“The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.”

Let’s put this together with your latest definition of health 2.0:

“Health 2.0 is participatory health care. The combination of content and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system.”

These 2 clearly related concepts would have seemed so radical when we all started working with Tom Ferguson on the white paper that generated the http://e-patients.net blog! It is amazing how fast the social mindset is changing. As usual, there is nothing like a broken system to generate deep innovation and social evolution.

How about adding authonomous, that great modifier, to the health 2.0 definition:

“”Health 2.0 is participatory health care. The combination of content and community enables the autonomous patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system.”

1. Being aware that I *can* say what I want

2. Having providers (”the system”) hear it and care that I said something and be interested in responding

3. *Getting* what I said I want.

Now I see Gilles pointing out that the patient community equips (arms?) me with the information to know what to ask for, and in some cases to defeat the system (and any people in it) who are giving someone a bum deal.

I have to observe, though, that as I talk to people in a pre-crisis mode, #1 is the first big step.

That doesn’t negate what Gilles said.

Meanwhile, I just love the idea of having choice, and I love the idea of a zillion doctors offering a variety of choices. Just like the virtue of having a variety of good French restaurants.

In my very first post about this definition (and lots of other places) I talked about a generational difference that may be out there. My generation was among the first that trained in an era where patients could know more than their physicians and we (or I) realized quickly that if we tried to be all knowing, we would fail.

Vijay, as an MD or someone involved in providing professional services to patients, writes “empowering patients is the primary goal”. I believe that empowering patients is NOT the job of clinicians. There is a whole world of difference between “Empowering the patient” or “Patient Empowerment” and the “Empowered Patient”.

Empowered patients become empowered on their own, using tools that are very rarely designed by clinicians but almost universally by either patients, medical librarians or software designers. I think that one of the clinician’ roles is to adapt to these patients and treat them very differently than you would treat a patient with little understanding about their condition. From the numerous feedback I have read on ACOR since 1995, it is clear that specialists usually appreciate dealing with informed patients. It makes the clinical encounters much more focused and probably result in a real improvement in satisfaction for both the patients and clinicians. At a minimum it is clear that informed and empowered patients have a much more positive with their doctors, as long as the doctors provide feedback in line with the health literacy level of the patients. As it should be.

Current situation of today is that the consumer knows they are increasingly accountable for spend, but doesn’t have sufficient transparency to deliver. Meanwhile, the doc knows they are often neglecting coordination of care, but can’t deliver the time to do so on the volume-based commoditized reimbursement model (e.g., the hamster wheel).

Unlocking information only takes us so far…only when this becomes integrated with delivery will we see the system become consumer-centered. Small pockets exist with examples in concierge medicine, use of retail clinics, and Jay Parkinson’s practice. The profit motive in each of these cases has combined better provider financials with better consumer experience…I think these are the sentinels of the system to come.

Ted

I would add that if we have to build a system where we empower physicians by giving them cash so that they can provide the super-duper information that can benefit us, the patients, then we have magically recreated the system that used to exist decades ago. That is certainly not why we have spend the last 15 years building resources to help people become informed and empowered as patients/caregivers.

But that is just my opinion:-)

personally i think that gap has to be filled in by empowering patients. but at the same time we should not discount the potential of leveraging Health 2.0 for the benefit of the physician. there might be web2.0 e-commerce applications that can be built for physicians. eg something like mint.com for physicians to manage their small clinics.

Ted

Aditya Naik

This is where cash payment from consumers would be what empowers docs– you’d have the ability to create multiple business models that more profitably targeted different types of customers with different needs.

As to what I am creating today, I’m nearing the launch of my company (HealthShoppr.com) where we’re creating a cash-pay marketplace, starting in wellness, and focusing on helping people find terrific, more customized service options. I think the key is helping healthy people stay that way, by making the health system easy to engage with on an everyday basis.

I left the practice of medicine because it obsessed on disease over health. My startup is built to create an entity focused on the 80% who don’t find great value in the way the health system works today. I believe that empowering them with choice and convenience will create a much healthier, happier tomorrow.

And in creating a new market, its less about power and more about creating a reason for individuals to select the new market. I don’t think the system changes overnight, but I do think it makes a lot of sense to allow people to opt out of the current one into one that works better for them.

So that begs the question, where IS the power? An obvious answer is insurance companies, but that short answer doesn’t illuminate other choices.

If you had all the power you want, what would you create?

To truly achieve Health 2.0, I believe that part of the definition needs to include the empowerment of providers to create new business/practice models that meet the differentiated needs of the empowered consumer. We’re seeing inklings of this in concierge care and retail clinics, but the majority of health providers are stuck in a commodity realm at the moment– through the fragmentation of cottage industry in allied health/ CAM and through group insurance contracting (with top-down insurance requirements for billing) in medicine (esp. primary care).

Empowered consumers don’t have choice until provider practice models can sustainably meet them as willing and engaged partners.

If clinicians, hospitals and health systems were using similar methodologies to advance their own implementations of aspects of the patient centered medical paradigm much could be achieved in short periods of time and at significantly reduced costs, compared to the system-centric methodology.

Right on time. I read the final definition in my presentation to the Board of the California Healthcare Foundation. After reading it, I made two comments:

#1. If I, as a physician, sat down to write the definition, I would not have gotten to one that is as patient focused as this.

#2. It is fitting and very awesome, that a definition about health, which is about the people we serve, not the people doing the service, is completed and christened by a patient.

The system works….

Said differently, the fine edges provided by subtleties will be worn away soon anyway.

But I haven’t chewed on the issues nearly as long as Gilles and the rest of the e-Patient Scholars have, and I know and respect their thought process (and Gilles’s astounding mind in particular - you should try playing cards with him. VERY quick and precise.)

What works for me is not to create a definition that pleases scientists, but a definition that sheds light on changes for those who are new to the distinction, and who have a reason to be interested, whether it’s self-preservation or support of another or simply planning ahead.

I like Jen’s observation that not all contribution or content is online. Re “at will,” I take that for granted in this discussion, since the whole idea of empowerment is that people get to do what they want. But “at will” and “able to” both fit into “can be.”

——

Having chewed on this a lot, I discovered that I’d come almost full circle to what Ted proposed at the top, with just a subtle shift in point of view, to first person instead of third:

“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.”

To me that reflects what’s new about all this.

It’s a bit humbling to be asked to be “secretary” for a group like this. I hope this edition reflects everyone’s contributions.