Table 3 Partner-reported characteristics (N = 260 partner-completed WE-ENACT, representing 124 projects)
Characteristic | Year 1 WE-ENACT (n = 123) | Year 2 WE-ENACT (n = 137) | Total (N = 260) |
|---|---|---|---|
Age (mean ± SD years) | 55 (± 13) | 54 (± 13) | 54 (± 13) |
Missing | 8 | 9 | 17 |
Gender (n, %) | |||
Female | 79 (68%) | 96 (73%) | 175 (70%) |
Male | 37 (32%) | 36 (27%) | 73 (29%) |
Transgender | 1 (< 1%) | 0 (0%) | 1 (< 1%) |
Missing | 6 | 5 | 11 |
Race (n, %) | |||
American Indian/ Alaska Native | 0 (0%) | 3 (2%) | 3 (1%) |
Asian | 4 (3%) | 5 (4%) | 9 (4%) |
Black or African American | 12 (10%) | 20 (15%) | 32 (13%) |
Native Hawaiian or other Pacific Islander | 1 (< 1%) | 1 (< 1%) | 2 (< 1%) |
White | 95 (80%) | 98 (75%) | 193 (78%) |
Other | 7 (6%) | 3 (2%) | 10 (4%) |
Missing | 4 | 7 | 11 |
Ethnicity (n, %) | |||
Hispanic/Latino | 7 (6%) | 5 (4%) | 12 (5%) |
Missing | 5 | 6 | 11 |
Primary partner community represented (n, %) | |||
Patient/consumer | 35 (32%) | 37 (28%) | 72 (29%) |
Clinician | 18 (16%) | 14 (11%) | 32 (13%) |
Caregiver/family member of patient | 12 (11%) | 18 (14%) | 30 (12%) |
Patient/caregiver advocacy organization | 17 (16%) | 7 (5%) | 24 (10%) |
Community-based organization | 5 (5%) | 12 (9%) | 17 (7%) |
Subject matter expert a | 7 (6%) | 8 (6%) | 15 (6%) |
Clinic/hospital/ health system representative | 5 (5%) | 7 (5%) | 12 (5%) |
Payer (public or private insurance) | 0 (0%) | 4 (3%) | 4 (2%) |
Policy maker (government official) | 0 (0%) | 2 (2%) | 2 (< 1%) |
Other b | 11 (10%) | 23 (17%) | 34 (14%) |
Missing | 14 | 5 | 18 |
Educational attainment (n, %) | |||
Less than high school (did not complete some or all of lower and upper secondary education) | 0 (0%) | 1 (< 1%) | 1 (< 1%) |
High school graduate (equivalent to completion of upper secondary education) or General Education Development Completion (alternative completion of high school) | 2 (2%) | 3 (2%) | 5 (2%) |
Post high school training other than university (vocational or technical) | 3 (3%) | 4 (3%) | 7 (3%) |
Some university attendance | 16 (13%) | 25 (19%) | 41 (16%) |
University graduate | 28 (23%) | 31 (23%) | 59 (23%) |
Postgraduate education | 71 (59%) | 69 (52%) | 140 (55%) |
Missing | 3 | 4 | 7 |
Previously partnered on other research project c (n, % yes) | 64 (54%) (n = 119) | n/a | n/a |
Previously partnered with current investigators c (n, % yes) | 46 (42%) (n = 109) | n/a | n/a |
Time worked in years with current investigators c,c,d (mean ± SD) | 4.3 ± 3.0) (n = 45) | n/a | n/a |
Study phase(s) in which engaged | |||
Researcher understanding of patient and stakeholder needs | 96 (86%) | 102 (77%) | 198 (81%) |
Research topics and/or research questions | 43 (38%) | 37 (28%) | 80 (33%) |
Interventions and/or comparators | 44 (39%) | 34 (26%) | 77 (32%) |
Outcomes and/or measurement | 62 (55%) | 56 (42%) | 118 (48%) |
Recruitment: Training research staff on how to recruit and work with patients | 35 (31%) | 23 (17%) | 58 (24%) |
Recruitment and retention: Finding and/or retaining participants | 49 (44%) | 43 (33%) | 92 (38%) |
Data collection | 23 (21%) | 20 (15%) | 43 (17%) |
Data analysis and/or results review | 39 (35%) | 56 (42%) | 95 (39%) |
Data application to real world settings | 34 (30%) | 42 (32%) | 76 (31%) |
Dissemination | 22 (20%) | 40 (30%) | 62 (25%) |
Missing | 11 | 5 | 16 |