The Rise of the e-Patient: Understanding Social Networks and Online Health Information-Seeking

The Rise of the e-Patient Understanding Social Networks and Online Health Information Seeking Lee Rainie, Director, Pew Internet Project 5.5.11 Institute for Healthcare Advancement Email: [email_address] Twitter: @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

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)

Revolution #2 Wireless Connectivity

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

2/22/2011

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

Cell phones as social tools
% 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
2/22/2011

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 – 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

Revolution #3 Social Networking

The social networking pop. is diverse 2/22/2011 5x 5x 7x 5x

Online video 2/22/2011
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

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)

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
June 25, 2010

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

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The Rise of the e-Patient: Understanding Social Networks and Online Health Information-Seeking

by Pew Research Center's Internet & American Life Project on May 05, 2011

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