The presence of patients changes public conversations about health care

I’m attending a LOT of conferences this fall and over & over I am seeing the power of having patients in the room. e-Patient Connections was a wonderful and well-documented example (in blogs, on Twitter, plus the large in-person audience) as will be Health 2.0 San Francisco.

But the one that turned my head around was a smaller meeting here in DC that is getting less attention in the blogosphere/Twittersphere, “Online Social Networks and Smoking Cessation: Strategic Research Opportunities.” It was sponsored by the Schroeder Institute for Tobacco Research and Policy Studies, which is part of Legacy. About 100 people from many disciplines – academics, activists, counselors, federal agency reps, and (in the “patient” role) ex-smokers.

Prior to the meeting we were all sent a huge briefing book of academic journal articles and the morning’s speakers focused on the theories laid out in those articles, many of which didn’t directly relate to smoking cessation. My favorite, of course, was Nicholas Christakis, author of Connected, who had not only the most interesting data on social networks and smoking cessation, but delivered it in beautiful data visualizations.

Directly after lunch, five ex-smokers took the stage under the title “End User Panel” which I found a bit odd (end user of cigarettes? end user of social network sites? end user of health care?). After all the theory covered in the morning, it was refreshing to hear from people who actually used online social networks to quit smoking and help others to quit. They got more questions than any other speaker, including Christakis, as researchers lined up to gain insights about what worked and what didn’t.

Later in the day we broke up into working groups to discuss what research questions we would tackle if we had unlimited funds (ie, let your imaginations run wild). Each group had its share of academics and front-line advocates, so it made for an interesting exchange of ideas. Example: the PhD who said, “what we really need is a theoretical framework,” and the smoking-cessation counselor who immediately countered, “what we really need is a strategy to stay ahead of the tobacco industry.” Need I say more about the power of having a diversity of perspectives in any discussion of health behavior?

For more on the same topic, please see:

The business of patient engagement: should consumers be regulated? by e-Patient Dave (where I first posted this comment)

Patient Voices at CHCF’s Chronic Disease Care Conference, by me (2008)

Patient Involvement Makes People Smile, by Ted Eytan (2008)

Blogging Crohnology.MD’s creative process (with a patient at the helm), by John Liesveld and Nikolai Kirienko (2010)

Patients bringing it all to the table, by Regina Holliday (2010)