Providing Leadership in Developing National Cancer Control Policy in Australia

FormalPara Key Points

• A governance group of Aboriginal and Torres Strait Islander leaders is essential for providing strategic advice, guidance, and credibility to national Aboriginal and Torres Strait Islander cancer policy.

• Cancer Australia established the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control to assist in achieving equity in overall cancer outcomes.

• The Leadership Group has provided guidance on key national policies, including the development of the Australian Cancer Plan, National Lung Cancer Screening Program, and the Optimal Care Pathway for Aboriginal and Torres Strait Islander people with cancer.

Despite Australia having some of the best cancer outcomes in the world, Aboriginal and Torres Strait Islander people have higher rates of cancer diagnosis and are approximately 40% more likely to die from cancer than non-Indigenous Australians [1]. To improve outcomes for Aboriginal and Torres Strait Islander people with cancer, leadership by and accountability to Aboriginal and Torres Strait Islander people are critical. Historically, government agencies have notoriously failed to ensure Indigenous voices are heard. However, increasing efforts are being made globally to ensure that Indigenous voices are at the center of policymaking to improve cancer outcomes.

Cancer Australia, the Australian Government’s national cancer control agency, aims to reduce the impact of all cancers and improve outcomes and experiences for all people affected by cancer. Cancer Australia was established in 2006 to provide leadership and vision, support to consumers and health professionals, and make recommendations to the government about cancer policy and priorities. In July 2011, Cancer Australia amalgamated with the National Breast and Ovarian Cancer Centre (NBOCC) to form a single national agency. NBOCC had previously developed a strong agenda focused on Aboriginal and Torres Strait Islander women impacted by breast cancer. The amalgamation resulted in Cancer Australia’s first appointment of an Aboriginal person to its Advisory Council. In 2015, Cancer Australia established its Leadership Group on Aboriginal and Torres Strait Islander Cancer Control (the Leadership Group).

The Leadership Group advises on policy initiatives relevant to achieving equity in cancer outcomes for Aboriginal and Torres Strait Islander people affected by cancer. It brings together leaders in Aboriginal and Torres Strait Islander health, research, and policy, as well as people with a lived experience of cancer. Multiple stakeholder groups including the National Aboriginal Community Controlled Health Organisation and the National Association of Aboriginal and Torres Strait Islander Health Workers and Practitioners are represented on the Leadership Group. The group champions cross-sector collaboration and leads a shared agenda to improve cancer outcomes at system, service, and community levels. Since its inception, the Leadership Group has helped to develop the national conversation about cancer, informed the sector about the increasing cancer burden experienced by Aboriginal and Torres Strait Islander peoples and communities, and guided system change.

In this chapter, we outline key policy areas the Leadership Group has contributed to. Past and current members of the Leadership Group are included at the end of this chapter.

Key Principles and Best Practices for Co-design

The Leadership Group recommended that Cancer Australia should establish a co-design approach to develop programs and policies that impact Aboriginal and Torres Strait Islander peoples. The co-design approach is collaborative and iterative, with active engagement of stakeholders, including end users, from idea synthesis to policy implementation. Stakeholders are active partners who interact with policymakers to define problems and generate and/or modify solutions through iterative testing and refinement.

The Leadership Group advised on the co-design approach used by Cancer Australia. Co-design has become an essential way of highlighting equal power in decision-making and showing respect for the knowledge and diversity of Aboriginal and Torres Strait Islander people. For example, the new Lung Cancer Screening Program is informed by co-design principles and practices identified and defined by Aboriginal and Torres Strait Islander people.

Following the Leadership Group’s advice, Cancer Australia partnered with the First Nations Cancer and Wellbeing Research Program at The University of Queensland, led by Professor Gail Garvey, to identify key principles and best practice approaches to co-design with Aboriginal and Torres Strait Islander peoples in the cancer control context in Australia [2, 3]. This work identified six key principles for co-design, which informed early scoping of a Lung Cancer Screening Program and now informs all future work at Cancer Australia:

• 1. First Nations leadership.

• 2. Culturally grounded approach.

• 3. Respect.

• 4. Benefit to community.

• 5. Inclusive partnerships.

• 6. Transparency and evaluation.

These principles provide a valuable starting point for the future development of guidelines, toolkits, reporting standards, and evaluation criteria to guide co-design with First Nations Australians. Insight from the Leadership Group informed this critical and foundational piece of work for Cancer Australia.

Aboriginal and Torres Strait Islander–Led Co-design Approach to the Development of the Australian Cancer Plan

The Australian Cancer Plan [4] (the Plan), published in November 2023, sets a national agenda to accelerate world-class cancer outcomes and improve the lives of all Australians affected by cancer. It provides a 10-year national strategic framework, including integrated actions to improve outcomes for Aboriginal and Torres Strait Islander people, which were identified and led by Aboriginal and Torres Strait Islander people. Achieving equity for Aboriginal and Torres Strait Islander people is the most significant ambition for the future of cancer care in Australia.

The Plan was developed through collaborative partnerships and engagement with Aboriginal and Torres Strait Islander people and under the guidance of the Leadership Group and Cancer Australia’s Advisor on Aboriginal and Torres Strait Islander Cancer Control. It identifies six strategic objectives that require national, coordinated leadership and concerted effort across the sector for the next decade to deliver world-class cancer outcomes and experiences for all Australians (Fig. 10.1). Each strategic objective contains a 10-year ambition and 2- and 5-year goals with associated actions.

Fig. 10.1

Six strategic objectives encompass the Plan’s vision [4]

The strategic objective Achieving Equity in Cancer Outcomes for Aboriginal and Torres Strait Islander People complements the ambitions, goals, and actions identified for the other five strategic objectives. Of the 46 actions in the Plan, all are relevant to Aboriginal and Torres Strait Islander cancer control and one-third are specific to Aboriginal and Torres Strait Islander peoples.

All actions in the Plan were developed through a co-design approach with Aboriginal and Torres Strait Islander leaders, including the Leadership Group; the National Aboriginal Community Controlled Health Organisation; leaders in Aboriginal and Torres Strait Islander health, research, and policy; jurisdictional Aboriginal and Torres Strait Islander health policy representatives; and people affected by cancer. Aboriginal and Torres Strait Islander representatives actively participated in key engagement activities; contributed to drafting and refining the ambitions, goals, and actions; and reviewed draft Plan content. In addition, a stakeholder engagement strategy was undertaken to encourage input to the Plan from Aboriginal and Torres Strait Islander people, including 35 national stakeholder engagement visits with representatives of cancer services and Aboriginal and Torres Strait Islander health organizations across all states and territories.

Development of the Aboriginal and Torres Strait Islander Cancer Framework

In 2015, Cancer Australia worked with Professor Gail Garvey and her team from the Menzies School of Health Research to develop an evidence-based, nationally agreed strategic framework to guide future Aboriginal and Torres Strait Islander cancer control efforts [5]. The project was overseen by the Leadership Group and a steering group with a majority of Aboriginal and Torres Strait Islander members.

The Framework provides high-level guidance and direction to improve cancer outcomes for Aboriginal and Torres Strait Islander people. It complements and enhances national, jurisdictional, regional, and local efforts to improve Aboriginal and Torres Strait Islander cancer outcomes, such as cancer plans and related policies, frameworks, and action plans. It determines priority areas for action, while providing flexibility for adaptation to local contexts and needs. It encompasses the full continuum of cancer control, including prevention, screening and early detection, diagnosis and treatment, palliative care, and survivorship. It also addresses the policies and research that surround these service areas.

The Framework was developed through a systematic literature review that examined the issues, gaps, and priorities for improving cancer outcomes in Aboriginal and Torres Strait Islander people. The review provided an evidence base to inform stakeholder consultations. A range of consultative approaches were used to reach stakeholders across Australia, including six face-to-face forums, a widely circulated online survey, and online discussion boards. Key stakeholder groups included:

• Aboriginal and Torres Strait Islander people affected by cancer, their families and support people, community leaders, and advocates within communities.

• Health professionals and service providers who work with Aboriginal and Torres Strait Islander people in cancer control, prevention, diagnosis and treatment, including the community-controlled health sector.

• Peak professional bodies and associations.

• Non-government organizations, researchers, state and territory governments, and Commonwealth departments.

Several hundred people provided input into the Framework via these consultations. A high proportion of participants were Aboriginal and Torres Strait Islander people, including many directly affected by cancer, their families, and/or carers. The Leadership Group informed the development of this foundational piece of policy, which has underpinned Cancer Australia’s work to improve outcomes for Aboriginal and Torres Strait Islander people since 2015.

The Framework identified seven priorities that would have the greatest impact on disparities in cancer outcomes:

• 1. Improve knowledge, attitudes, and understanding of cancer by individuals, families, carers, and community members (across the continuum).

• 2. Focus prevention activities to address specific barriers and enablers to minimize cancer risk for Aboriginal and Torres Strait Islander peoples.

• 3. Increase access to and participation in cancer screening and immunization for the prevention and early detection of cancers.

• 4. Ensure early diagnosis of symptomatic cancers.

• 5. Ensure Aboriginal and Torres Strait Islander people affected by cancer receive optimal and culturally appropriate treatment, services, and supportive and palliative care.

• 6. Ensure families and carers of Aboriginal and Torres Strait Islander people with cancer are involved, informed, supported, and enabled throughout the cancer experience.

• 7. Strengthen the capacity of cancer-related services and systems to deliver good quality, integrated services that meet the needs of Aboriginal and Torres Strait Islander people.

In 2020, stakeholders reaffirmed that the seven original priorities of the Framework remain current, and this is reflected in the Australian Cancer Plan.

Development of the Optimal Care Pathway for Aboriginal and Torres Strait Islander People with Cancer

The Optimal Care Pathway (OCP) for Aboriginal and Torres Strait Islander people with cancer was developed in 2018, with the aim of eliminating disparities and improving outcomes for Aboriginal and Torres Strait Islander people with cancer [6, 7]. This was Australia’s first population-specific OCP, designed to complement existing tumor-specific OCPs. The Leadership Group provided critical oversight and strategic input to the OCP’s development.

The OCP guides the delivery of high-quality, culturally appropriate, and evidence-based cancer care. It can be used as a tool for health services and health professionals to identify gaps in current cancer services and to inform quality improvement initiatives across all aspects of the care pathway. Clinicians can use the OCP to promote discussion and collaboration between health professionals and people affected by cancer.

The OCP was developed through an iterative methodology over a 2-year period, in collaboration with the Leadership Group and more than 70 organizations and individuals. The process included a national review of care experiences and national consultation with the Aboriginal and Torres Strait Islander health sector and community, health professionals, and professional colleges.

The OCP identifies three areas that require prioritization (Fig. 10.2):

• Ensuring culturally safe and accessible health services is essential to support early presentation and diagnosis.

• Multidisciplinary treatment planning and patient-centered care are required for all Aboriginal and Torres Strait Islander people, irrespective of location.

• Health planners and governments acknowledge the imperative for change and have expressed strong commitment to work with Indigenous Australians to improve the accessibility, cultural appropriateness, and quality of cancer care.

Fig. 10.2

Optimal Care Pathway (OCP) principles and steps [6, p. 26]

The Leadership Group informed the OCP’s development, including its key themes and appropriate messaging, and confirmed the importance of measuring the OCP’s impact. The Leadership Group provided input on supporting resources:

• A quick reference guide for health professionals.

• Consumer guides for Aboriginal and Torres Strait Islander people undergoing tests for suspected cancer and for those who have received a cancer diagnosis.

Reflections

The Leadership Group marks a significant step towards addressing cancer disparities. This group of leaders brings together diverse expertise and perspectives and fosters a strategic and focused approach to tackling the complex challenges surrounding cancer outcomes for Indigenous people. The policy advice of respected Aboriginal and Torres Strait Islander leaders and academics brought credibility to the process, strengthening engagement and supporting buy-in to national policy.

Increasing advocacy and leadership around the need for a national focus on cancer for Aboriginal and Torres Strait Islander people has enabled Cancer Australia to shape and lead discussions across health services alongside the recognition that cancer has become the leading cause of death for Aboriginal and Torres Strait Islander people.

Since 2015, Cancer Australia has placed increasing attention on the needs of the Aboriginal and Torres Strait Islander community. The ongoing advocacy and leadership of the National Aboriginal Community Controlled Health Organisation continues to provide partnership and alliance for Cancer Australia.

While the Leadership Group is one crucial step forward, it’s just one part of the comprehensive effort needed to address cancer outcomes for Indigenous communities. Achieving sustainable change requires broader systemic shifts, increased funding, and long-term commitment from governments and institutions. The Leadership Group has made important and meaningful contributions to strategic policy. To truly make a lasting impact, the group’s recommendations must be integrated into national policies, healthcare systems, and community initiatives, with ongoing consultation and collaboration with Indigenous communities at every stage.

Leadership Group Membership 2015–2023

Professor Jacinta Elston	2016–2022
Professor Gail Garvey	2016–current
Associate Professor Lisa Whop	2016–current
Ms. Tanya McGregor	2016–current
Associate Professor Phillip Carson	2017–2023
Ms. Sandra Miller	2017–2019
Professor Tom Calma AO	2018–current
Dr. Dawn Casey PSM	2018–current
Ms. Marilyn Morgan	2019–2023
Ms. Leanne Bird	2019–2023
Mr. Peter Bucksin	2019–2022
Mr. Karl Briscoe	2020–current
Associate Professor John Gilroy	2020–2023
Ms. Kristine Falzon	2023–current
Mr. Rob McPhee	2023–current
Mr. Trevor Pearce	2023–current
Ms. Leanne Pilkington	2023–current
Ms. Kate Thomann	2023–current
Ms. Kelly Trudgen	2023–current