PewInternet.org

The Rise of the e-PatientUnderstanding Social Networks and Online Health

Information Seeking

Lee Rainie, Director, Pew Internet Project5.5.11Institute for Healthcare AdvancementEmail: Lrainie@pewinternet.orgTwitter: @Lrainie

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%

2/22/2011 15

Mobile internet connectors – 57% adults

62% 59% 55%

Urban-60% Suburban-60% Rural-43%

Cell phones as social tools

2/22/2011 17

% 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 2006

45% of adults own MP3 players – up from 11% in 2005

50% of adults own DVRs – up from 3% in 2002

42% of adults own game consoles

7% of adults own e-book readers - Kindle

7% of adults own tablet computer – iPaddoubled in 6 months

Consequences for info ecosystem

Anywhere Any device

PresencePlace

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 Americans40% of Latinos31% of whites

1 in 4 U.S. adults used their cell phones for political activities during the 2010 election:

36% of African Americans25% 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 #3Social

Networking

The social networking pop. is diverse

2/22/2011 24

5x

5x

7x5x

Online video

2/22/2011 25

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, 2010 29

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 – 1Accurate diagnosis

Where providers are best – 2Info about prescription drugs

Where providers are best – 3Info about alternative treatments

Where providers are best – 4Recommendations about specialist

Where providers are best – 5Recommendations about a medical facility

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

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

Where personal conn. are OK – 3Quick 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 ecologyHave 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