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.