Ted Eytan has a post by this name. It’s a question asked of him by Ann Barber, MD. I couldn’t be happier!
His post and the comments have gotten lively. I posted about Chapter 2 of e-Patients: how they can help us heal health care, which includes the seven preliminary conclusions. Ted replied:
Chapter 2 is a great call to action! In a way, finding that place in the world as a physician in (name your city) where you can support Health 2 is much like finding a doctor – word of mouth. There’s really no specialty society called “American Academy of Participatory Medicine.” Or is there? Or should we create one? Virtually? With its first brunch in DC this year?
Jen [McCabe Gorman] are you listening?
I may network some around this at Health 2.0.
Game on?
Yes, both a Journal of Participatory Medicine and a Society are on their way, springing out e-patients and the Cooks Branch Initiative. The Journal will be the publication of the Society. Anyone interested in participating in either or both, let us know here.
Alan
The Journal of Participatory Medicine will of course be an Open Access publication for peer-reviewed articles.
The time has come to treat the multiple developments that the internet connectivity have brought to the modern world of medicine with a little more scientific clarity. I think the Journal may be one of the tools necessary to bring that change.
I’d like to reiterate Alan’s call but make it more e-patient centric: if you are an empowered patient or you are empowering patients with one the many incredible internet resources that you have created we would love to have you participate in either the Journal, the Society or preferably both.
Alan and Gilles,
Can we find a way to have visibility (and even open participation) into these processes? There may be many many minds out there that are more than happpy to contribute.
What we’d like doctors to do is participate in the dialogue, share their side of things. Yesterday I returned to the radiology office which originally misdiagnosed my daughter. Fate in the works!
I gently suggested to the radiologist, after he explained my films, that his office had misdiagnosed my child. No, I didn’t want him to be defensive; it was not a personal criticism. Rather, I wanted him to be aware. What’s to lose by referring a patient like that to a large medical center? (except for her life, which I didn’t say).
He was unaware of this week’s Gina Kolata Science Times article on MRI’s. He promised to read it. The reversal of the flow of knowledge was awkward for both of us.
In my (and their) experience, the docs are just too busy for such inessentials. We want them to see that they are too busy NOT to be aware of the e-medicine community.
Our relationship with my daughter’s surgeon changed considerably after I had looked up his credentials (from a different website than that of the hospital) and discovered that he had graduated from Yale and Johns Hopkins. It changed even further when I found out from our certified case manager that the discount rate for clinic visits was ridiculously low, $50/visit or something. Meaning the docs were probably dismayed and disgusted at the idea that a patient would want more than a twenty minute visit, even on something like a cancer surgery.
It’s all in opening up the flow of information — both ways.
Christine, that’s perfect. It’s a great example of what we mean by “participatory medicine.” I hope you’ll participate in the crowdsourcing of defining participatory medicine.
A factor that’s too often overlooked, by both providers and patients, is that “Clinicians can no longer go it alone.” That’s #6 in the “Seven preliminary conclusions” presented in Chapter 2 of e-Patients: How they can help us heal health care, aka the e-Patients White Paper.
When everyone accepts that, participatory medicine will become a blindingly obvious solution.