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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
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Research Involvement and Engagement

ISSN: 2056-7529

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