Communication |
Interaction |
Stakeholders collaborated with investigators to conceptualize and develop the study over several years |
Cognitive interview and survey participants interacted with researchers only while completing the activity |
Information exchange |
Stakeholders contributed their opinions to refine endpoints |
Participants’ prioritization informed final endpoint selection |
Ethical obligations |
Ethical review |
Endpoint rating and refinement was non-human subject |
Interviews and survey were human subject |
Privacy |
Stakeholders provided feedback that was not anonymous |
Interviews were anonymized and survey data were anonymous |
Data collection |
Participant pool |
Purposeful partnering with stakeholders who had experience and interest |
Participation by individuals with whom the research team had no prior contact |
Activities |
Endpoint rating, refinement, and stakeholder meetings |
Cognitive interviews and state fair surveys |
Data analysis |
Level of inference |
Stakeholders involved in engagement; non-generalizable |
Surgical patients and caregivers in Maryland; somewhat generalizable |
Result interpretation |
Based on stakeholder’s experiential understanding |
Based on scientific literature and statistical analysis |
Dissemination |
Target audience |
Patients, family members, and other involved stakeholders |
Scientific community through presentations and publications |
Time lag |
Stakeholders informed of all findings in “real time” |
Scientific community informed of results 1–3 years later |