Community organisations
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The idea for a health research project for your community or organisation might come from the concerns of community members, service staff or others. It might aim to fill a gap in knowledge about a health issue, or come out of another research project where findings led to more questions that need answers. Or it may come from who you are as an Indigenous person seeking change for your community. The research project might be specific to one site or organisation, or be widely relevant.
Whatever and wherever the idea comes from, the Lowitja Institute resource Researching Indigenous health: A practical guide for researchers, chapter 7, will provide you with the information needed to start a research project, such as:
If the health research project involves clinical or epidemiological research, data linkage or data release, health services or population health research, or qualitative research you will usually need ethics clearance. This is true for any inclusion of Aboriginal and Torres Strait Islander participants, even in the event that the health research is working across other population groups.
If you are collecting ideas and information to plan a local project or evaluation of the service you provide, you may not need ethics approval. Of course ethical considerations for working with Aboriginal and Torres Strait Islander participants still apply to quality assurance processes and community consultation and ongoing communication is imperative.
For health research ethics proposals being submitted through a university system or research institution or health services and hospitals, the health research proposal should be assessed by an Aboriginal and Torres Strait Islander-specific Human Research Ethics Committee. More information on these can be found in our national, state and territory contacts or by getting in touch with the National Aboriginal Community Controlled Health Organisation (NACCHO) or one of its eight state and territory affiliates.
Aboriginal and Torres Strait islander communities or organisations approached by health researchers to collaborate on projects need to consider the following issues:
What is informed consent?
Informed consent enables Aboriginal and Torres Strait Islander health participants to be fully aware of the proposed scope of a health research project, what processes are involved, and how data and information will be collected and shared. This may require the researcher to simplify the health research language used, provide participants with visual/audio supports and consult with key community representatives including Elders. Once a trusting relationship has been established, an appropriate visual/audio recording or a written record of consent should be obtained.
Acknowledging roles in the research partnership
A good partnership should reach agreement about the identification of individuals involved in the research, and the appropriate acknowledgment of those who took part in any publication or other research output. Where the contribution has been significant, the researcher should consider joint authorship with community members.
Is this study necessary? Do we know if the research has already been conducted in another community similar to your own?
What are the reporting and other resource requirements of the organisation?
Has clear information been provided to all participants on the process for dispute resolution?
The National Health and Medical Research Council's Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders and Keeping research on track II, both updated and republished in 2018, are designed for all those considering conducting or participating in health research with Aboriginal and Torres Strait Islander communities. They assist people to become familiar with the stages of research and to make decisions that ensure the research journey respects shared values as well as the diversity, priorities, needs and aspirations of communities for the benefit of Aboriginal and Torres Strait Islander people.