Project Summary
Psoriasis is a debilitating systemic inflammatory disease characterized by visible skin lesions and an array of comorbidities that take a toll on the mental health, quality of life, and long-term health outcomes of as many as 7.5 million Americans. With the support of PCORI P2P funding, the National Psoriasis Foundation (NPF) has established Citizen Pscientist as an online patient research community; it is intended to foster partnerships, with the mission of driving comparative effectiveness research (CER) in support of its patients living with psoriatic disease. Through Tier I and Tier II of the P2P program, NPF established a group of 16 governance council members from patient, research, and stakeholder groups to oversee Citizen Pscientist, along with more than 2,800 patient partners who engage through the online platform. During Tier II, a process for distilling CER questions from the online community and governance council was devised and utilized to create a preliminary list of questions that focused on the analysis of interventions used for the treatment of psoriasis and/or psoriatic arthritis. During Tier III, Citizen Pscientist will further refine these CER questions through a cyclical process that includes strategic communication with the online community, refinement of CER questions by a subgroup of the governance council, and preparation of patient-centered outcomes research (PCOR) proposals by the entire governance council. A plan for engaging project leadership through remote and in-person communication and improvements to patient engagement through the online platform has been devised to achieve the goal of submitting a letter of intent and draft PCOR proposal by the end of Tier III.