Participatory research with a rural Aboriginal Community Controlled Health Organisation: lessons learned using the CONSIDER statement

Abstract

Context: In Australia, Aboriginal Community Controlled Health Organisations (ACCHOs) are geographically proximal to where Aboriginal and Torres Strait Islander People reside and are valued for providing holistic and culturally safe primary health care. Partnering with ACCHOs in research is appropriate for redressing health inequities experienced by Aboriginal and Torres Strait Islander People, which includes a high burden of chronic disease. Historically, some approaches to Aboriginal and Torres Strait Islander health research have been unethical. Greater accountability in the research process, transparency in reporting, and use of culturally appropriate research methodologies are key recommendations to improving the ethical integrity of research. The need for strengthening the reporting of health research involving Aboriginal and Torres Strait Islander People and Indigenous peoples globally led to the development of the CONSolIDated critERia for strengthening the reporting of health research involving Indigenous peoples (CONSIDER statement), which is a synthesis of international ethical guidelines. This project report uses the CONSIDER statement to critically reflect on participatory research undertaken in partnership with an ACCHO in the rural context and to identify lessons of value for future research. Issue: By using the CONSIDER statement as a tool for critical reflection, it was identified that processes used to establish a research partnership with an ACCHO were key to setting the research agenda, including identifying ethical issues, the needs of local Aboriginal and Torres Strait Islander People, and expectations from the research. The participation of Aboriginal community members throughout the entire research process was not only methodologically important but was also ethically appropriate. Research activities in this project included opportunities for Aboriginal community members to directly share their perspectives and experiences and develop local solutions to issues affecting them. Outcomes included evidence to support future funding applications, community-derived priorities that assisted with government reporting, and locally identified methods for addressing chronic disease management. Key to this was building the research capacity and capability of local Aboriginal community members, which also reflected the ethical principles of reciprocity and equity. This also provided opportunities for non-Indigenous researchers to learn from local Aboriginal community members and develop skills in culturally appropriate research. Lessons learned: Using the CONSIDER statement was beneficial in enabling researchers to critically reflect on a participatory research project undertaken in partnership with a rural ACCHO. Researchers identified that participatory approaches can be used to generate research of relevance to local Aboriginal community members and their ACCHOs, and to support health service reporting, and future funding applications. Research timelines and activities needed to be flexible and adaptable, to allow for staff turnover and unforeseen events of cultural significance. Similarly, it is important for researchers to be receptive to change and open to learning. Although research partnerships are established on trust and mutual respect, it is recommended that greater formal provisions are required to protect the intellectual property of Aboriginal and Torres Strait Islander communities involved in research. These lessons are likely to be transferrable to other settings and are of value to researchers seeking to partner with ACCHOs in research.

Keywords

• Aboriginal and Torres Strait Islander
• chronic disease
• ethics
• group model building
• health services
• Indigenous