IN A NUTSHELL:
SALLY OKUN of PatientsLikeMe, one of the first social networks for health, reveals what has emerged from years of openly sharing data: the patients' lexicon.
Sally Okun is the Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe in Cambridge, MA. She is responsible for the company’s patient advocacy initiatives; she participates and contributes to health policy discussions at the national and global level; and she is the company’s liaison with government and regulatory agencies. Sally joined the company in 2008 as the manager of Health Data Integrity and Patient Safety overseeing the site’s medical ontology including the curation of patient-reported health data and an ever-evolving patient vocabulary. Okun also developed and manages the PatientsLikeMe Drug Safety and Pharmacovigilance Platform.
Prior to joining PatientsLikeMe Sally, a registered nurse, practiced as a palliative and end-of-life care specialist. In addition as an independent consultant she contributed to multiple clinical, research, and educational projects focused on palliative and end-of-life care for numerous clients including Brown University, Harvard Medical School, MA Department of Mental Health, Hospice Education Network and the Robert Wood Johnson Foundation.
Sally participates on the Institute of Medicine’s Roundtable on Value and Science Driven Healthcare as a member of the Clinical Effectiveness Research Innovation Collaborative, the Evidence Communication Innovation Collaborative, and the Best Practices Innovation Collaborative. She is a contributing author to the Institute’s discussion papers Principles and Values for Team-based Healthcare and Communicating with Patients on Health Care Evidence. Ms. Okun serves on the Program Advisory Board of the Schwartz Center for Compassionate Care in Boston and has been a facilitator for Schwartz Center Rounds® at numerous locations around the country.
Sally received her nursing diploma from the Hospital of St. Raphael School of Nursing; Baccalaureate degree in Nursing from Southern Connecticut State University; and a Master’s degree from The Heller School for Social Policy & Management at Brandeis University. She completed her 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.