Dave deBronkart, “e-Patient Dave,” was diagnosed with stage IV kidney cancer in 2007. The median survival time for his condition was 24 weeks. Thanks to the help of an online network for patients with his disease, he quickly learned about treatment options and found support for his recovery. The treatment was successful, and now e-Patient Dave is cancer-free and has found a higher calling: empowering patients to have access to the best health care possible — by connecting with resources online. I was inspired by e-Patient Dave’s amazing TEDx video and was fortunate to meet up with him at the recent TEDMED conference.
PF: e-Patient Dave, the story of how you healed from cancer is so inspiring. How did you get started in your Internet search for a cure?
ePD: Funny, I didn’t really think of it as the Internet; I was just using everything within reach. Books, phones, family, email, Web pages, everything. They’re all just pipelines to information and connecting with people. I’ve been online since 1989; I was sysop on several CompuServe forums. Mainly I did desktop publishing, and at one point I ran the ADD Forum, where families solved problems when schools and jobs didn’t help.
It rocked: peer-to-peer problem solving. And back then, I wasn’t even dying. So when I was in big trouble, the most natural thing was to supplement what my doctors were doing by going online.
PF: What did your doctor think about your proactive approach?
ePD: Think about it? Heck, he referred me to a patient community. His name is Dr. Danny Sands, a real pioneer, famous in some circles for co-authoring the first published guides on doctor-patient email, and that was in 1998! That’s one of the reasons we hit it off well: We’re both early adopters of things that become widespread later. So get used to it — we is the future.
It’s not just Dr. Sands, by the way. My oncologist, Dr. David McDermott, is one of the tops in the world for my disease, so if anyone had a right to be snooty it would be him, but when I apologized after one question I emailed him, he responded, “I am happy to field your questions.” My orthopedist, Dr. Megan Anderson, gladly accepted a digital photo my wife took of an infection on the incision, saving us a trip to the hospital. They’re modern. Read more…