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Yes, No, Maybe: Sharing Health and Other Data for Research - Enthusiasm and Concern from the Patient Community
Session Chair(s)
Sara Loud, MBA, MS
Chief Operating Officer
Accelerated Cure Project, United States
Technology facilitates the collection of data for research. Patients want to participate in research but have concerns about misuse of their data. We will come to an understanding of the concerns and develop a framework for addressing them.
Learning Objective : Identify areas of enthusiasm and concern for patients in regards to the collection and sharing of health-related and other data in the course of research. Formulate frameworks for prioritizing and addressing the concerns of patients in study design, implementation, and communications. Propose next steps for future activities and collaboration.
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