Table 5 Impacts of Patient Engagement (N = 30 studies)

Positive Impacts

Negative Impacts

11 (37%) Renewed sense of purpose/agency [7, 45, 47, 51, 53,54,55, 62, 63, 69, 70]

11 (37%) Emotional/peer support [7, 51, 53, 55, 57, 62,63,64, 66, 69, 70]

5 (17%) Emotional vulnerability or emotional distress [7, 47, 55, 71, 72]

10 (33%) Incorporation of patients’ priorities for research and outcomes [7, 24, 50, 51, 54, 56, 57, 61, 65, 67]

8 (27%) Develop new knowledge and skills [45, 51, 55, 59, 60, 62, 63, 71]

5 (17%) Physical/cognitive fatigue [7, 47, 53, 55, 72]

3 (10%) Acquire insights into disease and treatment [51, 55, 69]

Positive Impacts

Negative Impacts

17 (57%) Sensitizes researchers to experiential knowledge not gained at the bench or the bedside. Recognizing human experience [7, 45, 47, 50,51,52, 54, 55, 57, 59, 62, 63, 66, 67, 69, 70, 72]

7 (23%) Challenges negative/ambiguous beliefs and perceptions of utility of patient partnerships [52, 59, 62, 63, 65, 71, 72]

4 (13%) Increase interpersonal skills and highlighted significance of partnerships in research [51, 59, 62, 63]

15(50%) Investment and expenditure of time and resources [7, 24, 45,46,47, 54, 56, 59, 60, 62,63,64, 69,70,71]

2 (7%) Complexity/intensity of the process may serve as an impediment to meeting project timeline [7, 64]

Positive Impacts

Negative Impacts

13 (43%) Improves/informs research design, execution, and translation [7, 51, 54,55,56, 59, 62,63,64, 69,70,71,72]

13 (43%) Research tools (e.g., consent and data collection form), processes (e.g., recruitment and retention), and methods are more relevant [7, 45,46,47, 51, 56, 57, 59, 62,63,64, 70, 71]

11 (37%) Outcomes are identified as being more relevant to patients [46, 50, 51, 54, 63, 64, 66, 69,70,71,72]

11 (33%) Patients’ input offers directions for researchers and research funding agencies – generation of new ideas [24, 45, 48, 49, 51, 52, 57, 61, 65, 67, 68]

9 (30%) Research outputs are more accessible to the public [24, 45, 47, 51, 52, 56, 57, 64, 69]

6 (20%) Research priorities ranked by patients reflect applicability to the lived experience of illness, frailty, and/or treatment [24, 48, 49, 52, 58, 61]

2 (7%) Democratization of allocation of research resources [49, 52]

1 (3%) Increased transparency and accountability for publicly-funded research [55]