Table 9 PPEET results: Strategies to improve patient engagement (PE)
From: Lessons learned in measuring patient engagement in a Canada-wide childhood disability network
Theme n = number of utterances | Subtheme n = number of utterances % of Theme | Sub-subtheme n = number of utterances % of Sub-subtheme | Description | PAG utterances n (%) | RES utterances n (%) | COMM utterances n (%) | Total utterances n (%) |
|---|---|---|---|---|---|---|---|
Strategies to improve PE N = 45 | Actions taken to ensure supports and mitigate barriers N = 1 (2.2) | Refers to the communication between PAGs and RES to demonstrate where change has been implemented | 0 | 1 | 0 | 1 | |
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Allow more flexibility in PP engagements N = 1 (2.2) | Refers to ensuring that PAGs continue to want to actively engage without feeling pressure to engage | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Appreciation initiatives N = 1 (2.2) | Refers to measures taken to boost team morale and sense of belonging | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Appropriate renumeration and other incentives N = 4 (8.9) | Refers to ensuring that PAGs are adequately remunerated given the time and effort they are putting in, and considering the familial situation they’re dealing with | 0 | 2 | 2 | 4 | ||
Total | 0 (0.0) | 2 (50.0) | 2 (50.0) | 4 (100.0) | |||
Central database of to dos for PP to make sure no one is overwhelmed with assignments N = 1 (2.2) | Refers to ways to mitigate the feeling of being burdened with work from CB | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Clarity on goals, outputs and contributions N = 10 (22.2) | Refers to more clearly informing PAGs and COMM what the goals are, and being more transparent with expectations and timelines | 1 | 5 | 4 | 10 | ||
Total | 1 (10.0) | 5 (50.0) | 4 (40.0) | 10 (100.0) | |||
Clearer goals re meetings N = 2 (4.4) | Refers to being clearer earlier on before the meetings so COMMs can get an idea of how their input can be useful | 0 | 0 | 2 | 2 | ||
Total | 0 (0.0) | 0 (0.0) | 2 (100.0) | 2 (100.0) | |||
Crosslinkages between committees N = 1 (2.2) | Refers to ideas regarding how engagement can be increased without adding extra hours to the schedule by combining committee goals/research projects | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Ensure balance between PP voices N = 2 (4.4) | Refers to making sure that even those who do not speak as often can still make meaningful contributions to the projects | 0 | 2 | 0 | 2 | ||
Total | 0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | |||
Finding balance between parent partners and youth partners’ voices N = 1 (2.2) | Refers to expanding and diversifying the participants so that one type of voice doesn’t overpower another | 0 | 0 | 1 | 1 | ||
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
Inperson meetings N = 1 (2.2) | Refers to the desire to meet in person | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Keep up with promises to give feedback N = 2 (4.4) | Refers to providing feedback on the impact of PAGs throughout the project (when ideas implemented) and also at the end once project results are analysed | 0 | 0 | 2 | 2 | ||
Total | 0 (0.0) | 0 (0.0) | 2 (100.0) | 2 (100.0) | |||
Making sure to act on all recommendations N = 2 (4.4) | Refers to acting in one way or another on recommendations given by PAGs | 0 | 0 | 2 | 2 | ||
Total | 0 (0.0) | 0 (0.0) | 2 (100.0) | 2 (100.0) | |||
Managing expectations N = 1 (2.2) | Refers to ensuring PAGs and COMs are aware of limitations of the “research world” | 0 | 0 | 1 | 1 | ||
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
PP on REB reviews N = 1 (2.2) | Refers to needing PPs at the stage of REB and not only after the project has been approved | 1 | 0 | 0 | 1 | ||
Total | 1 (100.0) | 0 (0.0) | 0 (0.0) | 1 (100.0) | |||
Recruit more diverse members N = 7 (15.6) | Refers to the desire to recruit more diverse members as a way to reflect the health care system and get input from underrepresented groups | 1 | 3 | 3 | 7 | ||
Total | 1 (14.3) | 3 (42.9) | 3 (42.9) | 7 (100.0) | |||
Redirect funding to better support PPs in different initiatives N = 1 (2.2) | Refers to the possibility of using funding towards outreach projects as a way to obtain more inclusive perspectives | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Strengthen communication channels N = 5 (11.1) | Refers to obtaining feedback in many ways rather than just meetings, for example through emails or one on one meetings | 0 | 3 | 2 | 5 | ||
Total | 0 (0.0) | 3 (60.0) | 2 (40.0) | 5 (100.0) | |||
Team building exercise N = 1 (2.2) | Refers to methods that can be implemented to improve team morale, coffee meetings, thank-you cards, to show greater appreciation for their work | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Grand total | 3 (6.7) | 23 (51.1) | 19 (42.2) | 45 (100.0) |