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What people living with rare disease can teach us

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Pew Research Center's Internet & American Life Project
Pew Research Center's Internet & American Life Project

Pew Internet data on internet and cell phone adoption, plus the roadblocks and opportunities in the path of peer-to-peer health care.

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What people living with rare disease can teach us Susannah Fox, Associate Director Pew Research Center’s Internet & American Life Project @susannahfox @pewinternet @pewresearch 10th Moebius Syndrome Conference July 14, 2012
About Pew Internet • Part of the Pew Research Center, a non-partisan “fact tank” in Washington, DC • Studies how people use digital technologies • Does not promote specific technologies or make policy recommendations • Data for this talk is from nationally representative telephone surveys of U.S. adults and teens (on landlines and cell phones) All slides and reports are available at pewinternet.org
Tim O’Reilly’s Alpha Geeks: Hackers “So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises that are not yet apparent to others. In the computer industry, these are the folks I affectionately call ‘the alpha geeks,’ the hackers who have such mastery of their tools that they ‘roll their own’ when existing products don’t give them what they need. Watching the alpha geeks — people whom more traditional marketing analysts might call ‘lead users’ — can give insights into the future directions of technology, gaps in existing products, and new market opportunities.”
My Alpha Geeks: You Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible. People living with rare disease are the lead users of this new way of pursuing answers: peer-to-peer health care.
Internet use over time (1995-2012) % of adults ages 18+ who go online 90% 82% 80% (April 70% 2012) 60% 50% 40% 30% 20% 10% 14% (June 1995) 0% Source: Pew Internet surveys
Almost two-thirds of adults have home broadband % of adults ages 18+ who go online at home via dial-up or broadband Dial-up Broadband 80% 70% 66% 60% 50% 40% 30% 20% 10% 3% 0% June April March March April March March March April April May Aug April 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Source: Pew Internet surveys @kzickuhr @pewinternet pewinternet.org
Adult gadget ownership, 2006-2012 100% 88% Cell phone 80% 73% (total) Desktop 60% 68% 57% computer 55% Laptop 40% 30% computer 19% e-Book 20% reader 19% 2% 3% Tablet 0% computer Source: Pew Internet surveys. Data is for adults age 18+. pewinternet.org
Cell phones by age group 100 95% 94% 86% 80 77% 67% 60 40 20 0 12-17 18-29 30-49 50-64 65+ Teen data: July 2011 Adult data: Feb 2012 Source: Pew Internet surveys. pewinternet.org
Smartphones by age group 80% 70% 66% 59% 60% 50% 40% 34% 30% 23% 20% 13% 10% 0% 12-17 18-29 30-49 50-64 65+ Teen data: July 2011 Adult data: Feb 2012 Source: Pew Internet surveys. pewinternet.org
Roadblocks • pockets of people who are truly offline • people who are not motivated to engage in their health or seek treatment • technology that is simply a pain to use • communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other • a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes
Opportunities • caregivers who can provide second-degree internet access • a life-changing diagnosis or other event – triggering the diagnosis difference • introduction of a mobile device – triggering the mobile difference • technology that is easy to use, that makes engagement fun and even irresistible • technological means to connect silos and let data flow • mainstream press coverage, word of mouth, and clinical programs to spread awareness
Thank you! Please let me know if you have questions, comments, or research ideas: sfox@pewinternet.org @susannahfox @pewinternet @pewresearch All data, slides, and reports available at pewinternet.org

More Related Content

What people living with rare disease can teach us

  • 1. What people living with rare disease can teach us Susannah Fox, Associate Director Pew Research Center’s Internet & American Life Project @susannahfox @pewinternet @pewresearch 10th Moebius Syndrome Conference July 14, 2012
  • 2. About Pew Internet • Part of the Pew Research Center, a non-partisan “fact tank” in Washington, DC • Studies how people use digital technologies • Does not promote specific technologies or make policy recommendations • Data for this talk is from nationally representative telephone surveys of U.S. adults and teens (on landlines and cell phones) All slides and reports are available at pewinternet.org
  • 3. Tim O’Reilly’s Alpha Geeks: Hackers “So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises that are not yet apparent to others. In the computer industry, these are the folks I affectionately call ‘the alpha geeks,’ the hackers who have such mastery of their tools that they ‘roll their own’ when existing products don’t give them what they need. Watching the alpha geeks — people whom more traditional marketing analysts might call ‘lead users’ — can give insights into the future directions of technology, gaps in existing products, and new market opportunities.”
  • 4. My Alpha Geeks: You Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible. People living with rare disease are the lead users of this new way of pursuing answers: peer-to-peer health care.
  • 5. Internet use over time (1995-2012) % of adults ages 18+ who go online 90% 82% 80% (April 70% 2012) 60% 50% 40% 30% 20% 10% 14% (June 1995) 0% Source: Pew Internet surveys
  • 6. Almost two-thirds of adults have home broadband % of adults ages 18+ who go online at home via dial-up or broadband Dial-up Broadband 80% 70% 66% 60% 50% 40% 30% 20% 10% 3% 0% June April March March April March March March April April May Aug April 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Source: Pew Internet surveys @kzickuhr @pewinternet pewinternet.org
  • 7. Adult gadget ownership, 2006-2012 100% 88% Cell phone 80% 73% (total) Desktop 60% 68% 57% computer 55% Laptop 40% 30% computer 19% e-Book 20% reader 19% 2% 3% Tablet 0% computer Source: Pew Internet surveys. Data is for adults age 18+. pewinternet.org
  • 8. Cell phones by age group 100 95% 94% 86% 80 77% 67% 60 40 20 0 12-17 18-29 30-49 50-64 65+ Teen data: July 2011 Adult data: Feb 2012 Source: Pew Internet surveys. pewinternet.org
  • 9. Smartphones by age group 80% 70% 66% 59% 60% 50% 40% 34% 30% 23% 20% 13% 10% 0% 12-17 18-29 30-49 50-64 65+ Teen data: July 2011 Adult data: Feb 2012 Source: Pew Internet surveys. pewinternet.org
  • 10. Roadblocks • pockets of people who are truly offline • people who are not motivated to engage in their health or seek treatment • technology that is simply a pain to use • communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other • a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes
  • 11. Opportunities • caregivers who can provide second-degree internet access • a life-changing diagnosis or other event – triggering the diagnosis difference • introduction of a mobile device – triggering the mobile difference • technology that is easy to use, that makes engagement fun and even irresistible • technological means to connect silos and let data flow • mainstream press coverage, word of mouth, and clinical programs to spread awareness
  • 12. Thank you! Please let me know if you have questions, comments, or research ideas: sfox@pewinternet.org @susannahfox @pewinternet @pewresearch All data, slides, and reports available at pewinternet.org

Editor's Notes

  1. In June 1995, 14% of American adults used the internet.By the year 2000, just five years later, half of adults were online.Now, eight in ten adults use the internet, including half of seniors 65 and older.
  2. Overall, about seven in ten adults have internet at home.(No significant differences by gender.)
  3. Trends in device ownership among American adults (18+), 2006-2012
  4. Even among those over the age of 75, at least half (56%) have a cell phone.For comparison, just 31% have a desktop computer.
  5. Almost half (46%) of U.S. adults own a smartphone in 2012, up from 35% in 201118-24 year-olds: 67%25-34 year-olds: 71%23% of teens (ages 12-17) have smartphones as of July 201131% of 14-17 year-olds8% of 12-13 year-olds