Unraveling the Health Care Hairball: A Health 2.0 Conference Recap

I've heard the state of health care described in many compelling yet disheartening ways: broken, expensive, inconsistent, complicated. But today I like this one best: health care is a hairball.

Although Google suggests others coined the phrase before last Thursday, I credit Wayne Gattinella, CEO of WebMD, for introducing it to me and many of the 500 others attending Health 2.0: User-Generated Healthcare in San Francisco last Thursday. For all of us who hope the tools of the social Web might play a role in untangling health care's many problems, now we know what we're up against.

Health 2.0 was the brainchild of Matthew Holt of The Health Care Blog and Indu Subaiya, MD of Etude Scientific, and they delivered a conference with many thought-provoking product demonstrations (and yes, a product launch or two) and much food for thought.

Many bloggers covered the play-by-play better than I can, and I will mention a few, as well as posts by participants, after the jump. If I missed any, please e-mail me at eculbertson (at) rwjf (dot) org so I can add them. But here are a few of my observations and questions about how health 2.0 might affect patients and consumers:

If and when Health 2.0 comes to pass, the amount and type of information available to consumers, already large, will explode. For the next generation of motivated and connected consumers (no small caveat there), the benefits of Health 1.0 -- read the same medical information that your doctor does, find like-minded people online to discuss your health conditions -- will be combined with the ability to personalize, discuss, rate and store information to benefit from the lessons and observations of an entire community.

In Health 1.0, you can track your chronic condition online. In Health 2.0 you might be able to share that tracker with others, who can then view a community's usage of medications (and side effects) and lifestyle changes. You could use this information to ask for a different drug or dose from your doctor. Instead, your doctor could use this information to determine whether to change your dosage.

In Health 1.0, you can Google "headache sore throat cough" as you try to decide if you have a cold or allergies. In Health 2.0 you might pose a question ("I've had a sore throat, dry cough and a sinus headache for the past two days. What could be wrong?") to an engine searching both medical literature and various online communities, or one personalized with your previous medical history and/or the data from your DNA.

Armed with (or drowning in) all of that information, what will consumers trust and act on? In the world of Health 1.0, the credibility of content -- especially in online communities, but also in health care portals -- is a source of concern. Who stands behind that information posted online? Is it too good to be true?

In the world of Health 2.0, you would have an even larger array of sources to consult when you leave the doctor's office (or read my doctor's e-mail), including user-generated feedback of "official" sources, others' opinions about the doctor providing your care and your peers' real-time, self-reported health data.

For example, if your doctor suggests you try a new drug, what would you want to know: what the experts say (what's on the label, what's in journals or textbooks) or what the members of your online community report (for example, how many people in my online condition community are taking the drug? at what dose? what effects, positive or negative, do they mention side effects after taking it? what do they say when you ask them about it)? If you searched a health search engine that also has access to your personal health information, would this drug show up as an option for you at all?

Will all consumers weigh this information the same way? And will they sort out what to do with this information the same way?

Tomorrow, I'll write more about how Health 2.0 panelists viewed the Web intersecting with with the rest of health care: will it be sooner, later or not at all?

In the meantime, if you were there, I'm curious what you thought and where you see greatest potential or pitfalls.

Until tomorrow, here's coverage of Health 2.0 to check out:

• David Kibbe
• Diabetes Mine
• The Doctor Weighs In
• Esther Dyson (on HuffingtonPost)
• Facebook Wall for Health 2.0
• Francine Hardaway
• ICYou video clips
• iHealthBeat writes up the Mercury News' account: how will anyone make money off of this?
• Matthew Holt's blogosphere round-up
• Scott Shreeve

UPDATED: Karen Herzog, whose Sophia's Garden was featured in the demonstration of social media for patients, wrote in with additional Health 2.0 coverage.

As an aside: If tomorrow's patients see everyday benefits from Web 2.0 tools to provide information and support, it will be in no small part due to inventive uses of technology in the face of real-life medical challenges presented in the social media panel. Karen and her husband, Richard Sachs, used technology to inform and coordinate after their daughter, Sophia, was diagnosed with Niemann-Pick Disease, Type A, a rare and incurable genetic disorder. Similarly, PatientsLikeMe.com was inspired by the ALS diagnosis of Stephen Heywood.

Heatlh 2.0 Conference -- Present at the Birth
Health Populi/Jane Sarasohn-Kahn

This just in from Health 2.0
e-Patients.net/Cheryl Greene

Health 2.0 Conference - Social Netwoks
eHealth/by John Sharp

Health 2.0: User-Generated Healthcare Conference 2007
Health Care Law Blog/Bob Coffield

Comments

[JB Cossart]

Dear Emily,

I wanted to let you know how much I enjoy following your blog - in particular, the round up of the Health 2.0 conference was well done. I am an editor for The Issue (a recently launched Blog Newspaper) and we've selected this post in today's publication. You can find it in the Science and Health Section.

Cheers
JB Cossart
The Issue | Science&Health
www.TheIssue.com

[McKenzie]

In my view, Health 2.0 is much more interactive experience and allow the user to have a consultation with doctors. Through online portals such as http://onlineconsultation.com the doctor can always make a virtual house call of sorts...I wonder what Health 3.0 will be all about.