Table 1 Guiding conceptual framework for engaging frail and/or seriously ill patients in research
From: Partnering with frail or seriously ill patients in research: a systematic review
Stages of Research Cyclea | IAP2 Spectrum of Public Participationb |
|---|---|
Foundational phase • Research priority setting – specific to disease, condition, or syndrome • Setting evidence-based patient engagement strategies – specific to disease, condition, or syndrome | Inform • Providing balanced and objective information to assist in understanding the problem, alternatives, opportunities and/or solutions |
Preparatory phase • Agenda setting at the individual study level • Proposal development • Ethics application – including well-defined consent procedures • Acquiring funding/grant application | Consult • Seeking/obtaining feedback on analysis, alternatives and/or decisions |
Execution phase • Study design & procedures • Recruitment strategies & tools • Data collection • Data analysis (reviewing & interpreting data) | Involve • Working directly with (patients) throughout the process to ensure concerns and aspirations are consistently understood and considered |
Translation phase • Dissemination • Implementation • Evaluation | Collaborate • Partnering in each aspect of the decision (e.g., contributing to shared decision-making across the research process) |
Empower • Patients and members of the public provide final decision. |