Table 2 Foundations for meaningful engagement

Environmental

Time

“Engagement to me and what I’ve seen like working with Aboriginal and Torres Strait Islander communities and an amazing colleague who works in Indigenous health, it’s actually longer and it takes a lot more time than people think it does. And so I was like yeah, we’ll do it in three months, and it’s like no, no you need eighteen months to make sure you’re doing this right.”—Australian interviewee (04)

Organisational support and governance frameworks

“I think community engagement does require a governance framework to be successful. Community engagement is one activity that occurs within the space of a research project in the space of collaboration. So I do think the governance framework is an essential foundation for the community engagement to occur.”—Australian interviewee (08)

Funding requirements for community engagement

“… So the NIHR which is the National Institute for Health Research in the UK so a bit like the NIH in the States, so it has a PPI [patient and public involvement] mantra and agenda. So in order to secure fundings from them you have to show adequate PPI.”—UK interviewee (10).

“…that model is not around developing a suite of policies and standards, but a framework that funded research projects must adhere to, and agree to these policies if they are going to be funded. And that is around community involvement, community renumeration if appropriate and involved in publications if appropriate. So all those sorts of standards surrounding best practice in consumer involvement.”—Australian interviewee (02)

Relational

Embeddedness/existing connections to the community

“well really since the late eighties or mid-eighties so a really, really long time… what I have realised is that you can only do this kind of sustained research (on dementia) if you have a relationship with a community.”—UK interviewee (08)

“If you create that kind of enduring infrastructure coproduced with the community, then you have an infrastructure to identify to work with community to work with the relevant people and the community itself can identify who are the right people to be talking to about the questions which they see of, which the community identifies to be of value…”—UK interviewee (08)

Diversity amongst the research team

“So I think you have to, you have to be mindful of where your, your power dynamics look like in terms of—and even the kind of people you’re sending out, you know the, if you’re trying, and some of these things are unavoidable you know you might have a research group that is predominately white but they, you’ll engage for whatever reason with a different audience and already there’s a dynamic there which you have to accept that…you might not get successful engagement.”—UK interviewee (01)

Obtaining gatekeeper support

“What we do initially is to identify the key members of the communities who can influence the community members in making decisions. And it’s those people are usually the traditional rulers, village heads, opinion leaders. Sometimes we even involve the politicians, and the political office holders who have a strong hold in the communities. So the idea is to them first and when they get to the communities and they speak to them it’s easy to convince the members of the communities because these people are known to them, they are not strangers, they also believe that these people are interested in their wellbeing so these are the people that we think should be the stakeholders in the communities.”—African interviewee (03)

Trust

“So due diligence is very important, it’s very important to build trust, for people to understand what you’re doing, who you are what you’re going to do you won’t have problem.”—African interviewee (04)

Fair processes

“I think at the end of the day you want to make sure there is a fair playing field so the researchers and communities are working together in harmony, there is communication happening… transparency should be there as well; accountability as well…”—African interviewee (02)

Collective

Self-mobilising

“I think it would have to be a community that is so critically aware of itself and of, of what is missing, you know what needs to be addressed to reach to that level, and it has to be a self-mobilising community… that is a really empowered community.”—African interviewee (01)

Individual-researchers

Understanding of community context

“But in Nigeria I won’t mix male and female in Northern Nigeria, in Southern Nigeria it’s not an issue. Women speak up, men don’t override you know but in Northern Nigeria I won’t do that because when males and female are mixed up females won’t speak and then culturally you shouldn’t mix male and females.”—African interviewee (08)

Experience with/literacy in community engagement

“I would be interested in community engagement expertise becoming like, your biostatistics, or your statistician. It’s a given requirement that you consult with a community engagement specialist for any research that involves communities. And they contribute to the formulation of your research in terms of your objectives, your aims and your hypotheses. They help with the formulation of your ethics application, and they facilitate your approach with engaging to community. Because guess what? A lot of biomedical researchers are not necessarily skilled at engaging with communities. It is a different skill set.”—Australian interviewee (08)

Communication skills

“… I think it comes back to as researchers we need to do better with communication, and I think it’s putting onus on people saying that they don’t know enough, they need to learn more, we actually need to be clear with what we communicate and how we communicate and the way we do.”—Australian interviewee (11)

Attitudes (respect for communities, recognition of value of community expertise, open-mindedness to different points of view)

“…my research is led by people who see a value in community engagement and they’ve had a really great experience with consumer advocates as well and really found that they can give great insights and interpretations, even of the data like as we’re writing it up and putting together the manuscript.”—Australian interviewee (09)

Individual-community

Able to take a broad perspective

“…necessary people who have a broad enough perspective to kind of be able to represent the community as a, as a bigger community…” African interviewee (09)

Research literacy, including genomics literacy

“…somebody who’s, who knows enough about what you’re doing to contribute but also understands the scientific processes a bit.”—UK interviewee (02)

Known status within the community

“So the first thing for someone to be a community consultant… they need to be known within the community those people who have a say within the community, that is one thing.”—African interviewee (06)

Communication skills and compassion

“So they’d also need to be good communicators, they would need to be compassionate you know all those sorts of things that you would look for, for somebody who truly represents a community.”—African interviewee (05)