trends by region, socioeconomic status, length of time and prevalence.   

  Publication is due later this year.   

• National Sun Survey results

  National sun survey shows big fall in teens seeking a tan

  

  A national survey of sun protection behaviour has identified a change in the attitude of teenagers to tanning.  

  The National Sun Protection Survey was funded by The Cancer Council Australia and Cancer Australia. 

  The results of the survey show that the number of teens deliberately tanning is down 45 per cent over the past three years.  

  However, almost a quarter of teens are still getting sunburnt over a typical summer weekend. The report notes that this is due to forgetting to protect themselves. 

  In contrast, there has been a 31 per cent fall in adults reporting they were sunburnt since the last national survey in 2004. 

  The National Sun Protection Survey of 5085 adults and 652 teenagers around Australia also found:                        
  - Girls were more likely to deliberately tan (29%) compared to boys (15%), however boys were more likely to get sunburnt (28%) than girls (19%), as more boys spent time outside in peak UV times and were less likely to use                         sunscreen.                        
  - 14% of Australian adults aged 18-69 (1.8 million) and 24% of adolescents aged 12-17 (397,000) were sunburnt on an average summer weekend in 2006/7.  

  The National Sun Protection Survey examined people’s sun-related knowledge, attitudes and behaviours and sunburn through weekly telephone interviews conducted on Monday and Tuesday evenings over the summer of 2006-07. There were 5085 adults (18-69 years) and 652 adolescents (12-17 years) in Australia interviewed. This is the second time the survey has been conducted (the first was in the summer of 2003-04) enabling comparisons over time.

• IN FOCUS - Research and Clinical Trials

  

  Australia is a world leader in cancer research.  Support for further research is essential to ensure we continue to be at the forefront of discovery about cancer, its causes and its treatment in order to lessen the impact of cancer on the community.  

  An overarching principle for the work of Cancer Australia’s Research and Clinical Trials team is the promotion of collaboration – across research and clinical disciplines, states, institutions and organisations – with consumer involvement a vital component.  

  The Research and Clinical Trials team administers the Priority-driven Collaborative Cancer Research Scheme, which provides cancer research grants in identified priority areas.  

  In developing this scheme, Cancer Australia established an alliance of cancer research funding partners, providing a more coordinated approach to funding priority-driven cancer research at the national level. It also provides partners with an opportunity to identify research priorities and co-fund research grants in common priority areas. The funding partners who joined Cancer Australia in the first round of the Scheme are the National Breast Cancer Foundation, and the Prostate Cancer Foundation of Australia. Funding partners for the 2008 Round are the National Breast Cancer Foundation, beyondblue: the national depression initiative, The Cancer Council Australia, and Cure Cancer Australia Foundation. The National Health and Medical Research Council is involved in the administration and initial assessment of grant applications and all grants funded through this program are co-badged and endorsed by the National Health and Medical Research Council.  

  The Research and Clinical Trials team also administers the Support for Cancer Clinical Trials Program, which aims to build Australia’s capacity to conduct cancer clinical trials.  This program currently supports the ten established National Cooperative Cancer Clinical Trials Groups and is supporting the establishment of new national Cooperative Cancer Clinical Trials Groups.  

  The Research and Clinical Trials team is also overseeing a National Audit of Cancer Research Projects. The audit will provide the first national picture of funding of cancer research projects. The audit will inform, in part, the development of a National Cancer Research Plan. The Research plan will be submitted to the Minister for Health and Ageing and will identify cancer research priorities. The research plan will be updated every three years. 

  Cleola Anderiesz is Cancer Australia’s National Manager, Research and Clinical Trials.  

  Cleola has a strong background in cancer control, having worked for six years with the National Cancer Control Initiative and The Cancer Council Victoria before joining Cancer Australia. A research scientist by original training, Cleola has a PhD in medicine and experience in research, policy and program development and management. Cleola brings a diversity of experience and knowledge to her role with Cancer Australia. 

  Cleola heads our Research and Clinical Trials team, whose two principal programs aim to increase coordination and funding of cancer research, and actively support cancer clinical trials.