Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity

Figures & data

Table 1. Interview sample characteristics.

	Number	Percent*
Gender
Women	65	64%
Men	37	36%
Nonbinary or Other	0
Race
Black or African American	16	16%
American Indian and Alaska Native	0
Asian American	6	6%
Native Hawaiian and Other Pacific Islander	1	1%
White	72	71%
Two or more races	3	3%
Not reported	4	4%
Ethnicity
Hispanic/Latino	9	9%
Not Hispanic/Latino	92	90%
Not reported	1	1%
Age
18-65	93	91%
65+	9	9%
Total	102

* Rounded to nearest one percent.

Table 2. Perspectives on who represents the ‘community’.

	Summary	Illustrative quotes & examples
2A	Ad hoc, opportunistic identification of community advisors based on preexisting connections	“A lot of that [CE] we do with just people who…we all have either personal or professional relationships with … They are well plugged into various groups. We also just reach out to people who engage with us, or who we interact with, or we happen to go to a seminar and they’re presenting. And so it’s kind of a mish mash of people … then we were kind of able to reach out to groups that we hadn’t heard … from and kind of broaden our catchment.” (Research staff)
		“Basically we said to the recruiters, ‘Is there somebody that you thought would be good?’ … And they’re like, ‘I got this guy,’ and ‘I got that guy.’ And we invited them. And some people accepted and some people didn’t.” (Research staff)
		“We had an in-person meeting where we invited some of the stakeholders from the local groups … The listserv for people that can participate in the [community] feedback loop [for the study] came from the members that attended that in-person meeting. We are trying to increase the number of people that are on the listserv to include other people that weren’t at that particular in-person meeting. I know that I’ve had challenges at my site trying to identify people that might be appropriate for that sort of group.” (Research staff)
2B	Selection based on personal characteristics & experience with research	Interviewer: “What makes [the community advisor] a great collaborator, partner voice to have on board?” Investigator: “It’s their enthusiasm, their level of engagement and they’re just great sort of spokespeople … really compelling … the way they represent themselves … very motivated and interested in helping.”
		“[The community advisors] have been quite involved with [the research institution] and are real advocates.” (Investigator)
2C	Upstream decisions about who represents the community can shape, downstream, the nature and content of the community feedback given	Excerpted from observation fieldnotes on a panel discussion and Q&A that included research staff from one of our study sites: “An audience member asked the panel how they identified individuals to serve on a community advisory board: ‘How are you making sure they are representative?’ The panelists looked at each other, some punted on answering, and some in the audience chimed in to give an array of responses: ‘some CAB [community advisory board] members volunteered and some have been recruited and are part of collaborating organizations,’ ‘there was a call for community partners to join,’ and ‘participants who expressed an interest. These were … known people in the community whose voice we value.’ The panelists’ hesitance and responses suggest an inability to know whether who they consulted with were sufficiently representative of the community’s interests, and that perhaps this question might not even have been considered at all.”

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)

Table 4. Perspectives on what community engagement is for.

	Summary	Illustrative Quotes & Examples
CE for Study Facilitation
4A	CE in the service of study procedures	“The engagement is seen as really closely tied to recruitment and enrollment … generating interest and enthusiasm for the [study].” (Research staff)
4B	CE as instrumental, transactional	“The metrics are basically, did 30 people come to your barbecue?” and “the number of people who we engaged … the people who got materials… Did people sign up?” (Research Staff)
CE for Community Benefit
4C	CE to benefit community health	“You have to understand how does being in a community, and the interactions, and the connections that people have, and the conversations and the thought processes that individuals have in the community … understanding that so that we can disseminate and develop interventions…You can’t just go and say, ‘Here’s cardiovascular disease information. Take it and run with it.’ … Understanding how you take uptake, retention and really how people take action on the messages. So the goal is to really develop sustainable intervention … And changing behavior.” (Research staff)
		“I’m hoping that [the investigators] are trying to always … ask … ‘What does this mean to the community that I’m serving that I’m trying to impact and how do we get there? How do we get that brief or that publication transferrable to where it’s palatable that it can be given to the community in some form or fashion? How can it be disseminated and translated?’” (Investigator)
4D	Community-centered research questions	“Working with those communities to design a project that is going to include them and things that are of interest to them. So, what are they going to get out of this? Is there something that their community is particularly interested in studying? … If people were saying … this is a question we really want to know the answer to … then … the community [could be more] willing to contribute the data to answer that question… The resource would become richer. I think that the science that was being done would be more diverse, and this process would become more transparent, and therefore engender greater trust which would bring more people into [the study] over time … There’s just … a lot of knock-on effects there.” (Research staff)
CE for Building Relational Capital
4E	CE to cultivate & maintain long-term relationships	“I think the biggest thing to me is funding community-based research that persists over time…what we hear over and over and over again for our more diverse advisers is you can’t just pop into a community, give them results, and then leave … Increasing funding to maintain relationships over time so that you are able to stay connected to communities and it’s part of your work, I think, is the most important thing … That’s difficult when you have competing people for grants and you might have one grant and then you don’t get the grant the next time … Funding more cohort studies [so] that there’s expected funding over time to keep people engaged, and funding outreach and community engagement is probably something that I would just think would be most helpful.” (Investigator)
		“I don’t think that [the researchers] were really equipped for how long and how deep the effort is needed to create through community engagement over time.” (Research staff)

Table 5. Experiences of “pantomime community engagement”.

	Summary	Illustrative Quotes & Examples
5A	Insufficient resources for CE	“It’s like you have a period of time to recruit what you can recruit … There is no patience from funding groups to the groups that are reaching out to the [community] partners, to these populations. It requires patience. It requires trust-building. It requires relationships … [But] that has not been my experience. You don’t have the luxury, you don’t have the time and resources to continue and maintain relationships with these communities.” (Funder)
5B	Perceived tensions between science & CE	“I totally don’t think that we all recognized … the level that we would have to do [CE] to keep the numbers up… But those are kind of two distinct things that I think at times are in tension with one another.” (Research staff)
		“Somebody [in study leadership] was like, ‘This money, we don’t spend that on engagement’ … [CE] wasn’t a valued activity … She’s like, ‘Why would we spend money on engagement? We should spend it only on science’ … We have no science unless you have engagement … The people that are actually responsible for outreach and engagement are having to fight every day for every dollar.” (Research staff)
5C	“Checkbox” CE	“They’re mostly paying lip service to meaningful inclusion … We’re not doing the work.” (Research Staff)
		“[A researcher] mentioned like ‘We’re doing so much to engage the community,’ because that’s what they want to hear. But in reality, we just don’t have the manpower to do that.” (Research staff)