Connect
MJA
MJA

Ten principles relevant to health research among Indigenous Australian populations

Lisa M Jamieson, Yin C Paradies, Sandra Eades, Alwin Chong, Louise Maple-Brown, Peter Morris, Ross Bailie, Alan Cass, Kaye Roberts-Thomson and Alex Brown
Med J Aust 2012; 197 (1): 16-18. || doi: 10.5694/mja11.11642
Published online: 2 July 2012

Working with Indigenous communities towards research that is relevant, effective and culturally respectful

Essential principles
1. Addressing a priority health issue as determined by the community

No group is more aware of the health inequalities between Indigenous and non-Indigenous Australians than Indigenous Australians themselves. Researchers need to work in close partnership with the community so that their own objectives and ideas do not mask the community’s own priority areas.3 This will require both parties to learn how to work together to manage potentially conflicting agendas, including differences in priority perceptions, community politics and interpretation of findings. The communities and participants need to be engaged as equal partners in all phases of the research process, with a flexible agenda responsive to broader environmental demands.

5. Respecting communities’ past and present experience of research

On one level, the history of Australia’s Indigenous populations — involving forced policies of assimilation, imposed removal of children, profound and sustained social disadvantage, and dislocation from mainstream life — needs to be recognised.11 In the context of research, Indigenous Australians’ past experience of involvement in research12 needs to be understood when conducting community consultation, in order to foster support and trust. Researchers also have to be ready for communities to say “no” at any point during a study. Finally, communities have a right to expect that if they agree to be involved in research, it will be of sufficiently high quality and rigour to generate meaningful results and change health outcomes.

Desirable principles
6. Recognising the diversity of Indigenous Australian populations

Although Australia’s Indigenous population represents a small proportion of the total population (2.6% in the 2006 Census13), there is great heterogeneity among the many Indigenous groups.14 This diversity is not such an issue when studies are based within a localised geographic area (although even in small geographic areas the differences may be greater than appreciated15), but needs to be carefully planned for when implementing research (such as national population-level surveys) that may include many different language and culturally distinct groups.15

8. Preparing for Indigenous leadership turnover

Leadership turnover among key Indigenous stakeholder groups can be high.16 This occurs at both high-end governance and grassroot community levels. There is enormous, often unreasonable, pressure placed on many Indigenous Australians in leadership, both from within their own communities and from mainstream structures. Non-Indigenous researchers would do well to anticipate this in advance rather than rely on a small number of key Indigenous leaders to promote and advocate their study. Indigenous advisory committees are invaluable in offering further advice on this issue, as are local Aboriginal ethics committees and community-controlled health organisations. Maintaining close and trusting relationships with a number of local Indigenous leaders (and recognising that these may take years to establish) may help researchers prepare for such occurrences.

9. Supporting community ownership

In the past, the rights, interests and concerns of Indigenous participants were frequently ignored by non-Indigenous researchers.17 We now know that the sustainability of research projects is achieved only when there has been substantive community input and ownership.18 From the outset, research projects need to be directed by the relevant Indigenous communities, by forming Indigenous advisory committees where possible, and by researchers constantly reviewing their study goals with these committees and Indigenous staff. While this is ideal, membership of advisory or steering committees can place a substantial burden and expectation on the relatively small number of people who have the time, interest and skills to sit on them. If it is not possible to form such a committee, the role of Indigenous staff and Indigenous community members becomes even more critical.


Provenance: Not commissioned; externally peer reviewed.

  • Lisa M Jamieson1
  • Yin C Paradies2
  • Sandra Eades3
  • Alwin Chong4
  • Louise Maple-Brown4
  • Peter Morris4
  • Ross Bailie4
  • Alan Cass5
  • Kaye Roberts-Thomson1
  • Alex Brown6

  • 1 University of Adelaide, Adelaide, SA.
  • 2 2 University of Melbourne, Melbourne, VIC.
  • 3 Baker IDI Heart and Diabetes Institute, Melbourne, VIC.
  • 4 Menzies School of Health Research, Darwin, NT.
  • 5 George Institute, Sydney, NSW.
  • 6 Baker IDI Heart and Diabetes Institute, Alice Springs, NT.



Acknowledgements: 

We gratefully acknowledge Sir Michael Marmot, University College London, who provided helpful comments on an earlier draft of this manuscript. Lisa Jamieson is supported by an NHMRC Career Development Award (605837), Louise Maple-Brown by an NHMRC Early Career Fellowship in Aboriginal and Torres Strait Islander Health Research (605837), Yin Paradies by a University of Melbourne McKenzie Fellowship, Ross Bailie by an Australian Research Council Future Fellowship (FT100100087), Alwin Chong by an NHMRC Senior Research Fellowship (457101) and Alex Brown by a Heart Foundation of Australia Fellowship.

Competing interests:

No relevant disclosures.

  • 1. Marmot M. Social determinants and the health of Indigenous Australians. Med J Aust 2011; 194: 512-513. <MJA full text>
  • 2. National Health and Medical Research Council. Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Canberra: Commonwealth of Australia, 2003. http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e52.pdf (accessed Jun 2012).
  • 3. Bailey J, Veitch C, Crossland L, Preston R. Developing research capacity building for Aboriginal and Torres Strait Islander health workers in health service settings. Rural Remote Health 2006; 6: 556.
  • 4. Hughes J, Nickels M, Sharma S, et al. Implementing the eGFR study in a remote site: a case study. Aboriginal Islander Health Worker J 2010; 34: 6-8.
  • 5. Sibthorpe BM, Bailie RS, Brady MA, et al. The demise of a planned randomised controlled trial in an urban Aboriginal medical service. Med J Aust 2002; 176: 273-276.
  • 6. Riedy C. A dental intervention with an Alaskan Native population: lessons learned. Int Dent J 2010; 60: 241-244.
  • 7. Patten CA, Windsor RA, Renner CC, et al. Feasibility of a tobacco cessation intervention for pregnant Alaska Native women. Nicotine Tob Res 2010; 12: 79-87.
  • 8. Chino M, Debruyn L. Building true capacity: indigenous models for indigenous communities. Am J Public Health 2006; 96: 596-599.
  • 9. Gittelsohn J, Davis SM, Steckler A, et al. Pathways: lessons learned and future directions for school-based interventions among American Indians. Prev Med 2003; 37 Suppl 1: S107-S112.
  • 10. Gittelsohn J, Rowan M. Preventing diabetes and obesity in American Indian communities: the potential of environmental interventions. Am J Clin Nutr 2011; 93: 1179S-1183S.
  • 11. Altman J. The economic and social context of Indigenous health. In: Thomson N, editor. The health of Indigenous Australians. Melbourne: Oxford University Press, 2003: 25-43.
  • 12. Harvey PW. Science, research and social change in Indigenous health — evolving ways of knowing. Aust Health Rev 2009; 33: 628-635.
  • 13. Australian Bureau of Statistics. Population distribution, Aboriginal and Torres Strait Islander Australians, 2006. Canberra: ABS, 2007. (ABS Cat. No. 4705.0.)
  • 14. McGregor R. Imagined destinies: Aboriginal Australians and the doomed race theory, 1880–1939. Melbourne: Melbourne University Press, 1997.
  • 15. Nelson A, Abbott R, Macdonald D. Indigenous Australians and physical activity: using a social-ecological model to review the literature. Health Educ Res 2010; 25: 498-509.
  • 16. Panaretto K, Coutts J, Johnson L, et al. Evaluating performance of and organisational capacity to deliver brief interventions in Aboriginal and Torres Strait Islander medical services. Aust N Z J Public Health 2010; 34: 38-44.
  • 17. Couzos S, Lea T, Murray R, Culbong M. “We are not just participants — we are in charge”: the NACCHO ear trial and the process for Aboriginal community-controlled health research. Ethn Health 2005; 10: 91-111.
  • 18. Baeza JI, Lewis JM. Indigenous health organizations in Australia: connections and capacity. Int J Health Serv 2010; 40: 719-742.
  • 19. Smith LJ. How ethical is ethical research? Recruiting marginalized, vulnerable groups into health services research. J Adv Nurs 2008; 62: 248-257.
  • 20. Flicker S, Worthington CA. Public health research involving aboriginal peoples: research ethics board stakeholders’ reflections on ethics principles and research processes. Can J Public Health 2012; 103: 19-22.
  • 21. Holland S, Hope T. The ethics of attaching research conditions to access to new health technologies. J Med Ethics 2012. In press. doi:10.1136/medethics-2011-100294.

Author

remove_circle_outline Delete Author
add_circle_outline Add Author

Comment
Do you have any competing interests to declare? *

I/we agree to assign copyright to the Medical Journal of Australia and agree to the Conditions of publication *
I/we agree to the Terms of use of the Medical Journal of Australia *
Email me when people comment on this article

Online responses are no longer available. Please refer to our instructions for authors page for more information.