Laying the foundations of community engagement in Aboriginal health research: establishing a community reference group and terms of reference in a novel research field

Plain English Summary Community engagement or community involvement in Aboriginal health research is a process that involves partnering with Aboriginal and Torres Strait Islander people or potential research participants to empower them to have a say in how research with Aboriginal communities is carried out. In the context of Aboriginal health, this is particularly important so that researchers can respond to the priorities of the community and conduct research in a way that respectful of Aboriginal cultural values and beliefs. One approach to community engagement in research is to form a community reference group to provide input to the research project. Although using a community reference group is considered to be an effective way to involve community members in research, often there are practical challenges in setting up and sustaining such a group. In this paper, we set out to describe an approach used to set up a community reference group for a new Aboriginal health research project exploring joint pain in Aboriginal and Torres Strait Islander people. This involved interviewing 13 health professionals and researchers (12 who identified as Aboriginal and one who identified as Aboriginal and Torres Strait Islander) about how to best go about setting up a community reference group. We used recommendations from these participants to inform who we approached to be members of the group and how the group would function. In describing the process we used to establish a community reference group, we were able to design a 10-step practical guide which may help other research groups who are looking to conduct new, ethical Aboriginal health research projects.