Last week, I had a brilliant idea: have my son blog about his first official experience with information therapy.  He had just received his first after-visit summary.  He’s bright and creative, so I was sure he would come up with something good.  As it turns out, he didn’t have much to say about it.  I proceeded to show him his newly and barely populated PHR (personal health record).  He was still unimpressed.  Now might be a good time to mention I bribed him with Internet access.  “After you write about information therapy, you can play on the Internet.”  He was in a hurry to get this over with so he could do (apparently more interesting) things on the Internet than look at a lousy PHR.

This is where I jump in and tell him that when I was his age, I had to wait for 2 to 3 hours in the waiting room to see my doctor (you know, the “When I was a kid, I had to walk uphill in the snow to school…both ways!” story).  I only went to the doctor when I was sick.  The doctor would promptly produce a small white piece of paper (an Rx), and that was the end of my visit.  I hated going to the doctor and had never heard of prevention and would never expect the doctor to explain what he/she thought was wrong with me.  I would have never thought he/she would discuss my treatment options with me or ask me, “Would I like to try medication for it?” or “Would I like to try some preventive approaches to avoid this happening again in the future?”.

Fast forward 25 years and I have a kid who does not appreciate how far the health care system has come.  I really can’t blame him, though.  Information Therapy is kind of like, “Duh!”  It’s a no-brainer.  It’s an “invention” that is so overdue that when it finally appears you ask yourself, “How have I lived without this for all these years?”.

“Mom, I wrote the blog.  Can I go play on the Internet now?”

There’s a really interesting thread at e-patients.net about the use of participatory medicine. There are some really good comments from patients and professionals alike about what lessons can be learned from participatory medicine experiences.

It reminds me of what I wrote about here a couple weeks back about my experience with my son’s asthma attack. Going through the experiences ourselves is definitely the best way to learn about it–even though we would never wish it on ourselves or anybody else.

It also reminds me about the challenges of communicating what we mean by “participatory medicine”–or for that matter “information therapy” (Ix) or “shared decision making” (SDM). That was the subject of the most recent IxCenter white paper, which attempted to bring some ideas to that conversation. Getting over the semantics and communicating about better communication is something we still need to figure out better.

Lots of innovative ideas for how to advance participatory medicine will be shared at our 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care.” Among other things, I’m particularly looking forward to hearing from some “real patients” who will be there to share their stories.