Table 3.
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) |
Community health worker (CHW); Repiratory Health Association (RHA)