Collection and reporting of indigenous status information in cancer registries around the world

Abbey Diaz*, Isabelle Soerjomataram, Suzanne Moore, Lisa J. Whop, Freddie Bray, Hana Hoberg, Gail Garvey

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

11 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)133-142
Number of pages10
JournalJournal of global oncology
Volume2020
Issue number6
DOIs
Publication statusPublished - 2020
Externally publishedYes

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