Abstract

This session will discuss patient and stakeholder involvement as members of the research team on a grant funded by the Patient Centered Outcomes Research Institute (PCORI). Patients with a rare chronic disease, systemic sclerosis, and members from key stakeholder organizations were involved in evaluating, revising and testing the effectiveness of an internet self-management program. They participated at several levels of engagement including planning the study, conducting the study, and disseminating the results. This session will discuss how engagement occurred at each of these levels through different opportunities such as creating interventions, identifying outcomes, recruiting, presenting findings, and planning dissemination efforts. The benefits and challenges for both researchers and patient research partners will also be described.