focused on palliative and end-of-life care for numerous clients including Brown University, Harvard Medical School, Massachusetts Department of Mental Health, Hospice Education Network, and the Robert Wood Johnson Foundation. Ms. Okun participates on the Institute of Medicine’s (IOM’s) Roundtable on Value & Science-Driven Health Care 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 IOM’s discussion papers Principles and Values for Team-Based Health Care 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. Ms. Okun received her nursing diploma from the Hospital of St. Raphael School of Nursing; baccalaureate degree in Nursing from Southern Connecticut State University; and 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.

Laura M. Phillips is a Patient Member of PatientsLikeMe. She was diagnosed in 1999 with multiple sclerosis (MS) after being hospitalized with a debilitating headache. Ms. Phillips was adopted and has no information about her birth mother’s family history. Her birth father has no known history of MS in his family. She joined PatientsLikeMe in March 2008 and found others who could answer the questions doctors really could not because they have never experienced MS. When comparing her experiences with others on PatientsLikeMe, Ms. Phillips has found that a good majority of patients have similar deficiencies, a fact that on their own they would not have looked into or followed up on with their doctors. As much as doctors and researchers know, there are numerous untold things they do not know. Every MS patient learns so much from their own MS and it will be from their collective experiences that they will help forge the way to a cure.

Jill Plevinsky is currently a clinical research coordinator for the Inflammatory Bowel Disease Center at Boston Children’s Hospital and recently completed graduate work in child development at Tufts University. She was diagnosed with Crohn’s disease at age 7 and immediately became involved in awareness, education, and fundraising efforts through the Crohn’s and Colitis Foundation, for which she served as the Philadelphia/Delaware Valley Chapter’s first youth ambassador and the founding chair of the National Youth Leadership Council. She also serves as both a member of the leadership team for her local Camp Oasis program and the founding chair of the ImproveCareNow and Collaborative Chronic Care Network Patient Advisory Council. Her passion for the integration of new social technologies and pediatric patient access to social support has allowed her panelist and presentation opportunities at both national and international meetings held at Stanford University, Mayo Clinic, Massachusetts Institute of Technology, and Harvard Medical School, among others. Specifically, she hopes to become a clinical psychologist and continue to cultivate her interest in how having a chronic illness at a young age can affect this generation’s experience of social media. Through innovative research, social network analysis, and new technologies, she plans to help young people with chronic illness engage in their health care and benefit from the accessibility of social support and health information on the Internet.



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