Table 6 PPEET results: Advantages of patient engagement (PE)

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)