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

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