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Table 4 STUDY CONDUCT: Method of engagement and study activities by stakeholder type

From: Stakeholder engagement in eight comparative effectiveness trials in African Americans and Latinos with asthma

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

  1. Community health worker (CHW); emergency department (ED), Federally Qualified Health Center (FQHC), electronic health record (EHR)