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


 Background

Community engagement in Aboriginal health research aims to protect and empower participating individuals and communities and is an ethical requirement in research. One approach to incorporating community engagement in research is to engage a community reference group to provide oversight and cultural guidance to projects. The aim of this study was to describe the process of establishing a community reference group and terms of reference to guide the Enhancing Equity, Collaboration and Culturally secure Osteoarthritis care for Aboriginal Australians collaboration (ECCO). ECCO is a national inter-professional team of Aboriginal and non-Aboriginal health service staff and researchers that was established to develop culturally secure osteoarthritis care for Aboriginal people.
Methods

This was a two-phase study conducted in Victoria, Australia. In phase one, semi-structured research yarns were conducted collaboratively by Aboriginal and non-Aboriginal co-investigators to explore Aboriginal health stakeholder perspectives on establishing a community reference group and terms of reference. In phase two, we used recommendations identified in phase one to invite members to participate in the ECCO community reference group and to ratify the terms of reference through a culturally adapted focus group.
Results

Thirteen people (eight female, four male) participated in phase one. Participants represented diverse professional backgrounds including physiotherapy, nursing, general practice, health services management, hospital liaison, cultural safety education, health research and the arts. Three themes were identified in phase one; Recruitment and Representation (trust and relationships, in-house call-outs, broad-spectrum expertise and Aboriginal majority); Purpose (community engagement, research steering, knowledge dissemination and advocacy) and; Function and Logistics (frequency and format of meetings, size of group, roles and responsibilities, authority, communication and dissemination). In phase two, six Aboriginal people were invited to become members of the ECCO community reference group who recommended changes to seven domains of the terms of reference.
Conclusion

The findings of this study are captured in a 10-step framework which describes practical strategies for establishing a community reference group and terms of reference.