Table 3.

Perspectives on How to Engage Communities

	Summary	Illustrative Quotes & Examples
The Importance of Organizational Structure
3A	Community input integrated into study workflow	“Every protocol change goes through their [community] board. Every single protocol change has to be approved by their [community] board.” (Funder)
3B	Community input occurs in a parallel process or hub-and-spoke part of study workflow	“We had a … meeting for stakeholder representatives … It was a fantastic meeting, just to hear all the different perspectives from these individuals … But it was also very clear from the post meeting discussion that [future meetings] were planning scientific talks that were intended for a scientific audience … And we’ve not had [community and patient stakeholders] back to another … meeting, but we’ve had separate interactions with them throughout.” (Research staff) “There are just multiple infrastructures set up to get input … Multiple folks on … from different perspectives … we help it go through. It goes through us, but then we send it out to key advisors at all levels.” (Research staff)
Recognition, Accountability, and Return
3C	Essential role of community expertise	“I’m looking at … hearing from [community partners] instead of just hearing from researchers … understanding that this may be an opportunity for [researchers] to learn … We [researchers] don’t have all the answers … We need to sometimes shut up and listen … [and] need to become uncomfortable sometimes a little bit more … maybe to get out their comfort level a little bit and get more down into the community and ask them questions and get kind of more involved … I can let [community stakeholders] know that .. they’re valued and that we don’t want to start a meeting without you being here and those kinds of things, and that you’re the expert and not me because you live in the community I’m trying to work with.” (Investigator) “Our research team has seen the value [of community feedback] even going to the IRB, saying, ‘Well, we were advised to do this.’ And it seems to hold a different kind of weight.” (Research staff)
3D	Limited use of community input	Interviewer: “Is there anything from the community consultation that’s really changed the way that you’re rolling out [the study]?”Investigator: “Yeah, I think the consent process has been modified … we figured out after a short while that the families have the closest relationship with the nurses at the bedside and with the doctor who’s involved in the care … And we figured out that we’ll do a lot better if they sort of back us up and help to introduce us … So that that was an example of something we modified early on as we learned, what was working and what was not.” Interviewer: “Did any of those discussions prompt changes in the way that the study was designed or approaches to any aspect of [the study]?”Research staff: “I don’t remember a case when it did make a difference, which either means we’re not thinking deeply enough or that we planned pretty well in the first place.”
3E	Importance of accountability for addressing community input	“In a different study … it was clear that the advisory board individuals felt that their feedback was not being heard or applied … They were like, essentially, ‘Why are we giving feedback that’s not being implemented?’ … We need to be very transparent and make sure that the entire team [understands] this is valuable stuff … We’re not asking questions just to hear ourselves think … that we work hard to implement [their ideas]. And if we can’t implement [community feedback], explain why. And just keeping that communication open … It’s definitely a relationship that’s built on trust, public humility, going back and forth, and just being very honest and transparent.” (Research staff) “There’s vehicles for doing the [engagement] work. And … these vehicles are only as good as the folks that drive them. I mean, you can have these community advisory boards and if you don’t use them and they are just to check a box, you don’t have the right folks at the table, or you’re not committing the right folks, then hell, it’s just something that you put in grant, you put in your documents … I have had folks reach out… They wanted access so I can get them to the community, but there’s no real commitment in doing things; just to kind of check the box and throw your name down there to add to credibility …you know, you got to be committed to … doing the work.” (Investigator)