ePatientDave and Giles Frydman have been working on the Society of Participatory Medicine for a while and Alan Greene MD will be the first President. Now there’s a editorial board for the Journal of Participatory Medicine. The editors will be Charles W. Smith (who announced it at the end of last month at his blog eDocAmerica), and Jessie Gruman, patient extraordinaire from the Center for Advancing Health. There’s also an advisory board including Kevin Kelly, Adam Bosworth, Esther Dyson, David Kibbe, Howard Rheingold, Eric von Hippel, & Peter Yellowlees—which is a good mix of Ubbergeeks and geeky doctors.
Expect amazing things from the forthcoming Journal of Participatory Medicine.
The group of Editorial Board Members assembled was carefully and conscientiously done, and I can't wait to see the material that results.
Congrats to all - we're entrusting you with the challenge of surfacing patient-centered solutions for the industry in a reputable fashion.
It's a great deal of responsibility, but Dave and Gilles, from speaking with you, I can't imagine a better team to carry this off with style and substance.
As you embark, please keep in mind a few things I strongly and utterly believe 'participatory medicine' entails.
The first is a more developed concept of what it means to participate, via explorations of choice and control (or lack thereof) in the healthcare system.
Some building blocks of the Choice/Control Aware Care theory are listed below.
Like the alphabet blocks we use in pre-school, they are simplistic but vital to expound into larger narratives:
1. You can still respect the person even if you don't respect his/her choice. (ie, someone chooses NOT to participate in his/her care continuum, but follow the dictates of her doctor).
2. To make an informed choice, literacy is NOT the most important factor. Nor is $. The most important factor is knowing what you can/cannot control, and having the tools/services/processes at hand to acknowledge and discuss this openly.
3. Participation ("participatory medicine") is a CHOICE. Respect (and protect) those who do NOT choose to be actively engaged.
A danger I see ahead is assuming that all patients will wish to be engaged at the same level of involvement at all times (ie, they will become highly actualized super e-patients like 'us' if we just give them the tools and a system that encourages this).
Participatory medicine must promote equivalent engagement that is CHOSEN subjectively, at will, by each patient.
Saying all patients will want to engage in participatory medicine is like saying all women love chocolate. Even if it's true, mass generalizations can blind us.
The process of searching each node of participatory interaction in medicine - as they currently occur - and surfacing them for more rigorous examination, research, and study, is a noble and necessary cause.
All we've been missing is a forum that legitimizes this exchange outside the frenetic Twitter conversations and HealthCamp meetups. The Journal of Participatory Medicine has the potential to 'represent' in a way that enables all of us to devote more time, energy, money, and political capital to doing so.
Thank you for this chance. Now the responsibility lies with the rest of the community - we must to CHOOSE to use it.