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Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience

INTRODUCTION: Indigenous communities worldwide are leading calls for all research involving Indigenous people to be underpinned by values and principles articulated by them. Many researchers are explicitly adopting these principles to guide what, where, how and when research is undertaken with Indig...

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Autores principales: Bailie, Jodie, Laycock, Alison Frances, Conte, Kathleen Parker, Matthews, Veronica, Peiris, David, Bailie, Ross Stewart, Abimbola, Seye, Passey, Megan Elizabeth, Cunningham, Frances Clare, Harkin, Kerryn, Bainbridge, Roxanne Gwendalyn
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7812086/
https://www.ncbi.nlm.nih.gov/pubmed/33441334
http://dx.doi.org/10.1136/bmjgh-2020-003852
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author Bailie, Jodie
Laycock, Alison Frances
Conte, Kathleen Parker
Matthews, Veronica
Peiris, David
Bailie, Ross Stewart
Abimbola, Seye
Passey, Megan Elizabeth
Cunningham, Frances Clare
Harkin, Kerryn
Bainbridge, Roxanne Gwendalyn
author_facet Bailie, Jodie
Laycock, Alison Frances
Conte, Kathleen Parker
Matthews, Veronica
Peiris, David
Bailie, Ross Stewart
Abimbola, Seye
Passey, Megan Elizabeth
Cunningham, Frances Clare
Harkin, Kerryn
Bainbridge, Roxanne Gwendalyn
author_sort Bailie, Jodie
collection PubMed
description INTRODUCTION: Indigenous communities worldwide are leading calls for all research involving Indigenous people to be underpinned by values and principles articulated by them. Many researchers are explicitly adopting these principles to guide what, where, how and when research is undertaken with Indigenous people. With critical reflection to support the implementation of such principles largely absent from published literature, this paper explores both the implementation of, and the outcomes from a set of guiding principles used in a large-scale Australian research collaboration to improve Indigenous health. METHODS: In this inductive qualitative study, we adopted a principles-focused evaluation approach. Based on interviews with 35 actors in the collaboration and a review of project documents, we generated themes that were then iteratively discussed, refined and categorised into (1) ‘strategies’—activities by which implementation of our guiding principles were recognised; (2) ‘outcomes’—results seen from implementing the principles and (3) ‘conditions’—aspects of the context that facilitated and constrained implementation of the principles. RESULTS: Respondents found it difficult to articulate how the guiding principles were actually implemented, and frequently referred to them as part of the fabric of the collaboration. They viewed the set of principles as mutually reinforcing, and as providing a rudder for navigating complexity and conflict. Implementation of the principles occurred through five strategies—honouring the principles; being dynamic and adaptable; sharing and dispersing leadership; collaborating purposefully and adopting a culture of mutual learning. Outcomes included increased Indigenous leadership and participation; the ability to attract principled and values-driven researchers and stakeholders, and the development of trusting and respectful relationships. The conditions that facilitated the implementation of the principles were collaborating over time; an increasing number of Indigenous researchers and taking an ‘innovation platform’ approach. CONCLUSION: Our findings show that principles guiding collaborations are valuable in providing a focus, direction and a way of working together when they are collaboratively developed, hold genuine meaning for all members and are implemented within a culture of continuous critical reflection, learning and adaptation, with ongoing reinterpretation of the principles over time.
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spelling pubmed-78120862021-01-25 Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience Bailie, Jodie Laycock, Alison Frances Conte, Kathleen Parker Matthews, Veronica Peiris, David Bailie, Ross Stewart Abimbola, Seye Passey, Megan Elizabeth Cunningham, Frances Clare Harkin, Kerryn Bainbridge, Roxanne Gwendalyn BMJ Glob Health Original Research INTRODUCTION: Indigenous communities worldwide are leading calls for all research involving Indigenous people to be underpinned by values and principles articulated by them. Many researchers are explicitly adopting these principles to guide what, where, how and when research is undertaken with Indigenous people. With critical reflection to support the implementation of such principles largely absent from published literature, this paper explores both the implementation of, and the outcomes from a set of guiding principles used in a large-scale Australian research collaboration to improve Indigenous health. METHODS: In this inductive qualitative study, we adopted a principles-focused evaluation approach. Based on interviews with 35 actors in the collaboration and a review of project documents, we generated themes that were then iteratively discussed, refined and categorised into (1) ‘strategies’—activities by which implementation of our guiding principles were recognised; (2) ‘outcomes’—results seen from implementing the principles and (3) ‘conditions’—aspects of the context that facilitated and constrained implementation of the principles. RESULTS: Respondents found it difficult to articulate how the guiding principles were actually implemented, and frequently referred to them as part of the fabric of the collaboration. They viewed the set of principles as mutually reinforcing, and as providing a rudder for navigating complexity and conflict. Implementation of the principles occurred through five strategies—honouring the principles; being dynamic and adaptable; sharing and dispersing leadership; collaborating purposefully and adopting a culture of mutual learning. Outcomes included increased Indigenous leadership and participation; the ability to attract principled and values-driven researchers and stakeholders, and the development of trusting and respectful relationships. The conditions that facilitated the implementation of the principles were collaborating over time; an increasing number of Indigenous researchers and taking an ‘innovation platform’ approach. CONCLUSION: Our findings show that principles guiding collaborations are valuable in providing a focus, direction and a way of working together when they are collaboratively developed, hold genuine meaning for all members and are implemented within a culture of continuous critical reflection, learning and adaptation, with ongoing reinterpretation of the principles over time. BMJ Publishing Group 2021-01-13 /pmc/articles/PMC7812086/ /pubmed/33441334 http://dx.doi.org/10.1136/bmjgh-2020-003852 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Original Research
Bailie, Jodie
Laycock, Alison Frances
Conte, Kathleen Parker
Matthews, Veronica
Peiris, David
Bailie, Ross Stewart
Abimbola, Seye
Passey, Megan Elizabeth
Cunningham, Frances Clare
Harkin, Kerryn
Bainbridge, Roxanne Gwendalyn
Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
title Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
title_full Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
title_fullStr Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
title_full_unstemmed Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
title_short Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
title_sort principles guiding ethical research in a collaboration to strengthen indigenous primary healthcare in australia: learning from experience
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7812086/
https://www.ncbi.nlm.nih.gov/pubmed/33441334
http://dx.doi.org/10.1136/bmjgh-2020-003852
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