Inclusion in participatory research: what were the whitefellas doing in an Aboriginal health project?

Health research in indigenous communities, like many interactions between such communities and white-dominated institutions, has a chequered history leading to a three-fold decrement: suspicion and resistance to research that is seen as coming from outside of the community; a shortage of research generators and leaders within the community; and cumulative gaps in the research evidence base, both in terms of coverage of topics and in terms of meeting the priorities of the community.

Additionally, these decrements have been mistakenly located as problems being caused from within the community, rather than recognising that these are outcomes of wider contextual, historical and institutional factors and failings. Good research, as culturally appropriate, inclusive of community voices and meeting the needs and priorities of the community, is necessary in an increasingly evidence-based-practice culture within policy and health settings. Culturally safe research with and for indigenous communities has the potential to be empowering, and to bring community voices, views and experiences into the influential realm of'evidence.

This process of developing safe, appropriate and inclusive research is not straightforward: the decrements are recursive, with a shortage of connections between the community, its priorities and research. However, as the Healing Stories project that we discuss here has shown, it is possible to develop culturally safe participatory research by working with Elders from within the community and with leaders from within white institutions, in a spirit of reconciliation. The methods and findings of Healing Stories have been reported elsewhere, with an emphasis on the voices from the community; this chapter explores some of the 'behind the scenes' processes, from the perspective of the white researchers working from within white- dominated institutions.

After briefly describing the Healing Stories project, this chapter reflects on three parts of the participatory research process: getting started, leading together, and working together. The first of these considers laying the foundations for participatory research, working with Elders and leaders, and planning for inclusion, examining participatory research as a recognisable research design, with potential for rigour, cultural safety and inclusion. The second explores developing participatory methods, working with communities, and opportunities and choices for inclusion. The third examines the process of being participatory, working together and engaging in inclusion across the long-term commitment to the project.