Table 3.

Recommendations for Recruiting PFAC Members From Hard-to-Reach Groups—Code, Code Definitions and Representative Quotes

Code	Code Definition	Representative Quotes
1. Using culturally appropriate communication	Examples of using culturally appropriate language (verbal and print) when communicating with different groups of patients	“So you have to be very sensitive to these things… in terms of, are you addressing their core values and leveraging their core values in the language choice, the word choice, appropriate language, and cultural expectations with those interaction” (PFAC leader).
		“I think, 60%, their primary language is Spanish… we hired a Spanish-speaking pharmacist who is fully fluent Spanishspeaking. So we made sure that we never had to turn a patient down” (researcher).
2. Building trust and community between PFAC members	Suggestions for building trust and sense of community between PFAC members especially those from hard-to-reach groups. PFAC members feel more engaged if they know there are other members and can interact with them.	“It solidifies a group, just like it does with our peers and our colleagues. So, how do we advance those relationships? We spend time together…” (PFAC member). “They’ve asked us for very specific things, and one of the things they’ve asked us for is a document, with each of their pictures and a little background about them and contact information. Everyone agreed that they want to be in touch with each other, so they could actually call each other, even during the downtime. That was one thing they asked for” (PFAC leader).
3. Breaking down hierarchies and power dynamics between PFAC members and PFAC leaders/researchers	Acknowledgment of the fact that actual and perceived hierarchies and power dynamics exist between PFAC leaders/researchers and PFAC members. Specific and targeted activities should take place early during the engagement process to break these down. This will allow PFAC leaders/researcher and PFAC members to be more equal, and this facilitates engagement.	“They come in, and they sign in. Everyone signs in. And we have name tents so that everybody can be called by their first name… when we’re in these councils, a physician can look at someone and say, ‘Jane, what do you think about that?’ It’s that community and the partnership” (PFAC leader). “I think, as patients and caregivers, we think that the investigators or hospital staff are always going to be the experts, so it’s, in a way, a top-down sort of relationship…but I think it’s really important to remember that researchers and hospital staff don’t necessarily know how to engage patients and caregivers. I think it’s a 2-way street, that we can all be respectful to one another” (PFAC member).
4. Having a diverse leadership team	Diverse representation in the PFAC leadership team allows those from hard-to-reach groups identify with leadership and allows them to feel more comfortable participating.	“I think it’s very important to reach people where they are. If you have someone in your leadership group—or 2 or 3 people in your group—that looks like the population you’re representing, it’s much easier to reach them” (researcher).
5. Setting transparent expectations	PFAC members should be told what they are getting into from the beginning in terms of research pace, time commitment, what they are expected to do and not do; PFAC members given specific tasks/goals.	“I can tell you from our experience …our patients and families like to see information upfront. When we have information that needs to be reviewed, or patient education material, those types of things, they like to see it upfront, prior to coming into a meeting…” (PFAC leader).