Navigating the process of developing a research project in Aboriginal health

Aboriginal peoples have long argued that research conducted in their communities does not benefit them or lead to improvements in health.2 The NSW Aboriginal health information guidelines encourage research questions that involve collection of health-related information that is “ethical, meaningful and useful to Aboriginal peoples, based on an agreed view negotiated between the relevant parties to the Partnership” (Box 1).3 The information gathered must also be used to facilitate improved health and to better plan and deliver health services.

In a literature review, Anderson and colleagues advocated for ethical guidelines to promote transparent negotiation with Indigenous Australians about the potential benefits of proposed research, suggesting that this could occur by demonstrating that the investigators intend to contribute to improved health and wellbeing of participating communities; the proposal is linked with local Indigenous community priorities; the proposal contributes tangible and accessible outcomes for participants; and the proposal reflects needs identified in health improvement plans and strategies.4

Selection of a supervisor for less experienced researchers should be carefully considered. It is of great value to have a supervisor or co-investigators with an Aboriginal or Torres Strait Islander background and insight into culturally appropriate conduct and protocols for community consultation. They may also be able to introduce the researcher to key stakeholders in the community and initiate the process of becoming known and trusted in the community. The National strategic framework for Aboriginal and Torres Strait Islander peoples’ mental health and social and emotional wellbeing 2004–2009 recommends the “employment of, and/or skills transfer to, Aboriginal and Torres Strait Islander peoples in all aspects of the research process, including project management, research and research analysis”.5

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

As well as seeking approval from the ethics committee of the academic institution or hospital where the research will take place, the National Health and Medical Research Council (NHMRC) stipulates that for Aboriginal health research, the ethics approval process must include an assessment by, or advice from, people who have connections with Aboriginal and Torres Strait Islander peoples or knowledge of research in the area, and who are familiar with the culture and practices of Indigenous participants in the study.9 Most states and territories have their own dedicated ethics committee for Aboriginal health research proposals (Box 2). Their individual requirements vary, but most refer researchers to the NHMRC1,9,12 or Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) ethical guidelines.7

In practice, the local or institutional ethics committees will generally only grant approval for the project after it has been accepted by the relevant Aboriginal ethics committee (Box 1).

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

• Research merit and integrity: including demonstrating support for the project from relevant Aboriginal and Torres Strait Islander communities;

• Justice: including developing trust and a sense of equal research partnership with Aboriginal peoples, ensuring that the project reflects Aboriginal research priorities;

• Beneficence: demonstrating how Aboriginal peoples will benefit from the research; and

• Respect: active engagement with Aboriginal and Torres Strait Islander peoples, drawing on their knowledge and wisdom in the research process and recognising and valuing cultural diversity.

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).

Ownership and custodianship of information are important concepts. Custodianship refers to day-to-day responsibility for the protection of individual client records, including those held within data collection systems, while ownership refers to the right to control the dissemination and use of personal information. Custodians of information about Aboriginal peoples are responsible for maintaining the quality and accuracy of the information record, ensuring the information is stored securely and destroyed at the appropriate time, and determining when and where it is appropriate to disclose and use the information.3

Another consideration is how the consent of study participants is documented. In addition to standard participant information sheets and consent forms, an organisation (Aboriginal Medical Service [AMS] or Aboriginal community-controlled health service) consent form for research in Aboriginal communities may be required.

Researchers should also be familiar with the recommended terminology for referring to Aboriginal and Torres Strait Islander peoples.17

Given that the purpose of collecting Aboriginal health information is to benefit Aboriginal peoples, there needs to be a plan for sharing the results with the community.4,6

The AIATSIS guidelines recommend:

• early discussions with the community on how and when the results of research will be fed back to and discussed with the relevant community members or organisations, which should occur before publication or broader dissemination of the results;

• establishing a clear understanding of the level of community control over any research results or materials developed; and

• negotiations with the community about the disposition and storage of research data, including any agreed restrictions on use of information.7

The results, implications and recommendations derived from the study may then be presented to local AMS or Aboriginal community-controlled health services, hospitals and community centres in the area, and then be more broadly disseminated in publications and conference presentations.

The great disparity in health between Indigenous and non-Indigenous Australians is well documented. Research that simply highlights this inequality may further demoralise and stigmatise Aboriginal and Torres Strait Islander peoples and may not generate ideas for change and improvement in health services. Results, whether favourable or not, must be reported accurately; however, it is important that they are presented so as to emphasise strengths and avenues for action rather than deficits or negative comparisons and hopelessness.18

Additionally, any explanations of Indigenous health data obtained should be comprehensive and must address cultural issues and the consequences of political and historical climates, as well as socioeconomic variables. Multiple explanations may be needed, as well as flexible interpretation of the data, as Indigenous people see health in complex, interrelated ways that may not seem understandable or relevant to non-Indigenous people.18

Information must be sensitively analysed and reported to avoid unintended interpretations or consequences. As a standard condition of its ethics approval, the AH&MRC Ethics Committee stipulates that it must review a final report for compliance with ethical and cultural criteria before submission for publication or any dissemination of the report.13 Such requirements should be considered when planning journal submissions and conference presentations.