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"Harnessing the Power of Innovation, Health Informatics and Patient Voice"

Peer-to-peer online networks are an emerging source for a new generation of patient-reported data. Increasingly, people are using social media to meet others with their same condition and to exchange information about symptoms, treatments and side effects. Since few websites collect these data in a scientific manner, patient experience and knowledge are too often lost.

PatientsLikeMe, a patient-powered research network, harnesses the unique characteristics of patient insight by capturing data that matters to patients using clinically relevant patient-reported outcome measures (PRO). This presentation will explore what we have learned from PROs about how diseases and treatments act in the real world; validate the impact of PROs on care and decision-making; and establish PROs as essential to a continuously learning 21st century health system.

Presenter Sally Okun has been a member of the research and development team at PatientsLikeMe, Inc., since 2008 and is responsible for the site’s medical ontology and the integrity of patient reported health data. She also developed and oversees the PatientsLikeMe Drug Safety and Pharmacovigilance Platform. Okun is currently transitioning to the newly created position of vice president, advocacy and patient safety. In this role she will oversee the company’s evolving patient advocacy initiatives, participate and contribute to health policy discussions at the national and global level, and be the company’s liaison with government and regulatory agencies responsible for patient safety.

Prior to joining PatientsLikeMe, Okun practiced as a palliative care specialist. In addition to working with patients and families facing life-changing illnesses, she was an independent consultant supporting multi-year clinical, research, and education projects focused on palliative and end of life care for numerous clients including Brown University, Harvard Medical School, the Massachusetts Department of Mental Health, and the Robert Wood Johnson Foundation.

Okun received her nursing diploma from the Hospital of St. Raphael School of Nursing; her bachelor's degree in nursing from Southern Connecticut State University; and her master's degree from the Heller School for Social Policy & Management at Brandeis University. She completed study of palliative care and ethics at Memorial Sloan-Kettering Cancer Center and was a fellow at the National Library of Medicine Program in Biomedical Informatics.