Table 2a.
Patient engagement characteristics of included studies (n=30).
| Study details | Type of stakeholder engaged |
Number of patient partners engaged | Type of engagement (duration) | |||||
|---|---|---|---|---|---|---|---|---|
| Patients | Community members | Members of patient organizations | Family members | Caregivers | Friends | |||
| Rheault et al. [18] | √ | √ | √ | N/R | Pre-conference and conference events (NR) | |||
| van den Berg et al. [19] | √ | √ | √ | √ | N/R | Face-to-face workshop (2-days) | ||
| Boenink et al. [20] | √ | N/R | One-time engagement (N/R) | |||||
| Russell et al. [21] | √ | √ | √ | √ | 66 | 2 events (1-year apart) with email follow-up (N/R) | ||
| Tamagnini et al. [22] | √ | √ | √ | 3 | N/R | |||
| Frazier et al. [23] | √ | √ | √ | √ | 4885 | One-time engagement (N/R) | ||
| Talebizadeh et al. [24] | √ | √ | √ | 12 | Attendance at 6 sessions over a 12-month period | |||
| McDonnell et al. [25] | √ | 523 | One-time engagement (N/R) | |||||
| Parsons et al. [26] | √ | 63 | One focus group (90 min) | |||||
| Zoeller [27] | √ | √ | 71 | Attendance at meetings (Two weekends) | ||||
| Filocamo [28] | √ | N/R | Attendance at several meetings and workshops (N/R) | |||||
| Black and Brockway-Lunardi [29] | √ | √ | N/R | N/R | ||||
| Godard et al. [30] | √ | 1,568 | One-time engagement (N/R) | |||||
| *Haga et al. [31] | √ | 159 | 8 group sessions (N/R) | |||||
| *O'Daniel et al. [32] | √ | 159 | 8 group sessions (N/R) | |||||
| Terry et al. [33] | √ | N/R | 2-year project | |||||
| Pulver et al. [34] | √ | 53 | One-time engagement (N/R) | |||||
| Arturi [35] | √ | √ | N/R | N/R | ||||
| Baart and Abma [36] | √ | √ | 16 | 1-year project | ||||
| Boon and Broekgaarden [37] | √ | √ | N/R | N/R | ||||
| Van Olphen et al. [38] | √ | √ | √ | 9 | N/R | |||
| Haddow et al. [39] | √ | √ | √ | N/R | N/R | |||
| Riter and Weiss [40] | √ | √ | √ | √ | √ | 12+ | N/R | |
| Mollan et al. [42] | √ | √ | √ | √ | 122 | 18-month project | ||
| Costello and Dorris [43] | √ | √ | √ | √ | 41 | Attendance at a conference and a workshop (N/R) | ||
| Davies et al. [45] | √ | N/R | Attendance at three workshops and completion of a survey (N/R) | |||||
| Taruscio et al. [46] | √ | √ | 3 | Governing Board member (3 years) | ||||
| Moore et al. [47] | √ | √ | 4 | Attendance at four meetings (6 h) | ||||
| Mahler and Besser [48] | √ | N/R | N/R | |||||
| Birch et al. [49] | √ | √ | 9 | 4-year project | ||||
| Total (%)⁎⁎ | 20 (69) | 16 (55) | 11 (38) | 11 (38) | 7 (24) | 1 (3) | ||
⁎
Denotes articles describing the same study.
⁎⁎
Percentages were generated using n=29 as the denominator.