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. 2020 Feb:6:133-142.
doi: 10.1200/JGO.19.00119.

Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World

Abbey Diaz  1 , Isabelle Soerjomataram  2 , Suzanne Moore  1 , Lisa J Whop  1 , Freddie Bray  2 , Hana Hoberg  1 , Gail Garvey  1
Affiliations

Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World

Abbey Diaz et al. JCO Glob Oncol. 2020 Feb.

Abstract

Purpose: Worldwide, Indigenous people often have disproportionally worse health and lower life expectancy than their non-Indigenous counterparts. Despite the impact of cancer on life expectancy, little is known about the burden of cancer for Indigenous people primarily because of the paucity of data. We investigated the collection and reporting of Indigenous status information among a global sample of population-based cancer registries (PBCRs).

Participants and methods: An online survey was e-mailed to eligible registries using set inclusion criteria. Respondents were asked questions on the collection, reporting, and quality assessment of Indigenous status in their registers.

Results: Eighty-three PBCRs from 25 countries were included. Of these, 66% reported that their registry collected Indigenous status data, although the quality of this variable had been assessed in less than half in terms of completeness (38%) and accuracy (47%). Two thirds of PBCRs who collected Indigenous status data (67%), from nine of 25 countries responded that cancer statistics for Indigenous people were reported using registry data. Key barriers to the collection of Indigenous status information included the lack of data collection at the point of care (79%), lack of transfer of Indigenous status to the cancer registry (46%), inadequate information systems (43%), and legislative limitations (32%). Important variations existed among world regions, although the lack of Indigenous status data collection at the point of care was commonly reported across all regions.

Conclusion: High-quality data collection is lacking for Indigenous peoples in many countries. To ensure the design and implementation of cancer control activities required to reduce disparities for Indigenous populations, health information systems, including cancer registries, need to be strengthened, and this must be done in dialogue with Indigenous leaders.

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Conflict of interest statement

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jgo/site/misc/authors.html.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

No potential conflicts of interest were reported.

Figures

FIG 1
FIG 1
Eligibility and recruitment process. PBCR, population-based cancer registry.
See this image and copyright information in PMC

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