Health 2.0 – An Uncompleted Van Gogh

Imagine today’s presentations at Health 2.0: User-Generated Healthcare, as looking the way a painting by Vincent Van Gogh might look if he had not yet stepped back from the canvas.

In our painting, there is genius at work — each splotch of paint, each dab of color makes a statement, much as each Health 2.0 company presents its vision and its product. But somehow, despite all the individual needles, the haystacks are lost. Where is the vision that helps us see the health care system as a whole in a new light? Is it just too early in the process – with a little more pointillism, the point of it all will become clear — or is the problem that we are waiting for Van Gogh?

Health 2.0 companies, it seems, are addressing specific and limited problems – albeit quite important ones — with gusto. Putting it all together and transforming health care is nobody’s business plan.

Over the past 24 hours, Matthew and Indu put on an intense and fascinating meeting. Since they could not simultaneously “do” and write about the “doing,” they have asked Your Correspondent to do the latter. After nearly 10 hours of content bombardment, I can tell you there are some gung-ho entrepreneurs ready to drag consumerism into health care. Empowerment! Flexibility! Personalization! Wellness! Choice! Value! I and the rest of the under-65 (mostly well under 65), upper-middle-class (and not a few lower upper class) crowd are ready to throw our Power Bars into the air and cheer aerobically.

But wait: will these models work when “consumers” become “sick people,” and these sick people – old, with poor reading skills, not that well-educated, a little bit cowed by the men in the white coat — need not health care but “medical treatment”? It’s a question that nags throughout the day. This is a crowd that wants to both do well and do good, gosh darn it. We are a movement we are told – but, really, with Matthew and Indu mandating 8-minute bio breaks for a crowd of 300, is anyone having a movement? – but we are also a dog-and-pony stage set for new business concepts. Elevator pitches and elevated sentiments happily co-existing.

Susannah Fox of the Pew Internet & American Life Project becomes our guru. It is not just because she speaks about e-patients and e-caregivers. It is not simply because she talks like Khalil Gibran reads: “We are lab rats typing out messages on the bars of our cages.”

No, Susannah is our guru because she is both profound and pithy. She reminds us that Health 2.0 is first and foremost about “people like me,” not about sourcing and attribution of content. She reminds us that there are lots of people who never graduated from high school who desperately need us to reach out to them and that today, for that reason, only one-third of patients are “significantly helped” by the Internet. We are stunned to learn that there are significant numbers of people of color who may have different ways of approaching the Internet than those of us in the room. She challenges us to challenge our assumptions as we design sites and use sites, and challenges us to take up the challenge of Michael Pollan, author of In Defense of Food: An Eater’s Manifesto, who boiled his philosophy down into a seven word aphorism “Eat food, not too much, mostly plants.”

And so Susannah cries out her haiku to the crowd: Go online. Use common sense. Be skeptical.

“People like me.” It is the key phrase. The movement from impersonal search to personalized information is what makes the potential of the presentations we see profoundly exciting. A young concert pianist gets a devastating cancer diagnosis and turns the bitterness of the futile protest, “I’m too young for cancer,” into a Web site www.i2y.org, that helps Gen X and Gen Y cancer patients and their families withstand the shock and take the actions that may make the difference between life and death.

A disabled woman, speaking to us remotely, describes what her site, The Heron Sanctuary on Second Life, offers a woman who cannot stand unaided, walk without crutches or travel without a wheelchair. “Here I can walk though gardens and go swimming. I can dance. All these fabulous things I can’t do in real life, I can do in Second Life…Here, I go dancing every night.” No, the joys of the virtual world do not take away the pains of the real one, but the achievements and skills learned in this virtual world have enabled her and others to get more out of life in the real world. The nurturing of souls has empowered and healed the spirits of those with broken bodies. A humbling presentation.

A 24-year-old woman cast into the ghetto of the “night side of life” by mysterious pain is filmed standing in front of a poster for an exhibition on the art of the Warsaw Ghetto. It reads, “Scream truth at the world.” The site www.reliefinsite.com, helps her map her pain, concretize it, turn the ephemeral stabbings into data and patterns and a reality that she can try to control. It is an extraordinary example of interactivity and empowerment undergirded by sophisticated pattern recognition and data management. Interactivity, piquantly, is an internal dynamic as well as an external one. “I think I learned pretty early that your body can betray you,” she tells us. “You need your body’s consent to have the life you want to have.”

We learn of communities and the strength and learning that come from them. There are “grassroots” efforts, like Amy Tenerich of Diabetes Mine. There are grassroots efforts-turned-corporate. Eric Langshur, who began CarePages because of his son’s illness, formed a company that helped push the product into 700 hospitals and was acquired by Revolution Health.

And there are commercial efforts at communities that are done very carefully, even respectfully. The “expert supported health communities” of crowds of WEGO Health, a new company, and the 40 communities of “people who have been through what you have” of Health Central Network. There’s Trusera, another new entrant, one which specializes in telling stories – a stake in the heart of brochureware! – starting with the tick-bite-that-no-one-could-diagnose story of its founder, Keith Schorsch.

If a liberal is a conservative who’s been mugged, a Health 2.0 entrepreneur is an amazon multi-millionaire who got just plain ticked off by the way he was treated by the health care system. The perfect disruptive innovator.

More wisdom, from Health Central’s Bill Allman:  “All of us work like crazy to create web sites we hope you never have to go to. But if you do, we’re ready for you.”

Can a Web site with an ad for Nasonex really be a community? What if I start posting articles from the medical literature about useless OTC medications? Is my cancer your mailing list opportunity? Movements don’t ask about VC  multiples, but words like “credibility” are thrown around a lot at this meeting.

David Sobel, MD, of the Permanente Medical Group, is another one of our gurus. He should not be confused with David Sobel, MD and JD, a founder of Emmi Solutions, also at the meeting, or with that other David Sobel, wh. David Sobel the Elder (as he is referred to reverently) is a pioneer in empowering patients and empowering doctors to let their patients be empowered.

He tells us to remember to connect these new communities with real doctors in the real world. He tells us not to flood them with too much information. He tells us not to let people become defined by their disease – life is bigger than that.

We are then told how to find the doctor of our dreams through healthcare.com and Xoova, which used to be called DoctorDirect until, I presume, someone told them that cool products need cool names. Xoova shows me how to find an orthopedic surgeon in Santa Monica. I wonder if that online appointment schedule will be quite so blank if I’ve got Medicare. I wonder if the software crashes if I’ve got Medicaid.

Of course, I don’t need any of these directories if I can find Jay Parkinson, who makes house calls and uses an integrated suite of online tools for his patients in the Williamsburg neighborhood of Brooklyn. (Well, OK, not the whole neighborhood – the public housing project where my cousins live is still stuck with cab rides to the clinic.) Or there’s Jordan Shlain, founder of San Francisco On Call Medical Group, who takes his cab rides to the financial district to meet harried traders with health worries. They offer boutique medicine – and yet also offer a set of tools that “mainstream” doctors and patients will surely take for granted a few years after they stop being jealous. For instance, working with vendor Myca, Parkinson has come up with software that highlights data graphically by its importance – yet another stake into the heart of brochureware. (I can hope, can’t I?)

American Well will let me access any doctor who wants to earn a few extra dollars through a technologically sophisticated “on call” system that provides everything from online chat to the patient to an overview of medical records to the doc. Vitals gives me the “customized fit” with the doctor who really fits my personalized needs. Locateadoc.com does much the same. A company called Organized Wisdom lets me chat with any doctor, even a specialist, for $1.99-minute, and I find myself wondering whether they round up to the next minute, like the phone companies, and if doctors who talk fast will get more patients.

Of course, there really isn’t that much information out there on the docs, other than schooling and the like, but let the rating games begin!

But wait – isn’t this just like using Yelp? I can now find out what other random anonymous patients who could be the doctor’s mother think about their past care at this doctor. (Oh, wait. Yelp gives me that.) I also have a chance to pick a doctor who’s physically attractive (my wife wants George Clooney) or whose voice is mellifluous. True, I don’t have a chance to see what the doc’s track record is at treating diabetes or if a physician has a long malpractice rap sheet. (To be fair, HealthGrades is starting to offer some of the latter.) But, hey, interactivity and empowerment give you the right to pick a doc the way American Idol votes for a winner, and who are we to burden you with unpleasant facts when we can find you a physician who emotionally connects with you, your illness and your wallet?

In the crowd, some wonder: there is a shortage of primary care doctors. Who are these doctors with empty spots in their practices? Good primary care docs? Or specialists looking for cash? Is this the way doctors will be presented to patients in the future or is it repackaging alone?

Speaking of repackaging, Tony Miller, the CEO of Carol, speaks. Go to Matthew’s past interview to find out what he would have said if he’d had an hour. He, too, presumes empty doc visit spots and disposable consumer income. Perhaps.

David Sobel the Elder wonders about a system where your personal doctor is so organized that you don’t need to search for a guy who takes email or pay 1.99 to get a few extra questions answered from a stranger about your cancer. But, hey, Sobel works for Kaiser, and just because they haven’t learned how to make a buck by unbundling services doesn’t mean the rest of us should let them spoil the fun. Says Sobel: “You are making heroic efforts in a health care system that is basically struggling because we have so many disincentives to have an empowered, informed patient as a partner in care…Our patients deserve an integrated system. They do not deserve fragmented care.”

Sobel, it seems, Sees the Big Picture. Albeit in more than seven words.

There is more. There is more that is Good and that I Should Tell You, but Dear Reader, 15 hours have passed since my day with Health 2.0 began and I am ready to give in to blogging fatigue.

More wisdom comes from Esther Dyson, calling, like Sobel, for a holistic system that allows connections and interfaces and encourages as large a community as possible. From Scott Shreeve of Lemhi Ventures: “Create new relationships. Be part of the larger chain. Next step: drive outcomes.” And from Jane Sarasohn-Kohn. “Design for what could be: Think, ‘Citizen.’”

A movement thinks of citizens. A business thinks of customers. Which is Health 2.0? Either, yet? Both? On its way to something else.

–Michael L. Millenson (mm@healthqualityadvisors.com)

PS: For attendees, I  reprint below my closing doggerel about the future of medicine, by popular demand (Indu asked).

Random Acts of Doctoring

In my office, in my homeWhile talking on my mobile phoneWhenever my health gives me a fright,In heat of day or dark of nightAny doctor I want – this is so fineIf I’ve got the cash  – they’ve got the time.

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