Here is my third post in a series of look-backs at the November 2008 Chronic Disease Care conference in San Francisco. (OK, yes, it’s now January 2009 — I’m savoring the experience, not Twittering it!)

The first post was about spreading improvement beyond early adopters, the second was devoted to patient voices, and this will focus on the panel I moderated, Health 2.0: The Power of Participation.

Judging from the audience comments we received after the event, Amy Tenderich of Diabetes Mine, David Williams of PatientsLikeMe, and Jay Parkinson of Hello Health pretty much blew everyone’s minds.

I kicked things off with an overview of the topic.  The bullets:

75% of adults and 95% of teens go online. Half of adults living with a disability or chronic disease go online.

Eight in ten internet users (no matter their health status) look online for health info. E-patients living with a chronic condition are more likely than others to say that online info affects decisions about how to treat an illness,  prompts new questions of a doctor, and changes the way they cope with a chronic condition or manage pain. However, e-patients with a chronic condition are more likely than others to say they felt frustrated by a lack of info or an inability to find what they are looking for.

– But that is just the information stage of internet use. The next stage is participation, which often comes with an upgrade to broadband access.

– Most people under age 40 are fully engaged with social media, but not yet dealing with chronic illness. Most people over 60 are starting to face chronic conditions, but are not participating in social media. (For proof on the social media trends, see Pew Internet’s Usage Over Time spreadsheet.)

– One possible solution: Create spaces for participatory medicine now, worry about full participation later. As Mark Smith said in his opening remarks, transform care within the box, within the confines of where we are and where people living with chronic conditions are.

Then I introduced the three panelists as beacons for what is being done right now to transform care.

Amy Tenderich of Diabetes Mine talked about how the patient voice is emerging online (read more about her role in much of the action on the diabetes front in 2008). Amy let the powerful Diabetes Reloaded video make her point:

David Williams of PatientsLikeMe talked about how the extremely detailed, open-access patient data that people share on the site is printable (for doctor’s visits, for example). He said that data sharing confers status on the site and encourages empathy among participants. The instant mood tracker can even head off a flame war since everyone can see that a cranky comment on a forum is coming from someone who is, at that moment, in a bad mood. However, David pointed out that people may post all manner of extremely personal details, even sexual dysfunction, but are often coy about posting their weight.  (For more on the PatientsLikeMe practice and philosophy, I recommend following their excellent blog, The Value of Openness.)

Jay Parkinson closed out the panel with a bang. Although CHCF didn’t capture it on video, I found a couple of close approximations: Jay’s appearance at Pop!Tech 2008 and his slides (PDF) from the June 2008 HIMSS conference. Jay previewed my follow-up on his blog by posting answers to the most skeptical and most enjoyable questions he has received about Hello Health.

Since a good presentation really is all about the audience, I will share some of the feedback we received in the panel evaluations, from the enthused…

Thought-provoking and innovative.

–  Exciting-created a “crack” in my thinking that I intend to pry open further.

I appreciate how a single person can make a difference in the world of health care.

… to the skeptical…

Hard to consider how this is integrated to current systems and not just a parallel universe.

Would have loved to see an example of the “power of participation” that wasn’t tech-based included in this presentation panel.

Fascinating. I’m glad you did this; it’s the future/my son’s life. I don’t really believe it’s my life/my career; it’s definitely not the answer for the safety net now.

…to the truly repulsed…

I was nauseated at this presentation.

Well!

I appreciate this person’s honesty – their world was rocked by the discussion and their perspective is probably more common than we think. Which brings me back to Hunter Gatewood’s wonderful observation that early adopters are like  happy dogs in a pile of sticks. Late adopters are more like a hesitant cat, waiting to see what works, what blows up in dogs’ faces.” Innovation can be exciting, fascinating, and uncomfortable, especially if you’re not ready for it or if you disagree with the changes.

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