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


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Lee Rainie discusses e-patients and their online behavior.

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  • The Rise of the e-Patient: Understanding Social Networks and Online Health Information-Seeking   Lee Rainie Director, Pew Internet & American Life Project   Keeping track of where and how American adults are getting their health information is a critical first step in knowing how to reach them with usable and understandable information. This session will share the latest research, including new data on online health information-seeking, mobile devices in healthcare, and digital patient communities in the age of social networks.   Learning Objectives: After attending this session, attendees will be able to: Cite one statistic regarding how Americans are accessing health information online Discuss trends in the use of mobile devices in a health setting State one way to adapt your practice to reflect the new reality of digital information usage
  • Rise of broadband at home was transformative – internet becomes a central info and communications hub in the home after the switch from dial-up. People do more stuff online; privilege the internet over other info sources in many cases; report better outcomes from internet use, and, most importantly become content creators. Two thirds of adults and 80% of teens are content creators. This is the big change the internet has introduced to media landscape. Probably take a minute to say this.
  • The info ecology changes thanks to rise of internet/broadband. Volume of information rises 20-30% per year. Never had anything close to this in human history. Velocity of information increases, especially in groups. Personally relevant news speeds up as people customize personal feeds, alerts, listservs, group communications. Vibrance of information/media increases as bandwidth increases and computing power grows so media experiences become more immersive and compelling Valence/relevance of information grows in the era of the “Daily Me” and “Daily Us” and custom feeds. 2 mins
  • Perhaps biggest change in info ecology is the democratization of media – and proliferation of niches. The Long Tail becomes reality for media and brands.
  • This is the way Pew Internet measures content creation….
  • 9% of cell phone users have software applications or “apps” on their phones that help them track or manage their health. Some 15% of those ages 18-29 have such apps.
  • The change wrought by mobile is that people are perpetually connected and pervasively available. It means that media and people are available anywhere with any device on any of three screens. Quick tout of Nielsen 3-Screen research (unless you want to do that) and how this shifts the venues and times of people’s encounters with media. Consumers run the playlist now, not the media companies. This changes people’s sense of place (and placelessness) and present. They can be with any one at any time and this creates the reality of “absent presence”.
  • More than a quarter of American adults – 26% – used their cell phones to learn about or participate in the 2010 mid-term election campaign.   In a post-election nationwide survey of adults, the Pew Research Center’s Internet & American Life Project found that 82% of adults have cell phones. Of those cell owners, 71% use their phone for texting and 39% use the phone for accessing the internet. With that as context, the Pew Internet survey found that: 14% of all American adults used their cell phones to tell others that they had voted. 12% of adults used their cell phones to keep up with news about the election or politics. 10% of adults sent text messages relating to the election to friends, family members and others. 6% of adults used their cells to let others know about conditions at their local voting stations on election day, including insights about delays, long lines, low turnout, or other issues. 4% of adults used their phones to monitor results of the election as they occurred. 3% of adults used their cells to shoot and share photos or videos related to the election. 1% of adults used a cell-phone app that provided updates from a candidate or group about election news. 1% of adults contributed money by text message to a candidate or group connected to the election like a party or interest group.  If a respondent said she or he had done any of those activities in the last campaign season, we counted that person in this 26% cohort. Throughout this report we call this group “mobile political users” or the “mobile political population.”
  • The Rise of the e-Patient: Understanding Social Networks and Online Health Information-Seeking

    1. 1. 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
    2. 2. The story of e-patients (and netweavers) Trudy and Peter Johnson-Lenz
    3. 4. New social operating system (1): Networked Individualism <ul><li>Social networks are more influential </li></ul><ul><li>Social networks are differently composed </li></ul><ul><li>Social networks perform different functions </li></ul><ul><li>Social networks are more vivid and tied to creation of information/media </li></ul>
    4. 5. New social operating system (2): New kinds of patient communities <ul><li>Condition/illness centered </li></ul><ul><li>Patient centered </li></ul><ul><li>Disease posses </li></ul><ul><li>Just-in-time, just-like-me peer-to-peer support groups </li></ul><ul><li>Fifth Estate of content contributors </li></ul>
    5. 6. Revolution #1 Internet and Broadband
    6. 8. 70% 66%
    7. 9. Consequences for info ecosystem <ul><li>Volume </li></ul>Velocity Vibrance Valence / Relevance
    8. 10. Consequences for info ecosystem Explosion of creators and niches
    9. 11. Networked creators among internet users <ul><li>62% are social networking site users </li></ul><ul><li>55% share photos </li></ul><ul><li>33% create content tags </li></ul><ul><li>32% contribute rankings and ratings </li></ul><ul><li>30% share personal creations </li></ul><ul><li>26% post comments on sites and blogs </li></ul><ul><li>15% have personal website </li></ul><ul><li>15% are content remixers </li></ul><ul><li>14% are bloggers </li></ul><ul><li>12% use Twitter </li></ul><ul><li>4%-17%??? use location-sharing services </li></ul>
    10. 12. <ul><ul><li>Empowered and engaged – 61% of all adults get health info online (80% of internet users) </li></ul></ul><ul><ul><li>Participatory e-patients – 60% consume social media; 29% have contributed content </li></ul></ul><ul><ul><li>Crowd-sourced via e-patients: 19% consult rankings/reviews of providers (5% post them); 18% consult reviews of hospitals (4% post them) </li></ul></ul><ul><ul><li>On alert: 14% signed up for alerts </li></ul></ul>Each of the revolutions has changed health care searches and interactions (1)
    11. 13. Revolution #2 Wireless Connectivity
    12. 14. Cell phone owners – 85% adults 96 % 90% 85% 58% Urban-84% Suburban-86% Rural-77%
    13. 15. 2/22/2011
    14. 16. Mobile internet connectors – 57% adults 62% 59% 55% Urban-60% Suburban-60% Rural-43%
    15. 17. Cell phones as social tools <ul><li>% of cell owners </li></ul><ul><li>54% send photo or video </li></ul><ul><li>23% access a social networking site </li></ul><ul><li>20% watch a video </li></ul><ul><li>15% post a photo/video online </li></ul><ul><li>11% have purchased a product </li></ul><ul><li>11% charitable donation by text </li></ul><ul><li>10% status update service such as Twitter </li></ul>2/22/2011
    16. 18. 85% use cell phones 35% have apps 24% use apps All adults May 2010 and Nov 2010 surveys 1 in 4 adults use apps
    17. 19. 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
    18. 20. Consequences for info ecosystem Anywhere Any device Presence Place Any time Alone together
    19. 21. Mobile reaches a different audience <ul><li>4 in 10 U.S. adults have used their cell phones to access the internet: </li></ul><ul><ul><ul><li>48% of African Americans </li></ul></ul></ul><ul><ul><ul><li>40% of Latinos </li></ul></ul></ul><ul><ul><ul><li>31% of whites </li></ul></ul></ul><ul><li>1 in 4 U.S. adults used their cell phones for political activities during the 2010 election: </li></ul><ul><ul><ul><li>36% of African Americans </li></ul></ul></ul><ul><ul><ul><li>25% of Latinos and whites </li></ul></ul></ul>November 2010 survey
    20. 22. <ul><ul><li>Real-time – 17% use mobile phone for health info; 7% have health apps on handhelds </li></ul></ul><ul><ul><li>Over-represented among young, minorities, urban residents, upper SES </li></ul></ul><ul><ul><li>NO FEMALE/MALE DIFFERENCES </li></ul></ul>Each of the revolutions has changed health care searches and interactions (2)
    21. 23. Revolution #3 Social Networking
    22. 24. The social networking pop. is diverse 2/22/2011 5x 5x 7x 5x
    23. 25. Online video 2/22/2011 <ul><li>What You Need to Know: </li></ul><ul><li>69% of internet users (half of all US adults) watch videos online – and not just funny cat videos </li></ul><ul><li>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 </li></ul>
    24. 26. <ul><ul><li>“ Last search”: 48% for others; 36% for self; 11% for both </li></ul></ul><ul><ul><li>Read others’ commentaries: 34% </li></ul></ul><ul><ul><li>Find others who have same condition: 18% </li></ul></ul><ul><ul><li>Get info from social networking site: 11% of SNS users </li></ul></ul><ul><ul><li>Get info from Twitter: 8% of Twitter users </li></ul></ul>Each of the revolutions has changed health care searches and interactions (3)
    25. 27. How online searches affect decisions (1) <ul><li>60% of e-patients say the information found online affected a decision about how to treat an illness or condition . </li></ul><ul><li>56% say it changed their overall approach to maintaining their health or the health of someone they help take care of. </li></ul><ul><li>53% say it lead them to ask a doctor new questions , or to get a second opinion from another doctor. </li></ul>
    26. 28. <ul><li>49% say it changed the way they think about diet, exercise, or stress management . </li></ul><ul><li>38% say it affected a decision about whether to see a doctor. </li></ul><ul><li>38% say it changed the way they cope with a chronic condition or manage pain. </li></ul>How online searches affect decisions (2)
    27. 29. What technology has done to social networks and the role providers can play in them <ul><li>Made it possible for experts to become “nodes” in people’s networks that can help them solve problems, make decisions </li></ul><ul><li>Allowed for immediate, spontaneous creation of networks that can include professionals </li></ul><ul><li>Given people a sense that there are more “friends” their networks like professionals whom they can access when they have needs </li></ul>June 25, 2010
    28. 30. Where providers are best – 1 Accurate diagnosis
    29. 31. Where providers are best – 2 Info about prescription drugs
    30. 32. Where providers are best – 3 Info about alternative treatments
    31. 33. Where providers are best – 4 Recommendations about specialist
    32. 34. Where providers are best – 5 Recommendations about a medical facility
    33. 35. Where personal conn. are best – 1 Emotional support for dealing with illness
    34. 36. Where personal conn. are best – 2 Quick remedy for everyday health issues
    35. 37. Where personal conn. are OK – 3 Quick remedy for everyday health issues
    36. 38. What social networks do for patients: Why experts can be “nodes” <ul><li>Attention – act as sentries </li></ul><ul><ul><li>alerts, social media interventions, pathways through new influencers </li></ul></ul><ul><li>Assessment – act as trusted, smarter companion </li></ul><ul><ul><li>help assess the accuracy of info, timeliness of info, transparency and rigor of info </li></ul></ul><ul><li>Action – act as helpful producers/enablers </li></ul><ul><ul><li>help give people outlets for expression, interpretation of their creations </li></ul></ul>
    37. 39. Good news about new info ecology <ul><li>Have you or has anyone you know been HELPED by following medical advice or health information found on the internet? </li></ul><ul><li>Major help – 10% </li></ul><ul><li>Moderate help – 20% </li></ul><ul><li>Minor help – 11% </li></ul><ul><li>No help – 50% </li></ul><ul><li>Don’t know – 4% </li></ul><ul><li>Have you or has anyone you know been HARMED by following medical advice or health information found on the internet? </li></ul><ul><li>Major harm – 1% </li></ul><ul><li>Moderate harm – 1% </li></ul><ul><li>Minor harm – 1% </li></ul><ul><li>No harm – 94% </li></ul><ul><li>Don’t know – 3% </li></ul>41% 3%
    38. 40. Be not afraid