Table 2.
Summary of best practice activities to support patient stakeholder engagement in research identified in 55 articles
| Best practice activity | Article references | n (%) |
|---|---|---|
| Training and education of researchers and patients | 5, 13, 22, 23, 24, 28, 32, 35, 38, 39, 42, 43, 45, 46, 49, 51, 52, 54, 56, 59, 62, 63, 64, 65, 69, 71, 74 | 27 (49) |
| Regular dialogue/Bidirectional communication | 5, 13, 24, 29, 39, 42, 50, 51, 54, 55, 56, 58, 62, 65, 66, 67, 69, 71, 72, 74 | 20 (36) |
| Compensation and reimbursement of out‐of‐pocket expenses | 5, 24, 30, 31, 34, 38, 39, 43, 45, 49, 52, 57, 58, 60, 63, 64, 69, 70, 74 | 19 (35) |
| Select patient partners based on their skills and interests | 23, 24, 31, 33, 34, 35, 38, 43, 45, 55, 58, 60, 62, 63, 67, 69, 71, 73, 74 | 19 (35) |
| Clarify roles of stakeholders | 13, 17, 23, 24, 31, 34, 37, 38, 39, 44, 46, 51, 55, 56, 61, 62, 63, 69, 74 | 19 (35) |
| Ongoing monitoring and evaluation of engagement process | 17, 24, 31, 32, 35, 38, 42, 50, 52, 58, 59, 62, 63, 65, 67, 70, 71, 73 | 18 (33) |
| Involve stakeholders early in research study | 13, 23, 24, 34, 36, 37, 38, 43, 45, 50, 51, 57, 65, 66, 67, 68, 71, 74 | 18 (33) |
| Set and manage expectations/realistic goals | 13, 17, 24, 31, 34, 36, 37, 38, 39, 49, 65, 67, 68, 71 | 14 (25) |
| Regular acknowledgement of stakeholder contributions | 23, 24, 28, 35, 38, 41, 50, 57, 59, 61, 64, 66, 70, 74 | 14 (25) |
| Regular face‐to‐face/in‐person contact | 24, 30, 33, 38, 43, 49, 58, 60, 74 | 9 (16) |
| Appoint a coordinator to manage engagement | 24, 31, 33, 38, 45, 49, 52, 69, 74 | 9 (16) |
| Define scope of engagement for each project | 13, 29, 31, 43, 49, 50, 61, 62, 69 | 9 (16) |
| Use lay language and avoid jargon | 23, 32, 36, 37, 39, 52, 58, 62 | 8 (15) |
| Secure and budget for engagement activities | 31, 32, 37, 56, 60, 63, 69, 74 | 8 (15) |
| Patient & Family Advisory Council (PFAC) model | 17, 34, 38, 50, 54, 55, 74 | 7 (13) |
| Neutral facilitator/moderator | 23, 31, 46, 55, 69 | 5 (9) |
| Accessible/regular meetings | 24, 38, 46 | 3 (5) |
| Use experienced partners as support | 34, 38, 39 | 3 (5) |
| Allow informal socializing/networking | 58, 68, 69 | 3 (5) |
| Work in small groups | 58, 60 | 2 (4) |
| Allow for subcommittees to work on | 45, 63 | 2 (4) |
| Allow time to build relationships | 51, 62 | 2 (4) |
| Maintain continuity of membership | 68 | 1 (2) |
| Involve patient organizations | 44 | 1 (2) |
| Hire staff from community of study | 69 | 1 (2) |