PewInternet.org Online health seeking How Social Networks Can be Health Communities NAHSL Conference - Libraries in Balance October 25, 2010 Newport, R.I. Lee Rainie: Director, Pew Internet Project

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April 12, “ Lee Rainie, director Pew Internet: incredibly how many words he in a sense and a minute weet to pronounce!”

6 “Tweckle (twek’ul) vt. To abuse a speaker to Twitter followers in the audience while he/she is speaking.” we need a tshirt, "I survived the keynote disaster of 09" it's awesome in the "I don't want to turn away from the accident because I might see a severed head" way Too bad they took my utensils away w/ my plate. I could have jammed the butter knife into my temple.

October 22, Apology Revolution 1 Internet and broadband

Impact of internet revolution Volume, velocity, variety of info increase – Long tail, passions/distractions The “people formerly known as the patients/audience” become publishers and broadcasters – and pundits/critics – 2/3 of online adults and 3/4 of online teens are content creators The “Daily Me” and “Daily Us” emerges as people customize info flows – >50% of adults customize digital info

October 22, Apology Revolution 2 Wireless connectivity

Cell phone owners – 85% adults 96% 90% 85% 58%

Mobile internet connectors – 57% adults 62% 59% 55%

New cell and wireless realities More than 2/3 of adults and 3/4 of teens use the cloud Web vs. apps struggle: 35% have apps; 24% use apps Features used by cell owners – 76% take pictures – 74% are texters (text overtakes talk in frequency in 2009) – 39% browse internet – 34% are users – 34% record videos – 34% play games – 33% play music – 30% are IM-ers – 7% participate in video calls

Impact of mobile revolution Information, media, people available anytime, anywhere, any device – Venues and availability of people and info shift People “control the playlist and “make the appointments” with media People’s attention to info and to others shifts – Truncates – “continuous partial attention” – Elongates – deep dives into subjects

October 22, Apology Revolution 3 Social networking

Impact of social network revolution Tech social networking combines with other historic trends to transform social networks – Affluence and affordable technology, mobility, family composition and roles, labor markets/free agency, rise of DIY politics and religion What’s changed in social networks – Composition - tightly-bound, close groups give way to more loosely-knit, diverse networks – more segmented and layered – Way people use them – more important in stressful environments Social networks are more vivid and tied to creation of information/media – Merger of “real world” and “new media world” in a way that makes media more personal = social media

Internet – Empowered and engaged – 61% of all adults get health info online (80% of internet users) – Participatory e-patients – 60% consume social media; 29% have contributed content – Crowdsourced via e-patients: 19% consult rankings/reviews of providers (5% post them); 18% consult reviews of hospitals (4% post them) Each of the revolutions has changed health care searches and interactions (1)

Mobile – Real-time – 17% use mobile phone for health info; 7% have health apps on handhelds – Over-represented among young, minorities, urban residents, upper SES – NO FEMALE/MALE DIFFERENCES Each of the revolutions has changed health care searches and interactions (2)

Social network – “Last search”: 48% for others; 36% for self; 11% for both – Read others’ commentaries: 34% – Find others who have same condition: 18% – Get info from social networking site: 11% SNS users – Get info from Twitter: 8% of Twitter users Each of the revolutions has changed health care searches and interactions (3)

How online searches affect decisions (1) 60% of e-patients say the information found online affected a decision about how to treat an illness or condition. 56% say it changed their overall approach to maintaining their health or the health of someone they help take care of. 53% say it lead them to ask a doctor new questions, or to get a second opinion from another doctor.

49% say it changed the way they think about diet, exercise, or stress management. 38% say it affected a decision about whether to see a doctor. 38% say it changed the way they cope with a chronic condition or manage pain. How online searches affect decisions (2)

June 25, What technology has done to social networks and the role librarians can play in them Made it possible for experts like librarians to become “nodes” in people’s networks that can help them solve problems and make decisions Allowed for immediate, spontaneous creation of networks that can include librarians Given people a sense that there are more “friends” their networks like librarians that they can access when they have needs

The networked world of e-patients What providers are good for Diagnosis / treatments Prescriptions Recommendation for specialist Recommendation for hospital Info on alternative treatments What others are good for Emotional support Practical advice for day- to-day coping Recommendation for quick remedy for everyday issue

June 25, Implications for librarians – 1 Reasons to re-vision your role in a world where much has changed - Everyone’s access to information is easier -Value of information is in flux -Curating information means more than maintaining collections -Creating media is easier – so, networked creators can be your allies -Established scientific methods are being challenged and there is a public yearning for trusted “tour guides”

June 25, Implications for librarians – 2 You can help teach new literacies - screen literacy - graphics and symbols - navigation literacy - connections and context literacy - skepticism - value of contemplative time - how to create content - ethical behavior in new world

What social networks do for patients: Why librarians can be “nodes” Attention – act as sentries – alerts, social media interventions, pathways through new influencers Assessment – act as trusted, wise companion – help assess the accuracy of info, timeliness of info, transparency and rigor of info Action – act as helpful producers/enablers – help give people outlets for expression, interpretation of their creations

Good news about new info ecology Have you or has anyone you know been HELPED by following medical advice or health information found on the internet? Major help – 10% Moderate help – 20% Minor help – 11% No help – 50% Don’t know – 4% Have you or has anyone you know been HARMED by following medical advice or health information found on the internet? Major harm – 1% Moderate harm – 1% Minor harm – 1% No harm – 94% Don’t know – 3% 41%3%

Be not afraid