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Table 3 Study planning: 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 example of what was changed

Patients with asthma

 

Advisory group meetings

Multi-disciplinary

advisory boards

Outcome measure

Intervention

Discussions of goals and priorities to develop research question and strategize how community health workers could improve asthma outcomes (G2P study)

Developed training and coach certification program (SAMBA)

Caregivers of children with asthma

 

Stakeholder/patient “work groups”

Asthma coaches

Focus groups

Focus groups + one-on-one interviews

(BEAMS)

Intervention

Intervention

Outcome measure

Intervention, outcome measure

Intervention changed from “usual care” to “enhanced usual care so that all patients benefit from participating in study (CHICAGO)

Developed coaching manual that would be used to deliver study intervention (ASIST)

Developed intervention (use of CHWs and patient portals) and pilot studies based on information from focus groups [19]

De-emphasis on technology and mobile health monitoring as part of intervention for parental stress management and primary outcome measure changed from adherence to symptom free days to reflect priorities of caregivers

Clinicians

 

Advisory board (HIITBAC)

One on one interviews (ASIST)

National advisory core group (BEAMS)

Study design

Intervention

Study design

Identified primary care provider practice sites to participate in the study

Modified inclusion/exclusion criteria to match study population in the community

Recommended asthma coaches as part of intervention to provide patient education (ASIST)

Investigators who were experts in asthma trials among at risk youth refined study question, outcomes, and intervention

Community members

 

CHWs and design strategists in stakeholder/patient “work groups”

Study design, intervention

Developed prototype for in-home asthma education tool that would reflect “real world” settings in which CHWs must adapt (CHICAGO plan)

Advocacy

 

Chicago RHA as part of patient/stakeholder workgroup

Study design

Helped identify patient stakeholders who would refine intervention, select outcomes (CHICAGO)

  1. Community health worker (CHW); Repiratory Health Association (RHA)