Stage | Patients and family members | Research support team and investigator team |
Barrier assessment for ACP | Patients and family members helped to identify and prioritise the key barriers to effective ACP. | Teams helped to identify and prioritise the key barriers to effective ACP from a provider level. |
Research design | Draft design was presented. Patientsand family members had an opportunity to give feedback and reshape study design. They were involved in revising study materials and protocol to ensure feasibility for clinicians and patients. | Draft design was presented. Teams did have the opportunity to give feedback and reshape study design. They were involved in revising study materials and protocol to ensure feasibility for clinicians and patients. |
Survey design | The investigator team presented our draft patient engagement survey. The patients and family members had final say in survey design. | Teams gave suggested indicators for the survey, provided input and feedback on the draft survey. |
Conducting the study | Patients/families will be involved in recruitment and implementation phase to increase sustained recruitment and ensure study viability. | Teams will participate in data collection and analysis to lead unique and varied perspectives on interpretation of data. |
Data analysis and interpretation | Patients/families will be presented with preliminary analytic results. They will have the opportunity to suggest new analytic perspectives and to help translate results. | Teams will be presented with preliminary analytic results. They will have the opportunity to suggest new analytic perspectives and to help translate results. |
Dissemination | Patients/families identify opportunities to present and shape information about the study, to move away from traditional models of dissemination and to think more creatively about how to get information into the hands of those who need it. | Team will participate in dissemination efforts, such as authoring manuscripts and presenting study findings to gain key stakeholders perspectives and reach new and different audiences. |
ACP, advance care planning.