Table 4 Facilitators to wider Network engagement most frequently reported by CHILD-BRIGHT patient-partners and researchers
From: Patient engagement in a national research network: barriers, facilitators, and impacts
Facilitators | |
|---|---|
Patient-partners (total number of utterances = 40a) | Researchers (total number of utterances = 15b) |
1. Factors specific to researchers (14 utterances) (Openness of researchers to feedback; Liking the researchers; Having a previous work relationship with researcher; Sense of commitment to their research) “I would say that there are some really amazing researchers in CHILD-BRIGHT who are very, very supportive of patient-partners and I think that’s important to say.” | 1. Communication and having a supportive Network (6 utterances) (Regular follow-ups, various communication methods) “In terms of support, I find the Network is very open to hearing about other ways to engage with patients and families… I think that's something that I really like about the Network, being able to reach out.” |
2. Factors specific to patient-partners (10 utterances) (Motivation to contribute; Not being intimidated or scared) “The benefit is we're clearing the brush away as we're forging the path and we're right at the front there. I think the intrinsic benefit is giving me that energy to keep doing that.” | 2. Providing different engagement opportunities and establishing meaningful collaborations with patient-partners (6 utterances) “I mean we’re talking about people who have so many demands on their time, that we try very hard not to make demands that are not, that are not really important. So we don’t trivialize their involvement. We structure it so that they are doing things that make a difference.” |
3. Communication (9 utterances) (Regular follow-ups; Different methods of communication (newsletter, conferences, meeting); Accessible information (accessible format, clear, easy to ask and get questions answered) “They're very good at, in meetings, making sure that it's in accessible format for everyone and providing translations and everything, so that's good. If we ever have any questions it's always easy to follow up […] it's really easy to reach out… and have all your questions answered so that stuff is great.” | |
4. Having a role within the Network or having a supportive Network (5 utterances) “I had a very strong relationship with the researchers, and I got the newsletters but I wouldn't sayI understood what the Network was or did prior to becoming [role within Network}” | |