e-patient Dave wrote me recently and asked:
Do you have a post you’d like to submit, in which you discuss Participatory Medicine either philosophically or from the physician’s perspective, so that docs and health leaders who read it think “Man, there just might be something to this”?
His request hit on a self-acnkowledged weakness (or strength, in the social media world) of mine, which is that I am not good at being prompted what to write. So, even though I missed the terrific Participatory Medicine Grand Rounds, I thought and thought about it, and I decided (spontaneously) to write something, and to show something.
What I want to write
In a post I wrote after visiting the team behind the MiVia.org personal health record for farm workers in California, I laid out this scenario. See if it helps you visualize what it could be like not to participate in your own health care.
Imagine that you were working internationally and had a serious stomach ache and needed to see a doctor. When you went into the medical clinic, the doctor asked you what medicines you were taking and what the status of your medical conditions were. What if you didn’t know or couldn’t tell them because you were in so much pain or you had seen a doctor but they didn’t give you a copy of your medical record. What if you lived in that same community for 5 years, but weren’t sure if you needed any medicine or treatment to prevent illness, and no one was keeping track. What if it felt like you didn’t belong….
Maybe this scenario is not far off from the health care you receive today, in the United States.
The title of the post is “Because Everyone Wants to Belong.” An important reason for supporting Participatory Medicine is that everyone not only wants to belong, they deserve to belong.
What I want to show
It shows the work of a person who fought to promote participation, Eunice-Kennedy Shriver. The artist is David Lenz – “Lenz, whose son, Sam, has Down syndrome and is an enthusiastic Special Olympics athlete, was inspired by Shriver’s dedication to working with people with intellectual disabilities.” (source: wikipedia)
She set out to change the world and to change us, and she did that and more. She founded the movement that became Special Olympics, the largest movement for acceptance and inclusion for people with intellectual disabilities in the history of the world. (from Statement from the Shriver Family)
You can see the drive … in her eyes. This is what excites me about participation. I can’t help it.
See if you think there’s something to participation in any or all of the above; thanks for reading, and watching.