“Doing Aboriginal research the right way”: Reflections on leadership and governance within a cancer research project

Description

Peer-reviewed abstract

Background: Strong Indigenous leadership and governance is not only the right way to do research but ensures research meets community priorities, produces meaningful results and best places the findings to be translated into practice and policy. Guidelines for ‘ways of working’ are essential in privileging community control and engagement across all stages of research and fulfilling ethical obligations. This presentation will outline reflections from a community governance member on a state-wide Aboriginal cancer disparities research project.

What was done: The Wardliparingga Aboriginal Health Equity Theme undertakes research guided by the nine principles of the South Australian Aboriginal Health Research Accord. Notably, the principle of ‘Involvement’ necessitates the establishment of a community reference group to provide guidance from Aboriginal people and organisations in developing, implementing and translating research. The South Australian Cancer Data and Aboriginal Disparities (CanDAD) research study is Aboriginal-led and governed by the CanDAD Aboriginal Community Reference Group (ACoRG), with membership from Aboriginal people with lived cancer experiences from across South Australia including urban, regional and remote communities. Members of ACoRG meet regularly with the research team and have oversight of the research; including how participants are engaged, interpreting data and all research outputs, such as presentations, peer-reviewed papers and reports.

Lessons learned: Through the processes of project governance oversight is provided into research implementation and translation, and study findings are enriched through the incorporation of Aboriginal people’s cancer experiences. Funding mechanisms require careful consideration of resources which enable community reference groups to be actively engaged during each stage of the research process. The governance structures support translation of findings with diverse stakeholders, as well as broadening project support gained from Aboriginal people and communities. Governance arrangements are required beyond the life of the project funding to ensure research translation activities and engagement with stakeholders are maintained overtime.

A Background: Strong Indigenous leadership and governance is not only the right way to do research but ensures research meets community priorities, produces meaningful results and best places the findings to be translated into practice and policy. Guidelines for ‘ways of working’ are essential in privileging community control and engagement across all stages of research and fulfilling ethical obligations. This presentation will outline reflections from a community governance member on a state-wide Aboriginal cancer disparities research project.

What was done: The Wardliparingga Aboriginal Health Equity Theme undertakes research guided by the nine principles of the South Australian Aboriginal Health Research Accord. Notably, the principle of ‘Involvement’ necessitates the establishment of a community reference group to provide guidance from Aboriginal people and organisations in developing, implementing and translating research. The South Australian Cancer Data and Aboriginal Disparities (CanDAD) research study is Aboriginal-led and governed by the CanDAD Aboriginal Community Reference Group (ACoRG), with membership from Aboriginal people with lived cancer experiences from across South Australia including urban, regional and remote communities. Members of ACoRG meet regularly with the research team and have oversight of the research; including how participants are engaged, interpreting data and all research outputs, such as presentations, peer-reviewed papers and reports.

Lessons learned: Through the processes of project governance oversight is provided into research implementation and translation, and study findings are enriched through the incorporation of Aboriginal people’s cancer experiences. Funding mechanisms require careful consideration of resources which enable community reference groups to be actively engaged during each stage of the research process. The governance structures support translation of findings with diverse stakeholders, as well as broadening project support gained from Aboriginal people and communities. Governance arrangements are required beyond the life of the project funding to ensure research translation activities and engagement with stakeholders are maintained overtime.

Period	17 Sep 2019 - 19 Sep 2019
Held at	World Indigenous Cancer Conference
Event type	Conference
Location	Calgary, Canada
Degree of Recognition	International