The Rise of the e-Patient


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Director Lee Rainie presented to physicians, administrators, and staff at Providence St. Joseph Medical Center in Burbank, California on January 12 on understanding social networking and online health information seeking.

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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  
  • This is the way Pew Internet measures content creation….
  • Citation: “The Social Life of Health Information”
  • Health apps Health apps are of particular interest to those in the public health and epidemiology arenas, and Pew Internet has been measuring use of these apps for more than a year. In September 2010, data showed that 9% of all adult cell users had an app that “helped them track or manage their health.” This captures a wide range of software applications, from those that count calories and help manage an exercise routine, to more advanced apps that monitor vital signs and help individuals manage serious health conditions. In 2010, cell users who reported having health apps on their phones were disproportionately young, African-American, and living in urban areas. Specifically, 15% of cell phone users age 18-29 reported having mobile health apps, compared with 8% of cell users ages 30-49. And while 15% of African-American cell users had a health app on their phone, the same was true of just 7% of white and 11% of Latino cell phone users.   Figure 12: Demographic groups most likely to download an app that helps them track or manage their health % of app downloaders in each group who have downloaded a health app…   Source: Pew Research Center's Internet & American Life Project, July 25-August 26, 2011 Tracking Survey. N=658 app downloaders. Interviews conducted in English and in Spanish. An asterisk (*) indicates a significant difference at the 95% confidence level.   In August 2011, the question was asked of adults who have downloaded an app to a cell phone or tablet computer, rather than all cell phone users. More than a quarter of this population (29%) report downloading a health app. Looking just at adults who download apps to a cell phone, this translates to 11% of all adult cell phone users having downloaded an app that helps them manage their health, a statistically insignificant difference from the 9% of adult cell users who reported having a mobile health app in September 2010. 2011 results are also similar in the sense that adults living in urban areas are most likely to report downloading an app that helps them track or manage their health. And again, younger adults are more likely than older adults to download this type of app; however, in the current survey, 30-49 year-olds are as likely as 18-29 year-olds to download a health app. It is only adults age 50 and older who lag behind. Also, in August 2011, there are no significant differences across racial/ethnic groups where downloading health apps is concerned.   “ Mobile Health 2010,” available at
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  • The Rise of the e-Patient

    1. The Rise of the e-Patient Understanding Social Networks and Online Health Information Seeking Lee Rainie, Director, Pew Internet Project 1.12.12 Providence St. Joseph Medical Center, Burbank Email: [email_address] Twitter: @Lrainie
    3. The story of e-patients (and netweavers) Trudy and Peter Johnson-Lenz
    5. New social operating system: Networked Individualism <ul><li>Social networks are more important </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>
    6. Implications of networking individualism for health care <ul><li>Social networks (and the internet) provide “second opinions” – and can be sources of misinformation </li></ul><ul><li>Providers are necessarily “nodes” in people’s social networks </li></ul><ul><li>Social networks are allies and complements for care delivery </li></ul><ul><li>Those in acute care use their networks differently from those with chronic conditions </li></ul><ul><li>Providers are assessed and judged in more public ways </li></ul>
    7. Digital Revolution 1 Internet (83%) and Broadband at home (67%) 71% 67%
    8. Networked creators among internet users <ul><li>65% 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>13% use Twitter </li></ul><ul><li>6% location services – 9% allow location awareness from social media – 23% maps etc. </li></ul>
    9. 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 18% of adults own e-book readers - Kindle 20% of adults own tablet computer – iPad, Kindle Fire - doubled in 1 month
    10. <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>Impact on health
    11. Anti-Hippocratic Age <ul><li>I SWEAR … I will impart a knowledge of the Art to my own sons, and those of my teachers, and to disciples bound by a stipulation and oath according to the law of medicine, </li></ul>but to none others.
    12. AMA press release December 20, 2001 6. Remember that the Internet cannot replace a physician’s expertise and training …. If you have questions, trust your physician, not a chat room
    13. Demographic factors correlated w/ broadband adoption Source: Pew Internet Project, August, 2011 tracking survey 10/5/2010 Trends in Home Broadband Adoption Positive correlation (in order of importance) Negative correlation (in order of importance) Household income of $75,000 or more per year Having high school degree or less College degree Senior citizen (age 65+) Parent with minor child at home Rural resident Married or living with partner Disabled Employed full time African-American
    14. By the numbers: Who’s not online? Source: Pew Internet Project, May 2010 tracking survey 10/5/2010 Trends in Home Broadband Adoption 17% … of American adults are not online 34% of them have some past or current contact w/ internet 10% of them want to use the internet in the future 61% of them would need assistance getting online
    15. Relevance & digital literacy are primary factors for not going online Source: Pew Internet Project, May 2010 tracking survey 10/5/2010 Trends in Home Broadband Adoption
    16. Digital Revolution 2 Mobile – 84% 327.6 Total U.S. population: 315.5 million
    17. Mobile internet connectors – 63% adults
    18. The rise of apps culture - 50% of adults
    19. Mobile health apps
    20. <ul><ul><li>Real-time – 35+% use mobile phone for health info; 29% have health apps on handhelds </li></ul></ul><ul><ul><li>Place-less and time-less </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>Impact on health
    21. Digital Revolution 3 Social networking – 50% of all adults % of internet users
    22. <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% SNS users </li></ul></ul><ul><ul><li>Get info from Twitter: 8% of Twitter users </li></ul></ul>Impact on health
    23. How people make medical decisions <ul><li>Mindset – general approach to medicine </li></ul><ul><li>Data/Numbers – and how they are presented </li></ul><ul><li>Stories </li></ul>
    24. 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” in their networks like professionals whom they can access when they have needs </li></ul>June 25, 2010
    25. 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. <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. The networked world of e-patients <ul><li>What providers are good for </li></ul><ul><li>Diagnosis / treatments </li></ul><ul><li>Prescriptions </li></ul><ul><li>Recommendation for specialist </li></ul><ul><li>Recommendation for hospital </li></ul><ul><li>Info on alternative treatments </li></ul><ul><li>What others are good for </li></ul><ul><li>Emotional support </li></ul><ul><li>Practical advice for day-to-day coping </li></ul><ul><li>Recommendation for quick remedy for everyday issue </li></ul>
    28. What’s a doctor to do about e-patients? <ul><li>Minimum engagement </li></ul><ul><ul><li>“ Tell me what you’re thinking” - Groopman </li></ul></ul><ul><ul><li>Ask about patients’ internet use, exposure on social networking, what they post and read </li></ul></ul><ul><li>Medium engagement </li></ul><ul><ul><li>Ask if patients would be willing to be let you/staff be a node on social media </li></ul></ul><ul><li>Heavy engagement </li></ul><ul><ul><li>Do it yourself </li></ul></ul>
    29. What social networks do for patients: Why physicians 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, wise 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>
    30. Health outcomes payoff <ul><li>Monitoring </li></ul><ul><li>Interventions and reinforcement </li></ul><ul><li>Skills training – meds/devices </li></ul><ul><li>Emotional and social support among peers </li></ul><ul><li>“ Information prescriptions” </li></ul><ul><li>Amateur research contributions – online recruitment, communities and clinical trials </li></ul>
    31. Health outcomes payoff <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%
    32. Be not afraid