Here are some top-level reflections from the second day of the first-ever Health 2.0 Meets Ix Conference (see here for Day 1 thoughts as well)…

The online output from the conference demonstrates how fast the online user-generated world has changed. Matthew Holt and I met less than four years ago when he live-blogged the 2005 Ix Conference on The Health Care Blog. The concept of live-blogging our event seemed like a complete novelty at the time. In contrast, there were more than 100 different unique twitterers at our conference this year, and (according to Enoch Choi’s rough estimate) they generated more than 3,000 tweets.

Susannah Fox reported new Pew Internet & American Life Project data reinforcing that the average consumer’s first place to go for health information is their clinicians. Consumers rely more on professionals in health care than any other industry. It’s fascinating in the context of our lively discussion yesterday about what the concept of “expert” means in a field as complex as health care. The fact is that there’s so much that we don’t know—which is reminiscent of Einstein’s comment late in his life that he knew less than 1% of what there is to know about physics.

Thanks to Neil Calman for making sure that we not only focus on cost and quality, but just as importantly on equality. I couldn’t agree more. And more to the point for all of us in this space: As we evolve the Ix and Health 2.0 fields, we must ensure that the answers we come up with meet the needs of everyone in our diverse population. Otherwise, any gains in quality we achieve will increase the health and health care disparities that already exist.

Everything we do to reform the delivery system needs to start with the consumer. We can’t build patient-centered care delivery if we don’t let the consumer guide us to what will make it easier for them to live healthier lives. We can learn from consumers in several ways, each of which offers different information:

• Representative surveys of the population—allow us to understand the prevalence of various consumer behaviors
• Structured one-on-one interviews – provide a vehicle for a deep exploration of consumers’ perspectives on their health needs and desires
• Focus groups – similar to structured interviews, but introduce a group dynamic to understanding consumer perspectives
• Online communities – Teach us about what e-patients do all the time.
• Observations of consumers in their normal daily living and in their encounters of the delivery system – provide a window into what it’s exactly like to live in someone else’s shoes

Paul Wallace (who, in the mid-1990s, was still a practicing oncologist) shared his own story from one of his ovarian cancer patients that shaped much of what he does now. After demonstrating that she knew more about her specific condition than he did, she told him, “Don’t tell me what to do; tell me what it means for me.”

Danny Sands described how health care is a participatory sport, not a spectator sport. I couldn’t agree more, which I expressed in my post, “Baseball and Health Care: Only One is a Spectator Sport.”

Although no doubt some divergence of opinion existed among the more than 500 people with us for the last day and a half, I repeatedly heard from the stage, the audience and in the hallways a general consensus that Ix and Health 2.0 have far more synergies than tensions. Matthew, Indu and I clearly agree. But these two movements approach the patient-centered orientation of care from different perspectives. The exploration taught us all a lot about what we need to do to drive a reformed health care delivery system.

This entry was posted on Friday, April 24th, 2009 at 7:40 am and is filed under Health 2.0 Space, Participatory Medicine, Patient Stories, Patient-Clinician Relationship, Safety-Net Populations. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.