Wednesday, March 19, 2014, 1:00 pm ET/10:00 am PT
Topic: Listening to the Patient
Guest: Sally Okun
Patients Like Me (pdf)
The management of longterm chronic illness is a major challenge today, and much of the management is accomplished in the home, by patients and their families. PatientsLikeMe was founded in 2004 as a support and research-based social network, a place where patients can connect with other patients with the same illness, learn from others, and share what they themselves have learned.
Today the network has over 250,000 members and includes 2,000+ conditions. Health data collected on the site is aggregated and analyzed, and more than 35 peer-reviewed research studies have been published on a range of topics including off-label medication use, dose effect of social connectedness, patient assessment of clinical guidelines for epilepsy care and effect of lithium carbonate on progression of ALS. By listening to patients, PatientsLikeMe is creating a lexicon of language they use to describe their illness—language that may be quite different from standard medical terminology.
Sally Okun will join the call to talk about why and how this network was created, research based on the data, and the ongoing creation of a lexicon. Please bring your own experiences and your voice to this important conversation.
Sally Okun, RN, MMHSis the Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe in Cambridge, MA. She is responsible for patient voice and advocacy initiatives, participates in health policy discussions at the national and global level, and acts as the company’s liaison with government and regulatory agencies. She joined PatientsLikeMe 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 patient folksonomy. In 2009 she developed the PatientsLikeMe Drug Safety and Pharmacovigilance Platform to meet adverse event reporting obligations of industry partners while collaborating in a social media environment.
Okun participates on numerous collaboratives of the Institute of Medicine’s (IOM) Roundtable on Value and Science Driven Healthcare and the Committee on Core Metrics for Better Health at Lower Cost. Ms. Okun serves on the Advisory Panel on Patient Engagement for the Patient Centered Outcomes Research Institute’s (PCORI); the National Quality Forum’s Person-centered Care and Outcomes Committee and the Scientific Advisory Committee for the Reagan-Udall Foundation's Innovation in Medical Evidence Development and Surveillance (IMEDS) Program and the Program Advisory Board of the Schwartz Center for Compassionate Health Care. Sally is a frequent speaker at clinical, advocacy and policy events and in April 2013 she was the first nurse ever invited to give a TEDMED talk at Kennedy Center.
Prior to joining PatientsLikeMe Sally, a registered nurse, practiced as a community-based palliative and end-of-life care specialist and project consultant. In more than 30 years of practice she contributed to clinical, research, and educational projects with multiple collaborators including Brown University, Harvard Medical School, MA Department of Mental Health, Hospice Education Network, and the Robert Wood Johnson Foundation.
Okun received 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.