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Table 1 THEME 1—Recruitment and Representation

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

Recruitment and Representation

Suggestions identified from interviews

Supporting quotes

Reference in draft terms of reference

Trust and relationships

When reflecting on successful recruitment of ‘the right people’ to a community reference group, the main theme identified by participants was the importance of relationships.

Five participants referred to the importance of building trust or relationships for recruitment purposes.

Many also referred to community leaders, Elders or ‘gatekeepers’ of community serving critical roles in assisting researchers in forming the networks needed to facilitate member recruitment.

You need to build a relationship with people and you need to find your gatekeepers. If you haven’t got a relationship with the community, gatekeepers will open the way” – Participant 12, F

“Try and link in with one or two community leader-type people that know a lot of people. That’s how you’ll get them. Forget formal” – Participant 2, F

“Be transparent with community, so you can build relationships and build trust, which is key" – Participant 6, F

N/A (related to recruitment rather than terms of reference)

In-house call outs, social media, health service communications

Secondary to relationship building, the use of strategies such as social media, community notice boards and the communication channels of relevant health organizations (e.g. newsletters) were also suggested by some participants.

Despite these ‘in-house call outs’ being more trustworthy, one participant cautioned about these potentially cursory strategies, as these strategies were less focused on relationships, may lead to members of the group being less committed and engaged in the group over time.

“Reach out to Aboriginal organizations to do a callout, that way recruitment for the reference group is in-house within community” – Participant 6, F

“A poster on a board in an Aboriginal Community Controlled Health Organisation just does not crack it, you’ve got to have a relationship with them to ask them to come on board” – Participant 12, F

“Social media [is] big as well. I got a lot of people who I didn’t expect from social media ads on different black fella groups” – Participant 2, F

N/A related to recruitment rather than terms of reference)

Broad-spectrum expertise and Aboriginal medical services

Through the above recruitment strategies, most participants recommended representatives of a broad spectrum of expertise around the table inclusive of ‘both sides of health services’ or both service providers and consumers.

Most participants highlighted the importance of engaging Aboriginal health services either through the state ACCHOs (see Box 2) or through engaging with individual community or medical services (see also Table 2).

“It's very hard, especially when you're engaging clinical staff and people from a research background who have this wealth of knowledge, but then you also have that lapse and lack of cultural knowledge, and then you have the community who may or may not have a vast clinical background in it but have those lived experiences or have that knowledge of what osteoarthritis  is at a base level. Being able to balance the two out I think is important”—Participant 1, M

“I suppose in locations where you’re looking to do the research, I think certainly the Aboriginal medical services, should be really the first people to be engaged, primarily because they’re the ones who would be dealing most with Aboriginal patients. Yeah. I would certainly suggest that they be involved. Whether that’s through the individual services themselves, or through VACCHO” – Participant 11, M

Additional file 2, Page 5 under section ‘Membership’

Aboriginal and non-Aboriginal representation

Despite the overlap of expertise and demographics to be represented on the group, there were divergent views around the inclusion of non-Aboriginal people as members of the ECRG.

One participant referred to racism and the ongoing marginalization of Aboriginal people in the design of health services.

Two participants felt it was important to include non-Aboriginal people as allies on the journey towards better health outcomes.

Whilst exploring these themes, a few participants offered up solutions whereby non-Aboriginal people could be included in positions that could not be filled by Aboriginal people or having a set proportion of the group that must be Aboriginal, especially when considering reaching quorum.

This predetermined proportion was to be maintained with any members turnover and if proxy members were to be filling in as sitting members.

Do you think that when they’re designing stuff for white people they ask Aboriginal people to be on [the group]?”—Participant 3, F

It’s really important on any Aboriginal project, we involve as many Aboriginal people as we can, but I feel like if we’re going to be working towards reconciliation, health, closing the gap, we need to be working with our allies towards this. It’s going to open people’s eyes to how big this gap is, how important Aboriginal health is and it helps spread the message” – Participant 9, M

“Involving non-Aboriginal members as well in the group is important, having non-Aboriginal researchers, with a background around Aboriginal research would be great” – Participant 1, M

I would say a specific percentage of your group must be Aboriginal or Torres Strait Islander. So, 80 per cent Aboriginal or Torres Strait Islander, 20 per cent not. You need logistics around it” – Participant 9, M

Additional file 2, Page 5 under ‘Members’