Table 4.
Stakeholder | Method of engagement | Study activity | Specific examples |
---|---|---|---|
Patients with asthma | |||
Patient/stakeholder advisory board (HIITBAC) Multidisciplinary advisory board Patient-only advisory board |
Recruitment and retention Recruitment and retention Recruitment and retention |
Recommended strategies to engender trust: use of car magnets, identification/type of clothing of research team Interacted with potential participants at food distribution sites, African American churches, and through interviews with local TV and radio stations Recruitment materials revised to better target African American communities’ motivation for participating in clinical trials Suggested increased frequency of reminders, more compensation options Proposed driving to participant’s home if not reachable by phone [19] Conducted monthly meetings for coaches to improve skills and expand knowledge base (SAMBA) Redesigned recruitment strategies, such as by tailoring recruitment scripts, recommending that tote bags be provided (SAMBA) |
|
Caregivers of children with asthma | |||
Caregivers as asthma coaches | Delivery of intervention | Asthma coaches designed intervention as well as delivered patient education as part of intervention (ASIST) | |
Clinicians | |||
Multi-disciplinary workgroups Community providers as investigators One-on-one interviews |
Adjustment of intervention Delivery of intervention Recruitment |
On site observations resulted in shifting of study activities (recruitment, enrollment, randomization, intervention) to the treatment and observation period during patient’s ED stay, rather than at discharge (CHICAGO) Recruited patients and administered intervention to their own patients (ASIST) Study manuals, and education and recruitment materials modified to improve recruitment (ASIST) |
|
Community members | |||
Community health workers as part of “CHW coordinating center” | Direct delivery of intervention | Suggested that community health worker term be changed to “community asthma educator” | |
Health care organizations | |||
Institute for Family Health, an FQHC | Recruitment, intervention | Contributed to chronic care model-based health coaching, EHR modifications for asthma clinical decision support, and as recruitment sites |
Community health worker (CHW); emergency department (ED), Federally Qualified Health Center (FQHC), electronic health record (EHR)