Cancer, Then a Calling, for 'e-Patient Dave'

There’s the patient every doctor dreads—the one who shows up holding a sheaf of printouts from the Internet. And then there is Dave deBronkart.

Better known as “e-Patient Dave,” deBronkart has become the Web’s best-known advocate of participatory medicine, storming Twitter and stages in Washington and abroad as a motivational speaker who tells patients to get online, get access to their medical records, and take charge of their health decisions. His most famous line: “Gimme my damn data!”

DeBronkart, who is 61, became a patient advocate after a diagnosis of metastatic kidney cancer in 2007. Given 24 weeks to live, he hit the Web and eventually received a little-used treatment, IL-2. The treatment ended up curing him. Now, as the idea of electronic medicine wins attention in the United States, deBronkart has emerged as an important technology critic.

TR business editor Antonio Regalado spoke with deBronkart about how online patient advocacy is changing medicine.

TR: Before there was e-Patient Dave, who was there?

DeBronkart: I was a two-bit geek, working in Web marketing and analytics.

So can you give me a definition of what an e-patient is?

“E-patient” is a term that was coined in the 1990s by Tom Ferguson, an MD who saw that the vast majority of what we do when we get sick is self-care, and the main limiting factor on how much you can do is how much information you have. When the Internet came along, Ferguson began to identify people who were doing things like finding information online, meeting up with others, and genuinely creating value in health care on the Internet. And so he coined this term e-patient, [for] “equipped, enabled, empowered, and engaged.” I immediately saw myself as a specimen of what he was talking about. I had a blog called The New Life of Patient Dave, and I just renamed myself e-Patient Dave.

What are you advocating for?

The forces of economics have run out of control compared to what consumers need. Just think—we have 50 million Americans that have no health insurance. So now we are being left to make these decisions on our own, and I assert that we can’t do that unless we have access to our medical records.

How did cancer change your thinking?

I had a cancer that is usually fatal. Samuel Johnson in the 1700s supposedly said that nothing focuses the mind like the knowledge that one is to be hanged in a fortnight. So it got my attention. Totally. Like, “There is nothing I am more interested in than what might prolong my life.” That got me to spend all my waking hours looking for assistance, support, information, and so on. I joined a patient community online that had high-quality information and also had empathy, which is a major thing that most people don’t appreciate.

What kinds of changes need to happen in the health-care industry?

No physician, no nurse, can possibly perform to the best of their trained potential if they don’t have all the relevant information at the point where the care is being done.

People talk about how in Las Vegas, if you are there at the dice table, you run out of money and go to the credit window—they know everything about you. They know how many times you’ve been late on payments in the last five years. But if you have a heart attack because you hit it big at the dice table and go to the emergency room, they know nothing about you. What I know is possible is that if we can have that information presented in an organized fashion, in a clear user interface, to the health-care provider, it will improve value.

What has been the response to your advocacy for e-patienthood?

It’s funny, because the last thing I thought was that it would be getting global attraction, global attention, but it has. Most of what I talk about is U.S. health care, with its own unique problems. But the message has spread to all kinds of other countries. My message is to let patients help. And that is what has some real traction, much to the surprise of many people in the medical profession. Many patients really want to be given an active role in making health care better.

Why do you say that is a surprise to the medical profession?

There are many doctors, well-meaning (and some jerks), who have been trained specifically that patients are passive lumps who don’t want to take care of themselves and don’t want to do anything. They think, “You just have to do the best you can given that these are inert and sometimes resisting objects.”

You became a little famous after trying to use Google Health, a program that let patients track their own health care. What are your thoughts on personal health records?

The personal health record, commonly known as a PHR, is a concept that is going through a big evolution and just starting to mature. A lot of PHR products, and you can find a slew of them, are idiot-level or just initial experimentation. We just don’t have easy tools. The medical industry has computerized to a certain extent, but the vast majority of what they have done is to automate billing. That makes perfect sense for business purposes but produces crap when it comes to clinical reality.

I looked at your blog, but I can’t figure out what PHR you use now.

You’re sharp. At present I don’t keep a PHR. I actually don’t have an immediate use for one. Nothing that particularly needs tracking!

What will the e-patient movement mean to the health-care industry?

Health care is the only industry I know of where the definition of quality—and therefore of value—isn’t centered around what people want. There is an idea that value consists of doing more medically or biologically amazing things. So we have situations like where you have three times as many proton-beam cancer treatment devices in a city than there is market need for. Costs keep escalating, and value doesn’t.

We are headed to a situation where consumers and employers are saying “To hell with this, we need value for our spending.” When people begin buying only things that are clearly valuable, the people selling high-priced medicine are going to be saying, “Wait a minute, what happened?” They have no idea why they suck, why the things that they have always valued in their ecosystems and their culture are not actually of any concern to the ultimate consumer. I say the high-cost providers are pricing themselves out of the market.

Is being an e-patient advocate a good business for you?

A good business? It’s a hard business. It’s hard because there is no mass market for what I have to say. I am a pioneer—not in a glorious sense, but in the sense of hacking my way through the underbrush. But I like speaking new ideas and seeing people’s minds go, “Wow, I never thought about that.” I like that we are getting a response.