Aboriginal health research in the remote Kimberley: an exploration of perceptions, attitudes and concerns of stakeholders

For decades Aboriginal and Torres Strait Islander peoples have argued for research reform claiming that the methods used and results obtained often just reflect the exploitative history of colonialism and racism in Australia [1]-[3]. The introduction of ethical guidelines in the 1990s in Australia went some way towards improving ethical conduct in research but many believe they do not challenge, and hence preserve, the entrenched `western’ approach to identifying, funding, conducting and controlling health research [2],[4].

Historically, health research involving Indigenous peoples has focused on describing the nature and extent of the health problems they face [5],[6] and has treated Indigenous peoples as subjects, rather than participants [7],[8]. While descriptive research is important for epidemiological surveillance, it does not contribute evidence to expedite positive change or lead to improved health outcomes for Indigenous peoples [6]. Such research is often researcher-driven, rather than community-driven, and therefore does not necessarily address local priorities [9].

The Lowitja Institute is Australia’s only Aboriginal and Torres Strait Islander controlled health research organisation and is guided by the principles of the Indigenous Research Reform Agenda [1],[10]. It has developed a research philosophy called the Facilitated Development Approach that identifies research priorities, works with communities to establish research considered desirable and commissions research in partnership with the communities concerned. However much of Aboriginal and Torres Strait Islander health research continues to be based on national research funding (e.g. National Health and Medical Research Council (NHMRC)), which may not reflect local research priorities.

While many Indigenous scholars have written about decolonising research and advocated for Indigenous peoples to control the research agenda, most of this discourse is theoretical [8],[11]-[13]. There are few reports on what actually happens `on-the-ground’ in research. What has been published includes case studies of individual projects from the point of view of the external researcher, local Indigenous community and/or health service involved in the research [7],[14]-[18]. Reviews of research ethics committees have focused on how long it takes for approval to be granted, review of letters sent by committees to researchers and case studies of individual projects [19]-[23].

The remote Kimberley region in the north of Western Australia (WA) covers 423,517 square kilometres, greater than three times the size of England. The state capital, Perth, is over 1600 km away. According to the Australian Bureau of Statistics the total population in 2011 was 34,793, including an Aboriginal population of 13,919 [24]. While Aboriginal people are socioeconomically disadvantaged everywhere in Australia [25], remote Aboriginal people, including most residents of the Kimberley are in the lowest socioeconomic quartile of Aboriginal people [25],[26], the most disadvantaged group within the most disadvantaged population in Australia. The health status of Aboriginal people from the Kimberley region continues to lag behind the non-Indigenous population, reflecting the national trend [27],[28].

Historically, within the Kimberley region, a large proportion of health research has been developed and carried out by non-Indigenous researchers based outside the region (external researchers) often using approaches that do not reflect Aboriginal perspectives [5]. As a result Kimberley Aboriginal people continue to regard research, particularly research originating outside their communities, as often being exploitative [29].

Most health services in the Kimberley recognise the valuable role research can have in improving health care and health outcomes in the region, and useful research has been carried out [17],[30]-[40]. However, anecdotal reports suggest that many Kimberley health service personnel and Aboriginal communities feel overburdened by health research and perceive little apparent benefit from it. In late 2006 in response to internal pressure within the region, particularly from Aboriginal people, a local research review panel was formed to improve research processes and encourage appropriate research: The Kimberley Aboriginal Health Planning Forum (KAHPF) Research Subcommittee (hereafter, the Subcommittee) [41].

As the number of applications to the Subcommittee increased concerns were raised by Kimberley organisations about the burden of research, and by researchers about the processes to get approval for their projects. The Subcommittee reported this to KAHPF and proposed to review its own activities. Here we describe the major perceptions, attitudes and concerns of local stakeholders connected to the Subcommittee across the Kimberley region and juxtapose them with external stakeholders’ perspectives on the issues they faced conducting research in the Kimberley. The aim of this paper is to give a local perspective and practical examples of how Indigenous communities and their health services expect researchers to approach Indigenous research.

From January 2007 to 30 June 2013, 95 proposed research and evaluation projects were submitted to the Subcommittee (see Figure 1). Discussions about the submitted projects involved 22 local stakeholders (5 Aboriginal stakeholders) from 12 different Kimberley organisations (6 Aboriginal organisations). There was an average of 4.4 responses (52% of available local stakeholders) per project. There was considerable consensus in perceptions of health research in the region among local stakeholders. Of the projects submitted to the Subcommittee 57 (60%) were driven by external researchers and 45 (79%) of these projects had no local research partner. The majority of projects driven by researchers based in the region were internal evaluations (20; 53%), compared to only six (11%) evaluations relating to Kimberley services conducted by external researchers.

If there were no issues with a project the email responses from Subcommittee members were often restricted to ‘I have no issues with this project’ or ‘I support this project’.

Our case study of health research in the Kimberley shows that although there has been some transformation in recent years (such as a trend towards more meaningful consultation, collaboration and an increased participatory focus to research methodologies [17],[30]-[35],[37],[38],[47]), research involving Aboriginal people in the Kimberley, as with Indigenous people in other areas of the world, is still dominated by `white’ research practices [8],[48],[49].

Significantly our case study brings together `on-the-ground’ reality in terms of the research process from both the perspective of a local research committee (endeavouring to manage the system) and external researchers (attempting to utilise it) across a large geographical area over several years. Our case study is unique in that it provides a practical example of how local communities and health services can `talk back’ to researchers and provide a direct advocacy role in decolonising research.

Local stakeholders raised concerns with over half of the projects driven by researchers not based in the Kimberley, compared to only 16% of the Kimberley driven projects. It is possible that some of this was due to local stakeholders being more likely to scrutinise external researchers. However it is much more probable that most of the difference was due to most external researchers approaching local Aboriginal communities and health services after the project has been fully developed, with no local consultation as to the appropriateness of the project or the chosen methodology. In contrast, Kimberley driven projects are generally embedded in local health services and include health service providers as core members of the research team [31]-[35],[37],[47]. Kimberley based researchers are normally required to undertake relevant consultation prior to approval being granted by their host organisation.

Despite successive ethical guidelines and Government reviews over the last few decades advocating the need for greater Indigenous control over the research process [50]-[55] there has been little movement on the ground [56]. The central goal of Indigenous people controlling health research about their people has not been realised [57]. Although ethical guidelines are in place to ensure adequate community consultation occurs, in practice, it is ultimately the researchers retaining the power and the recognised authority in the research process [52]. Most research in the Kimberley was driven by non-Indigenous researchers who were not based in the Kimberley. There was pressure placed on local communities to accept national research projects even if they were not in the best interest of the community.

One of the reasons the current model is not working is because institutional timeframes and funding schedules undermine the aims of ethical guidelines and perpetuate the dominance of non-Indigenous control over the research agenda. Closing the gap in Aboriginal disadvantage in Australia and beyond, will require significant long-term and collaborative effort in health research. While the approach taken by the Lowitja Institute has proved highly successful [10], Kimberley Aboriginal communities have not been involved in this process and there is no evidence to suggest that the achievement of a national approach to the issues raised in this paper is on the horizon [57].

A strength of our study was that a researcher who was independent of the Subcommittee assessed all documentation relating to the Subcommittee during 2007-2011. However, the assessment of review forms filled out by external stakeholders was carried out by a researcher who provided administrative support to the Subcommittee, which could be viewed as a limitation. The opportunity for external stakeholders to comment on the section of the paper related to their comments helped reduce the risks of misrepresentation and as only minor edits to one quote by an external stakeholder were requested, it seems likely that the external stakeholders did not feel misrepresented.

Another limitation is that projects with no issues rarely elicited detailed responses, probably due to high workloads of Subcommittee members, and thus this paper concentrates on the concerns raised by local stakeholders about submitted projects. The other issues focused on were those raised by external stakeholders who responded to the review. The responses shared common themes about issues and barriers faced by them. These findings are expected to be useful to researchers seeking to undertake health research in the Kimberley as well as Indigenous and community-based research more generally in Australia and elsewhere in the world. Similar research to explore and elicit views from community members and Aboriginal researchers would expand our results.

The findings from this review are being used to guide improvements to the Subcommittee’s processes, including the advice it offers to new researchers and streamlining ethics processes for Kimberley health research. Other research that is planned (subject to funding) is further mapping and assessing the impact of the research carried out in the region on policy and practice and investigating the extent to which building of research capacity of individuals and organisations in the Kimberley has occurred.

While this case study has highlighted some negative aspects of research conducted in the region, during this period there were also a number of valuable projects carried out that had short to medium term positive effects on health services. These include the Lililwan project [45], which has raised awareness and increased services for fetal alcohol spectrum disorders and a pandemic influenza study [58], which led to a change in the national pandemic action plan, and capacity building and employment for two local Aboriginal people [17].

Funding and prioritisation of community-based and Indigenous research is still largely controlled by people far removed in geography and/or culture from the people being `researched’. Our case study provides a practical example of how Indigenous communities and their health services can begin to take control of research in their region. Local stakeholders need to develop strategies to challenge the status quo, to ensure local people develop the necessary capacity to execute and direct health research, and to limit the extent of external control over local research processes.

JM and DA conceived the idea of the review of the Subcommittee. FML designed and conducted the qualitative analysis of data from the Subcommittee (2007-2011) and drafted the manuscript. NH analysed the data provided by researchers from the review forms and drafted this part of the manuscript, and updated data from the Subcommittee (2012-2013). JM revised the manuscript. All authors contributed to the interpretation of the findings and provided critical review of the manuscript. All authors have read and approved the final manuscript.