“Where does my body end and an invader start? And cancer, a tumor, is something you grow out of your own tissue. How does that happen? Where does medical ability end and start?”
“Me being me, I put the numbers from my hospital's website from my tumor sizes into a spreadsheet.”
“Value in medicine depends on information - as I said in 'Let Patients Help,' 'People perform better when they're informed better.' It follows that to make patients and families more effective in care, they need to know more.”
“Diagnosed incidentally with stage IV, grade 4 metastatic renal cell carcinoma, I had bone metastases in my femur (which eventually fractured), ulna, and cranium; five metastases in my lungs; and muscle metastases in my thigh and tongue. Yet six months after diagnosis, my treatment ended: I've not had a drop of anything since.”
“One of the most stubborn barriers to patient empowerment is the cultural assumption that since the way professionals learned was hard, you must need to be really smart, and you need to be taught in a carefully thought out, methodical sequence.”
“Too often, hospital staff are incented by management to get work done without worrying about care, and clinicians are too often not even trained to think about care.”
“I'm an e-patient: equipped, enabled, empowered, engaged. I'm no clinician, but I do everything in my power to help them, to play an active role in my own care, and even in the design of care.”
“Ever tried to get sleep in a hospital? Ever wonder if anyone even taught them what care is? Some hospitals are great, but some sure aren't.”
“I advocate for a totally new view of the role of the patient: patient as engaged partner, not passive recipient.”
“I've been online long enough to know if I don't like the first results I get, I go look for more.”