FormalPara Key Points

  • Cancer registries are an important element of population cancer control.

  • An estimated one-third of population-based cancer registries in countries or regions with an Indigenous population do not collect information on patients’ Indigenous identity and more do not report Indigenous cancer statistics.

  • Barriers and solutions at the data, person, service/information system, and sociopolitical levels are identified and described in this chapter.

Population-based cancer registries (PBCRs) are data information systems that systematically collect, record, and manage data of cancer patients within a defined population [1]. They play a valuable role in cancer surveillance within a given population, identifying changes in cancer incidence over time, across regions, and among diverse population groups, and, when linked to death registration data, enable the analysis of survival patterns [2]. These data are critical for assessing the need for and effectiveness of national cancer control programs, identifying possible cancer causes, and assisting patients and their healthcare professionals to make informed care decisions [3].

PBCRs collate secondary data, primarily from hospital, laboratory, and death registry records. At a minimum, PBCRs collect information on some clinical features of cancer (e.g., cancer diagnosis date, type, and diagnosis basis) and individual demographics (e.g., date of birth/age and place of residence) [3]. While race/ethnicity data are considered a basic element [3], the extent to which Indigenous identification is captured remains unclear. PBCRs that collect this information derive it from multiple administrative sources. Therefore, the quality of Indigenous identification in PBCRs is only as good as in the original sources.

The United Nations recognizes the right of Indigenous peoples to be counted in population and health data collections [4]. Due to the persistent inequalities in cancer outcomes, efforts to improve the measurement of Indigenous peoples’ health data, including in cancer registries, have increased [5, 6]. A 2019 assessment evaluated the collection, recording, and reporting practices of Indigenous identification information by global PBCRs [7]. PBCRs in countries or regions with an Indigenous population, per the 2018 and 2019 Indigenous World yearbooks [8, 9], were invited to participate. Key barriers, strategies, and progress related to collecting and reporting of Indigenous data from PBCRs are summarized here.

Barriers and Strategies Related to PBCR’s Collection and Reporting of Indigenous Data

Of the 371 eligible registries invited from 54 countries, 83 PBCRs from 25 countries participated in the 2019 assessment [7]. In brief, 12% were national registries and 78% were subnational (i.e., state, provincial, or district-based). Two-thirds (66%) of PBCRs collected Indigenous identification information of new registrations: 100% in the Pacific/Oceania region, 78% in North America, 61% in Asia, 44% in Central/South America, and 33% each in the Arctic Circle and Africa. Just over two-thirds had published Indigenous-specific statistics using registry data. Twenty-eight (34%) PBCRs did not collect Indigenous identity information and a further 18 (28%) that did contain Indigenous identity data did not use it to report cancer statistics specific to Indigenous peoples.

The key barriers to PBCR’s collecting and/or reporting Indigenous people’s data identified in the 2019 report were predominately relating to health services, information systems, and sociopolitical environments [7]:

  1. 1.

    Lack of routine and/or standardized data collection at point of care by healthcare staff—most frequently reported by PBCRs in Asia, Central/South America, and North America.

  2. 2.

    Not all PBCR information systems allow transfer of Indigenous identification data from point of care to the cancer registries.

  3. 3.

    Perception by some PBCR respondents that Indigenous identification was not a clinically relevant variable and Indigenous peoples’ cancer statistics had no bearing on clinical decision-making.

  4. 4.

    Legislation prohibiting the collection of Indigenous identification data—most frequently reported by Asian and North American PBCRs.

  5. 5.

    Lack of legal and social recognition of Indigenous peoples.

  6. 6.

    Lack of interest from national health authorities to produce cancer statistics for Indigenous peoples.

  7. 7.

    Perception that collecting such information was a form of discrimination against non-Indigenous peoples.

  8. 8.

    Perception that collecting such data had potential to cause discrimination against Indigenous peoples or infringe on individuals’ privacy.

The report also identified potential strategies to improve the collection and use of Indigenous data, at various levels of influence [7]. These included:

  1. 1.

    Strategies to influence sociopolitical barriers:

    1. (a)

      Raise public awareness of Indigenous peoples and the importance of Indigenous-specific cancer statistics.

    2. (b)

      Engage and consult with local Indigenous and Tribal groups to understand definitions of Indigeneity and how these groups wish to be identified.

    3. (c)

      Lobby for legislation change to allow and mandate that health service staff and health professionals ask about Indigenous identity at point of care, not only to enable accurate collection of Indigenous identification data but to support culturally safe and responsive care.

  2. 2.

    Strategies to influence health system/service barriers:

    1. (a)

      Develop and implement guidelines to standardize the collection and reporting of Indigenous identification information.

    2. (b)

      Develop and implement systems capable of capturing and transferring Indigenous identification through the information pathway, including ensuring referral and other forms contain a field to support the collection of these data.

    3. (c)

      Develop and implement best practice guidelines to assess completeness and accuracy of these data and guide the conduct of data linkage to enable reporting of Indigenous peoples’ cancer statistics.

    4. (d)

      Collaborate with Indigenous communities to guide systems and service improvements that support collecting, recording, categorizing, and reporting Indigenous information.

  3. 3.

    Strategies to influence health professional barriers:

    1. (a)

      Design/re-design and deliver education for healthcare professionals and administrative staff to improve primary data collection and raise awareness of the importance of asking about identity.

    2. (b)

      Improve the cultural safety of health services and facilities to support patients to provide accurate information about their identity.

  4. 4.

    Strategies to influence data systems and patient behavior:

    1. (a)

      Provide information/education to patients and families explaining the importance of PBCRs and the inclusion of Indigenous identification data, what the information will be used for, and that they have the right to not disclose their Indigeneity.

    2. (b)

      Where small population size prohibits typical approaches to reporting cancer statistics, aggregation of multiple years or jurisdictions should be explored to enable the reporting of Indigenous cancer statistics.

Notably, the importance of community engagement in addressing this issue was identified.

Progress Towards Routine Collection and Reporting of Indigenous Cancer Information

Here we will discuss progress regarding three key barriers to the collection of Indigenous identification information in various countries or regions.

Legislation Regarding the Definition and Collection of Indigenous Data in Selected Asian Countries

Several countries in Southern/Southeast Asia face significant issues in realizing the right of Indigenous peoples to health due to the lack of birth registration, citizenship, or legal status. This limits their access to essential healthcare services and inclusion in official health data collection [10]. For some countries, defining Indigenous identity is complex due to the region’s ethnic diversity and government efforts to integrate these groups into the broader national identity. This complexity is exacerbated by the presence of various laws and policies aimed at assimilating Indigenous peoples into mainstream society [11]. For instance, India’s government resists defining Tribal populations (referred to as “Scheduled Tribes” or “Adivasi”) as Indigenous because it deems it impractical after centuries of migration, absorption, and differentiation [11, 12]. This resistance is primarily driven by the aim of assimilation, as acknowledging Indigeneity could be perceived as supporting territorial separation from the Indian state [13]. The absence of clear definitions and limited policies for collecting Indigenous status data restricts the ability of cancer registries to accurately estimate cancer incidence in these countries.

Historical, political, and social influences on legislative definitions of Indigeneity may result in an under-estimation of Indigenous status in cancer registries. While some countries (e.g., Malaysia, the Philippines, Nepal, Myanmar, Taiwan, and Japan) have officially recognized the term “Indigenous peoples” to identify those with distinct cultural traditions and histories following international declarations (UNDRIP and ILO Convention 169) [14], definitions are disputed in other countries like China, India, and Bangladesh, which subsequently resist Indigenous recognition. In the spirit of the UN Sustainable Development Goal to leave no one behind [15], it is imperative that governments support cancer control in Indigenous populations through legislative requirements and increased societal recognition and representation in political decision-making.

Improving Point-of-Care Data Collection in Australia

The Australian Government’s definition of Indigeneity is based on three components: descent, self-identification, and community acceptance [16]. Operationally, the definition is typically based on self-identification. A Standard Indigenous Question was developed in 1996 by the Australian Bureau of Statistics to enable systematic collection of self-reported identification at the point of contact and routine recording of these data in a wide range of government collections [16]. The Australian Institute of Health and Welfare (AIHW) has developed training and education resources for health service staff to assist healthcare services to ask all patients about Indigenous identity [17]. This initiative has paralleled advances in health services information technologies, which enable the assertation, recording, and transfer of Indigenous identification information [18]. Additionally, best practice approaches to data linkage to enhance the completeness and consistency of Indigenous identification information in health datasets, including Australian cancer registries, have been established [19].

Hospital admission records are the primary source of Indigenous identification data for Australian cancer registries. The quality of Indigenous identification in public hospital admissions records was assessed in 2011–2012 by the AIHW [20]. This report estimated that 88% of Indigenous patients were correctly identified in these records. Correction factors were derived to adjust national statistics for Aboriginal and Torres Strait Islander people to account for incomplete and inaccurate records. In Queensland, cancer registry data are currently housed within the Queensland Cancer Alliance and are continually linked to multiple administrative datasets, which inform the Indigenous identification variable. Consequently, the rate of unknown Indigenous identification for Queenslanders with cancer has reduced from 5% in 2011 census [21] to 0.4% in 2021 [22].

Coding Race/Ethnicity Data in the Pacific Regional Central Cancer Registry

The Pacific Regional Central Cancer Registry (PRCCR) was established in 2005 and sits within the governance of the North American Association of Central Cancer Registries. The PRCCR includes numerous US-affiliated Pacific Islanders, including Guam, the Commonwealth of Northern Marianas, America Samoa, the Federated States of Micronesia, the Republic of Palau, and the Republic of Marshall Islands, and it works closely with the Hawaiʻi Tumor Registry. The coding of race data in the PRCCR was designed to align with the specifications of the US Surveillance, Epidemiology, and End Results (SEER) Cancer Registry [23], which uses categories created during the 2000 US census. Due to the lack of granularity, they do not meet the needs of Pacific Island Nations/Territories.

The PRCCR derives race from two key data sources, patient hospital records and death registrations/certificates, and if provided it is coded by the cancer registrars. The existing race variable includes the following categories relevant to the US-affiliated Pacific Islander nations/territories: Hawaiian, Micronesian not otherwise specified (NOS), Chamorro/Chamoru, Guamanian NOS, Polynesian NOS, Pacific Islander NOS, and “other.” To overcome the lack of granularity, a second “full” race variable has been added to the PRCCR to help identify patients’ specific racial identification.

A persistent challenge is streamlining the coding for cases that are shared with the PRCCR from other US registries, which include the SEER race variable but not the PRCCR “full” race variable. In this event, the “full” race variable is left blank (missing). The purpose of collecting the PRCCR “full” race variable is to enable an in-depth understanding of the demographics and distribution of cancer across racial groups in Pacific Islander Nations/Territories to inform local cancer control strategies. This level of data is not reported to the Centers for Disease Control and Prevention nor back to the SEER register.

Conclusion

Cancer registry data can and should be used by governments, non-government organizations, communities, and researchers to identify changes in cancer trends, investigate cancer etiology, evaluate the need for and effectiveness of policy or population-level programs, and measure and monitor inequities. Increasingly, cancer registries are being linked to other datasets to enable analyses to address complex questions about a population’s health [24, 25]. In turn, cancer trends and statistics play a crucial role in policy setting, resource allocation, and service delivery—and consequently, reduced cancer incidence, morbidity, and mortality.

The findings from the 2019 survey suggest that up to one-third of PBCRs in countries or regions with an Indigenous population are not collecting Indigenous identity information. More may not be reporting or enabling the reporting of Indigenous cancer statistics. This chapter sheds light on the significant challenges PBCRs face in collecting and reporting Indigenous identity information. The barriers, and therefore the solutions, vary across countries, highlighting the need for a global strategy that has local flexibility to tackle the issues that matter most.