FormalPara Key Points

  • Cancer statistics are required to support public health decisions, healthcare planning, research, and policy development.

  • There are flaws in the accuracy and completeness of Indigenous peoples’ cancer data, resulting in under-reporting.

  • Both relative and absolute measures are required when reporting Indigenous peoples’ cancer statistics.

  • There are numerous considerations in the collection and use of Indigenous peoples’ data for cancer surveillance and reporting.

Conventional cancer indicators, such as incidence, survival, and mortality rates, serve as critical metrics for understanding the impact of cancer on populations at large. However, when assessing the impact upon Indigenous and Tribal communities, issues with these conventional indicators and the comprehensiveness of the reporting become apparent. Indigenous and Tribal communities often face unique challenges, including limited access to healthcare, cultural and language barriers within healthcare systems, and socioeconomic factors, which can significantly influence the accuracy and relevance of standard cancer data.

Incidences of cancer in Indigenous and Tribal communities have been documented since the early 1920s, but not widely until the mid-1950s [1]. It is widely recognized that there are gaps in the accuracy and availability of the cancer data pertaining to Indigenous peoples, limiting routine reporting around the globe. This highlights an imperative to ensure the quality and availability of Indigenous peoples’ cancer data and to provide measures that reflect the impact of cancer on Indigenous peoples.

This chapter aims to provide an overview of cancer statistics in Indigenous and Tribal communities globally, with a focus on Australia, Aotearoa New Zealand, Canada, and the United States.

An Overview of Cancer Surveillance and Systems in Indigenous and Tribal Communities

Australia

Efforts have been made to improve cancer surveillance among Aboriginal and Torres Strait Islander peoples in Australia. This has included recognition of data gaps and collective efforts to improve cancer reporting across state and territory jurisdictions through Aboriginal and Torres Strait Islander leadership in collaboration with governments.

In Australia, Aboriginal and Torres Strait Islander standard cancer reporting on incidence, treatment, and outcomes is still only possible at a semi-national level due to limitations in data collection systems and processes.

Cancer Australia has developed a range of Aboriginal and Torres Strait Islander Cancer Control Indicators that reflect priority areas of (1) cancer awareness and beliefs, (2) prevention, (3) screening and immunization, (4) diagnosis, (5) treatment and support, (6) families and carers, and (7) services and systems [2]. While these are appropriate measures, there is limited or no data to report against these indicators. This highlights the ongoing need to ensure routine reporting of Aboriginal and Torres Strait Islander-prioritized cancer indicators in Australia.

Aotearoa New Zealand

The Aotearoa New Zealand Cancer Registry has implemented initiatives to improve data collection and reporting for Māori populations, acknowledging the importance of comprehensive national reporting and addressing government obligations under Te Trirti o Waitangi (Treaty of Waitangi) to support Māori health and wellbeing aspirations. Aotearoa New Zealand is the only country in the world that has the ability to routinely report national Indigenous cancer statistics.

Canada

Indigenous communities, including First Nations, Inuit, and Métis peoples, experience unique challenges related to cancer measurement. The First Nations Cancer Surveillance Program, as part of the Canadian Partnership Against Cancer, as well as Statistics Canada [3] provide valuable data on cancer incidence, mortality, and survival rates within these populations. Culturally appropriate data collection strategies, community engagement, and collaboration with Indigenous organizations are essential components of measuring cancer in Canada’s Indigenous communities.

United States

The National Program of Cancer Registries of the Centers for Disease Control and/or the Surveillance, Epidemiology, and End Results (SEER) Program in the National Cancer Institute’s Division of Cancer Control and Population Sciences provides data on cancer incidence and mortality among Indigenous populations in the United States.

Other Nations

Many nations, such as Brazil, Mexico, and India, have implemented initiatives to collect cancer data specific to Indigenous populations. However, significant gaps remain in terms of comprehensive data collection, comparability, and access to healthcare services.

Global Perspective

On a global scale, efforts have been made to address the disparities in cancer measurement among Indigenous and Tribal communities. The International Agency for Research on Cancer (IARC) and the World Health Organization (WHO) play crucial roles in coordinating data collection, providing technical support, and promoting research collaborations. There are also opportunities for global data collections to incorporate cancer reporting on Indigenous peoples and/or support existing measurement systems that enable and ensure routine reporting where Indigenous peoples’ data are currently collected, but not reported on. However, challenges remain in terms of data standardization and quality, as well as governance that ensures Indigenous peoples’ leadership and oversight of their data.

Considerations When Collecting and Analyzing Indigenous Peoples’ Cancer Data

Cancer registries allow for the collection, storage, and analysis of information on people diagnosed with cancer. This information is used to monitor cancer rates, trends over time, patterns across regions and populations, and the outcomes of treatment and cancer care. Historically, developments in collecting and reporting cancer data have provided enormous benefits for the general population. However, major efforts are still required today to collect data and information regarding Indigenous and Tribal peoples to better support equitable outcomes.

There are several considerations that require our attention to ensure the appropriate collection, storage, and use of Indigenous and Tribal peoples’ cancer data. The operational considerations outlined below are also important when it comes to cancer data. Specific operational considerations regarding Indigenous peoples’ data include (1) recognition and identification, (2) systems and processes, (3) priority setting, and (4) monitoring.

Recognition and Identification

The identification of Indigenous peoples in official data can only be fully realized if there is recognition within the nation states in which they live [4]. The identification of Indigenous peoples within data ensures visibility in reporting, which is critical in assessing progress in cancer and service delivery. Furthermore, data and the information collected about Indigenous peoples that reflect both standard cancer measures (incidence, survival, mortality, etc.) and Indigenous-specific measures (wellbeing, wellness, experiences of cancer care, etc.) are required to support appropriate, reflective cancer reporting. For Indigenous peoples to have quality and accurate cancer reporting, they must be represented in the data and their realities and needs must be accurately reflected.

Recommendations from the 2007 United Nations Declaration on the Rights of Indigenous Peoples that are relevant to supporting recognition and identification across national data collections include Article 8, which aims to:

… provide effective mechanisms for prevention of, and redress for … any action which has the aim or effect of depriving them of their integrity as distinct peoples or ethnic identities, or of their cultural values [5].

Furthermore, Article 15 states:

Indigenous Peoples have the right to the dignity and diversity of their cultures, traditions, histories and aspirations which shall be appropriately reflected in education and public information [5].

Systems and Processes

Systems and processes include the infrastructure and associated procedures surrounding the collection, storage, and use of cancer data. Indigenous peoples’ engagement with data systems and processes is embedded within the historical positionality of their communities within those nations. Ensuring the rights of Indigenous peoples are met, and building systems and processes that enable accurate and appropriate health and disease reporting, requires resourcing, governance, and policy that reflect values, understandings, and aspirations of Indigenous peoples within their respective nations. Global developments in Indigenous data sovereignty provide a charter to build data systems that work for Indigenous peoples.

Indigenous data sovereignty has been defined by Kukutai and Taylor as the inherent and inalienable rights and interests of Indigenous peoples relating to the collection, ownership, and application of data and information about their people, ways of life, and territories [6]. Internationally, the CARE Principles for Indigenous Data Governance (Table 13.1) have been developed to support the governance of Indigenous peoples’ data [7].

Table 13.1 Care principles for indigenous data governance
Full size table

Indigenizing cancer systems and processes that support the rights of Indigenous people is only possible with government support and collective agreements that work to enact resourcing, governance, and policy. However, this cannot be achieved without recognition of Indigenous peoples that is reflected in the cancer data and resulting reporting.

Priority Setting

Priority setting considers how and by whom decisions are made. Supporting mechanisms that ensure the voices of communities and Indigenous leaders are a requirement within colonial systems. Without these mechanisms, priority setting may not appropriately recognize the needs and aspirations of Indigenous peoples. It is important to understand that there are varying levels of power by which these priorities can be set. For example, there are opportunities for reference and advisory individuals and/or groups as well as boards to support priority setting. However, some of these groups and committees may lack the structural power required to formalize decision-making.

Regarding data and statistics, priority setting is necessary across measurement development as well as an understanding of variables and monitoring. In Australia, for example, a number of National Cancer Control Indicators have been developed to report against the National Aboriginal and Torres Strait Islander Cancer Framework and align with the Optimal Cancer Care Pathways for Aboriginal and Torres Strait Islander people [2]. These indicators were developed through the existing Aboriginal and Torres Strait Islander Leadership Group within Cancer Australia, the nation’s government body for cancer control.

Monitoring

Cancer is a notifiable disease as a function of public health legislation within most nations. The point of this is to enable statistical reporting to governments that they may better understand the public health needs of their citizens. The same logic is applied to providing statistics for subpopulations. Governments are responsible for their citizens and must recognize that some populations have different impacts and needs. Understanding and addressing the impact of cancer upon Indigenous peoples in their respective nations requires ongoing monitoring that accurately and appropriately reflects such needs.

Measuring Risk Factors and Cancer Prevention

Understanding the social, cultural, and commercial determinants of cancer requires further efforts in measuring risk factors and the effectiveness of prevention strategies within Indigenous communities. There are structural and intermediary determinants that impact service provision and cancer risk factors, respectively. Structural determinants include governance, macroeconomic and social policies, as well as cultural and social positionality and values. Intermediary determinants can include housing, work environment, social support, and stress, as well as behavioral factors that can be affected through commercial entities. Cultural determinants, including traditional practices, beliefs, and spirituality, should be acknowledged and incorporated into prevention efforts. Identifying the commercial determinants, such as the impact of tobacco, alcohol, mining, and unhealthy food marketing on Indigenous and Tribal communities, should be measured and assessed to address the combined effects of these and other determinants on cancer outcomes.

Measuring risk factors, such as tobacco and alcohol use, obesity, and exposure to environmental toxins, provides valuable insights into the potential impact of cancer among Indigenous and Tribal populations. Understanding the unique risk profiles within these communities allows for targeted interventions, policy development, and resource allocation. Collecting data on risk factors also helps monitor the effectiveness of prevention programs and identify areas requiring further attention.

Future Directions and Recommendations

Strengthening Data Collection Systems

Investing in robust data collection systems that recognize and identify Indigenous peoples is essential. Building culturally reflective datasets that adequately assess impact and need, as well as ensuring participatory mechanisms, will enable accurate and appropriate statistical reporting.

Enhancing Collaboration and Partnerships

Strong partnerships between governments, researchers, healthcare providers, Indigenous organizations, and Indigenous communities are crucial. Collaboration should be fostered at all stages. Joint decision-making, knowledge exchange, and capacity-building initiatives that ensure culturally safe and competent environments will contribute to more meaningful and impactful outcomes.

Improving Data Quality and Accessibility

Efforts should be made to improve the quality and comparability of cancer data among Indigenous populations. Standardized protocols, data validation processes, and quality assurance measures should be implemented. Additionally, relevant data should be made accessible to Indigenous communities, policymakers, and healthcare providers through user-friendly platforms and culturally relevant reporting formats.

Addressing Structural Barriers

Structural barriers, such as systemic racism, colonization, and social inequities, contribute to cancer disparities among Indigenous communities. Addressing these barriers requires structural changes, in terms of policy reforms, increased funding for healthcare services, and enabling Indigenous self-determination in health governance. Accordingly, the inclusion of Indigenous perspectives and voices in policy-making processes is essential.

Conclusions

Statistical reporting of cancer in Indigenous and Tribal communities is essential for addressing existing disparities and improving health outcomes. Efforts to collect, analyze, and interpret cancer data should be culturally relevant and Indigenous led. By considering the challenges, risk factors, and cultural determinants faced by Indigenous and Tribal populations, we can develop targeted prevention strategies, reduce cancer burden, and improve survival rates. Through relevant and appropriate reporting that enables Indigenous visibility, supports collective rights and Indigenous voices, and enacts data sovereignty, we can make significant progress towards achieving health equity for Indigenous and Tribal communities globally.