Table 1 Patient partner interview quotes: the patient partner journey

Motivations and reasons to become a patient partner

For me, the asthma condition and helping people how to live with asthma.

–Respondent 12

When I had an interview with a [Patient] Partner, I saw the opportunity to give a voice to people who sometimes have no voice. Because precisely the study is focused on Latinos, who are a minority, and Afro-Americans, who are also a minority.

–Respondent 16

And we hope that hopefully, once the research is over, we have helped that many more people, and we have collected a whole lot of data too that helps out with other researchers.

–Respondent 7

But, the realistic fact, if I wasn't being paid, because I do a lot of volunteering in my community, I probably would've participated still because I wanted to know more about the steps, and when you're doing a study in how my voice could make a difference and my input. I just wanted to make a difference. So, I would've probably still been involved. But realistic, as a mom with children, having that funding, that is something to look forward to, because that's a bill for me. That can contribute to food, or other issues, medical costs, household things that I needed. So that funding was really, it was a plus.

—Respondent 2

Initial experiences with the research team

And in the first meeting, too, we do like the small breakout groups. And I remember I was put in one with [the PREPARE Principal Investigator] and he … I was kind of shy to answer, and he said, ‘You as a patient partner, [Respondent 1], what do you think?’ And so, I was like, ‘You want to know what I think? Okay.’ So, it was nice that even though I was kind of shy and quiet he sought me out and was like, ‘No, we want to hear from you. What do you think?’ Even, in breakout groups, I felt like my input was wanted and needed, welcomed in a comfortable environment.

–Respondent 1

Those who did not understand English well and preferred an interpreter, [the research team] accommodated them with their headphones and a professional interpreter.

–Respondent 15

Getting comfortable, feeling valued and respected, and evolving to confidence in the PP role

You could call [members of the PP engagement staff] or any of the other members. Everyone was accessible.

Everyone had a voice…everyone’s participation meant something.

–Respondent 3

[Being invited to meetings and given all the details] makes me feel like they really want me there, they want to hear what I have to say.

–Respondent 6

I know these are just regular people, these are regular people in suits. But it took a couple times meeting with them in board meetings and seeing their presentations and seeing, or even how they talk about their site workers. Like just the way they talk about how much they value them, and how recruitment is so good because we have this Spanish speaker we hired, five Spanish speaking people to enroll patients, and it's just been so great since then because they have culture piece. So just knowing that they valued that cultural piece. They value that, they didn't straight up say, ‘Hey, I really value this cultural piece.’ But just the way that they talked about it.

–Respondent 1

You get a sense of value…that you’re valued because simply by paying an airline ticket.

–Respondent 8

I feel more comfortable now because we have more confidence. We talk more, I know them, and they are like my family. I feel good.

–Respondent 12

What surprised me over time is just how, I just thought we were just kind of like pieces to a puzzle, but I didn't realize how big of a piece we were. […] People are interested in what we have to say, and they are interested in how we're saying is going to affect the study. So that made me feel like, wow, professionally I don't feel this way all the time, but they go out of their way to make sure that we feel like we are valued participants and have something important that they want to know from us.

–Respondent 1

…second family, an asthma family. Our research asthma family.

–Respondent 4