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 utterancesn (%) | Total utterances n (%) |
---|---|---|---|---|---|---|---|
ADVANTAGES OF PE N = 109 | Connections N = 4 (3.7) | Collaboration opportunities and human connections N = 2 (50.0) | Refers to not only collaborating with others but also enjoying the overall collaboration experience | 2 | 0 | 0 | 2 |
Total | 2 (100.0) | 0 (0.0) | 0 (0.0) | (100.0) | |||
Close communication with research team N = 1 (25.0) | Refers to being able to get first-hand experience with research and better understanding it | 1 | 0 | 0 | 1 | ||
Total | 1 (100.0) | 0 (0.0) | 0 (0.0) | 1 (100.0) | |||
Bridging gaps between people involved N = 1 (25.0) | Refers to ensuring that everyone involved is aware of what is going on | 0 | 0 | 1 | 1 | ||
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
Learning and voicing N = 12 (11.0) | For PP—having a chance to advocate for self and peers N = 3 (25.0) | Refers to developing knowledge about how to advocate and then being able to implement these newly learned strategies | 0 | 0 | 3 | 3 | |
Total | 0 (0.0) | 0 (0.0) | 3 (100.0) | 3 (100.0) | |||
Learning about others’ perspectives and CEC mandate N = 2 (16.7) | Refers to the general sentiment about appreciating learning from others | 0 | 1 | 1 | 2 | ||
Total | 0 (0.0) | 1 (50.0) | 1 (50.0) | 2 (100.0) | |||
Learning about SPOR N = 6 (50.0) | Refers to learning about SPOR from all perspectives and how to best implement it | 0 | 2 | 4 | 6 | ||
Total | 0 (0.0) | 2 (33.3) | 4 (66.7) | 6 (100.0) | |||
Quick adaptation to the changes in interactions related to the pandemic N = 1 (8.3) | Refers to members working hard to ensure that interactions were maintained despite the pandemic | 0 | 1 | 0 | 1 | ||
Total | 0 (0.0) | 1 (100.0) | 0 (0.0) | 1 (100.0) | |||
Research project benefits N = 93 (85.3) | Improved recruitment and or research methodology N = 14 (15.1) | Refers to the improvements that have been made to various research projects when considering the PAG’s input and perspective | 0 | 14 | 0 | 14 | |
Total | 0 (0.0) | 14 (100.0) | 0 (0.0) | 14 (100.0) | |||
Improved relevance of knowledge translation and dissemination N = 15 (16.1) | Refers to the ways PAGs and COMs have greatly improved knowledge translation and communication within their respective research projects | 1 | 11 | 3 | 15 | ||
Total | 1 (6.7) | 11 (73.3) | 3 (20.0) | 15 (100.0) | |||
Keeping the research team on track N = 1 (1.1) | Refers to COM ensuring that the research team is following a respected timeline and knows the extent of what research is expected to be done | 0 | 0 | 1 | 1 | ||
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
Pilot testing and modifications to the protocol N = 2 (2.2) | Refers to the important role played by participants in the implementation of the research process | 0 | 2 | 0 | 2 | ||
Total | 0 (0.0) | 2 (100.0) | 0 (0.0) | 2 (100.0) | |||
PP providing input on how to better engage patients N = 1 (1.1) | Refers to helping implement methods so that patients can all be engaged in the projects in some way or another | 0 | 0 | 1 | 1 | ||
Total | 0 (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
PP steering actions right from the start N = 1 (1.1) | Refers to ensuring patients are at the forefront of research projects right away | 0 | 0 | 1 | 1 | ||
Total | (0.0) | 0 (0.0) | 1 (100.0) | 1 (100.0) | |||
Understanding gaps in knowledge that needs to be filled N = 2 (2.2) | Refers to PAGs being able to identify gaps in the knowledge and advise research team of these gaps early | 0 | 0 | 2 | 2 | ||
Total | 0 (0.0) | 0 (0.0) | 2 (100.0) | 2 (100.0) | |||
Valuable input making research more relevant, and representative of end users’ needs N = 57 (61.3) | Refers to the time and feedback that has come from PAGs and COMs which have led to positive research developments and implementation of more user-friendly strategies | 4 | 40 | 13 | 57 | ||
Total | 4 (7.0) | 40 (70.2) | 13 (22.8) | 57 (100.0) | |||
Total | 8 (7.3) | 71 (65.1) | 30 (27.5) | 109 (100) |