PewInternet.org The Rise of the e-Patient Understanding Social Networks and Online Health Information Seeking Lee Rainie, Director, Pew Internet Project Institute for Healthcare Advancement

The story of e-patients (and netweavers) Trudy and Peter Johnson-Lenz

New social operating system (1): Networked Individualism Social networks are more influential Social networks are differently composed Social networks perform different functions Social networks are more vivid and tied to creation of information/media

New social operating system (2): New kinds of patient communities Condition/illness centered Patient centered Disease posses Just-in-time, just-like-me peer-to-peer support groups Fifth Estate of content contributors

6 Revolution #1 Internet and Broadband

70% 66%

Consequences for info ecosystem Volume Velocity Vibrance Valence / Relevance

Consequences for info ecosystem Explosion of creators and niches

Networked creators among internet users 62% are social networking site users 55% share photos 33% create content tags 32% contribute rankings and ratings 30% share personal creations 26% post comments on sites and blogs 15% have personal website 15% are content remixers 14% are bloggers 12% use Twitter 4%-17%??? use location-sharing services

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 Crowd-sourced via e-patients: 19% consult rankings/reviews of providers (5% post them); 18% consult reviews of hospitals (4% post them) On alert: 14% signed up for alerts Each of the revolutions has changed health care searches and interactions (1)

13 Revolution #2 Wireless Connectivity

Cell phone owners – 85% adults 96 % 90% 85% 58% Urban-84% Suburban-86% Rural-77%

2/22/201115

Mobile internet connectors – 57% adults 62% 59% 55% Urban-60% Suburban-60% Rural-43%

Cell phones as social tools 2/22/ % of cell owners 54% send photo or video 23% access a social networking site 20% watch a video 15% post a photo/video online 11% have purchased a product 11% charitable donation by text 10% status update service such as Twitter

85% use cell phones 35% have apps 24% use apps All adults May 2010 and Nov 2010 surveys 1 in 4 adults use apps

55% of adults own laptops – up from 30% in % of adults own MP3 players – up from 11% in % of adults own DVRs – up from 3% in % of adults own game consoles 7% of adults own e-book readers - Kindle 7% of adults own tablet computer – iPad doubled in 6 months

Consequences for info ecosystem Anywhere Any device Presence Place Any time Alone together

Mobile reaches a different audience 4 in 10 U.S. adults have used their cell phones to access the internet: 48% of African Americans 40% of Latinos 31% of whites 1 in 4 U.S. adults used their cell phones for political activities during the 2010 election: 36% of African Americans 25% of Latinos and whites November 2010 survey

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)

23 Revolution #3 Social Networking

The social networking pop. is diverse 2/22/ x 7x 5x

Online video 2/22/ What You Need to Know: 69% of internet users (half of all US adults) watch videos online – and not just funny cat videos 14% of internet users have uploaded their own video content (up from 8% in 2007); sharing as likely to occur on social networking sites as specialized video sites

“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% of 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 providers can play in them Made it possible for experts to become “nodes” in people’s networks that can help them solve problems, make decisions Allowed for immediate, spontaneous creation of networks that can include professionals Given people a sense that there are more “friends” their networks like professionals whom they can access when they have needs

Where providers are best – 1 Accurate diagnosis

Where providers are best – 2 Info about prescription drugs

Where providers are best – 3 Info about alternative treatments

Where providers are best – 4 Recommendations about specialist

Where providers are best – 5 Recommendations about a medical facility

Where personal conn. are best – 1 Emotional support for dealing with illness

Where personal conn. are best – 2 Quick remedy for everyday health issues

Where personal conn. are OK – 3 Quick remedy for everyday health issues

What social networks do for patients: Why experts can be “nodes” Attention – act as sentries – alerts, social media interventions, pathways through new influencers Assessment – act as trusted, smarter 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