Participatory medicine is about probing the very essence of the relationship between “doctor” and “patient”, with the starting assumption that the slope between these two parties is flat, not sloped with the provider “above” the patient.

When the relationship is functioning optimally, optimal care results because the provider and the patient participate in the relationship as equal beings, both invested in it and in the outcome. Participatory medicine creates the stage where this dialogue can play out and we can bring attention to the issue and change to the system. Through it, we can teach patients to take responsibility for their own health through using the internet (and other means) to research their questions and learn how to effectively get them answered. Through it, we can teach providers how to effectively invite patients into this process and can provide them tools and encouragement to do it.

I agree, in a sense, that it is a shame that this concept is even necessary, but it has incredibly exciting and energizing potential to facilitate a powerful liaison of these two ‘halves’ of the equation.

This implies a flexible relationship between individuals, rooted in bi-lateral trust, and reasonable compromise at times.

“Participatory Medicine IS the end of paternalism in medicine. It is a shift of both ownership and responsibility in health, from the various professional proxies to the health citizens. It requires:

full and free access to all the health data and knowledgebase,
complete transparency about all possible treatment decisions,
shared trust among all those involved in the care of an individual and
an acknowledgement that optimal care requires a new understanding of the health citizen individual rights and common responsibilities.

”

Simple, huh?

“Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (healthcare professionals, patients, caregivers, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health. The Journal will explore the extent to which outcomes are affected by this model of shared decision-making.”

So what is the “essence”? Perhaps this definition describes the what but not the how? Many of the smart comments above (thank you!) point to how—i.e., knowledge, transparency, and trust. To borrow again from Freire’s “Pedagogy of the Oppressed” (last week’s post), PM as revolution:

“It is necessary to believe in e-patients and their ability to reason. Whoever lacks this trust will fail to initiate dialog, reflection, communication, and will fall into using slogans, monologues, and instructions.”

“At the point of care, there are neither perfect sages nor ignoramuses; there are only people, who are attempting together, to learn more than they now know.”

“Liberating health care consists of acts of cognition, not transferrals of information. Arguments of ‘authority’ are no longer valid.”

So Gilles, are the essential ingredients here for a more robust definition?

So first and foremost must come trust, which is not created “on-demand”. It is an organic event.

Just try fitting that physician/patient “energy” into “productivity” formulas stipulating 30/40+ patients per day, per primary care physician. Just don’t see it “baking” under those conditions; which is why so many docs will exit the current system in favor of retainer or boutique practices.

The drip, drip, drip, outmigration we are witnessing is likely to acquire tsunami like momentum; particularly if health reform can’t deliver on primary care payment equity, and massive re-design of the litany of administrative disruptions to care process. I was just sayin’…

Thanks for putting this out there!

In my recent trip to Steelcase HQ, I learned about the concept of “participatory design” in health care, and I wonder if talking to experts in that field would be a good resource. It could be the companion to participatory medicine just as “evidence based design” is the companion to “evidence-based medicine”

That aside, what it means to me (at the end) is that those who are cared for are comfortable seeking care and confident in managing their care because they and those who are close to them (family, community) are fully involved in all aspects of the care process, at the level that they want to be.

Other idea I think about is “in front of the counter/behind the counter,” which I blogged about previously, ( http://www.tedeytan.com/2008/09/25/1819 ). Participatory medicine may not require that a patient and their family be “behind the counter,” but they should be allowed to be, to improve the system, and at the very least, the innovation and information being passed around behind the counter should be visible in front of the counter, just as the calorie counts at any New York restaurant are….

On David’s 2 follow-up questions:

[What data and information about myself, my health, and my health care, do I need to access?

and:

What are the barriers that currently separate me from those data and that information?]

My thoughts are:

1. Am I safe making these disclosures, i.e., what I know, think I know or am concerned about?

2. Will he/she listen to me without judgment? Will I be I valued, if I can’t “cut to the chase”?

3. Can we speak in a common language or be on the same page? Can trust be established for a fact based understanding (communication) to unfold, or will both of us be wrapped up in story or pre-mature judgments?

4. What information does the physician need from me?

It seems the inherent power differential is the 400 pound gorilla in the exam room. Can the interaction be other than a “one-up/one-down” exchange, i.e., man-to-man, or woman-to-woman so to speak v. professional to clueless or needy petitioner?

Seems to me that when the playing field is leveled the likelihood of honest disclosure goes up as the accuracy of judgment as to the nature of the problem as will as the most appropriate remedy.

Participatory medicine transpires where good content gets contextualized for the specific needs of a particular patient/consumer and effective communication helps to facilitate an interactive dialog. That interaction should support one or more of the following: informed/shared decision making; effective behavior change or support; and/or coping or practical support.

For background on how I got there, see today’s post at http://ixcenterblog.org/.

What data and information about myself, my health, and my health care, do I need to access?

and:

What are the barriers that currently separate me from those data and that information?

DCK

To put it into a metaphor, I know quite a few doctors are fine or capable or beginner student musicians, or have a serious music-listening hobby. I, a musician who has studied musicology at university, wouldn’t dream of tell them they couldn’t possibly understand advanced musical theory so they should just leave their musical decisions to me and they should probably never listen to any Schoenberg because they will never understand it. Now, why is it so hard for so many of them to understand that a musician could likewise have a solid understanding of science, particularly as it relates to human medicine? I read extensively particularly on my own conditions and make a conscientious effort to learn. [Noting that there are of course snobby muscicians who look down upon anyone who learns by ear and can't read music, etc.] My music teacher instructs me on theory and interpretation on my instrument, and encourages questioning; she doesn’t dictate what repertoire I must learn but discusses with me pieces that suit my technique and aesthetics and which will help me develop. But a doctor’s not a teacher, you say. No, but perhaps they should at least be sharers and guides and communicators.

This guarding of medical knowledge like it was a rare and precious flower that will wilt if the common people look at it just seems unneccesary. Sharing knowledge is good. Keeping it in silos doesn’t help anyone except the medical establishment.

There’s my thoughts. Some of them. :)

@PKDnotes on Twitter if anyone else is there!