Table 3 Patient partner interview quotes: advice to researchers and those considering becoming patient partners or advisors

Advice to researchers

I think that they need to have Patient Partners because it depends on what community you're dealing with, because when you're dealing with the Black community, they do things a little different, when you're dealing with the Latinos, they're pretty much close to the Black, but when you're dealing with the like of Vietnamese and different cultures that don't do things the way we do things, they need to have a person from that community a part of the research. So, everybody doesn't do things the same in each community, in each race, or they do things a little different. […] So just being versatile with the people that you are researching, just try to have a person that's a part of the same community and the research.

–Respondent 15

Be like [the PREPARE Principal Investigator]. I feel like he is very open to listening to our stories, of “this is how it is for us,” and what he's seeing with his patients. So, I feel like he's very good […] and don't doubt of the competence that the patient partners have.

–Respondent 2

Advice to those considering becoming patient partners or advisors

I would say, if you have the opportunity, to engage. I believe that we are here on this earth to give back into the lives of others, especially people that are suffering or going through battles medically. So, I would say, ‘patients, hey, if you get the opportunity to get involved with a clinical trial, asthma or whatever, do it.’ Because, in that way, the patient is literally reaching into someone else's life and with the goal to help. To give them all the knowledge and the wisdom and the peace of mind, and so forth, as they're going through. You have to give back.

–Respondent 10

Go in with an open mind and be willing to learn and listen. That's about the best advice I can do, because if you go in with an open mind, you're going to hear stuff, you're going to learn more and you're more open for it. Just be open to listen. Listen to other people.

–Respondent 15

Journey is amazing, it will change your life. Just being a participant, being part of it, it will make a difference. Don't be afraid, ask questions. There's no stupid question.

–Respondent 2

And I think that's the key to everything, is knowing the people in your group, taking that time to be personable, care about people. Unfortunately, in this world, there's not enough of that going on in everything, just ask somebody how they're doing, little stuff like that is very important. But I think, for us, we have a really good group and I pray that everybody else would have the same experience that we have, but I really like looking, care about and pray for everybody in my group and their wellbeing and stuff. It really is a second family to me.

–Respondent 5