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!
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?
Meta Open Source: Open sourcing my blog post about "I am the open source patient"
A little over one year ago I wrote a blog post declaring that, "I am the open source patient." Little did I know a few months later I would be contacted by RedHat--a mega distributor of Linux-based services... and they were working on a mini-documentary about open source and healthcare.