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.
PF: What impact did the online patient community have on your success in healing from cancer?
ePD: I want to be clear, not all patient communities are great, any more than online communities of any sort. But when a good one gets going, boy is it sweet.
My kidney cancer group, on acor.org, told me there's no sure cure, but there's one thing that sometimes works: high dosage interleukin-2. The side effects can be awful, even fatal, so you need to find a specialist hospital that does a lot of cases. They gave me the names and numbers of four docs in my area. How cool is that?
One of them was McDermott; I was already at his hospital. But I've since learned that three out of four patients never even hear about the drug, because their hospital doesn't offer it, and medical databases are out of date. If that isn't tangible value from going online, I don't know what is.
But that wasn't the end of it. They helped me sort out this horrid experience, the facts, my feelings, my options, and they did it from my perspective.
And finally, when treatment time came, I asked them what those side effects were really like, and they gave me 17 first-hand stories. So when the problems hit, I knew what to expect.
Did it matter? Recently Dr. McDermott told me, "There's no doubt the interleukin killed your tumors. But I don't know if you could have tolerated enough to do the job, if you hadn't been so prepared."
PF: You call yourself e-Patient Dave. What is an e-Patient?
ePD: Empowered, engaged, equipped, enabled. It's a term used by "Doc Tom" Ferguson, a post-Woodstock power-to-the-people guy, editor of Medical Self-Care magazine and the book of the same name. When the Internet was opened up, he saw that the power of the ordinary citizen to be active in health care was radically altered -- because we could newly connect with information and with each other.
A lot of people think the "e" is about being online. Not so much. When he first noticed e-patients, online patients were indeed empowered, almost by definition. But today almost everyone is online.
PF: Why do you think the interest in "the empowered patient" is increasing?
ePD: Most of us know health care needs all the help it can get. The cost spiral is way out of whack with the value experienced by the consumer -- the patient. And Dr. Warner Slack has been saying since the '70s that patients are the most underused resource in health care.
For another, there's a massive initiative now, arising from the federal stimulus bill of 2009 and the health reform bill, to finally get the medical industry to start using computers and force them to share information. To get the incentive funding (and avoid penalties), they have to start doing "patient and family engagement," i.e., let us see our records. (At last!)
PF: Often when a patient receives a diagnosis of a serious illness, the response is one of fear. How does a patient move from a place of fear and uncertainly to a place of empowerment? Isn't it difficult to get involved in your own care when you don't feel well?
ePD: Well, I'm here to tell you, an empowered patient can absolutely be scared shitless -- the two aren't exclusive. And sure, it can be hard to get involved when you don't feel well. That's part of why we often see "e-patient by proxy" -- a parent, spouse, friend researching on behalf of another.
But if you hang out on a listserv like my KIDNEY-ONC kidney cancer community on acor.org, you'll be surprised how motivated someone can get to hunt for useful information when they're dying.
PF: What is the response of doctors and health care professionals to the increase of patient participation and empowerment?
ePD: An increasing number are waking up, but this is a big change. I liken it to a new dance, where one party always used to lead and the other was supposed to follow: we need new dancing lessons. How should a patient send signals in this new culture? How can the clinician respond, coaching and developing the patient's skills?
PF: You get invited to speak at a lot of high-profile conferences such as TEDx, and now I understand you have been invited to speak at South by Southwest. It is so unique to invite a patient to speak at these conferences. Do you think this reflects the medical community's realization that patients need to be more involved in improving health care?
ePD: We're starting to see the democratization of health care, and that's as it should be.
Watch e-Patient Dave's empowering, engaging, and entertaining (he even does a little rapping!) TEDx talk (standing ovation included) video here:
"e-Patient Dave" deBronkart is now an international keynote speaker and health policy advisor. He serves as a Chair of the Society for Participatory Medicine and is on the Advisory Board of the Mayo Clinic for Social Media. Visit his blog at ePatientDave.com and look for his upcoming articles on patient empowerment here at HuffPost Healthy Living.
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