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!
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.
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.
