What happens when two brain cancer patients decide to take their futures into their own hands?
Steven Keating, Ph.D., passed away July 19, 2019, at the age of 31. He was an engineer and an unflagging champion of greater transparency in healthcare. After learning that he had a brain tumor, Steven applied his passions for data and transparency to his treatment. He pushed for more sharing between doctors and patients, posted his own brain scans for others to investigate, and raised awareness nationwide of the healing power of openness.
Liz Salmi is a healthcare communications professional based in Sacramento, CA who dubs herself "the open source patient." After a powerful seizure, Liz learned that a mass was growing in her brain, and she was diagnosed with Gemistocytic astrocytoma. She created her blog The Liz Army to share her experiences with brain cancer with the world, to support those going through similar experiences, and to advocate opening up health data.
OpenNotes is a national initiative to give patients access to the visit notes written by their doctors and nurses. Since 2010, it has grown from 100 doctors to thousands, and from 20,000 patients to 10 million.