Participatory Medicine as Revolution! Think Critically! Communicate!

My son graduated from college last year and is now in Nepal, visiting schools and writing about rural education under the Maoist regime. He was excited to tell me, when I visited him recently in India, about how a classic book on education, Pedagogy of the Oppressed by Brazilian Paulo Freire, radically influenced and inspired him to readjust his career goals.

The book postulates that real revolution can occur only when the playing field is leveled between teacher and student, whereby critical thinking is infused in education and where ‘teachers become students’ and ‘students become teachers.’ Communication amongst students (i.e., social networking) is equally important in this equation. While in India I read this short book, substituting doctor for ‘teacher’ and patient for ‘student’ and indeed, feel better equipped for the PM agenda.

Freire expands upon the theories of Rousseau and Dewey, postulating that active learning, or problem solving using real-life situations, is necessary for the individual to translate theory into action or practice (this is the definition of praxis, invoking the company I co-founded in 1998, Praxis.MD). He describes and refutes traditional education as ‘banking,’ where the student is an empty account awaiting deposits or “prescriptions” from the teacher.

Sound bites abound in this little volume! See the quotes below, where I’ve italicized words that are PM substitutions or additions to Freire’s language:

To alienate patients from their own decision making is to change them into objects.

Education either functions as an instrument that is used to facilitate the integration of the younger generation into the logic of the present system (e.g., failures in health care), OR it becomes the practice of freedom, the means by which men and women discover how to transform their world.

Patients, having adopted guidelines of their health care providers and internalized his images, are fearful of freedom. Freedom would require them to eject this image and replace it with autonomy and responsibility.

Patients suffer from duality; the conflict lies in choice between…following prescriptions or having choices; between being spectators or actors.

Patients must see examples of the vulnerability of the health care system so that a contrary conviction can grow within them.

To achieve praxis, 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.

Problem-posing education rejects communiques and embodies communication. Liberating health care consists of acts of cognition, not transferrals of information. Arguments of ‘authority’ are no longer valid.

The health care system is suffering from narration sickness, where the provider ‘fills’ the patient with his narration of words, and they have lost their transforming power, become sonorous. In the banking concept of education, knowledge is bestowed by those who consider themselves knowledgeable, upon those they consider to know nothing. However, in the libertarian view of eduction, the drive is toward reconciliation of the poles of patient and doctor, so that both are simultaneously playing the roles of each other and themselves.

Health care providers who lack humility cannot communicate with their patients, cannot be their partners in naming and understanding the world. 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.

It is only as patients rethink their assumptions in action that they can change. Understanding and acting upon their own health concerns—not consuming ideas of others—must constitute that process.

Why do newspapers present different interpretations of the same fact? It is indispensable to analyze the content of newspapers following an event. This practice helps develop a sense of criticism, so people will react to what they read not as passive objects but as consciousnesses seeking to be free.

Participatory medicine cannot tolerate an absurd dichotomy in which patients are merely following their doctors’ decisions—a dichotomy reflecting the prescriptions of the dominant elite. Revolution is a unity, and doctors cannot treat patients as their possessions.

The dialog which is radically necessary for the participatory medicine revolution corresponds to another radical need: that of women and men as beings who cannot be truly human apart from communication, for they are essentially communicative creatures. To impede communication is to reduce men to the status of things.

As a publisher, content developer, scientist, and occasional patient, this book set me on a new path, brainstorming how critical thinking can be more forcefully injected into patient education materials. I expect the forthcoming Journal of Participatory Medicine (watch this space) will gather and present some revolutionary ideas in this vein –with your help and ideas? Let’s communicate.

Sarah Greene (@sgreene24) is a publishing entrepreneur and is currently President & CEO of the nonprofit Rapid Science. She was formerly editor-in-chief of The Scientist, created the products Current Protocols, HMS Beagle, Best Practice of Medicine, and Praxis Post, and served as a trustee and board member of ACOR, CFAH, Cancer Commons, and Keas. Sarah co-founded the Society (and Journal) of Participatory Medicine.

This is mind-blowing way beyond the usual mind-blows. I confess that at first glance I was put off by Rousseau and Dewey (“Oh crap, this is way smarter than me, it’s an egghead paper, out of my league”), but I’m glad I stuck with it to get to the bullets.

That is REALLY something.

So, now, here’s a puzzle, or maybe not. I’ve always felt that education without enablement (empowerment?) was useless: if I didn’t leave a course knowing how to face problems on my own the education had failed. Is that what we’re talking about here?

What’s the difference between this and “teach me to fish and I eat for a lifetime”?

Thanks, Shelley! – and yes Dave it does seem obvious. Just like ‘war is bad’ and ‘peace is good’ and ‘evolution happened.’ Participatory Medicine will obviously make outcomes better and people healthier but that’s not the current paradigm. Not to get all eggheady again, but Thomas Kuhn’s The Structure of Scientific Revolutions postulates that ‘scientific theory does not emerge from the straightforward accumulation of facts, but rather from a set of changing intellectual circumstances and possibilities.’ It’s beginning to seem like those circumstances and possibilities are gaining momentum, but a lot more intellect, energy, and rowdiness need to be applied for the paradigm to shift. (And thanks for the minor quake you provided on these pages.)

Don’t get me wrong, I don’t mind eggheady – I meant it when I said “I confess.” It was a dumb reaction on my part!

And yeah, I’m aware of Kuhn’s book. He also said that science is a fashion industry, where people who have the audacity to say something that’s out of step with current fashion get ruthlessly ostracized. One example was Judah Folkman, “just a surgeon” (not an oncologist) who saw that cancers in the body had thriving nests of blood vessels around them and proposed that the growth of vessels (“angio genesis”) was a fundamental part of tumor growth. He was ostracized, even losing his department chairmanship, but stuck to it. He proposed and even named two enzymes, angiogenin and angiostatin, that promote and stall vessel growth.

Eventually he found those enzymes and proved the process, which become the foundation of perhaps the most hopeful cancer treatments, anti-angiogenesis drugs such as Sutent.

Another example, I’m told, is Robin Warren, the Australian doctor who went against what “everybody knows” and said stomach ulcers are caused by the helicobacter pylori bacteria. He too was ostracized and belittled, but 20 years after he published his paper he got a Nobel prize.

I guess history shows that derision by the scientific community is not a reliable sign that something is wrong. We all need to be responsible for our own decisions and for educating ourselves as much as we’re each able.

[…] My definition of Cargo Cult HIT is based on Nobel Prize winner Richard Feynman’s famous Caltech commencement address given in 1974 (CARGO CULT SCIENCE) and as you’ll see if follows nicely both David Kibbe’s beautiful parable, e-Patient Dave view on Meaningful Use and Sarah Greene’s statement on Participatory Medicine. […]

Sarah, this is a wonderful blog post with deep conceptual understanding about the difference between the current model and the model that we can begin to envision, the Participatory Medicine model. At this point it is more a philosophy than a description of medical reality, because the questions swamp the answers, and in the customary world of medical practice, examples get drowned out by the current, paternalistic model of medical practice and many of our most reverred medical spokespersons still view this concept as “fringe”. But, that is changing rapidly as more patients, and providers alike, catch the vision.

But, what will the colleges of medicine and university hospitals do to educate students to function in this new world? What will we do to change the current culture, or must we simply wait til all of the recalcitrant incumbents disappear from the field? In short order, if this discussion is to truly sprout wings, we will have to deeply change the training, content, and staffing models of our current educational institutions.

At any rate, you have described the coming adventure in compelling terms with your wonderful “sound bites”!

[…] For ongoing discussion about why participatory medicine matters, stay tuned to this site, with engaging and disruptive posts written by my colleagues @epatientdave, @gfry, @susannahfox, @docjohng, and others. This is the source and inspiration for our coming journal and society. (And for more on the visionary educator Paulo Freire and his prescription for e-patients, see my earlier post: Participatory Medicine as Revolution! Think Critically! Communicate!) […]

[…] that caught my attention, as it hearkened back to a piece I wrote for e-Patients.net – Participatory Medicine as Revolution! Think Critically! Communicate! – some while ago. I’m on permanent watch for the “R” word, and though I’ve been on the […]

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Welcome

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual's health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.