Table 1 Barriers to engagement with research projects most frequently reported by CHILD-BRIGHT patient-partners and researchers
From: Patient engagement in a national research network: barriers, facilitators, and impacts
Barriers | |
|---|---|
Patient-partners (total number of utterances = 57a) | Researchers (total number of utterances = 42b) |
1. Communication challenges (25 utterances) (Unclear expectations and roles; Lack of follow-up; Logistics of meetings; Being in different time zones; Lack of in-person communication; Feeling excluded; Use of academic jargon) “Sometimes communication can be a challenge in terms of assumptions about what I would think my role would be. They would have a different idea than what I would.” | 1. Communication challenges (11 utterances) (Unclear expectations and roles; Lack of follow-up; Logistics of meetings; Being in different time zones; Lack of in-person communication; Lengthy questionnaires) “I think closing the loop [follow up on how patient-partner feedback was used] has been a real big challenge for us. Even though we know it's important, and we value it, it's an extra step right that we don't typically do when we're a research project. We just make decisions, and we move forward with them.” |
2. Factors specific to patient-partners (13 utterances) (Time limitation and working schedule; Lack of related experience; Role recognition; Homogeneity of patient-partners; Engagement can be too scientific and methodological for patient-partners) “When I started out, I had no idea of how much time [I’d spend]. I'm spending much more time than I expected to spend on it… this varies a lot but certainly in at least two full days a week on average.” | 2. Lack of guidelines, framework, and structure (7 utterances) (Lack of guidelines about: how and when to engage, recruiting patient-partners, infrastructural support, engagement curriculum/framework) “Very quickly, I realized that these families, we needed a formal curriculum for [patient engagement]. There is a skill set that the rest of us had that these families did not have, as gifted as they were, to do this. So, I feel like there are certain parts of family engagement that require curriculum and training that we did not have.” |
3. Difficulty maintaining engagement over time (6 utterances) “Waiting, having a patient-partner sit on the sidelines doing nothing for four or five months while [Research Ethics Board] approval is gained, might seem like nothing to the research team, but it may be a whole lot to a particular patient-partner who says, ‘I'm out of the loop completely’.” | 3. Having to learn how to work together and achieve genuine collaboration (5 utterances) “A big thing that we found early on was that we need to work a little bit to make [the partnership] reciprocal. So that it felt like we weren't always only talking about what we need … and that we were listening to them.” |
4. Having to learn how to work together and achieve genuine collaboration (4 utterances) “There's been a challenge sometimes in achieving genuine collaboration. Sometimes that means being candid with people. […]. What happens sometimes is there's a dynamic whereby you're there to point out problems and to press for change.” | 4. Difficulty maintaining engagement over time (4 utterances) “…Sometimes research can be very slow and it’s a bit discouraging sometimes for patient- and family partners to be involved because they’re all excited to be a part of it, but then research projects go on for years and years […], and so I think sometimes that can be a bit disheartening.” |
5. Lack of patient-partner feedback integration (4 utterances) “Not everything I say is relevant or should be taken into account but I know the researchers on [a project external to CHILD-BRIGHT] are very, very careful, even if they're going to dismiss what we say, … that is not the case with every single researcher that I've come in contact with at CHILD-BRIGHT.” | 5. Factors specific to patient-partners (4 utterances) (Time limitation and working schedule; Lack of related experience; Role recognition; Homogeneity of patient-partners) “The complexity of their [patient-partners] lives makes it extraordinarily difficult to ask them” |