Notes from an E-Patient

The Pew Internet and American Life Project released a new study yesterday about the way people with disabilities and chronic illness use the internet. They chose, God help us, to "refer to internet users who have looked online for health information as 'e-patients.'"

I know myself to be a stodgy traditionalist when it comes to the evolution of language. (Verily, if it was good enough for Shakespeare...) To my amazement, I find that the word "e-patient" has been around since at least 2004. There
is (no surprise) an e-patients web site. There's even a companion word: e-caregiver. Zounds!

I've been an e-patient since before there was a word for it. In the mid-nineties, I made my first visit to a urologist and impressed him by asking questions generated by online research. I'm convinced he overestimated my intelligence from that time forward. These days, I bet doctors grown inwardly as soon as they hear the words "I read on the Internet that..."

What else are we to do? We have about twenty minutes with the doctor. (Frankly, I was surprised it's that much.) Because I haven't seen a urologist since I've been back in Minnesota, I've been waiting about three months for a "new patient" appointment. When I go in next week to talk about my treatment options, we can spend twenty minutes discussing the advantages and disadvantages of the choices instead of me hearing them for the first time at the appointment.

One point from the Pew study that concerns me is that most e-patients don't pay attention to the date or source of the information they're collecting. I heard one commentator (can't find a reference for it right now) suggest that doctors need to prescribe information to patients in the same way they prescribe medication: controlling the quality and dosage. I don't want anyone controlling my access to information. I do want an experienced medical mind helping me evaluate and act (or not) on what I've learned.

I've used the Internet as an information gathering tool. I've taken pride in finding reliable and up-to-date information. I have not, however, explored the internet as a way to connect with others dealing with similar issues. I think it's time to do that. (I'm aware of some resistence to that idea. It will be interesting to explore what's causing that.) I'm moving slowly toward embracing the idea of myself as an e-patient.