Table 2 Facilitators to engagement with research projects most frequently reported by CHILD-BRIGHT patient-partners and researchers

Patient-partners

(total number of utterances = 65^a)

Researchers

(total number of utterances = 69^b)

1. Communication (29 utterances)

(National/group meetings; Using different methods of communication; CHILD-BRIGHT as a safe space to speak up; Open communication; Face-to-face interactions; Check-ins)

“Upon learning that there is a Zoom phone app, one patient-partner shared: “I can [now] walk around with my earbuds and still administer medications or check on my son [during meetings]. So, that was wonderful to know that those resources were available.”

1. Communication (14 utterances)

(Having National/group meetings; Using different methods of communication; Seeing CHILD-BRIGHT as a safe space to speak up; Open communication; Check-ins)

“The way the conferences have been run has been quite a success in terms of bringing a lot of patient family partners together in the conference along with researchers […] I think that’s been a real strength.”

2. Factors specific to patient-partners

(8 utterances)

(Experience/skills; Motivation and commitment)

“We all come from different backgrounds. Many of us have several degrees, many of us have our own businesses, or jobs that we do in addition to parenting and that can actually be useful too in the work that [researchers] do.”

2. Factors specific to patient-partners

(6 utterances)

(Experience/skills; Motivation and commitment; Bringing different perspectives to the table)

“Sharing perspectives has been [very useful] […] the more perspectives you can bring in from people from different backgrounds that are connected somehow, or stakeholders, I think that can only improve the direction.”

3. Respect, trust, and partnership (5 utterances)

(Importance of mutual respect and trust between pt-partners

and researchers; Importance of reciprocal partnerships where

both parties benefit)

“When you take the time and effort to do that face to face, and everybody gets to know one another and knows what they're there for, why they're there and what they hope to get out of it, you do have that kind of respect and trust that then informs the rest of the engagement.”

3. Flexibility (6 utterances)

(CHILD-BRIGHT providing flexibility to researchers in participation, extensions, scheduling meetings)

“For our project we’ve had to extend our timeline a few times and CHILD-BRIGHT hasn’t put up any barriers in doing that. In fact, they’ve been very supportive knowing that to do work at the level of engagement that they want and that we want, it was a no-brainer to extend the timeline.”

4. Factors specific to researchers (5 utterances)

(Openness of researchers to feedback and collaboration; Previous connection to researchers)

“Sometimes it comes down to really simplistic things. For one project I was with previously, we all got together at a research conference. It was nice when they said, ‘We want you to present the poster’. I thought that was just really wonderful in the sense of saying, ‘Well, you’re a part of the team, you can explain as well.’”

4. Respect, trust and partnership (5 utterances)

(importance of mutual respect and trust between patient-partners and researchers; importance of reciprocal partnerships where both parties benefit)

“Entering into these partnerships with respect, it is very important”

5. Integrating feedback and explaining why feedback can’t be used (4 utterances)

“They validated what we talked about, they didn’t gloss it over like a professional can do or simplify it […] they [researchers] listen, they also model how to integrate different perspectives.”

5. Compensation and flexibility in compensation

(5 utterances)

(Having compensation guidelines; Offering more based on contribution)

“In terms of the compensation process, there's a standard amount of compensation, but if this particular person has done XYZ, we would recommend an additional amount for that person.”