Table 2.
Investigator-reported description of partner engagement in their projects (N = 235 projects)
| Characteristics | Year 1 progress reports (n = 91) |
Year 2 progress reports (n = 144) |
Total (N = 235) |
|---|---|---|---|
| Partner communities engaged a(n, %) | |||
| Clinician | 83 (91%) | 126 (88%) | 209 (89%) |
| Patient/consumer | 82 (90%) | 125 (87%) | 207 (88%) |
| Patient/caregiver advocacy organization | 56 (62%) | 84 (58%) | 140 (60%) |
| Clinic/hospital/ health system representative | 53 (58%) | 81 (56%) | 134 (57%) |
| Caregiver/family member of patient | 43 (47%) | 77 (53%) | 120 (51%) |
| Subject matter expertb | 43 (47%) | 78 (54%) | 121 (51%) |
| Training institution representativec (non-research health professions including educator) | 15 (16%) | 22 (15%) | 37 (16%) |
| Policy maker (government official) | 10 (11%) | 28 (19%) | 38 (16%) |
| Payer (public or private insurance) | 13 (14%) | 22 (15%) | 35 (15%) |
| Life sciences industry representative | 2 (2%) | 9 (6%) | 11 (5%) |
| Purchaser of insurance plans (small or large employers) | 0 (0%) | 5 (3%) | 5 (2%) |
| Other d | 26 (29%) | 68 (47%) | 94 (40%) |
| Approaches to engaging partners a (n, %) | |||
| Patient/stakeholder research team members | 74 (81%) | 118 (82%) | 192 (82%) |
| ➢ Team members as co-investigators e | 44 (59%) | 63 (53%) | 107 (56%) |
| Advisory groups | 72 (79%) | 123 (85%) | 195 (83%) |
| Opinion polls, surveys or interviews | 39 (43%) | 53 (37%) | 92 (39%) |
| Other f | 4 (4%) | 13 (9%) | 17 (7%) |
| Study phases in which partners were engaged a (n, %) | |||
| Research topics and/or research questions | 54 (59%) | 90 (63%) | 144 (61%) |
| Interventions and/or comparators | 62 (68%) | 101 (70%) | 163 (69%) |
| Outcomes and/or measurement | 71 (78%) | 106 (74%) | 177 (75%) |
| Other aspects of study design | 61 (67%) | 94 (65%) | 155 (66%) |
| Recruitment and/or retention | 53 (58%) | 97 (67%) | 150 (64%) |
| Data collection | 29 (32%) | 64 (44%) | 93 (40%) |
| Data analysis and/or results review | 34 (37%) | 98 (68%) | 132 (56%) |
| Dissemination | 24 (26%) | 77 (53%) | 101 (43%) |
aNot mutually exclusive
bDefined as a person who is an authority in a particular area or topic
cDefined as those who deliver health professional education include public and private universities and colleges, individuals affiliated with the delivery or administration of health professional education, and trade or professional associations representing these institutions, organizations, and individuals (e.g., dean of a nursing school, director of a residency program, and manager of a provider of continuing medical education)
dVerbatim descriptions of partners include: biostatisticians, case managers, clinical investigators, community health worker organizations, community-based organizations, community residents, dietitians, educational institutions, National Institutes of Health, nurses, professional organizations/societies, regulatory/compliance professionals, support group organizations, and technology advisors
eAsked only to those reporting partners as research team members
fVerbatim responses: working with partners on producing and delivering conference presentations, engaging partners in conversations to inform study, partners serving as peer buddies, enlisting partners as pilot study participants, and investigators and partners co-presenting webinars