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Hugo CamposGuest post by Hugo Campos; introductory note from Society for Participatory Medicine president Nick Dawson

Every movement evolves. And as a grassroots social justice movement, the Participatory Medicine Movement is also growing, changing and evolving. Something I’ve learned about myself is how uncomfortable I get when I’m on the edge of learning or gaining understanding. For the past few months, I’ve personally been uncomfortable with some of our terms, definitions and approaches to participatory medicine. To be clear, I don’t know what the future of the Movement is — and would suggest none of us alone has that complete vision.

SPM started in 2009 by redefining the patient’s role to emphasize autonomy. Like any project, we’ve had scope creep; talking about cooperation, ethics, and the now over-covered conversations about patient satisfaction and costs of care. This is not enough. Autonomy and emancipation are totally different issues from “satisfaction” and what things cost. Our goal ought not to be to make ourselves look like everyone else – our goal ought to be to establish what’s missing, what the problem is, and to fix it.

To that end, the essay below from SPM member Hugo Campos makes me uncomfortable in a way I love. I cannot stop thinking about autonomy. I cannot unknow this idea now that Hugo has put it in front of us.

To current SPM members, friends and like-minded thinkers, I invite you to read Hugo’s essay below. Join me in starting a conversation in the comments about how this idea strikes you. Let’s discuss, debate and grow the Movement together.


Hugo Campos

“What does participatory medicine mean?” The question, posed on the listserv of the Society for Participatory Medicine (SPM), doesn’t have an easy answer. The SPM currently defines participatory medicine as “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.”

The above explains participatory medicine as a model of care which seeks stakeholder collaboration on issues related to an individual’s health (presumably with regard to medical treatment). It also promises to improve outcomes, increase patient satisfaction, reduce medical errors and the overall cost of care. It is a broad and slightly obscure definition with very lofty goals. According to this, participatory medicine promises what is already expected of our current system: cooperation, stakeholder involvement, improved health outcomes.

But, an older definition put forth by the SPM, hinted at what is really at stake here: autonomy.

It described participatory medicine as: a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

By this definition, the transformation of patients from mere passengers to responsible drivers of their health signaled a shift from patients’ traditionally passive role to a more active, self-governing one. It implied a high degree of autonomy and self-determination and resonated with me the moment I heard it in 2010. It seems, however, that in the course of the past few years we may have gotten lost.

Original illustration by Hugo Campos. License: CC-A (Creative Commons with Attribution)

Original illustration by Hugo Campos. License: CC-A (Creative Commons with Attribution)

Thirty years ago, Tom Ferguson, M.D., wrote “The seven rules for better health” (, Mother Earth News, July/August 1985). Dr. Ferguson’s “First Law” pointed out that patients provide their own illness care between 80 and 98% of the time. “You are already your own doctor,” wrote Dr. Ferguson.

As a person living with a genetic heart condition which can lead to sudden cardiac death and congestive heart failure, I can certainly relate to the spirit of autonomy recognized by Dr. Ferguson. When it comes to my health and health care, I, too, believe a high degree of autonomy is paramount. In the past, the system proved itself incompatible with my needs, or completely unavailable during the 13 months when I was forced to go uninsured due a “pre-existing” condition. This shows how extremely challenging it can be for a true partnership to exist.

Thus, a good dose of self-reliance and independence on the part of the patient is absolutely necessary when managing a chronic condition, as it would be unrealistic to expect 24/7 clinician support on the hundreds of health-impacting decisions I make every day. Surely, no one is more available than the patient herself, her family, her friends and her online network of peer patients.

There is another critical limitation to the kind of partnership that doctors and patients can develop. Much as with the the fable of the chicken and the pig, there’s a fundamental difference between the doctor’s involvement and the patient’s commitment in their care. In business, true partners share both risks and benefits. But this is not possible in healthcare, where the patient alone lives (or dies) with the consequences of medical decisions. That’s where the participatory medicine notion of doctors and patients as equal partners falls apart. Therefore, the patient alone must develop a sense of personal responsibility and learn to practice the inalienable nature of her authority over herself, if she so desires.

Consider Dr. Ferguson’s view of self-care as the predominant form of health care. This is where patients are free to fully exercise their self-determination, deciding how to eat, exercise, care for their emotional well-being, or whether to smoke cigarettes, drink alcohol and engage in dangerous or harmful behaviors. This is potentially disastrous from a public health perspective. Yet, we are tolerant of this model in part because we believe that, like ourselves, most people do not intend to make their lives worse by their own choosing.

The U.S. Census Bureau tells us that the average number of medical provider visits per year is close to 4. That’s only 4 interactions with health care per year. If patients already spend most of their time caring for themselves without a doctor’s supervision, it would seem reasonable to empower them further and trust their knowledge of themselves. To quote Dr. Ferguson’s “Second Law”, “some of the most promising opportunities for improving our health care system involve finding ways to make health tools, information, skills, and support available through lay channels”. Imagine a world where medical journals are open to public access and not locked behind a paywall.

Finally, we must think of patient autonomy as not simply a status or principle of medical ethics. Autonomy is a skill that must be encouraged, developed and maintained. Patients must engage in the practice of autonomy as physicians engage in the practice of medicine.

Alas, patient autonomy is an ideal that can never be perfectly achieved in clinical care. It often ends where it may conflict with a physician’s duty to beneficence. Even the most empowered of epatients cannot always be completely autonomous. We must accept that. There are, however, autonomous moments in care where patients can exercise self-determination. Those moments should be supported and encouraged.

Autonomy is true empowerment. It promotes patient responsibility and holds the promise to lead us to more engagement and better health. We must move beyond participatory medicine and focus on educating, enabling and equipping patients with the tools necessary to master autonomy and the art of self-care.


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