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Table 4 THEME 3Function and Logistics

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

Function and logistics

Suggestions identified from interviews

Supporting quotes

Reference in draft terms of reference

Frequency

Many participants suggested that the frequency of meetings would be determined by the ‘cadence’ of the project, which included both the intensity of the work that needed to be completed and the timelines of the project.

Frequency of meetings were also suggested to be decided on by the group as this would ultimately be decided by the capacity of the members.

Specific time frames suggested for meetings ranged from a maximum of fortnightly to six-monthly at a minimum.

Many participants suggested that meetings should be more frequent when the group is first established and should move to less frequent as the group becomes more familiar.

“It depends on what the timeline of the project is. If you’ve got tight timeframes, monthly. If you haven’t got tight timeframes, bi-monthly is really good.” – Participant 3, F

I would probably say once a month at the start, and then move into bi-monthly and then quarterly.” – Participant 1, M

“In the first instance you’d probably want to do it once every couple of months; but really I’d be asking the group that question once you’ve formed it. When you’re seeking people’s interest in being part of the group, they can say, “Okay, well, I understand the commitment in the first sense,” so, “over the first six months we’re going to meet three times,” but then they’ll develop a terms of reference, which will [state] how often they’ll meet” – Participant 11, M

Additional file 2, page 7

Format of meetings

Most participants acknowledged the importance of having meetings available through teleconferencing platforms such as Zoom; this was to improve the accessibility of meetings and to lessen the burden of members that would inevitably be busy.

Access to the internet and software such as Zoom was highlighted as something to consider among older community members.

Some participants highlighted the importance of meeting face to face for the first meeting to allow for social yarning, meeting and building relationships between the group.

“I think the first time if you can bring people together, do it that way, when everyone first meets each other” – Participant 3, F

“I think—given our time—Zoom’s definitely something that we kind of need to use. But again, a lot of things that we do, and some of the working reference groups that I sit on for work, we do have Zoom catch-ups, but I think accessibility is something that you just need to be mindful of, especially with logistics and things like that; so how are community members, particularly older community members, going to access it?” – Participant 6, F

“In the current environment, yes. We’re kind of forced to use [Zoom], and I think it’s the safest and the actual best way. Not just for cultural appropriateness, but for the whole of Victoria to use this. I think it’s really important that the people that are coming onto the group know how to use this as a platform…[and] when we can meet I would prefer to meet in person. The time of people is so much valuable, but still offer a dial-in, a dial-in teleconference number or teams to dial in people who can’t be there” – Participant 9, M

“But I think it’s really important to have the chair the first time – like I said, if you can meet face to face it’s really important to do it and always do your Acknowledgement of Country. I know you guys know that but, yeah. That always is really good. Then making sure that everyone goes round and they say which country they’re on. So taking that time to do that.” – Participant 1, M

Additional file 2, page 8

Size of the group

Suggestions for the ideal size of a community reference group ranged from a minimum of four and a maximum of 12.

Many participants discussed potential challenges of logistics, availability, absenteeism and overall management of a group that was larger than 12.

Some participants also suggested that the group should be large enough to allow for absenteeism while still remaining large enough to make decisions.

“As a caution is you may not get as many people as you would like but the people you get are the right people” – Participant 12, F

“More than four, and probably less than 10.. I think if you’ve got, three or less you’re not really getting a particularly good breadth of discussion across the group, and I think unfortunately there’s an opportunity to be loaded one side or another when there’s not enough people. Then anywhere up to 10’s fairly easily managed, but above that it’s just too hard, you’ve just got too many people and too many things that they want to say. Nightmare… just the logistics and being able to coordinate that many would be hard.” – Participant 11, M

“Again, I think sending an agent when someone cannot attend who has been well informed is important” – Participant 1, M

Additional file 2, page 5

Roles and responsibilities

Appointing a chair or co-chairs to provide governance to the ECRG was considered essential to nine participants.

Participants saw the chair as someone who needed to be a good facilitator, someone who could ‘keep track of everything’, follow up on peoples’ responsibilities and accountabilities, keep people engaged along the way, as well as someone who was Aboriginal and who potentially had a good grasp of Aboriginal health research.

The chair or co-chairs were seen as necessary to provide a ‘point person’ for other members to communicate with.

One participant suggested that both a male and female leadership should be instated.

Additional specific roles suggested were a community liaison officer (to communicate with Aboriginal health services and community members) and an admin/secretariat support person.

Roles beyond that of the chair were more often described as ‘small goals and responsibilities’ or ‘something to be involved with or be in charge of’ that would provide each member with a sense of shared accountability.

Members roles were also seen as something that the group should have ownership over.

“I think it would be good to have someone who can perhaps be a chair of the group that has a good grasp of Aboriginal health research. They don’t necessarily have a full understanding of this particular project, or a PI on this project or anything, but understands the research process particularly in an Aboriginal context, have got a good understanding of how to engage with Aboriginal communities in health research, are able to understand good governance of these kinds of things, and perhaps find someone like that that can really manage the group” – Participant 11, M

"Community should come up with roles that they want to play, and what their expectations are for every single person in that…it should be done in a way where they agree with doing that, because they came up with it”

– Participant 6, F  

“Sometimes they help, but I think they aren’t essential, I would get the group together first and see how it gels and see what people want to do” – Participant 5, M

“You need to give people little responsibilities and somebody who is responsible for following up that those things have been done basically as the one who is keeping track of everything” – Participant 10, F

Additional file 2, page 6

Authority and decision-making

The authority and decision-making power of the group in relation to their influence on the research project was an important theme to most participants.

Overall, the authority of the group would be an important mechanism to ensure power-sharing and to ensure that the ECRG was meaningful and valued.

Transparency around the power of the ECRG from its inception was integral to moving past being considered a ‘token-gesture’ or the group being done ‘just for the sake of doing it’ and was the key to members feeling they were involved in something that has ‘integrity, impact and value’.

Two participants saw the ECRG’s authority as more of a ‘checks and balances’ responsibility, rather than the group having the ‘final word’.

Participants most often spoke about decision-making in relation to the power of the group and its role in making decisions for the research group and did not offer suggestions for implementing formal, internal decision-making processes.

What power will the group actually have, do they have the ability to veto certain elements of the project, who has ultimate say on what the project does? I think if you’re going to go down the path of seeking a community reference group, you need to ensure that their voice is heard and respected throughout that whole process, rather than it just being a token gesture”- Participant 11, F

It’s good to put out clearly what they are there for. Is it to make decisions? Is it to say yes and no to the way things are going or is it just a sounding board. I think you’ve got to be bold enough to say the reference group has no decision-making powers, but ‘this’ is what you want them to do” – Participant 5, M

“I think that [the research] should just be double checked with anyone that’s on the committee, if someone isn’t happy with it, then you make a priority of sorting it out. So, it’s not that they’re making all the decisions, it’s just making sure that everyone is happy” – Participant 8, F

There is never going to be a final word, there will never be consensus, but you will be able to get an indication more so of stopping things if things are going wrong” – Participant 2, F

What constitutes a quorum? You don't want to have two or three people show up and decisions being made when they shouldn't be made, when most of the group representation isn't there. You want representation for those decisions” – Participant 1, M

Additional file 2, page 5, and page 7

Communication

Some participants provided suggestions on communication strategies which may help to keep members engaged over time.

A few participants suggested that a centralised location such as within a social media platform (i.e. a Facebook group) may help to keep communication less formal and more continuous than emails.

“Formal does not work very well. If you’re stuck with emails, it just gets way too confusing, too many reply all threads going all over the place. Having a centralised location where you can have continuous communication is really handy. And then for those bigger pieces, you can use email” – Participant 2, F

“I think just touching base every now and then and making sure that everyone’s still happy and still onboard and still have the same opinion I guess or the same direction. I guess sometimes you change your mind or things change along the way. I think it’s constant checking in is always good” – Participant 8, F

You hope that everyone will stay engaged…I think if you guys have frequent comms [communication], but not overly overbearing, making sure that everyone is replying, and maybe reaching out to everyone and saying, ‘How’s this going?’ This is what I mean by that group owner keeping people connected. It’s not like pushing and being like ‘How’s your piece of work going?’ It might be like ‘How are you going? How are you liking being on the committee?" – Participant 9, M

Additional file 2, page 7, under section ‘Expectations’

Remuneration

Most participants agreed that members should be reimbursed for out of pocket costs if attending meetings in person.

Participants had differing opinions about sitting fees and the appropriate amount that members should be reimbursed, however for those that suggested financial reimbursement there was a sense that this would help to ensure members felt valued.

Some participants felt that it was appropriate to only provide refreshments or to provide a gift instead of monetary remuneration, however others felt that it was important that members felt valued and recommended a range of sitting fees between $50 and $200* per hour or meeting.

"If you want the mob and you just serve up cold sandwiches on a winter’s day, you're not going to get much" – Participant 5, M

“Most [reference groups] I have been on paid a stipend for each meeting. I think that’s the standard…and that they get reimbursed for any travel, time they’re attending the meeting. And then if there’s work to be done outside of the meeting, I would consider reimbursement for that as well” – Participant 2, F

“It depends on how much time you’re expecting that person to commit. So, not just the meeting, but what work they’ve had to do as well. Yeah, I don’t know, it’s tricky. Let’s just say your hourly rate is like $50, but you’ve had to do a couple of hours work beforehand, you might be looking at 150 or $200 or something per meeting” – Participant 13, F

“It doesn’t have to be big but it’s substantial to culture and local businesses ‘hey, we’re going to give you a little gift that includes this, this and this from these local [Aboriginal] businesses” – Participant 9, M

Additional file 2, page 8 under section ‘Sitting fees’

  1. *The research team discussed remuneration further with senior Aboriginal members of the research team who felt that $100 (+ refreshments and any travel re-imbursements) advised this was appropriate and consistent with similar activities in other areas of health research. This figure was also agreed upon by all final members of the ECRG upon before their appointment to the group