FormalPara Key Points

  • To enact Indigenous Data Sovereignty in cancer reporting, it is imperative that data collection systems recognize the rights of Indigenous peoples to collect, use, and manage their own data.

  • The emergence of an Indigenous Data Sovereignty framework and principles empowers Indigenous peoples to control, protect, and develop data, ensuring that it reflects their experiences, values, and understandings.

  • Implementing Indigenous governance processes and achieving Indigenous leadership in cancer reporting underscore the ongoing work needed to support Indigenous Data Sovereignty.

Discussions on the development of data and information concerning Indigenous peoples have been occurring since the 1950s. The initial issues related to Indigenous data were recognized and addressed internationally through the United Nations International Labour Organization Conventions No.107 (1957) and No.169 (1989) [1, 2]. The 2007 United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) underscores the rights of Indigenous peoples to live in dignity; maintain and strengthen their institutions, cultures, and traditions; and pursue self-determined development based on Indigenous needs and aspirations [3]. This includes ensuring the quality and usability of Indigenous data to best serve the needs and aspirations of Indigenous peoples.

The concept of Indigenous Data Sovereignty (ID-SOV) has emerged as a way to ensure the UNDRIP rights are met, describing the right to control, maintain, protect, develop, and use data as it relates to Aboriginal and Torres Strait Islander peoples and their communities [3]. Essentially, ID-SOV describes how the rights of Indigenous peoples and the information that pertains to them and their experiences, including their cultural knowledge, values, and understandings, are developed and reflected in the data [4]. There are developing processes regarding how Indigenous peoples globally assert their rights in the collection, use, and management of data, including the operationalization of these rights across cancer data.

ID-SOV can provide a principle-based framework to operationalize how cancer data are collected and used to report on the care and outcomes of those affected by cancer. This chapter describes the Australian cancer data reporting landscape and proposes practical strategies for operationalizing ID-SOV. By examining the Australian context, the chapter aims to contribute some insights that can inform similar initiatives globally.

Indigenous Data Sovereignty Principles

ID-SOV provides guiding principles that articulate the rights of Indigenous peoples over their data and information. These principles emphasize the autonomy, control, and self-determination of Indigenous communities in the collection, management, and use of data that pertain to them.

In Australia, the Maiam nayri Wingara Indigenous Data Sovereignty Collective has developed ID-SOV principles [5]. These principles are designed to counter historical practices of data colonialism, where external entities often collected, controlled, and used data from Indigenous communities without meaningful consent or benefit, often to the detriment of individuals and communities. ID-SOV principles provide a framework to guide ethical, equitable, and culturally sensitive approaches to data management and research involving Indigenous peoples. They aim to empower Indigenous communities, foster trust, and ensure data are used in ways that align with the self-determined priorities of Indigenous peoples.

International Data Guidelines to Support Indigenous Data Sovereignty

Supporting the operationalization of ID-SOV in official population-level reporting of health and wellbeing data requires understanding the legal and regulatory systems in which data are collected and used. Data governance is “… managing information in a way that is consistent with the laws, practices and customs of the nation-state in which it is located” [6]. Data governance creates tensions when it comes to ensuring the inherent and inalienable rights of Indigenous peoples are met by being the custodians of their knowledges and the information that pertains to them.

There are some general international guidelines and frameworks relevant to data used for official reporting and data reuse, including the principles found across the General Data Protection Regulation (GDPR) [7], the FAIR and CARE principles [8, 9], and the Five Safes principles [10] (Table 9.1). This is by no means a comprehensive list; however, together they do capture a range of key principles about population-level data used for health measurement and reporting. Furthermore, they provide international standards for data management and sharing.

Table 9.1 Four international guidelines in Indigenous data
Full size table

Specifically, GDPR principles focus on the legal and ethical processing of personal data, emphasizing transparency, purpose limitation, and accountability. FAIR principles advocate for findable, accessible, interoperable, and reusable data, promoting a standardized approach to data management. The CARE Principles for Indigenous Data Governance define collective benefit, authority to control, responsibility, and ethics in relation to the engagement with and secondary use of Indigenous data. In Australia, the FAIR and CARE principles are currently being incorporated across organizations that collect, access, and use Aboriginal and Torres Strait Islander population-level data. The Five Safes principles ensure safe research access to data by addressing data confidentiality, project approval, researcher training, secure settings, and screened outputs. In Australia, the Five Safes are used within the regulatory bodies for national data collection, including by the Australian Bureau of Statistics.

The CARE principles are important to enacting ID-SOV because they prioritize Indigenous self-determination, equity, and ethics in data governance. They empower Indigenous peoples to reclaim control over their data, promote local development, and ensure that data ecosystems are designed to benefit Indigenous communities [11]. By integrating these principles into policies and practices, institutions can build trust, respect Tribal sovereignty, and foster meaningful relationships with Indigenous communities.

Understanding Indigenous Data Sovereignty in Practice

Operationalizing ID-SOV in practice requires identifying the factors that influence the way it is conceptualized. This is described in Figs. 9.1 and 9.2, with Fig. 9.1 showing the multiple levels that ID-SOV can be actioned [12, 13], and Fig. 9.2 showing a range of components that can be considered when working towards developing ID-SOV into practice [13].

Fig. 9.1
4 levels of indigenous data sovereignty titled international, national, place based, and individual. International data include international law. National data include national legislation. Place based data include institutional policies. Individual data include identifying in data.

Levels to consider in understanding Indigenous Data Sovereignty in practice. (Sources: Trudgett et al. [12] and Griffiths et al. [13])

Full size image
Fig. 9.2
A circular chart presents the components of indigenous data sovereignty. The components include self determination, performance, data sharing, data types, measurements, data literacy, centralized infrastructure, centralized governance processes, and capacity building.

Components to consider in operationalizing Indigenous Data Sovereignty. (Source: Griffiths et al. [14])

Full size image

Levels of Action to Operationalize Indigenous Data Sovereignty

International considerations highlight the importance of aligning data practices with legal standards, adopting interoperable data standards, and following ethical frameworks to ensure responsible and equitable data management on a global scale. Nationally, legislation can provide a legal framework, while ethics and data policies provide the necessary guidelines for responsible and ethical conduct in research and data management. In a place-based context, institutional policies and localized governance mechanisms are essential for tailoring data practices to the specific needs and values of a community or organization. At the individual level, considerations such as self-identification within the data, data literacy, and informed dynamic consent highlight the importance of respecting individuals’ rights, promoting transparency, and empowering them to make informed decisions about their data.

Indigenous Perspectives on Cancer Data and Reporting

Accurate and appropriate cancer data are required to support routine reporting and important research. These data are also required to provide policy assessment. Cancer data exist across a range of fields of research and systems, including data collected and used for research and reporting, data collected for administrative processes (e.g., hospital data, registry data, and primary healthcare data), and data used to address specific questions about people affected by cancer (e.g., clinical trials data, survey data, genomics data). Cancer reporting for Indigenous people consists of two components: (1) cancer measures, which include epidemiological measures such as incidence and survival, measures that center those affected by cancer and their experiences, and measures that assess service function and quality, and (2) cancer data, which are collected to provide information on the measures that are routinely reported upon and that have been or may yet be developed.

An Australian Case Study: The Kulay Kalingka National Cohort Study

The Kulay Kalingka national cohort study of the cancer experiences of Aboriginal and Torres Strait Islander peoples utilizes focus groups, interviews, workshops, and presentations to identify cancer-related measures that are meaningful to the study cohort [15]. Importantly, this study has demonstrated and enacted ID-SOV principles, including the principles of Maiam nayri Wingara in its research approach [15]:

  • Principle 1 ensures Aboriginal and Torres Strait Islander control over the project, led by Indigenous leadership and a team majority.

  • Principle 2 focuses on providing contextual and disaggregated data for a strengths-based analysis, acknowledging cultural diversity and historical impacts.

  • Principle 3 contributes to Indigenous self-determination by granting control and governance to communities, aligning with policy priorities.

  • Principle 4 establishes accountable data structures, following specific storage procedures and maintaining rigorous security measures.

  • Principle 5 prioritizes protective and respectful results, disseminated through various channels to guide improvements in cancer experiences for Indigenous populations.

Australian Cancer Policy

In Australia, several national cancer-related documents have been developed through the leadership of Aboriginal and/or Torres Strait Islander individuals and groups. As an example, the National Cancer Control Indicators were developed to include a range of indicators that report against the National Aboriginal and Torres Strait Islander Cancer Framework [16]. These indicators are the result of mechanisms that provided space for the voices of Indigenous people to be heard within the current colonial systems, such as the Leadership Group on Aboriginal and Torres Strait Islander Cancer Control within Cancer Australia, the Australian Government’s cancer authority. This Leadership Group provides an advocacy platform for the inclusion, collection, and reporting of measures and indicators that matter to Indigenous people in cancer care and control.

Challenges and Opportunities for Operationalizing Indigenous Data Sovereignty in Cancer Reporting

Enacting the principles of ID-SOV requires those working in cancer to address the research–practice–policy links that can enable this to occur. There has been limited research exploring the implementation processes of Indigenous governance that can support mediating pathways and enable Indigenous leadership and voices across the levels described in Fig. 9.1.

While there has been a growing movement addressing the ways Indigenous people engage within and lead research, normalcy in supporting ID-SOV is developing slowly. Furthermore, there has been varied engagement by the fields that cancer data exist within in the ways that Indigenous data is collected, owned, and used. There are opportunities to develop and strengthen national and international legislation that recognizes and protects ID-SOV. Further, investing in education and developing capabilities in data that support nation building provides opportunities to ensure that technology, infrastructure, and systems align with Indigenous people’s priorities and needs when it comes to cancer data.

Conclusion

The discourse on Indigenous data and information rights spans several decades, with international recognition beginning in the 1950s through UN Conventions and culminating in the 2007 UNDRIP. The emergence of ID-SOV principles, which emphasize control, relevance, and protection, offers a framework to operationalize the rights of Indigenous and Tribal peoples. Applying ID-SOV in the context of cancer data is critical, considering the multiple levels involved in accurate reporting for Indigenous populations. Australia, particularly the Kulay Kalingka Study, has demonstrated commitment to these principles, ensuring Indigenous control, contextual data, self-determination, and accountable structures. However, challenges persist in aligning research–practice–policy links and mediating pathways, necessitating further exploration of Indigenous governance implementation processes. While progress has been made, ongoing efforts are required to normalize and enhance ID-SOV in the collection, use, and management of data across various fields, including cancer reporting.