Participate in defining “Health 2.0”

e-Patients, alert! Time to participate in creating the lexicon.

Ted Eytan MD is open to suggestions on his definition of Health 2.0 – he’ll be giving a talk soon and wouldn’t mind some honing, particularly shortening.

Here’s the current definition:

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.

I’ll be mildly inflammatory here: What, it’s a TRANSITION? Like, once we get there, Health 2.0 is over??

*Is* it the transition? Or is it participatory care? Or is it a platform (web 2.0 / the read-write web) that accelerates / fosters participatory care?

Definitions are important, because if people get the wrong idea in their heads, they start rejecting the idea without seeing below the surface. We have enough problems already with people “in the system” who don’t want participatory medicine. So let’s hammer on this a bit. …

I like:
– Everyone (the opposite of exclusivity)
– Invited (welcome, even encouraged)
– See what’s happening in their own care (“yes, you’re capable – it’s not above your pretty little head”)
– and in the system in general (Woohoo for transparency! As opposed to “It’s none of your business how many of our patients for procedure XYZ are successful,” and as opposed to “We’ll take care of how we deliver health care – you don’t need to know about that.”)
– Add their ideas. (This includes bringing wisdom gathered in other disciplines.)

I’m not sure about:
– “is the transition”
– “personal”: what other kind of health care is there? (Or does this mean personalized?) (Would patient-centered be more on the mark?)

I like “make it better” and “every day” but if the goal is to make it concise, I bet there’s a tighter way to convey this.

OKAY, PEOPLE, PARTICIPATE! Add your ideas and make it better every day! Click the Comments link, AND/or go to his site.

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Comments

12 Responses to “Participate in defining “Health 2.0””

  1. JRGarrett says:

    The core issue is, who is in control. I have Hepatitis C, and I control my treatment, advised by my docs, the web, friends, fellow Hep C patients, anyone I can find. I’m not “included” in the process, I control the process. My docs are the best in the world, but I know more about me and my own condition than they ever can, and by now as much about the alternatives as they do. This is the way it should be – together we will clear the virus. But together – the patient in control.

  2. > “I’m not ‘included’ in the process, I control the process

    I take the point, for sure. But I’m having a hard time digging into “I *control* the process. Like, I actively found the best oncologists in my time zone, and I have an active partnership with them; but am I controlling and directing what we do next? Hardly.

    Otoh, if they suggested something that I firmly disagreed with, there’s no question I wouldn’t do it. Do you mean “control” in that sense?

    Re my particular cancer, I sure don’t know more about my biological markers than they do, and I surely don’t know how to read scans the way that can.

    This is good. Let’s talk more. What do you think?

    Anyone else out there? Docs? E-Patients? Mom? :)

  3. DeborahBell says:

    I put a comment on Ted Eytan’s site:

    I saw this referenced on e-patients.net and thought I’d respond… I am a little concerned about the concept of “transition” – how do we define when we have transitioned? Other than that, at last, participation… I’ve been an ACOR listmember and listowner for 12 and 10 years respectively. Had I known then what I know now…

    Doctors have to learn to relate to the concept of participation. Too many are stuck in the past and are threatened by patient involvement. Perhaps that’s too harsh a term – maybe “concerned about” patient involvement. It takes more time. The whole healthcare model we have in the USA today is based on expedience of healthcare, not quality. I’m hoping this changes soon.

    Interesting to note that GenX doctors are coming in with a different mindset! I hope that’s actually true all over.

  4. Nice to see you here, Deborah!

    > Had I known then what I know now…

    I’m glad you said that. What IF you’d known it then? What might have gone differently? Perhaps this can be a really instructive example for everyone.

    I sure know MY case went differently because my primary steered me to ACOR immediately upon diagnosis. As you can imagine, I have the deepest gratitude to you and everyone like you. Mine is a life that you directly influenced.

  5. JRGarrett says:

    Expanding on my comment re controlling my medical treatment for Hep C — my auto mechanic knows many things I don’t know, which is why I pay him to do what I want him to do when he fixes my car. Same with my docs. They can do lots and know lots that I don’t know, but I do understand my body and my options, and I make all the final calls.

  6. Cross-posted from another post on Ted’s blog:

    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.

  7. I like very much what Dave is saying with one exception. e-Patients have become empowered and enabled BEFORE the terms Web 2.0 and Health 2.0 where invented.

    The radical shift started happening in 1995, in front of our eyes, when large numbers of people suddenly gained access to the internet. It was this simple fact that was truly revolutionary. All of a sudden, the cost of connecting with other patients and of gaining medical knowledge/understanding about a specific condition shifted from very expensive (in terms of money and/or time) to almost nothing.

    What is so exciting with Health 2.0 is, in fact, its evolutionary nature. It just proves that the idea of enabled, educated and equipped patients and caregivers is now becoming accepted by a much larger number of people, including health professionals and funders. It is becoming integrated in the current society, in no small part, due to the wonderful work that Susannah Fox and Lee Rainie have done consistently at the Pew internet project.

    My definition then becomes:

    Health 2.0 is the evolution to personal, participatory health care, mediated by internet technologies. Everyone is invited to take charge in their own care, in a partnership of equals with health professionals, and to add their ideas to make the health care system better every day.

  8. Lodewijk Bos says:

    I posted the following on Ted’s Blog:

    I might understand the use of the word “transition”, as participatory healthcare is much more than being able to see what the medics do.
    However, what I miss is the fact that participatory means that the patient will have to assume his own responsibility and that the system will have to accept this paradigm shift.

  9. Hi, Lodewijk – nice to meet you.

    To me it’s not clear that the patient *takes the responsibility* – to me there’s no question that I rely on (I “hire”) my experts to direct how to solve my problems as best we can.

    But I’m not adamant about that – this whole conversation is new to me in the past few months.

    I’m also wondering if we’re talking about two or more different views of the new world, each of which is worth defining. Examples, in no particular sequence:

    – Participatory Medicine is the shift to patients being actively involved in their care – partners with their providers, not expecting the providers to do everything, AND accepted by their doctors as participating partners.

    – Health 2.0 is another aspect of the new world. It’s where Web 2.0 meets patients in need: they get to use the web to gather and share information that would never have been findable or shareable before “the read/write Web.” This is one major enabler of Participatory Medicine.

    – E-Patients are Engaged (in their care – participatory), Empowered (they know they’re free to be active participants), Equipped (they have Internet access), and Enabled (by Health 2.0 technology).

    This is excellent discussion. Let’s keep it up.

  10. Lodewijk Bos says:

    Dave,

    good to meet you and thank you for your reaction. The whole discussion on Health 2.0 is “new” to all of us, the concept of Health 2.0 hasn’t even seen its 2nd birthday.
    I much appreciated your view and I tried to come up with a definition of what I think Health 2.0 is. Please see here: http://blog.icmcc.org/?p=2254.

  11. Hi Dave –

    Crossposted a portion of the response below over at Ted Eytan’s blog…seems like the debate surrounding a universal Health 2.0 definition, like the EHR/PHR debacle, will hang around for awhile while early innovators and interrogators hash out the lexicon.

    Then once we’ve dotted our i’s and crossed our t’s we’ll need to reach out at a more systemic level and get implementors involved (then we’ll see hospital execs attending Health 2.0 conferences) – one patient’s voice can be powerful but the wisdom of crowds multiplies the effect and amplifies the volume.

    So the vital question becomes not JUST how to define Health 2.0, but how to get innovators, interrogators, and implementors to all have a seat at the table and connect concepts, current service lines, and create future partnerships that offer maximum value on both the personal and population levels.

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

    After participating in the first Health 2.0 Unconference here in Holland in April, we’ve come up with the following tentative stab at defining not only the 2.0 portion, but the evolution towards complete consumer-centric care, which Maarten and I inelegantly define as a consumer being able to ‘dip’ in and out of the healthcare system (virtual AND brick and mortar) “at will.”

    “At will” means consumers who want to be active partners in care have the tools (provided by innovative entrepreneurial startups and offerings that connect virtual services and real-world systems) to help them do so…but we must also remember not all are capable/willing to become proactive partners in care.

    Before we get into the definitions of Health 2.0, etc. and how the movement will help us arrive at consumer-centric care, we need to have realistic expectations of end-consumer engagement numbers – let’s add a dose of pragmatism to our idealism.

    Consumer engagement in healthcare will follow a sort of 10-80-10 rule (gross oversimplification but helps illustrate the point)…10 percent will be hyperengaged ‘superpatients’ and ‘superproviders’ who are early adopters. These people, including e-patients, medical bloggers, etc. (i.e. us) are already pushing the system towards the next phase by defining Health 2.0.

    But another 10 percent of consumers are incapable (physically incapacitated)/unwilling (selectively incapacitated) to become primary, proactive, participatory partners in care.

    That leaves the gulf in the middle for Health 2.0 to ignite – 80 percent or so of consumers who are waiting to see what value will be offered.

    To get those middle 80 percent involved though, there are a few more progressive evolutionary stages we’ll have to define and nurture.

    At it’s simplest, Health 2.0 = content (what many have mentioned, Scott et. al.) and community (Amy Tenderich at DiabetesMine, etc).

    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 – something we’re calling “neXthealth” (more info on this definition available).

    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 – a connection platform that bridges their services to other online and offline organizations in an ‘open source’ fashion.

    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

    Also, for those interested, many of us are tweeting about Health 2.0, 3.0, etc. on Twitter.com – for interesting developments, blog posts, and links search and follow:

    jenmccabegorman (Jen McCabe Gorman – Health Management Rx, neXthealth)
    mdbraber (Maarten den Braber – neXthealth)
    martijnhulst (Martijn Hulst – neXthealth)
    shakingtree (Niels Schuddeboom – neXthealth)
    fackeldeyfinds (Jacqueline Fackeldey – Fackeldey Finds, neXthealth)
    Jeroen Kuipers (Building Better Care, neXthealth)
    icmcc (Lodewijk Bos, ICMCC)
    NCurse (Berci Mesko – ScienceRoll)
    Marston (Marston – SugarStats.com)

    And Dave, I’m hoping you’ll be attending Health 2.0 in San Francisco in the fall?

    Best –
    JMG

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