e-patients: Participate in defining “Health 2.0”

Over at one of my favorite blogs, e-patients.net, e-Patient Dave is starting a dicussion about what Health 2.0 “is;”: e-patients: Participate in defining “Health 2.0”

I started things off with a definition based on one created by The Economist, which I’ll repeat here:

Health 2.0 is the transition to personal, participatory health care. Everyone is invited to see what is happening in their own care and in the health care system in general, to add their ideas, and to make it better every day.

Feel free to suggest your improvements here, or there. I enjoy the idea that patients like Dave and readers of e-Patients will create improvements that can be incorporated.

If someone asked you, “What is Health 2.0?” Would you feel comfortable answering with the definition above? If not, how would you change it? Be sure if you would to tell a little bit about “why?” The story of how we get here is as important as the where we got to.

8 Replies to “e-patients: Participate in defining “Health 2.0””

  1. First, I *love* (with passion) the diagram at Scott Shreeve's blogyou linked to in a previous post. Good work – that sums up a whole lot of things I've been trying to say in words.

    (Apologies to anyone reading who doesn't know some of the following jargon. Ask.)

    Of course, that diagram is about Web 2.0 in general. The aspect that really appeals to me is network effects combined with read-write access. It's embodied in that big yellow arrow: all of a sudden all the health experiences of all those long-tail individuals gets pipelined into the mass of data that's available to all.

    Think about that: before Web 2.0, the establishment was the only way for all that information to come together. Now it's not. That's the earthquake.

    Even better, what that graphic can't represent is that all those individuals in the long tail probably NEVER would have crossed paths.

    An adaptation of this graphic, or something like it, can be an epiphany to help doctors see how it could even be possible for patients roaming the web to contribute anything. I'm going to print the thing and carry it with me and try to weave a simple story around it as I talk to people.

    Then, that becomes sort of background evidence for how Health 2.0 is enabled. We end up with something like this (poorly worded):

    "Health 2.0 is what happens when patients meet Web 2.0. They're enabled to gather and share important information, contributing to their doctors and participating significantly in their own care. Health 2.0-savvy providers welcome this breakthrough with open arms. And as with everything 2.0, transparency is fundamental: winners ask consumers what they want, and only losers stonewall."

    The above is an evolution – too wordy. But this is starting to get good.

  2. I would add in some more language pertaining to the social media aspects of Health 2.0 – the community building and emerging social web tools are vital in providing the personal empowerment angle to Health 2.0 (in my opinion).

  3. Bring it on, both of you…Scott was my inspiration, which was to create something that was a sentence or less….I used "participation" as the word to encapsulate social media and community – a two way street.

    In my glass half-full state of being, maybe a definition should point to the winners (which is really everyone, I have yet to meet a health professional that doesn't want to help people be healthy).

    Thanks and keep iterating,

    Ted

  4. Hi Andre – good to meet you! You're welcome to offer suggested wording! I'm just one empowered patient with a big mouth. 🙂

    This morning I realized in the shower (my best think tank) that I was a bit off in my use of "network effects." That's usually applied to things like "one fax machine in the world is useless, two have a use, millions are very useful." Without realizing it, I was extending that beyond machines, to include individuals' medical experiences: one person knowing something is almost useless; millions knowing it enables others to say "Hey wait, I had that happen too!"

    That is exactly what happened when e-patients on http://www.PeoplesPharmacy.com talked and realized that a lot of Wellbutrin users had serious problems when their insurance companies switched them to a generic. The story is detailed at http://www.e-patients.net/archives/2008/04/epatie…. It would not and could not have happened without the network effect acting on information itself.

    I should also point out that "e-patient" is not a club where you get a membership card and a secret decoder ring. 🙂 It's a fairly new designation that describes certain traits and behaviors: empowered, engaged, equipped, enabled.

  5. Ted: I'm definitely happy about the whole process of defining the new landscape of health we're in now – I'm an optimist myself 🙂

    Dave: Great to meet you too, sir! I am ALL about the knowledge leading to empowerment movement! We're starting to see a trend where we aren't necessarily trying to become doctors but we want others to know about what we have gone through so that they might benefit. I actually think that Health 2.0 will have a broad definition and then branch out into others (Health Communication 2.0, Health Education 2.0, etc.)

    I'm personally on a mission to help re-shape the health communications industry so that we can make use of all the tools out there and make education/awareness campaigns more effective. There are so many elements of this new social web/design landscape that we need to take advantage of!

  6. Ted –

    A group of us here in Holland are wrestling with the same question.

    At it's simplest, Health 2.0 = content (what many have mentioned, Scott et. al.) and community (Andre's point).

    The end goal, of course, is better, safer, consumer-centric care.

    This can only be realized by combining currently disparate groups of initiatives, which can be loosely clustered according to 2 motivating factors: efficiency (quality, safety, transparency), and empathy (Jacqueline Fackeldey's theory of "human-to-human" hotealthcare @ Fackeldey Finds, Dr. Reece's "Human 2.0" @ Med Innovation Blog).

    If we use web-evolutionary terms to define the current position, then we can predict where Health 2.0, consumer-centric care – enabled by HIT but also 'brick and mortar' integration of wellness tech- will go…

    *Health 1.0 (1C) = content

    *Health 2.0 (2Cs) = content + community

    *Health 3.0 (3Cs) = content + community + commerce (transactions that create value for both company and consumer)

    *Health 4.0 (4Cs) = content + community + commerce + what we're currently missing – coherence

    Then we arrive, eventually (hopefully) at fully realized consumer centric care, neXthealth. At this phase, consumers (patients, providers, payors) can dip in and out of the system at will (online, offline, virtual and brick and mortar services).

    In an ideal world, we'll all come the realization, sooner or later, that consumers in the healthcare system are not just patients, not only providers, but ANYONE who generates, purchases, provides, recommends, or reviews healthcare and wellness goods, sites, and services.

    We're starting to see firms that realize Health 3.0 goals now – Organized Wisdom, Carol.com, SugarStats.com, American Well….but what they're missing is the 4th C – coherence.

    Services and sites will begin to offer ways for consumers, probably patients and providers first, to connect current care delivery platforms (hospitals, retail clinics) and web-based services (physician chat, PHAs, online scheduling, etc).

    More here… .http://healthmgmtrx.blogspot.com/2008/04/defining-health-30-and-40.html

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