Crowdsourcing the Definition of Participatory Medicine

“Crowdsourcing: the act of taking a job traditionally performed by a designated agent and outsourcing it to an undefined, generally large group of people in the form of an open call.”

Jeff Howe

Or in other words Participatory Outsourcing.

There is clearly a growing interest in Participatory Medicine and with the forthcoming Journal of Participatory Medicine and the Society of Participatory Medicine. Before the launch of these new resources we should get a definition of the term that will be of equal use when explaining participatory medicine to either health professionals or patients/caregivers.

Considering the topic, it seems natural that, just as Ted Eytan did a few months back and Susannah did a couple of weeks ago, we should crowdsource the definition of Participatory Medicine!

My latest definition is :

Participatory Medicine is a cooperative model of medical care, actively involving the patient (or the patients caregiver as appropriate) as an integral part of the full continuum of care.

It requires:

  • a patient enabled by information, software and community
  • equal access to all the clinical and scientific data related to the patient and,
  • a well defined shared decision-making process.

There is a direct connection between this definition and Ted crowdsourced definition of Health 2.0:

Health 2.0 is participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself.

Susannah Fox in her first post on the topic said:

Participatory medicine is the space in between “doctor knows best” and “leave the e-patient alone” to find their way on Wikipedia.  I think participatory medicine is what Eric Raymond calls a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence.

Finally, the wikipedia entry states:

Participatory Medicine is a model of medical care in which the role of the patient is emphasized.
Participatory medicine is a new model of medical care, based on the development of a team that includes the e-patient, patient groups & specialized social networks, the entire care team, and clinical researchers in a collaborative relationship of mutual respect. It requires equal access to all the data and equal rights in the decision making process, based on all the data available, the information gathered and the collective wisdom of peer social networks . It is based on the understanding that optimally treating an individual patient suffering from a complex medical condition is often beyond any single individual’s ability [….]

Participatory medicine is a phenomenon similar to citizen/network journalism where everyone, including the professionals and their target audiences, works in partnership to produce accurate, in-depth & current information items. It is not about patients or amateurs vs. professionals. Participatory medicine is, like all contemporary knowledge-building activities, a collaborative venture. Medical knowledge is a network.

We have the truly unique opportunity to define a medical term before it becomes in wide use. We should use the blog to democratically achieve this goal!


Posted in: general | trends & principles




22 Responses to “Crowdsourcing the Definition of Participatory Medicine”

  1. Judy Feder says:

    Great post, Gilles. It’s so helpful to see the various definitions “face to face,” as it were. I have serious problems with two phrases: “actively involving the patient” and “the role of the patient is emphasized.” Why? Because they suggest legitimacy of healthcare where the patient may have little or no role at all. Now, we all know the reality — that the patient often feels as if he or she IS ancillary to the proceedings, but think about the logical absurdity: healthcare without patients. The fact that we even need to assert that patients have a role shows why we so desperately need the e-patient movement, and a formal definition of Participatory Medicine.

    This isn’t very elegant, but I think of Participatory Medicine as the true embodiment of patient-centered medicine. In turn, patient-centered medicine is the only kind of medicine there can and should be — with the patient at the center of a collaborative “ecosystem” of professionals, peers and loved ones, each of whom bring essential wisdom and experience to the healing process, and each of whom must have equal access to all information — clinical and experiential — and a respected voice and role in the process.

  2. Alan Greene says:

    Heathcare is not something done ‘to’ us or ‘for’ us. Health is something we foster ‘with’ our family, our friends, our community, and with other people dedicated to fostering health. This includes doctors, yes, but could also include a wide variety of others such as nurses, NPs, PAs, midwives, pharmacists, nutritionists, therapists, etc.

    The ‘participation’ in Participatory Medicine isn’t just a patient particpating with a doctor, but a patient participating in improving his or her own health, in constructive collaboration with a network of others with the same goal.

  3. Susannah Fox says:

    Gilles, I quite like your definition, but if we are going to be picky, I’d ask why only the patient should be empowered by information, software, and community. Why not empower the caregivers, both lay and professional, with those same tools?

    I’d also point out that while many people seem comfortable with opening access to information (home care, clinical, scientific) there seems to be less support for shared decision-making. I’ve read about doctors who don’t think it is appropriate to always involve patients in decisions and I’ve heard from patients who don’t want to be involved in every choice. I’m not saying either one is “right” or “wrong” but that line could be a sticking point in the definition. Maybe it just means we really have to get it right!

  4. Good thoughts – all unexpected, but stimulating. We may end up with a definition and then with comments about what was defined.

    Right now I’m pretty aligned with Gilles’s latest definition.

    I love the point that we have a chance to define something before it gets into wide use. To aid that, and avoid getting trampled by a need we didn’t anticipate, I think we ought to think explicitly about how it’ll appear in the eyes of several constituencies. How will it read to:

    • Doctors who are tentatively interested but not sure what it’s about. Will it be clear exactly what we’re talking about? Our definition better not be feel-good fuzzy.
    • Patients who are completely new to the subject. These are the people I meet every week or two, with a new diagnosis, who know nothing of the thinking we do here, but have a need right now. Our words need to be accessible to them.
    • Administrators (e.g. hospital executives, including CIOs) who influence policies and priorities for next-generation technology, and even culture change
    • The money people – insurance companies and those who pay for the insurance. We should think about if we want adoption
    • Thinktankers, commentators and policy geeks, whose opinions can likewise bend the adoption curve – and spread the word.

    Having said all that, I find Gilles’s definition quite satisfying, except I’m scratching my head about what’s meant by “a well-defined decision process.”

    Judy, I get your point about the fact that we even need to *say* it’s legitimate for patients to be involved. Otoh, it’s a shift in paradigm, and per my thoughts above, the shift is worth pointing out when talking to those who don’t yet get it.

    I have a similar thought about Alan’s comment. Certainly patients must learn to participate in improving their own health; I’m just “reading” (for the second time) the book-on-CD Anticancer, which makes very clear both the possibility of being active in creating your own health and the need to do so. (The author’s cancer, like mine, was found incidentally, and we have many other similarities.) We have education to do, not just with providers but with “us out here,” the patients.

    (p.s. Gilles, an apostrophe is needed in “patients caregiver”.)

  5. John Grohol says:

    I think of participatory medicine as participatory health care (which is unfortunately a term I prefer, because medicine tends to dis-include mental health concerns, while “health” includes “mental health”).

    I see this as a simple, cooperative partnership between everyone involved in a person’s case — professional, caretaker and client or patient. Yes, it can be augmented or enhanced through technology (software), but can’t virtually everything nowadays? Fire was augmented by hearth “technologies,” but does that really help define how families evolved around the kitchen of a home?

    I also think that people expend far too much energy on attempting to define terms that are fairly self-descriptive (or purposely nebulous). “Web 2.0” and “health 2.0” defy definition because they never had much definition in the first place (and in lacking meaning, mean virtually everything to everybody). I think the term “participatory medicine” defines itself — medicine that encourages and expects participation by all involved parties.

  6. John, I completely hear you re definitions. The only reason I care is that they serve us well in creating change.

    At a time like this (starting a new conversation in the world) I think a good definition is like a fulcrum: it’s a fixed point of reference against which various levers can be pushed. The artful definition is positioned just right, so that leverage from many different angles is enabled.

    (Boy, that prose feels awfully purple – forgive me if I overreached.)

  7. Charlie Smith says:


    Thanks for initiating this stimulating conversation on such an important topic. I agree with the preference for “participatory health care” rather than “participatory medicine”. Also, I believe that this simply implies that every person in the “health care team”, including patients, providers and other interested parties simply understand their role and participate fully in it.

    For the patient, this implies getting the necessary information needed to take control of their own health issues. For the providers, it means collaborating, communicating, and sometimes negotiating for the best outcome for the patient in any given situation.

    The internet provides the platform to provide the information and other tools to allow this to happen on a more practical scale than was possible in pre-internet years.

  8. Susannah Fox says:

    Gilles (or anyone else), what about John Grohol & Charlie Smith’s assertion that “participatory health care” is a better term? Is the key word “participatory”? Is that enough to mark the difference between the old ways and the new? I just did a quick search and found examples of participatory democracy, design, learning, culture, librarianship, journalism, research, politics, budgeting, urbanism…

  9. Expanded 1 pm EDT 10/19

    This topic is hot on the griddle for me because I’m working on defining a January session at the Massachusetts Tech Leadership Council about the next generation of healthcare IT. I started saying the session would be about patient-centered medicine, but that changed to participatory medicine, and now it’s shifting to participatory healthcare.

    I think Charlie and JohnG hit the nail on the head. So did Alan Greene, above:

    The ‘participation’ in Participatory Medicine isn’t just a patient particpating with a doctor, but a patient participating in improving his or her own health, in constructive collaboration with a network of others with the same goal.

    My preliminary conclusion: There’s more to health than medicine, and there’s more to healthcare than doctors.

    I’m reading the new book Anticancer and it makes abundantly clear that for those of us in the game of “I beat cancer once” it’s wise to be responsible for “cultivating our terrain,” the “soil” in which microtumors live, and may or may not grow.

    My oncologist now says that in the universe of people like me, who responded to HDIL-2 and beat Stage IV kidney cancer, there’s “only” a 50% chance of relapse – a vast improvement over the initial prognosis, where one web site said “The outlook is bleak.” So today I face the same question I faced than: “Okay, what can I do to improve my chances?”

    That’s participating in caring for my health, separate from participating in my care events (which I also do).

    So how about this – as a statement on this issue, not a definition:

    Participatory medicine is one aspect, one dimension or a subset, of participatory healthcare.

    I’m getting an image of a teaching diagram with a doctor’s-office-style person at the center, arms and legs spread, showing various aspects of the whole world of healthcare depicted with arrows to and from the person: What We Eat, The Environment We Live In, Activities We Choose, Information We Gather (and Share), Family, Social Connections, Healthcare Providers, etc. The arrows between the person and the provider are labeled Participatory Medicine.

    Make sense? Anyone care to refine it? Crowdsource away!

  10. I just re-read this whole thread, and Gilles’s draft at top looks stronger than ever. Especially when combined with the Wikipedia draft (I believe he was principal author of it), it looks concrete enough to satisfy each of the constituencies I mentioned (doctors, patients, money people, executives, commentators / policy geeks).

  11. My wife, a seasoned veterinarian, has a fascinating perspective on empowerment and participation and the decision process.

    In her practice, her patients themselves have no ability to make informed choices about the patient’s [their own] diet, treatments, etc. – but her clients do. So for her it’s not patient empowerment, it’s client empowerment.

    I discussed this thread with her, and Susannah’s note caught her eye – some pts have no interest in participating or even knowing a thing, and certainly have no interest in doing anything differently, e.g. changing the patient’s diet, even if it’s the direct cause of a condition.

    This speaks to the question of a well-defined decision-making process. What if two people are fully empowered and informed and have the same doctor and want very different processes of reaching a decision?

    In my cancer I chose to seek the best doctors and pull out all the stops to maximize my odds. Less than a year later a friend of my wife, with only one kidney which became cancerous, chose not to do that – he chose a doctor closer to home, didn’t get much treatment, and died in less than a year. Didn’t complain or play victim, just chose that path.

    I guess if we really believe in empowerment, we can’t shove anything down patients’/clients’ throats. We can do our best to make information available, but beyond that it’s up to them.

  12. John’s latest post gives me the perfect segway (OK, John, that’s an old joke!). Step 2 of “A doctor’s prescription for healing American health care” Dr. Pector writes:”When it comes to equality, doctors get the short end of the stick in our health-care system.” I believe she speaks for most doctors. And that is exactly why I believe we should keep on talking about Participatory Medicine and not about Participatory Healthcare. There are so many broken aspects of the healthcare system that I am afraid that our concept will just get lost in the surrounding mess. While Participatory Medicine is, as Susannah wrote so eloquently, “a “plausible promise”: something big enough to inspire interest yet achievable enough to inspire confidence”.

    I really love what John wrote. So I changed the definition as follows:

    Participatory Medicine is a cooperative model of medical care, that encourages and expects active participation by all involved parties as an integral part of the full continuum of care.

    Does it work better?

  13. Judy Feder says:

    Gilles, I think you’ve nailed it! Great discussion.

  14. Judy Feder says:

    One more comment on why the vocabulary is so important: because my day job is in public relations, I get a feed of reporter inquiries. Here is one that jumped out at me this morning: “Be a Bad Patient — –This piece is about patients taking ownership of their health. In certain instances, they should be a bad patient (within reason, of course), from getting second, third and fourth opinions to questioning medication, etc.” The reporter says she is writing about the positive aspects of taking ownership, but isn’t it telling that she describes that as being a “bad patient?” Gotta change that way of thinking!

  15. Susannah Fox says:

    Hi Judy,

    Was this article in the Washington Post the result of that inquiry, by chance?

    Being Difficult: For Some Patients, It’s a Coping Mechanism

  16. Susan Willard says:

    Gilles, et al,

    My apologies in commenting so late in your discussion. I agree with the wording as it evolved.

    One addtional point, I think it might be worthwhile to consider a separate definition for “Patient-centered Care.” “Participatory Medicine,” or “Participatory Health Care” implies an overall process/set of responsibilities, as well as the actual exchange between all stakeholders, patients included. This system implies the importance of the patient, but it doesn’t address the design of the system, and how you achieve the desired admiral outcomes.

    Putting the patient/consumer front and center in the actual model design is critical, and calling out a definition of “Patient-centered Care” helps professionals think in that context.

    It’s been a year or two, since I last investigated the actual practice of Patient-centered Care, but at the time, the UK was the sole country-provider testing this model in select locations. The UK providers were actually building participatory medical services around the patient, and measuring its cost-effectiveness, against more traditional service delivery models.

    What do folks think? Tight on time at the moment, but am willing to straw-man a definition shortly.

    PS e-patient Dave and I worked together for years in the high-technology sector. We learned as the industries evolved over the years that customer-centric thinking, and customer-centric product/service design and delivery was instrumental to the availability of the right technology products and service to the marketplace. Those companies that embraced the notion thrived and were generally more profitable, those companies that did not often went out of business because they didn’t understand what customers wanted or needed.

  17. Susan Willard says:

    Also, I recently spent some quality time on the Patient Centered Primary Care Collaborative Web site. A wonderful initiative, and a great start. Loved the beginnings of measuring the Patient Experience. Absolutely critical to the institution of Best Practices.

    Yet, navigating the PCPCC, still left me with questions regarding the definition of “Patient-centered Care,” and its distinction being critical to the development of a cost-effective participatory medical model.

    In the PCPCC, the patient is included as a partner, and has a role in this participatory medicine model.

    Yet, in the design of their Primary Care delivery model, not sure that the various processes been constructed from a patient-centric vantage point (i.e.,”seen through the eyes of the patient”)? Do they deliver measureable patient value? Not sure.

    Why is this distinction important? Well outstanding, profitable service models are always designed to deliver customer value, are customer-centric, and are managed to be so.

    Participatory Medicine lays fertile ground for a Patient-centered Care service approach but it doesn’t guarantee that the services are patient-centric, and deliver value to the patient.

    The value equation, viewed from the perspective of the patient, quite simply is:

    Value = Results produced for Patient + Process Quality (way its delivered), against the price and access costs to the patient.

    True Patient-centered Care puts the patient in forefront, understands what they want and need, delivers value at a price point that patients are willing to pay for.

  18. […] line in my speech was a reading of the crowdsourced definition of participatory medicine.  Sorenson suggested (as have John Grohol & Charlie Smith, among others) that we change the […]

  19. […] Participatory medicine is a cooperative model of medical care that encourages and expects active participation by all involved parties as an integral part of the full continuum of care. […]

  20. A modest and perhaps not unique idea, but I like “participatory health” to capture these ideas.

  21. […] to believe we should provide the much simpler definition above. As Alan Greene, MD commented in the crowdsourced definition of PM: “The ‘participation’ in Participatory Medicine isn’t just a patient participating with a […]

  22. Here’s a site similar to but aimed at multi-year ouitsourcing contracts.

Leave a Reply