Building a Research Agenda for Participatory Medicine

For this Grand Rounds, 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?

A recent two-day meeting convened by the Legacy Foundation’s Schroeder Institute focused on similar questions, asking an interdisciplinary group to discuss the following opportunities:

  • 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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8 Responses to “Building a Research Agenda for Participatory Medicine”

  1. So how do these points help with people who are dealing with the majority of health ills — those that don’t have a rate of fatality?

    After all, we can say a person is pretty well motivated by the spectre of an early death to change certain behaviors if they can be convinced it’ll extend their lifespan. But what about some of the more chronic disorders, like depression or a personality disorder? Is the motivation as strong and is the give-back as obvious??

    And metrics are great for diseases or disorders where there’s a “stop date” or some other measure that one can regularly refer to. But so many mental disorders, for instance, have few or no metrics. What about them?

    Last, do they have any data about how many people “give back” to the community, versus those who move on and never visit the community again — both those who were helped by it, and those who were not?

    • Susannah Fox says:

      All good questions, many of which I hope are included in the Schroeder Institute’s eventual write-up of the research agenda resulting from this symposium. And if not, then someone should take them up for investigation.

      I briefly titled this post “Building a Research Agenda for Participatory Smoking Cessation” because the focus of my observations is that narrow, but decided to pay homage to the broader questions outlined by Kibbe & Kvedar. Your comment shows the limitations of what we know so far about the role of motivation, of coaches, of altruism in online communities.

      My notes from that day include data on the poor showing in general of QuitNet as a health intervention. It works for some of the people, some of the time, but it has not taken off in a way that many people had hoped it would. The good news is that researchers and advocates are being honest in their assessments, which hopefully will lead to a re-examination of what works, what fails, and why.

      In other words, “stay tuned” is the best we can say.

    • I would concur with Susannah that you raise excellent questions for which more research is urgently needed. Two points:

      1. I would say that the degree of “buy-in” and give back would be equally if not more significant in patient’s with chronic illness. From the perspective of the patient; they are dealing with a significant problem day in and day out and only interact with a physician a few times a year. The sense of isolation can be significant and prolonged periods without intervention may exacerbate non-compliant. At least in theory the idea of a “community” would serve as a significant motivating factor.

      2. In terms of the numbers of people who “give back” I would presume that there is insufficient quality data in the medical arena to look at. But I would also presume that there should be a substantial amount of data in the “tech” fields in areas such as forums or open source projects. I would think that the actual number of individuals who provide meaningful content is small. But, the nature of online communications allows even a small number of people giving back to make a huge impact. I’m thinking about the forums I peek into for technical support. Quite often I never actually leave a message but I’m helped immensely by persons who have posted hundreds of times. These individuals are providing a service (free of charge) and the leverage they exercise on large numbers of people cannot be underestimated.

  2. […] Here at e-Patients.net, our own Susannah Fox writes about an older JOPM article, David C. Kibbe and Joseph C. Kvedar on “Building a Research Agenda Participatory Medicine.” Kibbe and Kvedar had considered the role of coaching in increasing participation over time, how norms shape social behavior, and whether social networks could serve as a coaching tool. Following up on these points, Susannah talks about a recent meeting where Nicholas Christakis, co-author of the book Connected, considered ways to intervene in a social network. He discussed how “contagion manipulation as the most promising path for sparking health behavior change,” and provided evidence that “altruism spreads in networks.” This was all in a Legacy Foundation/Schroeder Institute discussion of the potential for smoking cessation via social networks. A group of ex-smokers took the stage later in the day and discussed how metrics motivates them, and supported the idea that 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.” [Link] […]

  3. […] “altruism” jumped out at me, since it resonates with other observations of how people stick around online health communities to help other people who come along after them. It also resonated with what Weitzman and Mandl […]

  4. Susannah Fox says:

    The paper resulting from this October 2010 meeting has just been published in the Journal of Medical Internet Research:

    Online Social Networks and Smoking Cessation: A Scientific Research Agenda
    http://www.jmir.org/2011/4/e119/

  5. […] “altruism” jumped out at me, since it resonates with other observations of how people stick around online health communities to help other people who come along after them. It also resonated with what Weitzman and Mandl […]

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