I featured an article by Liz Salmi on this blog just two weeks ago and want to pass along some personal news she recently shared online. Routine monitoring has revealed that her brain cancer, in remission for the past 12 years, is again active, and she is preparing to have surgery in the next few weeks. Liz relays this news and further details in an Oct 1 post on her website, The Liz Army.
For readers not familiar with Liz, she describes herself as “curious person turned citizen informaticist, known for turning my brain cancer diagnosis into an open-source chronicle of the patient experience.” She is currently senior strategist of research dissemination for OpenNotes, the movement based at Beth Israel Deaconess Medical Center in Boston that promotes full access to health information for patients by sharing clinical visit notes.
On her website she describes having “put her digital; communications skills to use” immediately after her original brain cancer diagnosis “by blogging, chronicling her daily symptoms, and seeing how much she could learn from her online patient portal.” Years later, she is among the most effective and influential advocates for the right and power of patients engaged as full partners in care. The effect of her knowledge and commitment extends through many organizations, including the Society for Participatory Medicine, American Medical Informatics Association, the National Brain Tumor Society and more.
The outpouring of well wishes on Twitter after Liz relayed this news is evidence of her importance to so many other patients and professionals throughout health care. I, too, send best wishes for her upcoming surgery and recovery and look forward to her posts and the collective wisdom of her army going forward.