Skip to main content

Table 2 Investigator-reported description of partner engagement in their projects (N = 235 projects)

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

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%)
  1. aNot mutually exclusive
  2. bDefined as a person who is an authority in a particular area or topic
  3. 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)
  4. 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
  5. eAsked only to those reporting partners as research team members
  6. 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