Table 2.

Characteristics of patient and public involvement in 97 studies

Information regarding patient and public involvement	No. of Studies
	N = 97
Who Was Involved?†
Patient partners	54 (55.7)
Caregivers or family members	20 (20.6)
Community partners	18 (18.6)
Patient or public organizations	29 (29.9)
End-users, clinical staff	34 (35.1)
How Were They Involved?
Leadership role	9 (9.3)
Membership role	54 (55.7)
Consultation role	34 (35.1)
What Aspects Were They Involved In?†
Choosing/developing research question(s) to ensure relevant research	17 (17.5)
Study protocol development (including REB submission)	42 (43.3)
Grant application to funding agency	11 (11.3)
Selection of primary or secondary outcomes	15 (15.5)
Intervention design and/or delivery	56 (57.7)
Recruitment and/or retention strategies	23 (23.7)
Patient-facing materials design and/or development	44 (45.4)
Data collection	8 (8.2)
Data analysis	2 (2.1)
Interpretation of findings	17 (17.5)
Review or editing of manuscript, reports or lay summaries	16 (16.5)
Co-authorship of manuscript, reports or lay summaries	7 (7.2)
Dissemination of findings (e.g., social media promotion, conferences)	13 (13.4)
Evaluation of PPI impact in the primary study	1 (1.0)
When Were They Involved?
Phase 1 – study conception	9 (9.3)
Phase 2 – study preparation	18 (18.6)
Phase 3 – study execution	13 (13.4)
Phase 4 – data analysis	0 (0.0)
Phase 5 – reporting of findings	4 (4.1)
Throughout study: phases 1–5	45 (46.4)
>1 phase	7 (7.2)
Undefined	2 (2.1)
Recognition of Patient Partner(s) in published manuscript
No	7 (7.2)
in main text only	33 (34.0)
in Acknowledgements section	48 (49.5)
co-author (named)	6 (6.2)
co-author (group)	3 (3.1)
Level of Engagement based on IAP2 Spectrum
Consult	26 (26.8)
Involve	27 (27.8)
Collaborate	35 (36.1)
Empower	9 (9.3)

†more than one option per study possible