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Principles Relevant to Health Research among Indigenous Communities

Research within Indigenous communities has been criticised for lacking community engagement, for being exploitative, and for poorly explaining the processes of research. To address these concerns, and to ensure ‘best practice’, Jamieson, et al. (2012) recently published a summary of principles outli...

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Detalles Bibliográficos
Autores principales: O’Donahoo, Francis J., Ross, Kirstin E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4454968/
https://www.ncbi.nlm.nih.gov/pubmed/25996884
http://dx.doi.org/10.3390/ijerph120505304
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author O’Donahoo, Francis J.
Ross, Kirstin E.
author_facet O’Donahoo, Francis J.
Ross, Kirstin E.
author_sort O’Donahoo, Francis J.
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description Research within Indigenous communities has been criticised for lacking community engagement, for being exploitative, and for poorly explaining the processes of research. To address these concerns, and to ensure ‘best practice’, Jamieson, et al. (2012) recently published a summary of principles outlined by the NHMRC (2003) in “one short, accessible document”. Here we expand on Jamieson et al.’s paper, which while commendable, lacks emphasis on the contribution that communities themselves can make to the research process and how culturally appropriate engagement, can allow this contribution to be assured, specifically with respect to engagement with remote communities. Engagement started before the research proposal is put forward, and continued after the research is completed, has integrity. We emphasise the value of narratives, of understanding cultural and customary behaviours and leadership, the importance of cultural legitimacy, and of the need for time, not just to allow for delays, but to ensure genuine participatory engagement from all members of the community. We also challenge researchers to consider the outcomes of their research, on the basis that increasing clinical evidence does not always result in better outcomes for the community involved.
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spelling pubmed-44549682015-06-04 Principles Relevant to Health Research among Indigenous Communities O’Donahoo, Francis J. Ross, Kirstin E. Int J Environ Res Public Health Article Research within Indigenous communities has been criticised for lacking community engagement, for being exploitative, and for poorly explaining the processes of research. To address these concerns, and to ensure ‘best practice’, Jamieson, et al. (2012) recently published a summary of principles outlined by the NHMRC (2003) in “one short, accessible document”. Here we expand on Jamieson et al.’s paper, which while commendable, lacks emphasis on the contribution that communities themselves can make to the research process and how culturally appropriate engagement, can allow this contribution to be assured, specifically with respect to engagement with remote communities. Engagement started before the research proposal is put forward, and continued after the research is completed, has integrity. We emphasise the value of narratives, of understanding cultural and customary behaviours and leadership, the importance of cultural legitimacy, and of the need for time, not just to allow for delays, but to ensure genuine participatory engagement from all members of the community. We also challenge researchers to consider the outcomes of their research, on the basis that increasing clinical evidence does not always result in better outcomes for the community involved. MDPI 2015-05-19 2015-05 /pmc/articles/PMC4454968/ /pubmed/25996884 http://dx.doi.org/10.3390/ijerph120505304 Text en © 2015 by the authors; licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
O’Donahoo, Francis J.
Ross, Kirstin E.
Principles Relevant to Health Research among Indigenous Communities
title Principles Relevant to Health Research among Indigenous Communities
title_full Principles Relevant to Health Research among Indigenous Communities
title_fullStr Principles Relevant to Health Research among Indigenous Communities
title_full_unstemmed Principles Relevant to Health Research among Indigenous Communities
title_short Principles Relevant to Health Research among Indigenous Communities
title_sort principles relevant to health research among indigenous communities
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4454968/
https://www.ncbi.nlm.nih.gov/pubmed/25996884
http://dx.doi.org/10.3390/ijerph120505304
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