When the Patient is a Yahoo

I also posted this on the e-patients blog.

There's been a lot of talk about Scott Haig's November article in Time, When the Patient is a Googler: Alan Greene wrote on the e-patients blog; it was a hot topic on the NY Times "Well" blog; and Susannah Fox said:

I'd love to hear what people think about the issues raised, but I also want us to notice the use of the term "googler" to describe the group we would call "e-patients" (and that Harris Interactive would call "cyberchondriacs.")

And this, from Network World: When the patient is a Googler and the doctor is a pompous ass.

There seems to be a binariness to the conversation: some think patients should just mind their own business (i.e. stick to the listening side of the desk), others think patients have every right to mind their own business: be actively involved in researching and knowing their condition, and bringing things to the table.

What's missing is the aspect of building an effective partnership. As a living specimen of the patient side of things, I have a couple of observations.

1. How dare anyone tell me not to try to find out what's going on inside my body? I wouldn't tolerate that from a car mechanic and I won't tolerate it from a doctor. That attitude is obsolete.
   
   
2. At the same time, if I want partnership, I get a responsibility too. At the core are two-way respect and open communication: freedom to express, freedom to bring things up, freedom to be heard - and responsibility to listen and not abuse the privilege.

As I worked with my care team at Boston's Beth Israel Deaconess, they were open to hearing my thoughts and concerns, and at the same time they had the people skills to guide me effectively, e.g. "That's not where we need to focus right now." Having chosen doctors I trust, I was willing to take the coaching. (All this was before I'd ever heard "e-patient" or "participatory medicine.")

When you look at it that way, it becomes clear: the patient in Haig's article would have been a nightmare with or without Google. The real title should have been "When the Patient is a Yahoo."

For my part, I've started work on an "e-patient bill of rights and responsibilities." Patients, I'm curious - what would you expect in a good partnership of any sort: marriage, car repair, banker, medical?

Speak up: this is a living example of Web 2.0 means we get to say. We can define groundrules that work, creating a new world that will benefit us, our children, and generations to come. (I've already started the conversation with a med student I know on Facebook, and she's psyched.)

A closing oddity: Google's summary of the article contains a phrase that I can't find in the article itself: "A well-informed patient can be a good thing, so long as he or she's got the right kind of information." Doing a View Source shows that the phrase only appears in the meta-tag for the article's description:

<metaname="description" content="A well-informed patient can be a good thing, so long as he or she's got the right kind of information">

That sums it up pretty well. I wonder how it ended up in the metatags and not in the article! Did somebody edit it out, just as it was going to "press"?