Table 1.

Barriers and challenges to PFAC member engagement in research

Code and code definition	Representative quotes
Theme 1: Individual PFAC member reluctance
1.1 Distrust of researcha: Patient stakeholders having a distrust of research process, and the institutions	“There is a great deal of suspicion amongst groups that have been disenfranchised when they hear the word research” (PFAC member)	“Reading levels and language that they cannot understand raises a level of suspicion…” (PFAC member)
1.2. Questioning the value of research: A need to show patients why patient involvement in research is important	“The challenging part for me was … to help them to understand that this was an important project … for them because it would have great implications … specifically because it was designed for their population”(PFAC leader)
1.3. Fears of feeling useless: Patients do not participate as they feel too uncomfortable to share their views because they might be perceived as not informed	“You feel stupid asking questions, and you don’t want to slow down the process. You tend to hold back” (PFAC member)	“They’re intimidated. When they sit and they see all these wonderful, educated faces around the table, they get a little nervous. They’re like – there are six doctors and me” (Hospital leader)
1.4. Tokenisma: Participants feel like they are just there to satisfy a condition “checking off a box”	“One of the greatest challenges for me was I felt that my engagement wasn’t appreciated, that the information that I brought to the table wasn’t viewed in a way that it was going to be able to be incorporated into the research to really help people. The bottom line was I just didn’t feel like I was there to make a difference. I was just there to be on the committee, not to really provide input” (PFAC member)
Theme 2: Lack of skills and training
2.1. Lack of skills and experience (patients)a: Patients are reluctant to engage in research because they feel they do not have the skills	“The patients have a huge learning curve ahead of them. Some of our panelists had some form of science background … but many of them, in fact most of them, don’t. So coming into to research was a whole new thing for a lot of these people” (Researcher)	“I think the lack of knowledge of the Institutional Review Board (IRB), research methods and processes is a barrier” (Researcher)
2.2. Lack of skills and experience (researchers): Researchers not trained/skilled in patient engagement in research	“I think the challenge is knowing how to do it [engagement], I mean … I don’t think I was ever trained on how to do it” (Researcher)	“We’re not trained in how to engage… I think it goes back to how we educate researchers on how to engage and why it’s important” (Researcher)
2.3. Eliciting individual voicesa: In big PFAC groups, it is difficult to make each voice important	“When I get everybody in a room together … people tend to agree with each other a lot, but also … you have to really know and have experience in doing group meetings. You have to really understand group dynamics and be able to make sure everybody has a voice and everybody feels free to give their opinions…”(PFAC leader)
Theme 3: Problems connecting with the right person at the right time
3.1 Lack of diversitya: Difficulties representing diversity in engagement efforts	“We have so many different cultures represented in our hospital, but we don’t really have enough cultures represented” (PFAC member)	“I think you also need those that are non-English-speaking or different cultures. I think often there is also a cultural aspect that isn’t integrated as much…” (Researcher)
3.2. Issues with recruitment and sustaining engagement: Finding the appropriate time to recruit patients and maintain engagement	“We’ve had it where it’s not a perfect fit. They’re too angry. They’re too upset. They’re still grieving. It doesn’t mean you’re never going to participate. It just might be kind of hard right now” (PFAC leader)	“I think life gets in their way, just like it does ours … I’m asking them to volunteer this time when they’re just getting their lives back together” (Hospital leader)
3.3. Time Commitmenta: Does it fit in the participant’s schedule? Are participants willing to continually engage despite the potentially long research period?	“I think time is a barrier. Sometimes we try to fit it into an 8:00-to-4:30, Monday-through-Friday thing, when many of the researchers are available, as opposed to the patient…We’re doing it on our time clock, not their time clock” (Hospital leader)	“I would say to be mindful of the limitations that people have and how that affects their ability to engage in research – so in terms of what someone’s work schedule is and what responsibilities they have outside of that work schedule influences how available they are to contribute” (PFAC member)

PFAC = patient and family advisory council

^aCodes are similar to those previously identified regarding general patient engagement in research