Building a Research Agenda for Participatory Medicine
For the Grand Rounds hosted by e-patients.net this week, I chose David C. Kibbe & Joseph C. Kvedar’s article, “Building a Research Agenda for Participatory Medicine” (JoPM, Vol. 1, 2009). I will highlight two of their “ready-to-go” research questions:
- What is the role of coaching in sparking and supporting increased participation over time?
- What can we learn from research on how social norms shape behavior—with the idea of developing hypotheses on whether social networks could serve as a coaching tool?
- Smoking is the leading preventable cause of death in the U.S.
- Nearly half of American adults use online social network sites such as Facebook, MySpace, and LinkedIn.
- Networks magnify whatever they are seeded with, for good or for ill.
A monsoon swept through DC on the morning of the first day and nearly prevented me from making it to the event, but I arrived in time to hear Nicholas Christakis’s keynote speech. He, along with James Fowler, wrote the book Connected, which is the source for the third bullet above.
Christakis talked about two ways to intervene in a social network: rearranging connections (isolating bad apples, for example) or changing the information flows (termed “contagion manipulation”). Christakis is betting on contagion manipulation as the most promising path for sparking health behavior change. Good thing, too, since most people who want to quit smoking probably aren’t ready to drop spouses and friends who smoke in order to succeed.
He also provided evidence that altruism spreads in networks. Experiments have confirmed what we have all seen in our daily lives: the more help you get, the more likely you will be to help someone else.
The rest of the morning’s presentations were dominated by other social network theorists and smoking-cessation experts, each of whom had evidence to share about the opportunities and pitfalls in their fields.
The turning point in the day came when a group of ex-smokers took the stage. It was as if all the charts and graphs and Ns had come to life to talk back to the assembled researchers.
Naturally these were the success stories, the ones for whom QuitNet and other online social support programs worked. But I appreciated hearing about their experiences with this or that intervention or treatment, what they liked or didn’t like.
One after another talked about how metrics motivate them: “I quit 193 days and 8 hours ago” and “I’ve been smoke-free for 2,000 days and not smoked 50,000 cigarettes.” And to a person they talked about the kindness they receive from strangers on their favorite online social network and their own motivation to contribute to the community.
It was Christakis & Fowler’s assertion come to life: Altruism spreads. Or, to bring it back to Kibbe & Kvedar’s question: If you have benefited from peer coaching, you are more likely to become a coach. And coaches not only stick to their non-smoking regimen, but stick around the network to spark this behavior in other people.
Jeri, for example, said she keeps an eye out for new users and tries to help two people each day. If someone hasn’t received any responses to a question or “crave” comment, she will respond and, even more powerfully, she will follow up the next day to see if the person was able to resist smoking.
During Q&A, someone asked what is the “pixie dust” for successful communities. Alan, a QuitNet admin, responded, “Our users come to us knowing they are dying, in the throes of a fatal addiction.” They are motivated to join, participate, and play by the rules. His metric of success is the ownership felt by members of the community.
One researcher asked a follow-up question: What is the longevity of the pixie dust? Will you need the community forever? The panelists answered, essentially, yes, but only because they want to give back what they received. Their friends are part of these smoking-cessation networks, whether engaged in on-site discussions about killing the crave for cigarettes, poetry, or skin care. The social life of health information is not restricted to a single topic, but rather is as diverse as the people who participate.
A third researcher asked how they “combat untruths.” The answer: The network heals itself. Their advice: Don’t build in too many controls, or you will crush the adaptations that squash falsehoods.
This brought up another theme: Who’s in charge? The answer: Everybody. Whoever is available at the moment steps up to support a fellow member who is dealing with a cigarette crave – and you may never hear from that person again on the site.
I was struck that day, by the fact that the Schroeder Institute event embodied the principles set out by Kibbe & Kvedar:
[T]he task at hand is to understand the value of individuals’ active, informed involvement in their health and health care, and what it will take to ensure that they are able to act on their own behalf. We believe that the answers will come from interdisciplinary research that calls on the knowledge and skills of patients, clinicians, behavioral and social scientists, and health services researchers.
I look forward to many more events like this one, whether they are large conferences or small meetings. The presence of a diverse group of discussants — including ex-smokers — changed the conversation for the better.
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