FormalPara Key Points

  • Cancer control agencies in Australia, Aotearoa New Zealand, and Canada play critical roles in driving national cancer strategies, policies, and approaches to eliminate inequities in cancer control that disproportionately impact Indigenous peoples.

  • There is still much to do to achieve equitable cancer outcomes and experiences. Ensuring that government agencies work in partnership with Indigenous peoples, governments, organizations, and communities for the governance, design, delivery, and monitoring of health services for Indigenous peoples is key to eliminating inequities and meeting health and human rights.

Cancer control agencies drive national cancer strategies, policies, and approaches to improve cancer outcomes for people affected by cancer, their families, and carers. These agencies are in positions to facilitate system-level opportunities that, through collaboration and coordination, will enable countries to eliminate cancer control inequities, which disproportionately impact Indigenous peoples.

Cancer control agencies worldwide have roles and responsibilities under the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), which establishes a universal framework for reconciliation, healing, and peace. We are accountable to support and create spaces for ethical engagement based on the principles of justice and respect for human rights and equity for all [1, 2]. Cancer Australia, Te Aho o Te Kahu (the Aotearoa New Zealand Cancer Control Agency), and the Canadian Partnership Against Cancer each recognize that:

  • Indigenous people have experienced, and continue to experience, significant injustices, discrimination, and ongoing effects of colonization that have negatively influenced their health outcomes and prevented them from fully exercising their rights.

  • UNDRIP declares that Indigenous people have the right to participate in decision-making in matters that affect them, and aligned with the fundamental importance of the right to self-determination, cancer control agencies are committed to consult and collaborate with Indigenous peoples.

  • Only with contributions, leadership, and direction from Indigenous peoples will services and programs truly address what is important to address disparities experienced by Indigenous peoples.

We explore how Cancer Australia, Te Aho o Te Kahu (the Aotearoa New Zealand Cancer Control Agency), and the Canadian Partnership Against Cancer lead efforts to deliver better cancer outcomes for Indigenous peoples in Australia, Aotearoa New Zealand, and Canada. We acknowledge this work must be undertaken in partnership with Indigenous partners and we commit to creating spaces to support collaborative approaches to culturally appropriate care. We are stewards of this work, and our role is that of a supporter when and if identified by Indigenous partners. Our partners lead this work, our partners guide our priorities, and our partners continue to teach us how we can better create a cancer system that is equitable, accessible, and kind to all.

Cancer Australia

Cancer Australia provides national leadership in cancer control across all cancers and across the continuum of care, with a focus on populations who experience poorer health outcomes, including Aboriginal and Torres Strait Islander peoples.

Australia has one of the highest cancer survival rates in the world; however, this is not experienced uniformly. As cancer incidence and mortality have decreased for non-Indigenous Australians, they have increased for Indigenous Australians [3]. Cancer is now the leading cause of mortality for Aboriginal and Torres Strait Islander peoples [4]. Disadvantage across a range of socioeconomic and health indicators, poorer access to health services, systemic discrimination, communication barriers, lower health literacy, and a lack of culturally appropriate care all contribute to this widening gap [5, 6].

The Australian Government invested $238.5 million (AUD) in the 2023–2024 budget to ensure mainstream cancer care services are culturally safe, respectful, and accessible to Aboriginal and Torres Strait Islander people and to build the capacity and capability of the Aboriginal Community Controlled Health Services (ACCHS) sector to support cancer care needs on the ground. Professor Jacinta Elston, Advisor to Cancer Australia, Aboriginal and Torres Strait Islander Cancer Control, and previous Chair of the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control commented [personal communication, September 26, 2023]:

Ten years ago, there was nothing much happening nationally for Aboriginal and Torres Strait Islander people around cancer. Over the past decade, I have seen that Cancer Australia has driven a change in the narrative that cancer is a priority for Aboriginal and Torres Strait Islander health. … Since 2022 Cancer Australia has engaged me as an Advisor on Aboriginal and Torres Strait Islander Cancer Control … and I, along with the Leadership Group, have helped their development of the Aboriginal and Torres Strait Islander elements of Australia’s first national cancer plan.

Cancer Australia encourages and supports the cancer care system to provide optimal care that embeds Aboriginal and Torres Strait Islander voice, culture, strength, and knowledge. The agency collaborates with and seeks guidance from representative Aboriginal and Torres Strait Islander health organizations.

National Strategies, Policies, and Approaches in Relation to Aboriginal and Torres Strait Islander Peoples

The National Agreement on Closing the Gap (the Agreement) [7] is a commitment from all Australian governments and the Coalition of Aboriginal and Torres Strait Islander Peak Organisations to a new way of developing and implementing policies and programs that affect the lives of Aboriginal and Torres Strait Islander people. The four priority reforms in the Agreement are (1) formal partnerships and shared decision-making, (2) building the community-controlled sector, (3) transforming government organizations, and (4) shared access to data and information, to enable Aboriginal and Torres Strait Islander communities to make informed decisions. Cancer Australia recognizes that structural change in the way we work with Aboriginal and Torres Strait Islander people is needed to close the gap in cancer outcomes and is working in a new way that prioritizes partnership and shared decision-making between Aboriginal and Torres Islander people and governments.

The Australian Cancer Plan aims to deliver world-class outcomes and experiences for all Australians. It has a 10-year horizon, with 2-, 5-, and 10-year priorities and goals for its 6 strategic objectives. Its implementation will accelerate action to address system-level opportunities that involve partnerships between government and all elements of the health sector including ACCHS. Cancer Australia adopted an Aboriginal and Torres Strait Islander–led co-design approach to develop the components of the Plan specific to Aboriginal and Torres Strait Islander people and to provide advice across all strategic objectives [8].

Professor Tom Calma AO, member of the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control, commented [personal communication, September 26, 2023]:

As a member of the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control, I have been significantly engaged in the development of the Australian Cancer Plan. The Leadership Group has brought diverse views and input on the Australian Cancer Plan from members with cancer expertise, public policy, and lived experience with cancer. I was involved in directly engaging community-controlled health organizations to discuss the plan and local approaches to support Aboriginal and Torres Strait Islander people with cancer and noted the keen interest of all stakeholders to learn more about cancers, treatment, and coordinated and integrated service provision. They particularly welcomed the opportunity to be engaged and heard.

The Plan has a specific strategic objective to achieve equity in cancer outcomes for Aboriginal and Torres Strait Islander people, and 15 of the Plan’s 46 actions are Indigenous-specific (across all strategic objectives). The Plan acknowledges that Aboriginal and Torres Strait Islander health belongs in Aboriginal and Torres Strait Islander hands and gives priority to closing the gap in cancer outcomes by addressing individual and institutional racism and discrimination across cancer services. The Plan emphasizes the need to co-design services, deliver place-based care, and partner with Aboriginal and Torres Strait Islander people to deliver culturally safe and appropriate care across the cancer continuum.

Te Aho o Te Kahu, Aotearoa New Zealand Cancer Control Agency

Like other Indigenous peoples around the world, the Māori people of Aotearoa New Zealand experience significant inequities across many parts of the cancer continuum. Māori are 20% more likely to be diagnosed with cancer than non-Māori; and once diagnosed, are twice as likely to die from cancer [9]. Māori people are also less likely to access cancer screening [10] and less likely to access best practice treatment for their stage of disease [11,12,13]. As in other jurisdictions, these disparities reflect systemic disparities in access to the social determinants of good health, including cancer prevention and best practice care [14].

In 2019, in response to public advocacy, the Aotearoa New Zealand Government created the country’s first national Cancer Control Agency, reporting directly to the Minister of Health. The agency provides strong central leadership, oversees cancer control, and leads and unites efforts to improve cancer outcomes for Aotearoa New Zealand.

The whakapapa (genealogy) and māoritanga (meaning) of the agency’s Māori name reflects its commitment to working with Māori. The new Cancer Control Agency established a partnership with Hei Āhuru Mōwai, an independent organization of Māori cancer experts. The members of Hei Āhuru Mōwai worked alongside the agency’s leaders and others to develop the agency’s vision and values (see Fig. 11.1).

Fig. 11.1
A text box lists the vision and values of Te Aho o Te Kahu. The former includes fewer cancers, better survival, and equity for all. The latter includes equity-led, knowledge-driven, outcomes-focused, and person- and whanau-centered.

Vision and values of Te Aho o Te Kahu

Full size image

As part of this process, Hei Āhuru Mōwai gifted the name Te Aho o Te Kahu to the agency. This translates as the central or binding thread (te aho) of the cloak (te kahu). The central thread symbolizes the agency, whereas the strands (whenu) symbolize all the organizations, services, stakeholder groups, and individuals across Aotearoa New Zealand’s cancer continuum. The kahu (cloak) metaphorically provides wraparound care, protection, and support for patients and their whānau (families) as they navigate the cancer control system. The agency is envisioned as a unifying connector that enables and drives the equitable provision of cancer control across the country [14].

The agency’s creation and operating model reflected a renewed government commitment to deliver on the principles and aspirations of Te Tiriti o Waitangi (Treaty of Waitangi), the founding agreement between Māori and the British Government. Initially ignored in many ways by successive governments, all public sector organizations now must give effect to Te Tiriti o Waitangi. In the health context, this has resulted in five principles to drive the future delivery of healthcare in Aotearoa New Zealand [15].

Te Aho o Te Kahu was created as the country prepared to undergo once-in-a-generation reforms to the health system. This created two new health entities to drive future decision-making and the commissioning of health services in Aotearoa New Zealand. Their first joint strategic plan [16] and the passing of legislation focused on the health sector reforms [17] have created the foundations for change.

Working with Māori: What This Looks Like in Practice

This environment has created many opportunities for Te Aho o Te Kahu to embed system-level change, including:

  • A formal partnership with Hei Āhuru Mōwai including reporting on how the mana (prestige and status) of the name is upheld.

  • The creation of two advisory groups (a Clinical Assembly and a Consumer Advisory Group), with 50% membership reserved for Māori.

  • Incorporating equity and Te Tiriti o Waitangi analysis into business and project management processes.

  • Involving Māori cancer professionals and patients in work to deliver options for the future delivery of cancer treatment services [18].

  • Partnering with iwi (Tribal groups) and local organizations to deliver the largest Māori cancer engagement process undertaken in this country. The resulting report series [19] is influencing Te Aho o Te Kahu work programs and those of the wider health system.

  • Measuring and reporting information about Māori on most cancer indicators, including a comprehensive summary of the cancer sector [9] and ongoing quality improvement reports [20].

While the agency is proud of its work to date and its partnership with Hei Āhuru Mōwai, there is still much to do to achieve equitable cancer outcomes and experiences, particularly for Māori. In this context, the agency is driven by a whakatauāki (proverb) from renowned kaumātua (respected Elder), the late Sir James Henare, which roughly translates as follows: you’ve come too far not to go further and you’ve done too much not to do more.

Canadian Partnership Against Cancer

The Canadian Partnership Against Cancer (the Partnership) is the steward of the Canadian Strategy for Cancer Control. The Partnership facilitates efforts and supports partners across the country to advance the Strategy’s pan-Canadian priorities and actions. Together, the Partnership strives to ensure:

  • Fewer people in Canada develop cancer.

  • More people in Canada survive cancer.

  • People in Canada affected by cancer have a better quality of life.

  • All people in Canada have equitable access to high-quality cancer care, no matter who they are or where they live.

  • Three peoples–specific priorities identified by First Nations, Inuit, and Métis [21].

  • Culturally appropriate care closer to home: peoples-specific, self-determined care.

  • First Nations, Inuit, and Métis–governed research and data systems [21].

Partnership is at the heart of this work, which supports cancer agencies and programs, health system partners, and communities across provinces and territories with funding, skills, resources, and evidence to develop sustainable solutions, take action, and improve cancer outcomes. While not delivering patient care, the Partnership works alongside partners to advance pan-Canadian cancer priorities and implement initiatives to ensure equity of access, experience, and outcomes in cancer care for everyone in Canada within a sustainable healthcare system.

The Partnership’s approach is strengths-based, evidence-led, and inclusive. It builds on the unique and diverse strengths of partners and draws from the latest research and knowledge. The Partnership champions the needs of equity-denied populations and advancing equity is a key focus of work with partners [22].

We continue to hear from First Nations, Inuit, and Métis partners that, to create change, representation must be included in spaces of policy development, priority setting, strategic planning, and program implementation. Trust in the healthcare system was broken due to colonial policies and practices that continue to exist and will take many years, if not generations, to mend. Representation matters when First Nations, Inuit, and Métis patients see themselves reflected in the care they receive. Representation also matters where long-term changes are being made, such as representation in leadership roles with the ability to impact the development of cancer care policies and standards of practice. Inclusion of cultural practices led and owned by First Nations, Inuit, and Métis peoples would eliminate mistrust in the cancer care system and reflect reconciliation in practice. Cultural knowledge from lived experience must be a contributing factor to recruitment and be weighted at a level that impacts staffing outcomes. Furthermore, First Nations, Inuit, and Métis staff must be recruited, hired, and retained in roles that impact [23].

National Strategies, Policies, and Approaches in Relation to First Nations, Inuit, and Métis People

The Partnership acknowledges that colonial practices and policies continue to impact the wellbeing of First Nations, Inuit, and Métis. First Nations, Inuit, and Métis governments, organizations, and communities are leading the work that will result in improved wellbeing with the development and implementation of peoples-specific, self-determined solutions. The Partnership is providing funds to almost 30 partners, who are collectively working with over 130 First Nations, Inuit, and Métis governments, organizations, and community partners to develop and implement peoples-specific cancer strategies [24]. Supporting this work is key to sustainable system change and to closing the gaps in cancer care and outcomes between First Nations, Inuit, Métis, and other people in Canada.

The Partnership is committed to working in a reconciliatory way with First Nations, Inuit, and Métis to improve the cancer system by:

  • Implementing the Truth and Reconciliation Commission’s Calls to Action [23].

  • Supporting self-determined, regional, and peoples-specific priorities in the Canadian Strategy for Cancer Control [22].

  • Supporting partners in their efforts to improve the quality of life, access, experience, and health outcomes of all First Nations, Inuit, and Métis patients and families [25].

  • Encouraging an organization-wide approach to implementing the Canadian Strategy for Cancer Control guided by First Nations, Inuit, and Métis governments, organizations, advisors, and partners, supported by ongoing, mandatory cultural competency training for Partnership staff.

The Partnership’s Reconciliation Pathway is a living record and summary of the Partnership’s journey towards reconciliation. The intent of this pathway is to support the organization by highlighting the importance of engagement, relationships, and meaningful partnership—and the work it takes to do these in a respectful way.