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Original research
Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience
  1. Jodie Bailie1,2,
  2. Alison Frances Laycock1,
  3. Kathleen Parker Conte1,3,
  4. Veronica Matthews1,
  5. David Peiris2,4,
  6. Ross Stewart Bailie1,
  7. Seye Abimbola2,4,
  8. Megan Elizabeth Passey1,
  9. Frances Clare Cunningham5,
  10. Kerryn Harkin1,
  11. Roxanne Gwendalyn Bainbridge6
  1. 1University Centre for Rural Health, The University of Sydney, Lismore, New South Wales, Australia
  2. 2The School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  3. 3School of Public Health, DePaul University, Chicago, Illinois, USA
  4. 4The George Institute for Global Health, University of New South Wales, Sydney, New South Wales, Australia
  5. 5Menzies School of Health Research, Charles Darwin University, Brisbane, Queensland, Australia
  6. 6Centre for Indigenous Health Equity Research, Central Queensland University, Cairns, Queensland, Australia
  1. Correspondence to Jodie Bailie; jodie.bailie{at}sydney.edu.au

Abstract

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.

  • health services research
  • health systems
  • health systems evaluation
  • health policy
  • qualitative study
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/.

https://doi.org/10.1136/bmjgh-2020-003852

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    Footnotes

    • Handling editor Valery Ridde

    • Twitter @JodieBailie1, @AlisonLaycock2, @kpconte, @DrVMatthews, @davidpeiris, @RossBailie, @seyeabimbola, @CunninghamF_C, @DrRoxBainbridge

    • Contributors JB designed the study with guidance from RGB, AFL and KC. JB and AFL undertook interviews, and KH the document review. JB drafted the initial manuscript, with close support from RGB, AFL and KPC. All authors provided feedback on drafts of the manuscript, and read and approved the final manuscript. JB was the embedded developmental evaluator from January 2017. RSB was the principal investigator of the CRE-IQI.

    • Funding The National Health and Medical Research Council (www.nhmrc.gov.au) funded the Centre for Research Excellence in Integrated Quality Improvement (#1078927) and the Centre of Research Excellence in Strengthening Systems for Indigenous Healthcare Equity (#1170882). Jodie Bailie has been supported by a University of Sydney Postgraduate Award (#SC0649). In-kind support has been provided by a range of community-controlled and government agencies. Megan Passey is supported by a Career Development Fellowship from the NHMRC (GNT 1159601).

    • Competing interests The authors declare that this research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. SA is the Editor in Chief of BMJ Global Health, but was not involved in the evaluation or peer-review process of this article.

    • Patient consent for publication Not required.

    • Ethics approval The University of Sydney Human Research Ethics Committee (Project 2018/206) and the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research (Project 2018-3105).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on request. Research involving Aboriginal and Torres Strait Islander peoples is strictly governed in Australia by the Australian Code for the Responsible Conduct of Research and by Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders. Data requests addressing these criteria may be sent to the CRE-IQI Management Committee care of RSB (ross.bailie@sydney.edu.au).

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.