Table 2.
Planning of the study | Study conduct | Dissemination of study results |
---|---|---|
Develop the research question and relevant outcomes to be studied to ensure that the project will be stakeholder communities Define the characteristics of study participants to minimize exclusion due to criteria that are not relevant Design the study to minimize disruption to study participants, thereby promoting retention |
Draft or revise study materials and protocols to ensure feasibility for clinicians and patient participants Participate in recruitment of study participants to increase and sustain recruitment and ensure viability of the study Participate in data collection and data analysis to lend unique and varied perspectives on interpretation of the data Participate in the evaluation of patient and stakeholder engagement to ensure authenticity and value of engagement Serve as a patient representative on a data safety monitoring board to make the DSMB composition more robust and patient centered |
Identify partner organizations for dissemination to ensure meaningful and direct connections with end users Plan dissemination efforts, shaping study design and protocol from the very beginning to be focused on the final product Participate in dissemination efforts, such as authoring manuscripts and presenting study findings, to offer the patient and stakeholder perspective and to reach new and different audiences Identify opportunities to present or share information about the study, even as it is in progress, to move away from traditional models of dissemination and think more creatively about how to get information into the hands of those who need it |
Adapted with permission from PCORI: https://www.pcori.org/sites/default/files/Engagement-Rubric.pdf [31]