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

Abstract

Background Community engagement or community involvement in Aboriginal health research is a process that involves partnering, collaborating and involving Aboriginal and Torres Strait Islander people or potential research participants to empower them to have a say in how research with Aboriginal communities is conducted. In the context of Aboriginal health, this is particularly important so that researchers can respond to the priorities of the community under study and conduct research in a way that is respectful of Aboriginal cultural values and beliefs. One approach to incorporating the principals of community engagement and to ensure cultural oversight and guidance to projects is to engage a community reference group. The aim of this study was to describe the process of establishing an Aboriginal community reference group and terms of reference. The community reference group was established to guide the research activities of a newly formed research collaboration aiming to to develop osteoarthritis care that meets the needs of Aboriginal and Torres Strait Islander people in Australia. Methods Adopting a Participatory Action Research approach, this two-phase study was conducted in Victoria, Australia. In phase one, semi-structured research yarns (a cultural form of conversation used as a data gathering tool) 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, recommendations in phase one were identified to invite members to participate in the community reference group and to ratify the terms of reference through a focus group. Data were analyzed using a framework analysis approach. 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 community reference group who recommended changes which were incorporated into the 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 in Aboriginal health research.

A rapid review to inform the policy and practice for the implementation of chronic disease prevention and management programs for Aboriginal and Torres Strait Islander people in primary care

“…Effective engagement of Aboriginal and Torres Strait Islander communities and their leadership in program design, delivery and evaluation of chronic disease programs is integral to improving Aboriginal and Torres Strait Islander health and increasing access to primary care services [ 84 , 85 ]. Previous studies have identified the following factors that enable engagement with Aboriginal and Torres Strait Islander communities: employment of local Aboriginal health workforce; trust and relationships; Aboriginal and Torres Strait Islander leadership; availability of flexible services to address holistic needs of local communities; benefits of engagement in service design and delivery; cost of participation and recognition of local Aboriginal knowledge and cultural traditions on study design implementation and dissemination [ 84 , 86 – 88 ]. These enablers align with those reported in health service research that engaged with Indigenous and marginalised communities in an international context [ 89 ].…”

Engagement and partnership with consumers and communities in the co-design and conduct of Research: Lessons from the INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on haemodialysis (INFERR) clinical trial

“…Consumer and community engagement is critical in Aboriginal and/or Torres Strait Islander peoples (First Nations Peoples) (see Table 1 for definitions) research as this empowers them to have a say in how research with First Nations communities is conducted [ 8 – 11 ]. (see Table 1 for definitions).…”

A rapid review to inform the policy and practice for the implementation of chronic disease prevention and management programs for Aboriginal and Torres Strait Islander people in primary care

“…. Previous studies have identi ed the following factors that enable engagement of Aboriginal and Torres Strait Islander communities: employment of local Aboriginal health workforce; trust and relationships; Aboriginal and Torres Strait Islander leadership; availability of exible services to address holistic needs of local communities; bene ts of engagement in service design and delivery; cost of participation and recognition of local Aboriginal knowledge and cultural traditions on study design implementation and dissemination[72,[74][75][76]. These enablers align with those reported in health service research that involved engagement of Indigenous and marginalised communities in international context[77].…”