Bringing our voices into the research world: lessons from the Kanyini Vascular Collaboration

Ricky A Mentha, Joanne de Vries, Pamela R Simon, Barry N Fewquandie, John Brady and Suzanne Ingram
Med J Aust 2012; 197 (1): 55-56. || doi: 10.5694/mja12.10640
Published online: 2 July 2012

A group of Indigenous Research Fellows describe the lessons learnt from their involvement in Indigenous health research

We are a group of Indigenous Research Fellows (IRFs) involved in the Kanyini Qualitative Study (KQS), examining barriers and enablers to chronic disease care for Indigenous Australians. The KQS forms part of the Kanyini Vascular Collaboration (KVC), a health services research program established to reduce the burden and suffering of chronic disease (

The KQS was developed to explore five key issues:

The research team, comprising Indigenous and non-Indigenous researchers, was located across four geographically diverse Aboriginal medical service sites, supported by senior researchers at the Baker IDI Heart and Diabetes Institute in Alice Springs and the George Institute for Global Health in Sydney. The KQS methodology and design included a strong commitment to building research capacity among Indigenous people by engaging us (the IRFs) as key researchers, by providing us with training, and by including us at all stages as essential members of the team.

As IRFs who were largely new to research when we began this process 4 years ago, we reflect here on what we have learnt through participation, and hope this may help other researchers build better ways of engaging Indigenous people within the research process.

What we learnt
Our responsibilities within the research process

We collectively felt obligated to do justice to the time given by study participants, and carrying their personal stories was a huge burden of responsibility. This is seldom discussed by other researchers, but we had a strong sense of obligation. Many of the participants we interviewed were friends or family, sometimes placing us in very difficult positions as both insiders and outsiders. This issue has been discussed by other Indigenous researchers,1 but for us it blurred the lines between what our jobs were as researchers and, more importantly, what our responsibilities were as community and family members.

At commencement of this work, we had some concerns about how research with Indigenous people has been done in the past. As with many of our community members, we were worried about research being done to Indigenous people without their consent or apparent benefit to them. We were also concerned about Indigenous people being employed as the token “blackfellas” and the potential for community experiences to be interpreted by “whitefellas” who did not really understand our lives.

As the project progressed, we remained anxious about our ability to do justice to the stories with which people had entrusted us. We feared that, as Indigenous people working for major research institutes, we might interpret people’s experience as the whitefellas expected us to.

Coming into the study, we had hopes that this research would rapidly influence systemic and professional practice change but, clearly, research can take many years to translate into health care practice.2,3 In the meantime, feedback sessions and discussions with stakeholders will create a dialogue about Indigenous people’s perspectives on each of the five key issues of the study.

Challenges in the interview and coding process

We interviewed Indigenous community participants and personnel employed in both government-run and community-controlled health services delivering chronic disease care. Participants described what they thought to be proper and improper health care interactions and reflected on past negative and positive experiences.

We were able to create rapport and understanding with community participants, encouraging them to express their thoughts openly. Our role was essential to improving the connection between research and community. However, the interview process was not without challenges. Conducting face-to-face interviews was both a privilege and a burden. On the one hand, we were able to engage people to open up and divulge personal perspectives and experiences. On the other hand, we did not realise how challenging it could be for people to discuss their views on health care behaviour and the quality of the care they received.

We wanted to ensure all interview participants could talk honestly about their experiences in a safe space that did not identify them to their primary health care services. However, a number of pressures, some quite intangible, made such honest reflection difficult. Interviewing is a highly skilled activity, and interviewers need training and practice to do it well. From interview transcripts, we realised that a lack of interviewing experience had sometimes interfered with the participants expressing what they had to say, such as when the interviewer interrupted a participant’s response. Some interview participants struggled to articulate their story in the time allowed. Indigenous people like to have time to reflect and discuss with other family members what they might want to say. Further, Indigenous people are often not used to seeing a service as a system, and critiquing it as such, and, for some people, criticism can seem rude.

We were integrally involved in developing a coding system for organising the interview data. The coding took 15 months. Although this seems a long time, the collaborative aspect of the study required ongoing discussions among the KQS team. We felt a burden of responsibility towards the coding process, as it was here that our responsibility for holding people’s stories accurately was most at risk.

Provenance: Not commissioned; externally peer reviewed.

  • Ricky A Mentha1
  • Joanne de Vries2
  • Pamela R Simon3
  • Barry N Fewquandie2
  • John Brady4
  • Suzanne Ingram5

  • 1 Baker IDI Heart and Diabetes Institute, Alice Springs, NT.
  • 2 Wuchopperen Health Service, Cairns, QLD.
  • 3 Tharawal Aboriginal Corporation Aboriginal Medical Service, Sydney, NSW.
  • 4 Inala Indigenous Health Service, Brisbane, QLD.
  • 5 The George Institute for Global Health, Sydney, NSW.



We thank the rest of the KQS team: chief investigators Alex Brown and Alan Cass, and senior researchers Bernadette Rickards, Hueiming Lui, David Peiris and Samantha Togni. The team has been generously supported by Jeannie Devitt and Valmai McDonald. This work was funded by the National Health and Medical Research Council (402797).

Competing interests:

No relevant disclosures.

  • 1. Smith LT. Decolonizing methodologies: research and indigenous peoples. Dunedin: University of Otago Press, 1999.
  • 2. El-Jardali F, Lavis JN, Ataya N, Jamal D. Use of health systems and policy research evidence in the health policymaking in eastern Mediterranean countries: views and practices of researchers. Implement Sci 2012; 7: 2. doi: 10.1186/1748-5908-7-2.
  • 3. Straus SE, Brouwers M, Johnson D, et al. Core competencies in the science and practice of knowledge translation: description of a Canadian strategic training initiative. Implement Sci 2011; 6: 127. doi: 10.1186/1748-5908-6-127.
  • 4. Henderson R, Simmons DS, Bourke L, Muir J. Development of guidelines for non-Indigenous people undertaking research among the Indigenous population of north-east Victoria. Med J Aust 2002; 176: 482-485. <MJA full text>
  • 5. Aboriginal Health & Medical Research Council of New South Wales Ethics Committee. AH&MRC guidelines for research into Aboriginal health: key principles. Sydney: AH&MRC, 2009.


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