The research process is essentially linear with little opportunity for patients and caregivers to add their voice. Researchers often design their research study, seek funding, conduct the research, analyze the findings, and publish the study in isolation from populations their research will impact.8 (See Fig. 1) Essentially, the research process follows a one dimensional trajectory lacking contact with the ultimate end-users – patients and caregivers. 

linear researchFigure 1: The Linear Research Process

With initiatives to add the patient and caregiver voice to all aspects of research like those listed above, a few patients and caregivers may be asked to take part in these various stages.  However, only even fewer will have the chance to be involved.  Most patients and caregivers are only aware of research after it is completed; they can only respond to and provide feedback on published studies. Still, their responses to published research can have tremendous value for future research. The Research Loop recognizes the value of feedback and aims to transform the linear research process to a loop by adding the patient and caregiver voice.  (See Fig. 2)

loop and loop w caregiversFigure 2: The Research Loop transforms the research process by adding the patient and caregiver voice.

Patients and caregivers can bring new life to findings that might remain unexplored after publication, which may impact future research as will be explored below. With patient and caregiver feedback, the research process becomes interactive rather than passive, self-perpetuating rather than stagnant while bridging the gap between researchers and the community.


To download a full copy of The Research Loop White Paper or find links to other sections, including the reference section, click here.