Brain Cancer Quality of Life Collaborative
Liz Salmi is the Senior Multimedia Communications Manager for OpenNotes at Beth Israel Deaconess Medical Center. She’s also a patient.
After receiving a brain cancer diagnosis one week after her 29th birthday, Liz began blogging about her patient experience. From 2008 to 2016, her 500 blog posts mirror her 4,800-page medical record. She is featured in The Open Patient: Healing Through Sharing, a documentary about patients seeking access to their own health data. After her dad was diagnosed with brain cancer in 2015, Liz immediately enrolled in Gliogene, the nation’s only study investigating genetic links in glioma brain cancers. Liz talked about her decision to get involved with research in a 2016 talk at the Stanford Medicine X conference.
As a communications professional with a background in traditional and digital communications, design, and community organizing, Liz has a passion to inspire and empower regular people to become more engaged in their own health care and improve their experiences as patients. She speaks regularly on how healthcare professionals and patients are connecting through digital media, including in a 2013 TEDx Talk on how patients are using the Internet to form their own support networks.
Liz serves on the Board of Directors for the National Brain Tumor Society and Patient Advisory panel for the BMJ. Her interests include informatics, the quantified self, open source health data, and neuroscience.