Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Pushed out of the nest: Leaving Kaiser for a PPO
Changing health insurance can be scary, but especially for people with pre-existing conditions, and those who are medically complex and “expensive.”
The TED Talk that shaped my perspective on living with brain cancer
Instead of feeling like I was robbed of my health during the prime of my life, I instead choose to respond with wonder and curiosity. I recognized I was now on a journey many others would never experience.
The most misunderstood member of your health care team: the hospital chaplain
Chaplains can act a bit like social workers and therapists, but help patients explore the spiritual and/or existential hardships of a life-threatening illness.
UPDATED: I attended TEDMED
Liz Salmi goes to TEDMED on a scholarship. It has been said that the most underutilized resource in health care is the patient. Let’s break this barrier!
Transcript of my talk at Stanford Medicine X
This person who gave me almost nothing in life has given me so much more with his death. And for this, I am thankful. So there is no reason to be sorry for my loss.
Who's got my back? Watching the MedX livestream
The essence of Medicine X is that everyone is included in the conference design.
Watch The Open Patient documentary
I am not a doctor. I am not a researcher. I am not going to come up with the cure for cancer on my own. But as a citizen scientist I can play an important role by sharing my experience with you, the reader of this blog.
Defining enthusiasm
I've lobbied Congress on chemo drug parity. I helped start a Twitter community for people with brain tumors. I changed my career to put me in direct connection with leaders in health care. Immediately after my dad's diagnosis I enrolled the two of us in a familial study of gliomas. I obsessed over the release of the 2016 WHO Classifications of Tumors of the Central Nervous System. I declared to anyone who gives a shit that "I am the open source patient," and I am happy to share my personal health information if it would possibly give a researcher a leg up in the study of this disease.
Hacking the hospital death
No offense but dying in a hospital is the worst. We don’t have time to get him home, so what else can we do to make this a better experience?