Of all the participants at Health 2.0, Esther Dyson may be the best known outside the world of healthcare.  Esther was one of the earliest backers of Health 2.0 and it is far from an exaggeration to say that the conference would not have been possible without her support and encouragement. Together with Steve Brown of Health Hero, David Kibbe of AAFP, Lee Shapiro of Allscripts, Jay Silverstein of Revolution Health and CommerceNet’s Marty Tenenbaum, she anchored the day’s closing reactor panel: "Health 2.0: Looking Ahead."  Today she offers her reactions to what she saw and experienced on September 20th. This post first appeared on Esther’s blog at the Huffington Post, from where it has been repotted, as Esther might put it. 

Last week I participated in Matthew Holt’s and Indu Subaiya’s Health 2.0 conference,
which attracted more than twice the number of people they had
anticipated (about 500) and left many more turned away. So, clearly,
something’s in the air.

People
are excited. There were two drug-interaction companies – DoubleCheckMD
onstage and PharmaSurveyor at a booth – that allow individuals (and
doctors) to mine huge amounts of information to assess heir own drug
combinations. There were countless social networks, self-monitoring
services and other harbingers of the new, user-controlled world of
health online. [Disclosure at the end.]

My role was as an end-of-day panelist, reacting to what I had seen, and
here is what I said (somewhat cleaned up, of course). It brought me
back to New Year’s of 2004/2005, when I attended a
health-care panel at Renaissance Weekend. In Renaissance fashion
(everyone’s an expert), there were about 25 panelists and three of us
in the audience. The experts were indeed experts: head of a health
insurance company, a longtime ER doctor, a couple of execs from a
variety of health 1.0 providers (i.e. hospitals and clinics), some
government officials, and so on. They were intelligent, lucid, sincere
and well-meaning. Each of them gave a little talk he or she had clearly
given a hundred times, and each of the panelists had probably heard at
least some of the other panelists ten or twenty times. They explained
the problems with the system eloquently: mis-aligned incentives,
stalled information flows, undereducated consumers, overworked doctors,
prohibitive liability insurance and excessive CYA testing, and on and
on. It was clear nothing could be done.

If this session had been held in my industry, I thought,
there would have been five ex-doctors with perpetual-motion-like
schemes to predict the onset of cancer, realign incentives, re-train
consumers and avoid the extra testing through better information
management. And there would have been ten VCs waiting to fund them.
Where was the energy, naivete – and funding – that could foster change?

Two years ago at CNET I managed to get 100 participants to such an
event (on "Personal Health Information"). It was tremendously exciting,
but not really the critical mass that Matt and Indu collected last
week.

A calcified heart

Yet I’m not sure it is a critical mass yet. The folks
assembled will certainly create something new. In a way, they are like
the mobile phone companies, routing around the dying landline
companies… but now that all the incumbents have bought most of the
mobile companies, it’s not clear what we have achieved.

In the same way, the companies here are empowering consumers (or
patients) giving them the tools to talk to one another, to question
their doctors, to monitor their own conditions…

But they can’t simply dissolve a hairball, as someone described the
health care system earlier in the day. They need to take on the
calcified mess at the bottom of the drain – or to be more anatomical
about it, they are clearing the capillaries and buffing the nerve
endings, but at the center of everything there’s a calcified heart
pumping blood/information/money in the wrong direction through a
tangled mass of arteries that misdirects resources to tumors and
useless vestigial organs.

That will take serious staying power and serious money. Many of
these companies have no business model at all – except perhaps for
being bought by Google or Revolution Health or some wealthy eyeball
aggregator.

Routing around the damage and eroding the center

Yet I’m optimistic. These start-ups will tug at the system. Instead
of relying on blood from the heart, they’ll start to generate their own
– whether it’s genetic information supplied for their own purposes by
individuals and also contributed (or sold) to research; user-generated
monitoring data; or user payments from people with large deductibles or
no insurance at all.

Things start to change when the institutions don’t control all the
information. Even though the largest flow of money will still be
centralized and often mis-directed, the new user tools will make all
the tangles more visible.

At that point, the Health 3.0 conference will have to include folks
from the establishment – government, large software vendors and
entrenched health-care institutions.

Information won’t make you free, but it will force you to address the questions

One way or another, we’ll start to face the questions we used to
bury in obscurity: Who pays? Who costs money? and most compellingly:
What outcomes should we expect for any given population and what
outcomes do we actually get? That’s when we’ll be able to see the
impact of the institutions: I.e., we’ll be able to say which
institutions do a good job, after adjustments for the population they
serve (wiping out the excuse of "well, you see, we have a unique
population of patients so it’s unfair to compare us to any other
institution.")

Once that happens, we’ll have to start facing the basic question:
How much of each person’s health care costs should be a public
responsibility, and how much should be borne by individuals?

Let me leave that question hanging, and move on to the second point.

With all thy getting, get understanding

Yes, it’s true that at the center of our health care system there’s
a giant fibrillating mass of heart and arterial tissue. But at the
center of each of the putatively empowered users we celebrate, there’s
a hardened, irrational human soul, greedy for short-term gratification,
terrified or oblivious of consequences, and innumerate to boot.

Much of the conversation centered around getting information to
users, but what about getting them to act on it? Probably the strongest
candidate in that field is RealAge.com,  which Hearst is acquiring for a reported $100 million. They weren’t there, unfortunately; they were probably busy talking to the new owners.

RealAge is a slightly cheesy site that relies a little too much on ads
for vitamin supplements, but it is focused on behavior modification.
You fill out a fairly lengthy questionnaire – but it asks you things
you are likely to know, such as your number of friends or *whether* you
take your meds, not which ones they are…. Then it calculates your
RealAge, which is either lower or higher than your calendar age
depending on your answers. It’s pretty easy to figure out how changing
your answers will change your RealAge. Drive slower – or report that you drive slower – and voila!  minus quite a few months!

Sure, people may lie, but they’d prefer to tell the truth and
RealAge motivates them. I bet that RealAge has changed more behavior,
more cost-effectively, than any entity other than Alcoholics Anonymous
(and perhaps some churches).

Social networks may come close, and they are a wonderful
development. A large number of them showed up at Health 2.0, including
both disease-centered patients’ groups and doctors’ and clinicians’
communities, each with its own approach.

But most of these are for care-givers or for the ill. The trick is
to reach the healthy as well as the ill. In the end, the cheapest way
to foster health is to maintain it, reducing the need for health care
in the first place.

Disclosure:  I’m on the board of (and an investor in) 23andMe, an investor in PatientsLikeMe, Ovusoft , and a likely investor in ReliefInsite. I was an investor in Medstory,
now happily repotted at Microsoft. And I’m a research subject in George
Church’s Personal Genome Project – more about that soon.