e-Patient stories: several types

As I talk to people about "participatory medicine" and patient empowerment, I've needed to think out what the term really means when the rubber meets the road - when you (the patient) get responsibly involved in your own health care. So I've been listening for stories, and they seem to fall into two categories: where doctors were helpful, supportive partners, and where they weren't.

The sources of stories are at bottom. Here's my personal concusion.


Helpful, supportive doctors

Doctors today are under enormous time and cost pressures. The e-patient paper "e-Patients: How they can help us heal healthcare", written mostly by MDs, clearly documents how doctors no longer get paid for "going deep" to research every condition they encounter. Now, with the Internet, patients can help.

• In some stories, doctors admitted they were stumped. The patient and family did deep research and found new information that turned the tide.
  
  
• In other stories, docs felt they had the diagnosis, but welcomed it when the patient and family brought new information.

That's "participatory medicine" in action.


Not-so-helpful doctors

Other stories unfortunately echo the stereotype of doctors who think they're god-like.

• Some told of doctors who were arrogant. One patient was asked "Who has the degree here, me or you?"
• Some doctors poo-poo'd the patient's concerns (when they felt "This treatment doesn't seem to be helping me"), and the patients turned out to be right.

"E-patient" means you and I know we can participate in our care; expect to have our questions honored; are willing to learn how to research effectively.

Below is a list of the places I've come across stories. This isn't a scientific study - as one of the e-patient doctors says, "The plural of anecdote is not data." :-) This is just me sharing what I've observed.

Most of these stories are just a few sentences. Well worth reading, if you ask me.

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Sources of stories

Two weeks ago on the e-patient blog we started collecting e-patient stories. It started with an excerpt from Randy Pausch's best-selling The Last Lecture, demonstrating how he matched the e-patient model: actively engaged, learning everything he could, participating in his own care as much as he possibly could - and being fully supported in this by his care team.

Comments on that blog post added five more e-patient stories.

At least another dozen stories are in the e-patient paper (see link above).

Then, CNN.com drew quite a reaction when its "Empowered Patient" feature wrote a column "5 mistakes women make at the doctor's office". (That's a heck of a title for a feature about empowerment, isn't it?)

Dozens more e-patient stories were added to comments on that article and on the e-patient blog's post about it.