Table 1.

Guiding conceptual framework for engaging frail and/or seriously ill patients in research

Stages of Research Cycle^a	IAP2 Spectrum of Public Participation^b
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.

Stages of Research Cycle^a

IAP2 Spectrum of Public Participation^b

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.

^aModified from Shippee et al. (2015) [15]

^bBased on the IAP2 Spectrum of Public Participation (2014) [35]