"e-Patient Dave" deBronkart was diagnosed in 2007 with renal cell carcinoma (kidney cancer) (MaryO’Note: my cancer!) at a very late stage. His median survival was just 24 weeks; with tumors in both lungs, several bones, even in muscle, his prognosis was "grim," as one web site put it.
Online since 1989, Dave used every resource at his disposal: a strong mental attitude, online research, great treatment at Boston's Beth Israel Deaconess, online medical records, an online journal for family and friends, and online forum of kidney cancer patients. He beat the disease in less than a year, then discovered "e-patients," who participate actively in their healthcare. He began blogging as e-Patient Dave.
An accomplished speaker and writer before his illness, today Dave is engaged in opening health information directly to patients, as public speaker, policy consultant, and Founding Co-chair of the Society for Participatory Medicine. He's testified in Washington, appeared in Time, US News & World Report, the Boston Globe, and was named to the HealthLeaders "20 People Who Make Healthcare Better."
"This is the first time in my life I've felt I have a calling," says Dave, "something I can't get away from: it's what I need to do. I've had plenty of fulfilling jobs in a great career, but not a calling. This is it."
I’ve been “following” Dave on Twitter and elsewhere for over a year. When I was participating on my kidney cancer message boards (ACOR) a little more actively, Dave’s information was always the best, and he shared his experiences so honestly and openly.
I was so glad when he compiled those experiences and knowledge into this book.
I understand what he means about a calling. I’ve often felt that Cushing’s was my calling, too. I’m too shy to get out there and testify but I can sure use my computer to get info out there.
Hopefully, more and more people will become empowered and take control of their own health.
I’m about halfway though this book. My favorite quote (so far) is Reality is what it is,
regardless of what we think
and whether we know it or not.
To find Dave:
- From an interview on this page:
- and many more…
Q. What can patients do?
A. Patients can help. Docs are under continuous and increasing time pressure, they don't get paid for research - there's no insurance billing code for it - and the volume of new research to plow through is ever-increasing, and sometimes patients can help dig out information that adds to what the docs have at their disposal.