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

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...

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Autores principales: Diaz, Abbey, Soerjomataram, Isabelle, Moore, Suzanne, Whop, Lisa J., Bray, Freddie, Hoberg, Hana, Garvey, Gail
Formato: Online Artículo Texto
Lenguaje:English
Publicado: American Society of Clinical Oncology 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6998012/
https://www.ncbi.nlm.nih.gov/pubmed/32031453
http://dx.doi.org/10.1200/JGO.19.00119
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author Diaz, Abbey
Soerjomataram, Isabelle
Moore, Suzanne
Whop, Lisa J.
Bray, Freddie
Hoberg, Hana
Garvey, Gail
author_facet Diaz, Abbey
Soerjomataram, Isabelle
Moore, Suzanne
Whop, Lisa J.
Bray, Freddie
Hoberg, Hana
Garvey, Gail
author_sort Diaz, Abbey
collection PubMed
description 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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spelling pubmed-69980122020-02-11 Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World Diaz, Abbey Soerjomataram, Isabelle Moore, Suzanne Whop, Lisa J. Bray, Freddie Hoberg, Hana Garvey, Gail JCO Glob Oncol Original Reports 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. American Society of Clinical Oncology 2020-01-13 /pmc/articles/PMC6998012/ /pubmed/32031453 http://dx.doi.org/10.1200/JGO.19.00119 Text en © 2020 by American Society of Clinical Oncology https://creativecommons.org/licenses/by-nc-nd/4.0/ Creative Commons Attribution Non-Commercial No Derivatives 4.0 License: https://creativecommons.org/licenses/by-nc-nd/4.0/
spellingShingle Original Reports
Diaz, Abbey
Soerjomataram, Isabelle
Moore, Suzanne
Whop, Lisa J.
Bray, Freddie
Hoberg, Hana
Garvey, Gail
Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World
title Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World
title_full Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World
title_fullStr Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World
title_full_unstemmed Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World
title_short Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World
title_sort collection and reporting of indigenous status information in cancer registries around the world
topic Original Reports
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6998012/
https://www.ncbi.nlm.nih.gov/pubmed/32031453
http://dx.doi.org/10.1200/JGO.19.00119
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