Table 3 THEME 2—Purpose

Overall purpose

Participants described the main overarching purpose of establishing a community reference group as being a mechanism to steer, direct or navigate the research through a cultural lens.

Many participants stressed the importance of the group’s purpose being beyond that of ‘cultural business’ or exclusively for cultural guidance, highlighting the breadth of expertise that the members would inevitably bring to the table.

Some participants also described the role that power plays within research and health settings and the purpose of the community reference group in bridging that gap for community members.

By bringing together Aboriginal people with diverse professional and lived experience to provide research steering, and by giving Aboriginal community members a voice, the overarching purpose should also be to improve the health outcomes of Aboriginal people.

“If you’re doing work with Aboriginal people, you need to take Aboriginal people along the way” – Participant 6, F

“I think [we’re] your navigators, not just in cultural business but in so many other areas… we can be seen as just catering to all things Aboriginal, but there is so much that a reference group can offer beyond that—amazing researchers that have come up against adversities…I always like to think that I’m not just being used because I’m Aboriginal. I bring a wealth of knowledge; administration, project planning, budgets that I can bring to that group” – Participant 2, F

“There is a power gap between, a clinician or researcher and your average community member. Aboriginal people, we're aware of that power gap, and in a lot of instances we don't feel comfortable voicing our opinions, so bridging that power gap [with the group] is important” – Participant 1, M

Additional file 2, Page 3 under ‘Purpose’

Group role and responsibility to the research project

Many participants highlighted the role of self-determination and the need for the group to have ownership of its own role and responsibility to the research project. One participant echoed this strongly, highlighting that the proposed terms of reference should only be a draft to be shaped as they see fit.

Although the group should decide upon their own role and responsibility to the research group, which would ultimately be determined by the capacity of the group, participants provided working suggestions which included facilitating community engagement, research steering, knowledge communication, dissemination and advocacy.

“You need to ask them what the group wants to achieve in terms of their responsibility for the overall research project. They need to set that up themselves from the start. Does that mean they only provide guidance on cultural protocols for data collection, or does it mean they have input to every different step in the process?” – Participant 2, F

“You need to be transparent that what you propose to them is a draft, and they can shape it how they like” – Participant 11, M

Additional file 2, Page 3 under ‘Role’ and page 5 under ‘Authority’

Overarching aim 1: Community engagement

Most participants acknowledged the role that community engagement would play, with the concept of ‘giving voice’ to community often being cited.

A few participants also highlighted that community engagement efforts should go beyond that of ‘consultation’ with ongoing involvement of community reference group members and community members, rather than just ‘a chat’ at the beginning of the project.

Community engagement was vital to ‘ensure that the engagement of the Aboriginal community is not 'taken for granted’ and to ‘build an authenticity’ with community which the research group aims to benefit and should be done in a way to avoid tokenistic or ‘check box’ gestures.

“You’ve got the right people to take the opinion of the community and make sure it’s heard” – Participant 8, F

“I think to make sure that the engagement the Aboriginal community is not taken for granted. That when the group, as a representative body of the community, provides advice to the research project that it’s actually that of the community” – Participant 11, M

“I guess the plan obviously is just involving people in the discussions, and hearing people’s voices from the ground roots. So, even times when I’m talking at the things I’ve been involved in, I can kind of share the stories of people that I’ve seen, but it’s better to actually get them involved” – Participant 13, F

“Well, there’s consultation and then there is what’s needed. I think sometimes when research is done, consultation is used as a check box. I think you need to be very aware that a lot of community members are really wary of consultation, because often it takes knowledge from communities, uses knowledge for the benefit of whoever institutions or researchers or organizations and the people that have given their time and effort and their knowledge lose it, essentially” – Participant 2, F

Additional file 2, Page 3 under ‘Role—Community Engagement’

Overarching aim 2: Research steering

Research steering and related aims were the most commonly suggested by participants, which closely aligned with the suggestions for the overall purpose of the group.

Cultural security and the group providing a cultural lens was also discussed in the context of research.

With regards to steering some participants suggested that the community reference group should have input in the research at every step of the way. One participant suggested methodological input for qualitative studies at a minimum.

“To steer, say, the research, and whether it's the findings or it's the way the research is conducted, in a culturally safe manner. We need to ensure that community members being engaged with feel safe, and the only way to do that is to engage the community themselves. I know it's a lot of repetition, but we know our community, we know how it works, we know people who would be easier to engage with than others. We know, I guess, the right way to talk, we know how to build that trust with that patient quickly and in a way that would be beneficial to research” – Participant 1, M

“Absolutely you navigate [the research]. We’re going to see things that – and the people that are standing with different lenses and just seeing the same things that you wouldn’t necessarily see” – Participant 3, F

Additional file 2, Page 3 under ‘Role—Research Steering’

Overarching aim 3: Knowledge dissemination and advocacy

A few participants acknowledged the role that the community reference group should have in being able to communicate research findings, project outcomes or project needs to community or community health organizations.

Having a strategy for communicating with community was seen by a few participants as an important step to ensure that research was being translated into practical outcomes—an ethical requirement of Aboriginal health research.

“You might want to ask yourself, what influence do those Aboriginal people that come onto your committee have back in their community or their entities, and how can there be a two-way information flow? So, your committee can share back, whether it’s to the community cooperative health and welfare organization” – Participant 7, M

“Also, I think this is probably nearly the most important one, is around the translation of the outcomes from the project into actual practice” – Participant 11, M

“The other thing they absolutely are is your comms strategy – your communication strategy. If you want to get anything out there or you want to get anything back from community they’re the people that are going to do that for you” – Participant 3, F

Additional file 2, Page 3 under ‘Role—knowledge dissemination and advocacy