Connect
MJA
MJA

Navigating the process of developing a research project in Aboriginal health

Anne P F Wand and Sandra J Eades
Med J Aust 2008; 188 (10): 584-587. || doi: 10.5694/j.1326-5377.2008.tb01796.x
Published online: 19 May 2008

Developing a health research project requires gathering information, planning, consultation and consideration of ethical issues. In Aboriginal health research, there is a legacy of mistrust of researchers, who have often made false assumptions and misunderstood the values and practices of Aboriginal and Torres Strait Islander cultures by approaching them through their own cultural lens.1 There are ongoing concerns from Indigenous peoples that communication by researchers is poor, consultation is inadequate, values are violated by inadvertent cross-cultural insensitivity, and the research often fails to benefit the community.1

The important processes of developing a project that will benefit Aboriginal and Torres Strait Islander peoples, consulting broadly with Aboriginal communities, and comprehensively considering ethical issues must be navigated by researchers. Non-Indigenous researchers may be unsure of how to address these concerns, and may even be deterred from embarking on research in Aboriginal health. This is unfortunate, and may contribute to ongoing concerns about trust and the loss of opportunities to develop worthwhile collaborative relationships between researchers and Aboriginal and Torres Strait Islander peoples.

Here, we present a suggested broad guide for approaching project development and ethics approval in research with Aboriginal and Torres Strait Islander peoples. This is enhanced by the personal experience of one of us (A W) in developing a research project in Aboriginal mental health; an outline of some of the processes undertaken for this project is given in Box 1.

Developing the project
Community consultation

There has been a paradigm shift in Indigenous health research over the past 50 years, from researchers objectifying, to consulting, and, more recently, collaborating with Indigenous peoples.6 The focus is now on partnerships and Indigenous-directed research.4 In practice, consultation and negotiation with Aboriginal communities are continual, and should achieve mutual understanding about the proposed research.7 The community should be fully informed about the aims, methods, implications and potential outcomes of a research project, so that they can decide whether to accept or oppose it.7

Identifying who represents a particular community may be complex (Box 1).8 In some areas, this role may not belong to an Aboriginal community-controlled health service, but to a community council or other authority.1 For larger studies, there are also state-based and national associations of Aboriginal community-controlled health services.

There are multiple national1,5,7,8-12 and state3,13,14 guidelines on community consultation in Indigenous health research. The National Strategic Framework recommends an approach that emphasises partnership and collaboration, and Aboriginal and Torres Strait Islander ownership and control as key components underlying successful and ethical research.5

The structure and procedures guiding community engagement and participation vary. Researchers should ideally consult with people experienced in Aboriginal research on how to approach community consultation, or seek advice from a senior member of the Aboriginal community organisation. As such services are often under-resourced, it is important to succinctly inform the service directors in writing about the project and to allow sufficient time for a response.8 Researchers should be prepared to meet with the service directors to further discuss their background and the project’s aims, ethical issues, implications and potential benefits to the community. How the project fits with community priorities for research, opportunities for involvement of Aboriginal peoples in data gathering and analysis, and how results will be reported back to the community must be considered. It is not just the principles of transparency and respect inherent in such meetings that are important, but also forming partnerships with Aboriginal people, which greatly enhances the quality and validity of the research.

For projects directly involving a hospital or other general health facility, it is worthwhile meeting with the facility’s Aboriginal health workers, liaison officers, cultural workers and managers to introduce the research team and the project, discuss ideas and seek feedback (Box 1). In regional and rural areas, the process of collaboration and consultation may be less clear. A useful model has been described for negotiation between an Aboriginal community and researchers, using regular meetings of a community reference group comprising members of both parties.2

Obtaining ethics approval
Helpful resources

Researchers should be familiar with the resources listed in Box 3. Most Aboriginal ethics applications have common elements, which are captured by the NHMRC National statement on ethical conduct in human research:9

The AIATSIS guidelines emphasise ongoing consultation and negotiation.7 It should be noted that the National Aboriginal Community Controlled Health Organisation, the peak representative body for Aboriginal peoples, does not endorse the most recent NHMRC guidelines but recommends following the 1991 NHMRC guidelines12 and those of the Aboriginal Health and Medical Research Council of New South Wales (AH&MRC).13,16

People are arguably the most valuable resource. Presenting a draft of the ethics application to people experienced in Aboriginal research and ethical issues for feedback before submission can streamline the process and provide the researcher with additional guidance in conducting culturally aware research (Box 1).

Disseminating the results
Conclusion

Aboriginal health research can be a rewarding field, with great scope to improve services and outcomes for Aboriginal peoples. Adequate preparation and planning, broad consultation and approaching research in partnership and collaboration with Aboriginal peoples and community-controlled organisations can ensure that research is feasible, ethical, culturally sensitive and beneficial.

1 Personal experience with the processes of developing a research project in Aboriginal mental health

The following outlines the experience of one of us (A W) in developing a research project in Aboriginal mental health for the award of Master of Psychiatry.

The research question

Over a year before starting the project, A W met with health workers at the local community-controlled Aboriginal Medical Service (AMS) and hospital where the research was to take place. She presented some initial ideas from her knowledge of the literature for discussion and comment.

Observations, recommendations and identified priority areas for research made by these key Aboriginal informants were used to develop the hypotheses and methods of the project.

Community consultation

Guidelines on community consultation in Indigenous health research were applied by first identifying who represented the Aboriginal community in which the study would take place in terms of its community interests about health research.

As the study involved analysis of hospital medical records rather than direct contact with participants, three Aboriginal community-controlled health services in the area (whose clients were likely to overlap with the study sample) and Aboriginal health workers within the hospital where files were to be accessed were approached.

This lengthy process involved telephone and formal correspondence with AMS executives, group and individual meetings with health workers at the AMS and hospital, and communicating with Aboriginal hospital managers. Other key informants were often identified at these meetings and subsequently approached.

A W’s supervisor, S E, an experienced Aboriginal researcher, facilitated introductions to key Aboriginal health workers, managers and community organisations.

Obtaining ethics approval

Ethics approval for the project was sought from and granted by the ethics committees of the Aboriginal Health and Medical Research Council of New South Wales (AH&MRC), Sydney South West Area Health Service, and the NSW Institute of Psychiatry.

There was an ongoing dialogue with the AH&MRC Ethics Committee, and it took several months for the project to be approved. This dialogue included thoroughly describing the proposed process of consultation with the Aboriginal community in all phases of the project and describing how the cultural expertise of Aboriginal peoples would be sought by the researchers and used to analyse the data obtained.

A W was fortunate to have an Aboriginal mentor, who had clinical expertise in mental health and had been a member of the AH&MRC Ethics Committee. She discussed the proposal with A W on a number of occasions, proofread drafts of the ethics applications and made recommendations on cultural issues to be considered.

Received 2 February 2008, accepted 6 April 2008

  • Anne P F Wand1,2
  • Sandra J Eades3

  • 1 NSW Institute of Psychiatry, Sydney, NSW.
  • 2 Department of Consultation–Liaison Psychiatry, Royal Prince Alfred Hospital, Sydney, NSW.
  • 3 The Sax Institute, Sydney, NSW.



Acknowledgements: 

We thank Ms Robyn Shields, who provided mentorship and practical advice throughout the entire process described here; members of the AH&MRC Ethics Committee, Dr Melissa Corr and Professor Ernest Hunter for their comments on the manuscript; and all the Aboriginal mental and general health clinicians who collaborated with us in developing the study on which this article is based. Anne Wand was supported by a NSW Institute of Psychiatry Research Fellowship.

Competing interests:

None identified.

  • 1. National Health and Medical Research Council. Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander health research. Canberra: NHMRC, 2003.
  • 2. Eades SJ, Read AW, Bibbulung Gnarneep Team. The Bibbulung Gnarneep Project: practical implementation of guidelines on ethics in Indigenous health research. Med J Aust 1999; 170: 433-436.
  • 3. New South Wales Health. NSW Aboriginal health information guidelines. Sydney: NSW Department of Health, 1998.
  • 4. Anderson I, Griew R, McAullay D. Ethics guidelines, health research and Indigenous Australians. N Z Bioeth J 2003; 4: 20-29.
  • 5. Social Health Reference Group for National Aboriginal and Torres Strait Islander Health Council and National Mental Health Working Group. National strategic framework for Aboriginal and Torres Strait Islander peoples’ mental health and social and emotional well being 2004–2009. Canberra: Department of Health and Ageing, 2004.
  • 6. Brown J, Hunter E, Whiteside M. Talking back: the changing nature of Indigenous health research feedback. Health Promot J Austr 2002; 13(2): 34-39.
  • 7. Australian Institute of Aboriginal and Torres Strait Islander Studies. Guidelines for ethical research in Indigenous studies. Canberra: AIATSIS, 2000. http://www.aiatsis.gov.au/research_program/publications (accessed Dec 2007).
  • 8. Dunbar T, Scrimgeour M. Ethics in Indigenous research — connecting with community. J Bioeth Inq 2006; 3: 179-185.
  • 9. National Health and Medical Research Council. National statement on ethical conduct in human research. Canberra: NHMRC, 2007.
  • 10. Coalition for Research to Improve Aboriginal Health. CRIAH tools for collaboration. http://www.saxinstitute.org.au/researchassetsprograms/ CRIAHToolsforCollaboration.cfm?objid=706 (accessed Feb 2008).
  • 11. National Health and Medical Research Council. Keeping research on track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics. Canberra: NHMRC, 2005.
  • 12. National Health and Medical Research Council. Ethical guidelines in Aboriginal and Torres Strait Islander research. Canberra: NHMRC, 1991.
  • 13. Aboriginal Health and Medical Research Council of NSW. Guidelines for research into Aboriginal health: AH&MRC Ethics Committee’s submissions to the NHMRC. AH&MRC monograph series. Vol. I. No. II. Sydney: AH&MRC, 1999.
  • 14. Queensland Department of Aboriginal and Torres Strait Islander Policy and Development. Communicating across cultures. Protocols for consultation and negotiation with Aboriginal people. Brisbane: Queensland Government, 1999. http://www.datsip.qld.gov.au/resources/cultures.cfm (accessed Apr 2008).
  • 15. Swan P, Raphael B. Ways forward: national Aboriginal and Torres Strait Islander mental health policy national consultancy report. Canberra: Commonwealth of Australia, 1995.
  • 16. National Aboriginal Community Controlled Health Organisation. Ethical research guidelines. http://www.naccho.org.au/activities/ethical.html (accessed Apr 2008).
  • 17. New South Wales Health. Policy directive: Aboriginal and Torres Strait Islander peoples — preferred terminology to be used. Document no. PD2005_319. Sydney: NSW Health, 2005.
  • 18. Haswell-Elkins M, Sebasio T, Hunter E, Mar M. Challenges of measuring the mental health of Indigenous Australians: honouring ethical expectations and driving greater accuracy. Australas Psychiatry 2007; 15 Suppl 1: S29-S33.

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.