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!
Is there such thing as too much information when it comes to our medical history?
Is it possible I provided too much information for my medical team? Yes, but I believe it better to share everything and leave it to the professionals to weed out extraneous details.
Guerrilla healthcare redesign: Support group materials edition
How might you use your skills to redesign a patient experience?
Empowering patients with a common language for palliative care
Giving people language for self-advocacy: While patients shouldn't be overwhelmed with clinical language, helping us understand what things like palliative care are and are not improves our ability to advocate for ourselves.