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.

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.

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

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

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?

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.

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!

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.

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.)

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.

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”.)

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!