Engagement

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• What is the difference between patients and other stakeholders?
• When proposing research focusing on prevention, who should applicants engage as patient partners?
• Should patients engaged in a proposed study have the exact condition being studied?
• Does PCORI have a requirement for the number of patients involved to qualify for meaningful involvement?
• Should patients be listed as co-investigators or consultants?
• Do stakeholders, as well as patients, have to be included in the Engagement Plan?
• Can a person play more than one role on a team—for example, as both a stakeholder and a researcher?
• When partners are involved with recruitment, how does an applicant work around their own Institutional Review Board (IRB) requirements, given that these partners are not employees of the institution but will have access to protected health information?
• How early in the research process should patient partners be engaged?
• How final should the research plan be at the outset of the award? Should awardees plan for modifications in the event that patient partners have input that prompts changes?
• How much compensation should be provided to patient partners? Can there be different levels of compensation?
• What kinds of incentives have been used for patient partners? What are some examples of alternatives to financial compensation?
• How can I designate an individual as Co-PI?
• When organizing the Engagement Plan content in the proposal, must the outline of the Engagement Rubric be followed exactly? For a proposal, it may be more logical to for an applicant to arrange the information by patient partner or other stakeholder group
• Why must applicants provide the names of our patient and stakeholder partners?
• Can patient or stakeholder partners remain anonymous if requested?
• Why are the engagement requirements different in Pragmatic Clinical Studies (PCS) and Targeted PFAs than in Broad PFAs?
• Should applicants involve actual patients as a partners in our project or would partnership with an advocacy group, not a specifically identified patient, be sufficient?
• How can we involve patient partners who are not institution employees in our recruitment activities, given that they will need to access protected health information?
• What is a Study Advisory Committee (SAC)?
• Can PCORI assist with finding potential patient and other stakeholder research partners?