{"id":95615,"date":"2010-10-21T00:00:00","date_gmt":"2010-10-21T05:00:00","guid":{"rendered":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/2010\/10\/21\/lessons-learned-online-patient-communities\/"},"modified":"2024-04-14T04:17:43","modified_gmt":"2024-04-14T09:17:43","slug":"lessons-learned-online-patient-communities","status":"publish","type":"post","link":"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/2010\/10\/21\/lessons-learned-online-patient-communities\/","title":{"rendered":"Lessons Learned: Online Patient Communities"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Susannah Fox participated in a discussion of how the maturation of online social networks, patient communities, and patient blogs affects health and health care. <\/p>\n\n<p class=\"wp-block-paragraph\">Watch a <a href=\"http:\/\/healthcare.partners.org\/streaming\/CCH\/symposium2010\/2010.10.21_Breakout8.html\" target=\"_blank\" rel=\"noopener noreferrer\">video <\/a>of the 45-minute discussion, including 15 minutes of Q&amp;A with the audience.\u00a0<\/p>\n\n<p class=\"wp-block-paragraph\">Highlights:<\/p>\n\n<ul class=\"wp-block-list\">\n<li>Minute 2: Josh Bernoff&#8217;s opening remarks included advice about <a href=\"http:\/\/forrester.typepad.com\/groundswell\/2009\/04\/how-to-create-a-social-application-for-life-sciences-without-getting-fired.html\" target=\"_blank\" rel=\"noopener noreferrer\">how to create a social application for life sciences without getting fired<\/a> and pharmaceutical companies&#8217; ever-decreasing appetite for risk.<\/li>\n<li>Minute 7:\u00a0Susannah Fox\u00a0talks about our increasingly mobile-enabled population (that is also increasingly being diagnosed with chronic diseases).\u00a0 Imagine a future designed by <a href=\"http:\/\/www.bjfogg.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">BJ Fogg<\/a> and <a href=\"http:\/\/twitter.com\/rzeiger\" target=\"_blank\" rel=\"noopener noreferrer\">Roni Zeiger<\/a>: a patient won&#8217;t get a new prescription without also being given an immediate, easy-to-execute opportunity to join an online patient network. <i>(Read more: <a href=\"http:\/\/e-patients.net\/archives\/2010\/06\/patient-communities-at-walgreens.html\" target=\"_blank\" rel=\"noopener noreferrer\">Patient Communities&#8230; at Walgreens?<\/a> and <a href=\"http:\/\/e-patients.net\/archives\/2010\/10\/no-social-network-rx-malpractice.html\" target=\"_blank\" rel=\"noopener noreferrer\">No social network Rx? Malpractice!<\/a>)<\/i><\/li>\n<li>Minute 10: Lisa Gualtieri\u00a0describes her research into patient blogging, where people share intimate details and remain dedicated to the project even if they have very few readers. Measuring health outcomes is her ultimate goal.<\/li>\n<li>Minute 18: Tim Edgar\u00a0asks the panel to describe lessons learned and Josh admonishes clinicians to know what resources are available to patients these days, singling out CaringBridge as an example.<\/li>\n<li>Minute 20:\u00a0\u00a0Susannah talks about how some online communities are about making you feel loved at 2am &#8211; and that&#8217;s great &#8211; but then there are the patient networks that focus on science, on outcomes, on drug discovery. <i>(Read more: <a href=\"http:\/\/e-patients.net\/archives\/2010\/08\/patient-communities-which-way-forward.html\" target=\"_blank\" rel=\"noopener noreferrer\">Patient Communities: Which Way Forward?<\/a>)<\/i><\/li>\n<li>Minute 23: Lisa talks about how social media and health education are not part of medical school curricula.\u00a0 She points to intermediaries, such as medical librarians, to bridge the gap between patients and providers.<\/li>\n<li>Minute 25:\u00a0Susannah talks about <b>what can&#8217;t scale<\/b> (health professionals, medical librarians) and <b>what can scale<\/b> (online searches, peer advice).\u00a0 Josh then describes his ideal model for providing information and asks for audience participation (thank goodness, because they were an incredibly well-qualified group to respond). <\/li>\n<li>If you&#8217;ve made it this far in the video, just keep watching to the end and take notes on the resources recommended by audience members &#8211; and add your own observations in the comments on <a href=\"http:\/\/e-patients.net\/archives\/2010\/11\/connected-health-patient-networks-panel.html\" target=\"_blank\" rel=\"noopener noreferrer\">e-patients.net<\/a><\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\"> <strong>For more information about the panelists, please see:<\/strong> <\/p>\n\n<p class=\"wp-block-paragraph\">Lisa Gualtieri:\u00a0 <a href=\"http:\/\/lisaneal.wordpress.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">blog<\/a>, <a href=\"http:\/\/twitter.com\/lisagualtieri\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter page<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">Josh Bernoff: <a href=\"http:\/\/www.forrester.com\/rb\/analyst\/josh_bernoff\" target=\"_blank\" rel=\"noopener noreferrer\">publications<\/a>, <a href=\"http:\/\/twitter.com\/jbernoff\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter page<\/a><\/p>\n\n<p class=\"wp-block-paragraph\">Susannah Fox: <a href=\"http:\/\/e-patients.net\/archives\/author\/Susannah%20Fox\" target=\"_blank\" rel=\"noopener noreferrer\">blog<\/a>, <a href=\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Experts\/Susannah-Fox.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">publications<\/a>, <a href=\"http:\/\/twitter.com\/SusannahFox\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter page<\/a><\/p>\n\n<p class=\"wp-block-paragraph\"> <strong>For more information about the event, please see:<\/strong>\u00a0<a href=\"http:\/\/www.connected-health.org\/events\/symposium-2010.aspx\">http:\/\/www.connected-health.org\/events\/symposium-2010.aspx<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Susannah Fox participated in a discussion of how the maturation of online social networks, patient communities, and patient blogs affects health and health 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