Search all of the Society for Participatory Medicine website:Search

In February 2007 the Washington DC PBS station, WETA, produced a pilot program for a series called “Healthcare 360,” produced by George Mason University and the Agency for Healthcare Research and Quality.

The pilot is about “Health IT and how it impacts the quality of care in America.” I was invited to be on the panel, as a longtime user of the PatientSite system at Boston’s Beth Israel Deaconess Medical Center.

The show never aired, but recently snippets from it were placed on YouTube by MediaForce PR, the firm that managed logistics for the show. Here’s my 1:52 of fame.

In this segment I speak about how using PatientSite, and being actively engaged in driving my care calendar, led to discovering my metastatic cancer. These are e-patient principles.

(Caveat – I’m not a trained media personality – this was a first for me. I learned that on a show like this there’s no advance discussion of what the questions will be – they don’t want canned-sounding answers. So imagine the fun when host Frank Sesno turned to me first in our segment, with no warning, and brought up my cancer, which I didn’t know we were going to discuss!)

The full hour is at (The segment shown above is at about 26:00.)

Epilog: do e-patient practices matter?

I want to say something about how close to the edge my case went, and the difference it made that I was actively engaged in my care, using PatientSite and other e-patient principles. Pardon me for getting into the details of my case, but I think they make a point.

When WETA contacted me about this, although I’d received my cancer diagnosis, I still had no symptoms. By the time of this taping, my left leg had started hurting like hell, which I thought was an annoying coincidence – “What, cancer, and now a sore knee??” But I soon learned that the cancer had spread into my femur and was eating the bone – ten weeks later it simply broke. I also had tumors all through both lungs, and more bone metastases in an arm, skull, and pelvis.

A few weeks after this the kidney was removed. Four weeks after that, days before my cancer treatment started, a tumor erupted from my tongue. I’m told such intramuscular tumors happen only in the most aggressive cases. Before that one got big enough to interfere with eating or breathing, the treatment started, and before long the tongue lesion fell off. That was the start of what appears to be almost a full recovery.

Just today, by coincidence, I got my quarterly CT scan results. The four “target lesions” my care team has been tracking have shrunk 92%, and one of the four has now disappeared completely.

Am I glad my combination of good practices and good technology found my cancer six weeks before the first symptom? You bet.

I also used two major online resources during the course of my case: a CaringBridge journal, and an excellent ACOR peer community. My case was “e” from start to finish, and it continues today: that’s why I became an e-patient blogger – to teach.

People, this e-patient stuff is very real for me. At the time this video was shot, I’d never heard the term “e-patient,” but it’s how I was living. And I believe it made the difference.