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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.

Published in: Technology, Health & Medicine

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