‘We are Not Just Participants—We are in Charge’: The NACCHO Ear Trial and the Process for Aboriginal Community-controlled Health Research

Abstract

The 22 methodological elements which defined the community-controlled design of the ear trial may assist community groups, external research bodies and funding agencies to improve the acceptability, quality and scope of research involving Indigenous peoples. Aboriginal community-controlled organisations are well placed to lead research, which can be interventional and of a high scientific standard without compromising the values and principles of those being researched. With over 120 Aboriginal community-controlled health services (ACCHSs) across Australia, the potential exists for these services to engage in multi-centre research to realise solutions to health problems faced by Indigenous Australians.

The Value and Challenges of Participatory Research: Strengthening Its Practice

“…For many indigenous people and other groups, these rights are operationalized in written codes of research ethics and memoranda of understanding, which outline their access, control, ownership, and possession of the data and use of information (78,106,115). Particularly prominent with this driver is the high degree of nonacademic partners' ownership and regulation of the research process from the outset and academic partners' recognition of the rights of the population to make decisions about issues that affect its collective health (12,21). Community-directed or controlled research ensures that the partnership utilizes and builds on local strengths and resources in conducting the research.…”

“…Equitable participation also extends to community-directed or controlled research, where decision making is shared but under the guidance of community partners (12,22,112) or driven by community organizations with consultative input from researchers (21). Therein, academic and nonacademic partners negotiate their participation so that end users, service providers, and administrators take greater responsibility for research decision making.…”

“…Although Healthy People 2010 has identified the elimination of health disparities as one of its two overarching goals (126), recent reports note that little progress has been made (1,23,127). Decision-makers, advocates of underserved populations, researchers, and intended users have questioned the social and cultural validity of studies conducted by researchers who know little about the people, culture, and setting in which their research was done (21,31,32,115,135), and whether research findings from one setting can be applied to other situations, contexts, and populations (35,43,82). Moreover, many communities express dissatisfaction when external researchers parachute in, conduct research on community members, and leave without providing information or assistance (43,78,135).…”

This Is Not a Guide to Indigenous Research Partnerships

“…In contrast, research guidelines often focus on the community partner benefit (National Health and Medical Research Council 2003b). This is important to consider particularly as research organizations are often in a strong position of power; however, Indigenous community organizations also initiate research partnerships with the understanding that research organizations will jointly benefit (Couzos et al 2005;Foster et al 2006). As community representatives we have experienced some non-transparency with research agendas.…”

An ethnographic action research study to investigate the experiences of Bindjareb women participating in the cooking and nutrition component of an Aboriginal health promotion programme in regional Western Australia

“…A strength of the BYHP was that it was community owned and developed and directly responded to the women Elders' and leaders' requests and needs, which enabled them to set their own research agenda and ensured that the research methods were protective to the rights of the people (18,(58)(59)(60) . However, there were some acknowledged limitations in the measures of the data.…”