Participatory Medicine: What Is It For You?

As the meme is now firmly accepted, I thought we ought to have another round of definition crowdsourcing.

If you use the term please stop here for a minute and let us know what it means to you.

I will summarize the responses and use the results to update the wikipedia page on Participatory Medicine.

Thank You!

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32 Responses to “Participatory Medicine: What Is It For You?”

  1. Participatory Medicine: What Is It For You? Come in & help us better define the meme. http://bit.ly/FJ2ci

  2. RT @gfry: Participatory Medicine: What Is It For You? Come in & help us better define the meme. http://bit.ly/FJ2ci >>great community<<

  3. Retweeting @gfry: Participatory Medicine: What Is It For You? Come in & help us better define the meme. http://bit.ly/FJ2ci

  4. Ok Gilles – I’ll get the ball rolling here…

    Participatory medicine means all involved parties, from medical professionals to patients, share in a collective decision-making process on behalf of the patient. Medical professionals are the primary resources for the patient. The patient is the focus and the final decision-maker.

    Instead of medicine being focused on the system, process and money, it is instead focused on the best possible outcome for the patient.

    Just typing out loud here….

  5. David C. Kibbe, MD MBA says:

    I think that Participatory Medicine is a style of medical engagement that brings patients into the conversation at every stage of decision making. It recognizes that there should be “nothing about my care without me.” We are vulnerable, the community can learn, everyone can become an expert. DCK

  6. Need your input tweeps! >>: Participatory Medicine: What Is It For You? Come in & help us better define the meme. http://bit.ly/FJ2ci

  7. For mois, “participatory medicine” need recognize entanglement as the granular context in which all events or processes realize their potential, including those of the medical variety.

    There is no separation, there never was dating back to the big bang. Thus, no true objectivity between healer and the infirmed is possible. There is and always will be relationship that influences outcomes, regardless of the premium placed on clinical detachment.

    The notion that distancing or detachment is desirable (think Freud and a couch or Dr. Jones your “appy is prepped and ready in OR2”), let alone possible, is absurd; consider the behavior of electrons under the influence of monitoring devices.

    The one-way distribution of knowledge from expert healer to the sick was and is a flawed model and paradigm based on a fundamental misunderstanding of how people and things interact.

    The physician as healer must be a participatory engagement with his/her subject, and a premium need be placed on the value of context building in order to obtain authentic inputs (“data”) for diagnosis and treatment purposes.

    To this end, physicians need be focused (and fairly remunerated) as agents to empower their patients in the healthcare mission.

    Bottom-line, participatory medicine is about intimate and transparent disclosure on both sides of the patient/healer divide. Yet, to leave a role based engagement model outside of a complex and often fear based exchange relationship will take a considerable amount of courage.

  8. Robin says:

    I think transparency is a key term with participatory medicine. @doc_rob and I had a twittersation the other day (which I meant to go back to and forgot…life got in the way) about who owns what with EMRs/PHRs.

    doc_rob: @ePatientDave That’s why I think “my data” is flawed when thinking of medical records. Some has ownership (my personal notes on it)

    doc_rob: @ePatientDave but most should just be accessible to anyone who has need.

    staticnrg (me): @doc_rob How imp. is it for doc to retain ownership of notes? Since about “me”, why should I not have them? Does it affect quality of care?

    doc_rob: @staticnrg Docs are wary of others owning their opinions. Data is different than interpretation of the data.

    doc_rob: @staticnrg Patients should have access. Sure. But should the own my interpretation?

    staticnrg: @doc_rob Thanks. In database field, data is anything in the database. Sincere question: Since I pay for doc’s interpretation, isn’t it mine?

    doc_rob: @staticnrg You pay for the final product, not the notes that got me there. You pay for the plan, not the thought process.

    staticnrg: @doc_rob If anyone else gets to see that thought process, then so should I. No time now to iterate more, but will later. Thank you!!

    doc_rob: @staticnrg I agree with that. you should have access to the thought process, but not own it.

    THat’s as far as we got. I know I’m going around Mars to get to the moon, but I think it’s important to this definition. Do I own his thought process? Or is “own” too confining? I know when I get my car worked on or when my financial advisor makes a recommendation, I don’t just do what either one says. I want to know WHY!! I pay for that thought process, so I believe it is valid to have it. I guess I don’t own it…but yet, if he gives it to me, it is mine, too.

    Here is where transparency comes in with the participatory part. In order to be truly participatory, both sides need transparency. My doctor already demands that I be transparent. SHe wants to know when I did this and how I did that… What do I eat? How do I feel? Do I exercise, smoke, vomit or otherwise…. It’s demanded, but not always accepted. SHe still tests (often unspoken as to reason except she knows I’m on to her) to see if I really ate low carb. My A1C tells the tale and that I’m telling the truth. She grins and has the decency to turn red when I joke with her that I know that.

    This brings us to trust. It is going to have to be a part of this process, and we all know that trust is sometimes broken. I have seen/heard too many docs on the blogs and otherwise malign patients because they didn’t believe them. I’m sure that’s the case so many times, but as many times and more it is NOT.

    Who owns data? How transparent should it be? How do we gain that trust? All those are part of the participatory process.

  9. Robin says:

    RT @gfry: Need your input tweeps! :Participatory Medicine: What Is It For You? Come in/help define meme. http://bit.ly/FJ2ci (@doc_rob ?)

  10. Shelley says:

    Wow Gregg!
    Participatory Medicine: Empowering patients with medical and financial knowledge regarding their health care choices so they can incorporate all into their decision making.
    Shelley

  11. Dr. Rob says:

    It is sad that we have to consider a concept like this. Medicine has become paternalistic with doctors excluding patients from the process because “they don’t know.” It is the equivalent of your banker telling you where to spend your money. The doctor is a participant in medicine, not THE practitioner. When I practice medicine, I do whatever I can to educate my patients so they understand what we are doing and why. Why do I do this? Because my goal is to get the patient as healthy as possible, and the patient is far more important than I am in the process. Plus, the patients have a far bigger interest in the outcome of decisions.

    This does give patients equal right to “doctor.” I have my role, and that is to educate, direct, and diagnose. It is not the patients PRIMARY job to diagnose – a fact that some “empowered” patients seem to forget – BUT, they are crucial in the process and sometimes do come up with the diagnosis. I participate in the patient’s care by playing the role of someone with education, experience, and skill.

    On the flip side, the doctor does not decide for the patient. In the end, it is the patient’s life and even their money. If I doctor well, however, I can direct them toward the decisions that will most help them.

    That is why, by the way, I don’t think it is wise for people to demand all of their information. They should have access to it if they want, but patients sometimes (In my experience) get lost in the flood of data and don’t have the knowledge or experience to mine through it all. They pay me to do that, and while I should not hide information from my patients, I do sort through the information far more efficiently than someone without my training.

    So to answer your question…participatory medicine is medicine where all parties are engaged in their roles as thoroughly as possible. Patients have all the information they need to make informed decisions and doctors are empowered to advise and sort through stuff.

  12. Sherry Reynolds aka @cascadia says:

    Well even though it is intimidating to follow David, Greg and Trisha I will share my thoughts.

    For me an important aspect of participatory medicine is to recognize that it is a subset of the larger groundswell and social movement that is connecting people with one another and shifting the source of expertise from one to many.

    @cascadia –
    Sherry Reynolds

  13. Lodewijk Bos says:

    Here is my presentation on the subject last week at the European WHCC.
    http://www.icmcc.org/2009/05/14/presentation-whcc-europe-2009/
    Lodewijk Bos

  14. 8 responses so far but need at least 30! >> Participatory Medicine: What Is It For You? Come in/help define meme. http://bit.ly/FJ2ci

  15. The term “Participatory” medicine shouldn’t be necessary. All medicine should be participatory. Patients/caregivers must know their options, the consequences of each, and participate in the strategy and execution of their care. The Internet is a facilitator for finding and exchanging but participatory medicine is only possible if the health care professionals and patients adopt the philosophy described above and agree to apply it. So the real limiting factor is the general culture and individual psychology.

  16. PKD Notes says:

    For me, participatory medicine is all those things mentioned above, but including that the doctor recognises that I am not an idiot or unable to understand human biology/chemistry/etc, and is willing to discuss things with me on a certain level, and not act patronisingly if I get something wrong or suggest that they have got something wrong.

    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!

  17. David C. Kibbe, MD MBA says:

    Dear Commenters: I think there might be another question to ask:

    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

  18. SusannahFox says:

    Great comments so far! RT @gfry Participatory Medicine: What Is It For You? Come in/help define meme http://bit.ly/FJ2ci

  19. RT @SusannahFox: Great comments so far! RT @gfry Participatory Medicine: What Is It For You? Come in/help define meme http://bit.ly/FJ2ci

  20. RT @SusannahFox: Great comments so far! RT @gfry Participatory Medicine: What Is It For You? Come in/help define meme http://bit.ly/FJ2ci

  21. […] Two pieces in the health blogosphere caught my attention as being connected even though they were ostensibly about different topics. The first, by Tom Lee (the California Dr. Tom Lee, not the Boston one), appeared yesterday on the California Healthcare Foundation’s iHealthBeat site (actually not officially in the “blogosphere” because it’s a “Perspectives” piece rather than a blog post): “Is It a Matter of Time Before Physicians Are Replaced by Expert Online Medical Content?” The other is a collection of insightful thoughts on the definition of “participatory medicine” triggered by Gilles Frydman on the e-patient.net …. […]

  22. Gilles, thanks for starting this fantastic discussion. Here’s one way of looking at it:

    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/.

  23. carlosrizo says:

    RT gfry Participatory Medicine: What Is It For You? Come in/help define meme. http://bit.ly/FJ2ci

  24. Ditto on the gratitude to Gilles for the thread!

    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.

  25. 14 better than 8 but not yet 30 :-( Participatory Medicine: What Is It For You? Come in/help define meme http://bit.ly/FJ2ci

  26. Ted Eytan says:

    Gilles,

    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….

  27. Ted;

    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’…

  28. Sarah Greene says:

    The definition put together by the e-patients.net board, including those of us on the steering committee of the Journal of Participatory Medicine, is a good start, but according to Gilles lacks a vital essence:

    “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?

  29. I asked for definition but didn’t give mine. So I’ll start with the short version:

    “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?

  30. Andy Mikulak says:

    Participatory medicine = collaboration.

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

  31. A shift from an intermediation to an apomediation model – similar to the transition during adolescence from child to adult.
    Requires knowledge, self-efficacy, and autonomy.

  32. Charlie Smith says:

    This is an exceptional thread of thoughtful comments. I will add my thanks to Gilles, and mention that I am very excited about the challenge of accepting the Co-Editor in Chief of the Journal of Participatory Medicine. In my view, Participatory Medicine is not a new “field” in Medicine, but a platform upon which we have invited a fresh, new, and vigorous dialogue among “patients” and “providers” who have often felt disconnected from each other.

    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.

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