Chapter 2 - A stronger voice for gynaecological cancers in Australia

Introduction

2.1 The Commonwealth Government's decision to establish Cancer Australia as part of its Strengthening Cancer Care initiative is a positive and essential step in improving cancer care and lessening the impact of cancer on all Australians. However, the Committee believes that Cancer Australia's formation is simply the first step of many in the ongoing process of improving the approach to cancer prevention and care across the board. In this evolving process more needs to be done immediately for gynaecological cancers.

2.2 During the inquiry, the Committee heard wide-ranging concerns that the combined 'voice' of women and other stakeholders was often overshadowed by other cancers, or worse, not heard at all. Ms Natalie Jenkins, Chairperson of the Gynaecological Awareness Information Network (GAIN), said that something similar to the 'powerful voice' of the National Breast Cancer Centre (NBCC) was needed for gynaecological cancers.

A powerful voice is required to implement national campaigns and programs similar to that of the successful breast cancer movement, which has achieved a great deal for the Australian community.[1]

2.3 There is an urgent need to rectify this situation and to ensure that more attention is directed to this important area of women's health.

2.4 It is evident that the gynaecological cancer sector is in need of greater coordination and cohesion which is not met by the existing cancer structures and processes. The current 'state of play' – rising incidence of gynaecological cancers, the lack of equality in service provision and the low levels of funding and awareness – indicates it is of utmost importance to recognise the value of bringing people together with experience and expertise to ensure a better future for women with gynaecological cancers.

2.5 Many witnesses argued that a national approach to gynaecological cancers would provide the answer and that the establishment of a dedicated body would make a significant difference to the lives of women with, or at risk of, gynaecological cancers. This suggestion was supported by many who participated in the inquiry, including cancer survivors, gynaecological oncologists, medical and allied health professionals, professional bodies and consumer advocacy groups.

A national approach

2.6 The adoption of a national approach to gynaecological cancer issues was thought to be a positive and necessary step towards strengthening the gynaecological cancer 'voice'. Ms Margaret Heffernan, a gynaecological cancer advocate, stated:

...a unified national approach will create synergy and overcome the imbalance created by the current diversified and inconsistent approach to research, education and resources. These independent and uncoordinated efforts are unwittingly creating barriers to effective collaboration; research of screening tests, especially in ovarian cancer; appropriate consumer resources and education; clinical education and resources; and treatment services, especially in the management of psychosocial and psychosexual needs.[2]

2.7 It was agreed by many involved in the inquiry that a national approach to gynaecological cancers should be implemented to ensure the timely development and oversight of national strategies aimed at lessening the impact of these cancers on women's lives. Although Cancer Australia is operational, many individuals and groups including the Australian Society of Gynaecologic Oncologists (ASGO), expressed support for the formation of an additional body specifically responsible for coordinating and improving gynaecological cancer services, education, advocacy and research in Australia.[3]

2.8 The Committee acknowledged that different views were expressed about how a national approach would be implemented and funded.

2.9 The majority of witnesses and submitters supported one of the following two approaches as possible ways of boosting the gynaecological cancer 'voice':

the establishment of a self-determining national gynaecological cancer body; or
the expansion of the NBCC's remit to include gynaecological cancers.

2.10 Regardless of the differences in approach, the common theme arising from the evidence highlighted the need for effort to be made to improve coordination and to reduce the duplication of effort and resources.

The need for national coordination

2.11 It was clear from the evidence that a number of obstacles to effective and efficient gynaecological cancer care existed. These included:

the lack of formal representation of gynaecological cancer expertise and experience at the national level;[4]
the lack of a separate representative organisation to provide meaningful services for, and representation of, consumers' and professionals' interests;[5]
the lack of strategic direction, leadership and dedicated resources;[6] and
the lack of priority given to funding for gynaecological cancers.

2.12 A number of points were raised throughout the inquiry that indicated the need for improved coordination. Witnesses and submitters argued there was:

duplication of resources, priorities and programs particularly in the non-government sector in relation to research and education.[7]
no central reference point for organisations meaning that they often worked in isolation from one another and often competed for limited resources;[8] and
ad hoc communication between organisations and professionals that often only occurred on a needs basis.[9]

2.13 What was clear from the evidence presented was not how much was being done in relation to improving quality, but how fragmented the current approach was. Apart from isolated examples of limited coordination (for example, through the Australian Society of Gynaecologic Oncologists (ASGO), the Australia New Zealand Gynaecological Oncology Group (ANZGOG) and the NBCC's Ovarian Cancer Program) there was no national, comprehensive approach to gynaecological cancers.

2.14 It was thought that bringing individuals and organisations together at a national level could lead to greater efficiencies and the better use of funds. It was argued that achieving greater transparency and better coordination become a higher priority.

2.15 Professor Jonathan Carter of Sydney Gynaecological Oncology Group at the Royal Prince Alfred Hospital summed up the views of many of the gynaecological oncologists about the need for a national approach to improve coordination.

We are all trying to do a good job to a greater or lesser extent but we are doing it in a disjointed fashion. I think what we are lacking in gynaecologic oncology in this country is a national task force or a national gynaecological cancer centre.[10]

2.16 The development of a national organisation was suggested as a way of minimising the separate agendas and duplication found in the gynaecological cancer sector (particularly in relation to profile raising and education programs). Many proposed the establishment of a national centre to determine effective mechanisms for the coordination of research, service delivery, community efforts and other issues.[11]

A self-determining national body for gynaecological cancers

2.17 There was considerable support for the establishment of a self-determining body, frequently referred to in evidence as a National Gynaecological Cancer Centre (or NGCC).[12] The Gynaecological Cancer Society argued:

The establishment of the NGCC can only benefit all gynaecological cancer stakeholders.[13]

Benefits of a NGCC

2.18 Witnesses argued that a well-funded and supported NGCC could bring the following benefits:

a higher profile for gynaecological cancers at the political level;
better coordination;[14]
the infrastructure to increase capacity for reducing the burden of gynaecological cancers at a local, national and international level;[15]
creation of a national strategy to coordinate smaller, local initiatives and to ensure targeted initiatives continue in the areas of research, service delivery, resource development and women's needs;[16]
a national repository for more accurate data to assist in the development and distribution of educational information and treatment protocols to women, the public, general practitioners and allied health workers;[17]
greater recognition and support for research into gynaecological cancers and standardising treatment and research protocols in line with national and international guidelines;[18]
mechanisms for the involvement of all stakeholders, including broadening the involvement in policy making and planning to include women so that gynaecological cancer programs are more appropriately tailored to the needs of Australian women;[19]
better communication between key stakeholders through a partnerships approach, some of whom are geographically dispersed;[20]
improving access to, and creation of, new prevention strategies and multidisciplinary management of individuals at risk or patients with a gynaecological cancer;[21] and
creation of a highly visible and accessible resource centre for professionals and for the general public.[22]

2.19 Professor Neville Hacker, Director of the Gynaecological Cancer Centre at the Royal Hospital for Women, argued that a NGCC would be a 'linchpin' for research, education and advocacy for gynaecological cancer in Australia.[23]

2.20 In addition, Professor J Norelle Lickiss, a palliative medicine specialist, said that the 'symbolic value' of creating a NGCC was important and that its establishment would stimulate greater interest in the situation of women with gynaecological cancers.[24]

2.21 The Gynaecological Cancer Society argued that all the necessary elements for an effective and efficient NGCC already existed within State-based organisations. Incorporating the best elements of each under the umbrella of the NGCC would quickly, cheaply and efficiently address the problem areas represented by communication, duplication and statistical gathering and analysis.[25]

Support from the Australian Society of Gynaecologic Oncologists

2.22 The Australian Society of Gynaecologic Oncologists (ASGO) is currently the closest organisation to a national body representing gynaecological oncologists and gynaecological cancer issues. Its work is done in an honorary capacity and ASGO said that it lacked the infrastructure to effectively perform the role needed of it.[26] ASGO, and many of the gynaecological oncologists it represents, indicated their strong enthusiasm to work with a national centre should it be established.[27]

2.23 Associate Professor Tom Jobling, Head of the Gynaecological Oncology Unit at the Monash Medical Centre, was one of many gynaecological oncologists that showed support.

We are very excited about this whole concept of a national gynaecological cancer centre, because we are a very collegiate group.[28]

2.24 ASGO highlighted that when gynaecological oncology separated itself and became a distinct group from gynaecology within its own college, the change was not without 'certain stresses and territorial conflicts', but that this should not hinder the formation of a national gynaecological cancer centre.[29]

Support from community organisations

2.25 There was also a lot of support for a NGCC from the community and non-government sector. Many envisaged a NGCC would bring a much broader approach to gynaecological cancer than that which currently exists in Australia.

2.26 There was broad agreement that a NGCC would work collaboratively with, and through existing organisations.[30] Given there is a significant amount of expertise and experience within community organisations, it was thought that a NGCC would largely provide strategic direction and coordination rather than usurp the service-provision and support roles that these groups already have.

2.27 Mr Simon Lee, Chair and Founding Director of the National Ovarian Cancer Network, supported a national organisation, but stated that there was still a strong role for community organisations to keep in close contact with patients, families and other community representatives to ensure a 'bottom-up' approach. Mr Lee said this was important to:

...adequately collect that information and to relay information back to them and to make sure that their interests a being represented appropriately for the national organisation's sake.[31]

Relationship with Cancer Australia

2.28 Of those that supported a NGCC, some thought that it may be appropriate for it to be placed as an independent group under the auspices of the recently formed Cancer Australia.[32] Professor Michael Quinn, Director of Oncology/Dysplasia at The Royal Women's Hospital supported this idea.

The thing about an NGCC is that it has to be seen as an independent body and that ownership has to be by women, by the community and also by the professional community. It has to be auspiced by a neutral body that everyone has respect for; hopefully, Cancer Australia might become that body.[33]

Proposal for a National Women's Cancer Centre

2.29 Of those that supported the formation of a NGCC, many thought for governance purposes that it should sit under a National Women's Cancer Centre.

2.30 Ms Heffernan proposed that a National Women's Cancer Centre should encompass the existing NBCC as well as a NGCC, all of which would sit under the auspices of Cancer Australia.[34]

2.31 The NBCC also proposed two possible options for broadening the scope of its work program (for further discussion see later in this chapter):

a single body such as a National Women's Cancer Centre; or
an overarching banner such as Women's Cancer Australia which would incorporate individual streams such as breast cancer (through the NBCC) and gynaecological cancers (through a possible NGCC).[35]

A NGCC to be modelled on the NBCC

2.32 A number of witnesses, including Dr Yee Leung, a gynaecological oncologist from the Western Australian Gynaecological Cancer Service, proposed that a NGCC could be modelled on the NBCC in order to successfully address the current gaps and overlaps in the gynaecological cancer sector.[36]

2.33 Dr Helen Zorbas, Director of the NBCC, thought that much could be learnt from the outputs and success of the NBCC. Ms Heffernan agreed:

The gains that they have made in the treatment, care, resourcing and lobbying are largely due to the initiatives and vigilance of successive individuals and the model.[37]

2.34 The NBCC said that its work is guided by the following principles:

National – reinforce the NBCC's national focus as an independent and authoritative body;
Partnerships – foster an integrated, collaborative approach through consultation and partnerships with clinical and consumer groups, cancer organisations and governments;
Evidence-based – all aspects of the NBCC's work are informed by, and based on, the best available evidence;
Informed by consumers – the NBCC's work is informed by consumers;
Multidisciplinary – uses a multidisciplinary approach, bringing together individuals with different expertise to achieve a common goal; and
Innovative and outcomes oriented – new approaches to improving outcomes and care for women with breast and ovarian cancer are trialled, evaluated and fostered.[38]

2.35 The NBCC said its model had been highly successful in relation to improving breast cancer and ovarian cancer control and care. Professor Hacker agreed that the NBCC's approach and guiding principles could be replicated for other types of cancer, including gynaecological cancers.

They have put a lot of mechanisms in place for advocacy and education in breast cancer, and I would like to see the same mechanisms and functions put in place for gynaecological cancer, because they have ovarian cancer under their control. Although it is not acknowledged in the name, it is presently under their jurisdiction. But of course there are other gynaecological cancers apart from ovarian cancers—cervical cancer, uterine cancer, vaginal cancer et cetera—that are also important cancers.[39]

2.36 The proposal to expand the NBCC's remit to include gynaecological cancers is discussed later in this chapter.

Location of a NGCC

2.37 Many witnesses suggested potential locations for a NGCC and evidence given during the inquiry suggested that this may be a difficult decision.

2.38 Associate Professor Jobling suggested that it would be efficient to utilise existing infrastructure and he recommended Royal Australian and New Zealand College of Obstetricians and Gynaecologists' (RANZCOG) facilities in Melbourne as a viable option.[40] The Royal Women's Hospital in Melbourne also suggested that their hospital would provide a suitable alternate location because it is a medical model and it has industry partners, the infrastructure, the expertise, the scientists and the laboratories.[41]

2.39 In considering location, Ms Heffernan argued that the following factors should be taken into account:

the location of gynaecological oncologists;
population centres;
the location of established organisations whose infrastructure could be utilised; and
the use of technology and the Internet to overcome geographical distance.[42]

Cost of NGCC

2.40 It was difficult to estimate the cost of establishing a NGCC with many unknown factors such as size, role and responsibility, location and remit. Associate Professor Jobling discussed the cost of an NGCC:

I am not putting us up as paragons of virtue, but we do all this pro bono. You talk about the infrastructure, and people get a bit frightened of potentially setting up these little things that are all going to gobble up administrative money, but I do not think that needs to be a big issue. ASGO runs as a completely pro bono organisation; it is just a body which gets together. There would be no question that you may need a couple of administrators in such a centre, but most of the work and the organisation of the committee work is going to be done by people like us, who are going to sit together and do this, whether we do it in the national meeting or whatever. There is always going to be a fair bit of goodwill in terms of running these things and deciding where the money should go.[43]

Improve existing arrangements

2.41 Some witnesses, including The Cancer Council of Western Australia, argued that the development of a NGCC 'could represent an inefficient use of resources, likely resulting in duplication of infrastructure'.[44] Dr Ian Roos, Chair of Cancer Voices Victoria, agreed and expressed concern about the potential for mixed messages stemming from the existence of multiple organisations representing different cancer types at the government level.[45]

2.42 Others questioned whether money and effort would be better used to improve coordination and collaboration within the current system. Mr John Gower, Chief Executive of the Gynaecological Cancer Society argued:

...we favour, if you like, a committee that draws together various elements in each state. Existing units in each state do very well. The problem is that there is nothing to draw them together. The ground rules are different with respect to statistical raising in each state, so it is very difficult to compare what is going on. We are not in favour of setting up a new bureaucracy; we are in favour of coordinating existing units into a cohesive force.[46]

2.43 Although Mr Gower agreed that a single organisation dedicated to gynaecological cancer issues would be beneficial too.[47]

Expansion of the NBCC's remit to include gynaecological cancers

2.44 Given the successes of the NBCC with breast and ovarian cancer, Cancer Voices Australia and the National Ovarian Cancer Network called for the inclusion of all gynaecological cancers within the NBCC's remit.[48]

2.45 The NBCC agreed and suggested that it was 'ideally placed to broaden its remit to all women's cancers, capitalising on its existing expertise, infrastructure and resources'. It argued that it had already established 'an extremely efficient infrastructure' which could be used 'to deliver programs in gynaecological cancer'.[49]

2.46 The NBCC further argued that expanding its 'work program would require additional resources but would not necessitate establishing an entirely new infrastructure'.

2.47 Many argued that the NBCC was an extremely effective model of the outcomes that the gynaecological cancer community is seeking across the board. Dr Zorbas from the NBCC commented that women with ovarian cancer often faced the same issues and had the same needs that women with breast cancer experienced a few years ago and that:

...it would be criminal not to use what we have learnt from breast cancer—it has led the way, there is no question, in all aspects of care—for the benefit of other women with their cancers. I think we would continue to make gains. We would make leaps in other areas because you are coming from a much lower base of information, support and care.[50]

The need for a separate identity for gynaecological cancers

2.48 Expanding the NBCC's remit was not widely supported by a number of gynaecological oncologists, who argued that gynaecological cancers should have a separate identity from breast cancer. A number of reasons for this view were put forward:

gynaecological cancers have very specific issues, particularly involving psychosocial and psychosexual care, and there is not natural integration of breast cancer and gynaecological cancer issues;[51]
it was inappropriate for gynaecological malignancies to be managed by an organisation whose primary charter is the management of another disease grouping, such as breast cancer;[52] and
that gynaecological cancers occurred in sufficient numbers to warrant a stand-alone national body.[53]

The way forward

2.49 It is clear from the evidence that there is a critical lack of attention given to gynaecological cancers in Australia at the present time. Two options for the way forward were presented to the Committee – the establishment of an independent NGCC and a widening of the remit of the NBCC to include all gynaecological cancers. The Committee recognises the merits and benefits of these two approaches and acknowledges there is strong support from those in the gynaecological cancer sector for both models.

2.50 A strong theme common to both proposals was the necessity to focus on gynaecological cancers to enable the unified voice to be heard. The Committee strongly believes that, at this time, the much needed impetus to find the solutions to the many problems and questions in the gynaecological cancer sector lies in the establishment of a Centre for Gynaecological Cancers within the auspices of Cancer Australia, the new national body with responsibility for all cancers.

2.51 The Committee considers that a Centre for Gynaecological Cancers, with initial seed-funding, will make considerable steps to build capacity in the gynaecological cancer sector and will provide a mechanism to bring interested and enthusiastic individuals and organisations together to address issues of concern. The Centre will ensure that a stronger voice is given to gynaecological cancer issues at the national level and that the duplication inherent in the current fragmented approach to service delivery is minimised.[54]

2.52 It is envisaged that the establishment of a Centre for Gynaecological Cancers will have:

a 'top-down' approach to setting priorities and the allocation of funding;
a 'bottom-up' approach of encouraging the 'voice' of consumers and professionals to be heard in policy and planning decisions;
a 'relationships' approach to ensure collaboration and communication within the gynaecological cancer sector (particularly between professional and community-based groups) and between the Centre, Cancer Australia, its advisory groups and the NBCC; and
a 'technological' approach to ensure that it takes advantage of sophisticated communications and information technology that has been developed and which, for example, has been successfully utilised by the National Institutes of Health in the United States.

2.53 The Committee believes that for Australia to be at the cutting edge of gynaecological cancer treatment and control, a Centre for Gynaecological Cancers working in conjunction with Cancer Australia and its advisory groups will enable effective and successful partnerships to be formed to address the needs of this critical area of women's health.

Recommendation 1

2.54 The Committee recommends that the Commonwealth Government establish a Centre for Gynaecological Cancers within the auspices of Cancer Australia. The Centre will have responsibility for giving national focus to gynaecological cancer issues and improving coordination of existing health, medical and support services and community projects.

Recommendation 2

2.55 The Committee recommends, as a matter of priority, that the Centre for Gynaecological Cancers develops a website that is a 'one-stop shop' for reliable information on all issues relating to gynaecological cancers, including education, research and availability of services. The website of the National Institutes of Health in the United States is an example of a successful website upon which to base an Australian equivalent.

2.56 In all aspects of its work, the Centre should make optimal use of communications and information technology, including the Internet, to bring people together to discuss issues.

Recommendation 3

2.57 The Committee recommends that a working group be formed, with the support of Cancer Australia, consisting of individuals with experience and expertise in gynaecological cancers to best develop the roles, responsibilities and priorities of the Centre for Gynaecological Cancers.

Recommendation 4

2.58 The Committee recommends that the Commonwealth Government provide the Centre for Gynaecological Cancers with seed-funding of $1 million for establishment and operational costs.

Recommendation 5

2.59 The Committee recommends that a national secretariat be formed within Cancer Australia to define the Centre for Gynaecological Cancers' ongoing objectives and to evaluate the success of the Centre after two years.

2.60 The Committee further recommends that the Centre and its national secretariat work closely with Cancer Australia and its advisory groups, particularly the Gynaecological Cancer Advisory Group, and the National Breast Cancer Centre to ensure a cohesive approach to improving gynaecological cancer care in Australia.

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