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Table 3 Partner-reported characteristics (N = 260 partner-completed WE-ENACT, representing 124 projects)

From: Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement

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
  1. aDefined as a person who is an authority in a particular area or topic
  2. bVerbatim responses: Advisory panel member; Community-based organization and free clinic/pharmacy; Chair, parent advisory board; Clinical informaticist; Clinical researcher; Clinical social worker; Community advisor; Community partner intermediary and cultural broker; Disparity expert; Executive director of patient foundation; Long term and post-acute care provider trade association; Parent; Parent and leader of advocacy organization; Patient advisor × 2; Patient advisor/co-author; Patient advocate × 2; Patient and caregiver; Patient and research advocate; Patient and subject matter expert; Patient/consumer/caregiver/family member of patient; Patient family and child advocate; Peer group facilitator; Practice based co-PI; Previously a patient; Professional society representative; Project consultant × 2; Research assistant with lived experience; Research expert × 2; Survivor of child abuse
  3. cItem only asked at Year 1 WE-ENACT
  4. dItem only asked of partner respondents who indicated they previously partnered with the current investigator