Chapter 12 of Randy Pausch’s best-selling book The Last Lecture opens with a classic anecdote of what it looks like when an empowered patient practices participatory medicine with an equally participatory care team:
CT scans revealed I had pancreatic cancer, and it would take me just ten seconds on Google to discover how bad this news was. Pancreatic cancer has the highest mortality rate of any cancer; half of those diagnosed with it die within six months, and 96 percent die within five years.
I approached my treatment like I approach so many things, as a scientist. And so I asked lots of data-seeking questions, and found myself hypothesizing along with my doctors. I made audio tapes of my conversations with them, so I could listen more closely to their explanations at home. I’d find obscure journal articles and bring them with me to appointments. Doctors didn’t seem to be put off by me. In fact, most thought I was a fun patient because I was so engaged in everything. (They didn’t even seem to mind when I brought along advocates – my friend and colleague Jessica Hodgins came to appointments to offer both support and her brilliant research skills in navigating medical information.
E-patient / participatory principles spotted in action here:
- Being actively engaged in your care
- Getting in action to find out everything you can
- Not being afraid to asking questions
- Not being afraid to hypothesize – to wonder what might be going on
- Doctors who like patients being engaged in their case
- Bringing along advocates
- Doing additional work outside the appointments (so not all of your wondering takes up the doctors’ time)
I don’t know if Randy Pausch even knows the terms “empowered patient” or “participatory medicine.” My point is just that this is a perfect illustration of what participatory medicine looks like, on the hoof.
I invite everyone – bloggers and guests – to post similar anecdotes of participatory medicine spotted “in the wild.” Stories like this help everyone recognize what we’re talking about. (Counter-examples are welcome, too, to show what it looks like when participation is discouraged!)