TABLE 3.

Overarching questions about current state of engagement.

Overarching question	Representative quote
What does patient engagement entail?	“We talk a lot about what does engagement mean to a patient who participates in research. What are they looking for and what do they want from participating in a research study? What are their needs?”
	“You know participant engagement is not the same as participant recruitment and retention. Those are separate. You can, in engagement of community, ask how to recruit and how to retain.”
	“Many researchers think that patient engagement means increasing recruitment into clinical trials period, end of story. Obviously, that’s a big part of it, but there’s no way that should be all of it.”
What are the barriers to implementing engagement strategies?	“It’s still a real challenge to reach people who are not able to connect with our resources. It could be due to literacy, access to technology, or even just not having the time to do so.”
	“Projects take for granted that diverse research participation is going to result in diverse benefit to diverse populations. We do a disservice to our research participants by implying that they should take this for granted.”
	“[Remote] enrollment is more transactional. You’re not really getting to know anybody. You say sign this form online, fill out this questionnaire, send your sample. But in other situations, you must be relational and build trust first.”
How do we know if the engagement strategies are working?	“It’s really that we need to understand what engagement produces … and really trying to produce social change that is needed for precision medicine and public health. But we do not yet know the impact of engagement.”
	“These are contributions from living humans who really care deeply about the research that is going on because of their participation, but we still have not figured out if our digital projects, products, and services are ensuring that they have good experiences and that we are meeting their needs.”
	“Engagement strategies are really at the front end, but we’re going to encounter a whole other set of issues when we return information folks in the study to people. Would not it be good to know how that’s landing?”