Liz is the OpenNotes Senior Strategist. She’s also a patient who does not have access to her notes.
After being diagnosed with a malignant brain tumor after her 29th birthday, Liz began blogging about her patient experience. From 2008 to 2016, her 500 blog posts mirror her 4,836-page medical record. Liz is featured in The Open Patient: Healing Through Sharing, a documentary about patients seeking access to their own health data. If people had access to their notes, Liz believes people could be more actively engaged in their health sooner, younger, or before the diagnosis of a serious or chronic condition.
Liz comes to OpenNotes from the Coalition for Compassionate Care of California where she was Director of Communications. She is a 2017 fellow of the Salzburg Global Seminar, a 2016 TEDMED Frontline Scholar, and 2016 Stanford Medicine X e-Patient Scholar. 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 lives in Sacramento, California. She serves on the Medical Advisory Board for the National Brain Tumor Society, Patient Advisory panel for the BMJ, Gliogene Patient/Family Advisory Committee at Baylor College of Medicine, and is a patient reviewer for the Patient-Centered Outcomes Research Institute (PCORI). Her interests include citizen science, the quantified self, open source health data, and neuroscience.