I had never heard of an empowered patient or “participatory medicine”
In the spring of last year, I began to blog as Rheumatoid Arthritis Warrior. I knew there were other patient blogs. I’d seen a couple – literally. I remember I’d read a few entries of Sara on Health Central and one other by a young woman with RA.
Over the next several months, I found dozens of other patient blogs. Through Twitter, I heard the word e-patient (an abbreviation for empowered patient) and read some pages on e-Patients.net. Eventually, I began to also read some articles about healthcare social media. (The posts on this site relating to these topics are tagged healthcare social media.) It slowly dawned on me that my work was part of a greater movement toward patient empowerment.
Why read the empowered patient book?
Over the last year, the most prominent leader in the empowered patient movement has been Dave deBronkart who often goes by e-Patient Dave. This spring, Dave published his first book, Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).
I didn’t buy the book for 3 reasons.
- I already work so many hours I don’t sleep enough. There are piles of books & magazines around me I don’t have time to read.
- I thought I might already know a lot of the lessons since I’ve absorbed this stuff like a sponge every day. For example, last year I learned from experience to Read the Doctors’ Notes & I told my readers they should too.
- I don’t have cancer and I’m already using the most aggressive treatments available for my Rheumatoid Arthritis so I don’t need it.
This past week, I did buy the book for 3 reasons.
- I do need it. We are not as empowered as we ought to be. I want to see this expert example (Dave) up close.
- Another patient blogger on Twitter was enjoying it & I’m afraid I’ll miss out.
- I was already making an Amazon order.
Journaling Laugh, Sing, and Eat Like a Pig
It’s pretty simple really. After reading the first chapter, I had an urge to write down my reactions. I thought I’d open a file, save up my notes and write a review eventually. Then I thought, why wait? I can share my experience with you!
I’m planning to write my reactions to the book as I read right here on this page. I’ll keep the comment section open so we can make it a conversation. Maybe some of you will read the book with me! Please come back soon to read my reaction to chapter one below.
Recommended reading on this site:
- E-patients’ Role in Healthcare Social Media: Do Doctors Hate Blogs?
- Patient Assertiveness
- My Rheumatoid Arthritis Blog: 200th Post!
- Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
- Rheumatoid Arthritis Therapy: Is That What Blogs Do?
Aug 8 – I’m tempted to skip a preface. But the 3 introductory essays looked different. Let these experts tell me why I should read this book. They are probably on our side!
Historical role of pts and docs. Yep. That seems like a barrier.
I had to tell people out loud about the 3 types of information Dr. Sands describes. It was a big revelation to me last year when I saw the doctor’s notes. Since I started recommending patients get ahold of them, there have been very interesting stories in comments!
I read Dr. Sands’ words repeatedly, thinking. “Where do you find doctors like that?”
Probably information is a cornerstone to empowerment. Three kinds: Your history, medical literature, your records.
I felt empowered just reading these essays. Levy talks about how much patients can contribute to their health decisions/ outcome. “Shift the balance of power in clinical settings into a true balance of power, one based on mutual knowledge, respect, and empathy.”
Matthew Holt: “Dave had online messaging with his physician, and someday everyone will.” Epic change.
Dave looks back over his patient life. 4 lessons he learned from early experiences:
1. Its’ up to me.
2. When your instincts say scram, scram.
3. If they think your feelings are your problem, you might want to find someone else.
4. It’s worth traveling to find a doctor you work well with.
I don’t know what the definition of learning a lesson is. But I think I might want to learn these better than I already have. I know these facts because I’ve had these experiences too. But I’m not sure I won’t let myself get burned again. This chapter had me re-evaluating some current decisions.