Health 2.0 Definition, Version 2

Remember that I started the defining in anticipation of talk I am giving? That talk is happening next week, in collaboration with the California Healthcare Foundation, who are working to foster next generation ideas for health care.

Based on the comments I’ve read to date, here’s what I put together:

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.

Here’s a summary of the improvements suggested:

Dave: add “When patients meet Web 2.0”
Andre: add “Social Media”
Jen: “Content and Community” (commerce coming)
Deborah: “Strike transition, promote participation”
Lodewijk: “Not a transition; Health 2.0 defines the combination of health data and health information with (patient) experience through the use of ICT, enabling the citizen to become an active and responsible partner in his own health and care pathway”
Gilles: ” Add ‘and equal’, add ‘informed'”
Dave: “Lodewijk + is the combination of new Web tools, health information, and patient awareness, enabling the citizen”
Susannah (offline) : “Participatory medicine”
Matthew: “Good luck”

Here’s the original:

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.

Better? Easy to discuss in an elevator, or on your way to a walking meeting?

31 Replies to “Health 2.0 Definition, Version 2”

  1. I'd only shorten it by removing "The combination of."

    There's another semantic refinement coming over the horizon which at first annoyed me as too cloying: reframing the "patient" as the consumer, which is inherently a more powerful (empowered) role. Something to think about.

    I first thought about it when Lodewijk's definition "citizen" instead of patient. But it really clicked for me when I read Susannah Fox's stupendous "e-patient interview today with Keith Schorsch, former Amazon executive whose case stumped 11 specialists and almost led him to brain surgery.

    That, and the new Consumer Reports article that you cited on the correlation between costs and local medical myths, are a mind-blowing combination of information to encourage people to think for themselves.

    All that brings me to a more-shortened version:

    "Health 2.0 is participatory medicine. Web content, tools, and community let consumers be active partners in their own health care and in improving the health system itself."

    Even shorter would be to replace "active partners" with "engaged," but I think that almost overlooks the participatory aspect.

  2. Love it. Going once….

    If I don't hear any other suggestions by next Tuesday, I will post as the outcome of this crowdsourcing experiment. I'd say it went well, and how nice for it to be christened by a patient. Thanks for being a great teacher, Dave.

  3. It could still use a wordsmoothing … I just stumbled over my own "improving." But I'm done. Glad you like it, troublemaker. 🙂

    Boy, what a concept – consumers being active partners in their own care episodes: imagine if we were active partners (on the fly) in what comes off the shelves at a grocery story.

    Sure, we all vote (with our bucks) on what suppliers ultimately stock, but this is different. That effect will happen over time, but we're talking about altering the nature of each transaction, on the hoof.

  4. In terms of buzzworthiness, hipness, and tastiness, there may be an opportunity for alliteration that I don't want to look.

    We have content, community, and consumers, but we also have web tools, and I don't see a c-word synonym for that.

    "Consumers create content, community, and …" is along the lines of what I have in mind, but it's not there yet. Maybe "collaborate" gets in there too.

    C? Si?

  5. Ted, Dave –

    Love the versions and yes, this is a great experiment with good results.

    Dave – Health 2.0 = content + community, as it evolves we'll see commerce solutions, but right now it's all missing the 4th C – COHERENCE.

    When we have that, consumers/patients will be able to 'dip' in and out of the new medical system, online and offline, at will.

    That brings me to 2 other suggestions –

    1. I would suggest not limiting it to web content…sometimes content is sourced offline, pushed online, and vice versa. Doesn't matter really where it comes from (democratization of data is a big influencer in consumer-centric health), but just that it is content, and available "at will."

    Although the consumer-centric, patient (e-patient!) directed movement is influenced by web tools, it isn't limited to resources found online. Quite often the tools found online must be used by the patient to 'reintegrate' that data back into the brick and mortar system.

    Unfortunately, this process is currently far from seamless or commonly accepted practice (picture the patient holding a pile of Google printouts going into the doctors office and trying to have an 'informed' 'participatory' conversation and the difficulty jumps out and slaps you in the face…)

    THAT said, the end goal must be integration of online and offline resources, with new structures, models, and tools being created and employed in both the virtual and 'real' world.

    2. That brings me to the second point…"at will." I think we get a lot of grief as consumer-centric advocates for not underlining that the ideal goal is patients (but not just patients, consumers including caregivers, etc) who are WILLING and ABLE can choose to be active partners in care – the tools are available (again, both online and offline) to do so.

    So I'd suggest (clumsy, but you get the idea):

    Health 2.0 is the tech-enabled movement towards collaborative, participatory healthcare (not just medical care-wellness, etc). Content, tools, and community let willing, able consumers be active partners in their own health care – improving both individual interactions and systemic care.

    This is great stuff Ted…

  6. I love the definition. But I would warn against the use of consumers instead of patients. Just open today's New York Times and you will see an ad for the Hackensack Medical Center that is all about the consumer. Consumerism is fine with many industries. I am not convinced that it is a concept we should push when we are talking about issues of life and death. So, knowing that the term patients is imperfect I still haven't found any other term to replace it. During 7 years, the e-patients scholars group have discussed this issue and we always come to the same conclusion.

    Participatory medicine is NOT patient-centered medicine. That second term is still completely directed by health professionals and/or by various elements of the healthcare system. Participatory medicine is a fully collaborative driven approach to medicine. It embraces fully the concept of expert patients. Ted's definition is the first one I see that fully accepts the full extent of the cooperation. Mazel Tov!

  7. Gilles and Jen,

    Both well spoken and thank you – I am game for shifting the definition to be about patients, Dave (when you have a moment), can you help with Jen's additions?

    And…I love that we will not call this Ted's definition when it is done, because my version ended when the wisdom of crowds began. Thanks!!!

    Ted

  8. I'm personally not inclined to get wrapped around the axle about "patients" vs "consumers." For one thing, this definition is sure to evolve or die within a few months at most – this whole scene is morphing chaotically, so at best we're taking a snapshot.

    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.

  9. Dave/all,

    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….

  10. That definition and the process used to arrive to it are definitely a metaphor for participatory healthcare.

    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.

  11. I'm curious as to why when everyone talks about participatory health care, the physicians and other care providers aren't seen as empowered participants.

    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.

  12. Vijay, that's a great addition! Seriously. I've read plenty about how disempowered doctors are, for longer than I've been reading about how disempowered patients are.

    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?

  13. Dave,

    Interesting question– nobody today is incented to empower primary care docs– the medical establishment has decided to reward the procedure-based specialties and the insurance companies today are focused on network discounts.

    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.

  14. I agree with Vijay. although the the system will be patient centered and patient focused, i think Health 2.0 provides opportunity to empower the physicians as well – which needs to be addressed in the definition

    Aditya Naik

  15. I'd like to play this out a bit more. I'm not denying the feelings that physicans have but at the same time there is clearly an information abyss between what the physician has access to and what the patient does, in the patient's own care. See today's first post for a graphical example. Thanks for adding this concept to the discussion,

    Ted

  16. Absolutely.

    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.

  17. It's quite interesting to see this discussion about empowerment. You will notice that when we discuss empowering patients (the final customers of the healthcare system) we NEVER associate it with a financial benefit for the patient. As soon as someone mention empowering physicians the discussion instantly turns into one about financial benefits. 2 completely different issues , unrelated.

    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:-)

  18. I agree with you Gilles, and am impressed at how the conversation has come around with the patient perspective grounding things again. I actually believe that when patients are empowered, doctors become empowered, too, because I haven't yet met a doctor that wanted to take bad care of patients. I think satisfied patients results in satisfied doctors, not necessarily the other way around,

    Ted

  19. Interesting discussion. So it seems we're all agreed that empowering consumers is the primary goal, my assertion is simply that we'll have to improve the degrees of freedom by which a doc can profitably deliver the desired services for that empowerment to become reality.

    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.

  20. I know that what I'll add now could be understood as knitpicking but in reality it is a fundamental difference.

    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.

  21. I admit freely that I am biased toward the point of view you just expressed, Gilles. I would like to help patients be more empowered, even if it's not my job (but I also subscribe tot the 100% accountability model).

    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.

  22. As I've said, I'm a latecomer to this whole conversation, compared to people who've been looking at it for years. All I know is that from where I sit, there are three levels of empowerment that make any difference in my life:

    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. 🙂

  23. In the latest post on the e-patients blog Jon Lebkovsky writes about DocSearls' article on healthcare in the Linux Journal. I was particularly impressed by the last sentence of the post:

    "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."

  24. Found you blog from e-patient Dave's – excellent definition and one that I will be sharing (and sharing your blog as well).

  25. Just a simple question on this statement: "This is where cash payment from consumers would be what empowers docs–" if you are speaking of cash from patients with medicare, on SSD, can't include many of us, we have no cash.

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