{"id":7455,"date":"2010-10-11T18:16:09","date_gmt":"2010-10-11T22:16:09","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=7455"},"modified":"2010-10-11T18:16:09","modified_gmt":"2010-10-11T22:16:09","slug":"building-a-research-agenda-for-participatory-medicine","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/10\/building-a-research-agenda-for-participatory-medicine.html","title":{"rendered":"Building a Research Agenda for Participatory Medicine"},"content":{"rendered":"<p>For this Grand Rounds, I chose David C. Kibbe &amp; Joseph C. Kvedar&#8217;s article, &#8220;<a href=\"http:\/\/www.jopm.org\/evidence\/reviews\/2009\/10\/21\/building-a-research-agenda-for-participatory-medicine\/\" target=\"_blank\">Building a Research Agenda for Participatory Medicine<\/a>&#8221; (<em>JoPM<\/em>, Vol. 1, 2009). I will highlight two of their &#8220;ready-to-go&#8221; research questions:<\/p>\n<ul>\n<li>What is the role of coaching in sparking and supporting increased participation over time?<\/li>\n<li>What can we learn from research on how social norms shape behavior\u2014with  the idea of developing hypotheses on whether social networks could serve  as a coaching tool?<\/li>\n<\/ul>\n<p>A recent two-day meeting convened by the <a href=\"http:\/\/www.legacyforhealth.org\/\" target=\"_blank\">Legacy Foundation<\/a>\u2019s <a href=\"http:\/\/www.legacyforhealth.org\/2616.aspx\" target=\"_blank\">Schroeder Institute<\/a> focused on similar questions, asking an interdisciplinary group to discuss the following opportunities:<\/p>\n<ul>\n<li>Smoking      is the leading preventable cause of death in the U.S.<\/li>\n<li><a href=\"http:\/\/www.pewinternet.org\/Topics\/Topic-Category-2\/Social-Networking.aspx\" target=\"_blank\">Nearly      half of American adults<\/a> use online social network sites such as Facebook,      MySpace, and LinkedIn.<\/li>\n<li>Networks      magnify whatever they are seeded with, for good or for ill.<\/li>\n<\/ul>\n<p>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\u2019s keynote speech. He, along with James Fowler, wrote the book <a href=\"http:\/\/connectedthebook.com\/\" target=\"_blank\"><em>Connected<\/em><\/a>, which is the source for the third bullet above.<\/p>\n<p>Christakis talked about two ways to intervene in a social network: rearranging connections (isolating bad apples, for example) or changing the information flows (termed \u201ccontagion manipulation\u201d). 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\u2019t ready to drop spouses and friends who smoke in order to succeed.<\/p>\n<p>He also provided evidence that <strong>altruism spreads in networks<\/strong>. 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.<\/p>\n<p>The rest of the morning&#8217;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.<\/p>\n<p>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.<\/p>\n<p>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\u2019t like.<\/p>\n<p>One after another talked about how metrics motivate them: \u201cI quit 193  days and 8 hours ago\u201d and \u201cI\u2019ve been smoke-free for 2,000 days and not  smoked 50,000 cigarettes.\u201d 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.<\/p>\n<p>It was Christakis &amp; Fowler&#8217;s assertion come to life: <strong>Altruism spreads<\/strong>. Or, to bring it back to Kibbe &amp; Kvedar&#8217;s question: If you have benefited from peer coaching, you are more likely to become a coach.<strong> <\/strong>And coaches not only stick to their non-smoking regimen, but <strong>stick around the network to spark this behavior in other people.<br \/>\n<\/strong><\/p>\n<p>Jeri, for example, said she keeps an eye out for new users and tries to help two people each day. If someone hasn\u2019t received any responses to a question or \u201ccrave\u201d 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.<\/p>\n<p>During Q&amp;A, someone asked what is the \u201cpixie dust\u201d for successful communities. Alan, a QuitNet admin, responded, \u201cOur users come to us knowing they are dying, in the throes of a fatal addiction.\u201d They are motivated to join, participate, and play by the rules. His metric of success is the ownership felt by members of the community.<\/p>\n<p>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, <strong>but only because they want to give back what they received.<\/strong> 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 <a href=\"http:\/\/www.pewinternet.org\/Reports\/2009\/8-The-Social-Life-of-Health-Information.aspx\" target=\"_blank\">social life of health information<\/a> is not restricted to a single topic, but rather is as diverse as the people who participate.<\/p>\n<p>A third researcher asked how they \u201ccombat untruths.\u201d The answer: The network heals itself. Their advice: Don\u2019t build in too many controls, or you will crush the adaptations that squash falsehoods.<\/p>\n<p>This brought up another theme: Who\u2019s 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 \u2013 and you may never hear from that person again on the site.<\/p>\n<p>I was struck that day, by the fact that the Schroeder Institute event embodied the principles set out by Kibbe &amp; Kvedar:<\/p>\n<blockquote><p>[T]he task at hand is to understand the value of individuals\u2019 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.<\/p><\/blockquote>\n<p>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 &#8212; including ex-smokers &#8212; changed the conversation for the better.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>For this Grand Rounds, I chose David C. Kibbe &amp; Joseph C. Kvedar&#8217;s article, &#8220;Building a Research Agenda for Participatory Medicine&#8221; (JoPM, Vol. 1, 2009). I will highlight two of their &#8220;ready-to-go&#8221; research questions: What is the role of coaching in sparking and supporting increased participation over time? What can we learn from research on [&hellip;]<\/p>\n","protected":false},"author":29,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[12],"tags":[646,4194,4141,4191,4189,4195,4192,4190],"coauthors":[],"class_list":["post-7455","post","type-post","status-publish","format-standard","hentry","category-found-on-the-net","tag-david-kibbe","tag-james-fowler","tag-joe-kvedar","tag-legacy","tag-nicholas-christakis","tag-quitnet","tag-schroeder-institute","tag-smoking-cessation"],"jetpack_publicize_connections":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Building a Research Agenda for Participatory Medicine - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2010\/10\/building-a-research-agenda-for-participatory-medicine.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Building a Research Agenda for Participatory Medicine - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"For this Grand Rounds, I chose David C. 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