What people living with rare disease can teach us Susannah Fox, Associate Director Pew Research Center’s Internet & American Life Project @susannahfox @pewinternet @pewresearch 10 th Moebius Syndrome Conference July 14, 2012
What people living with rare disease can teach us
Jan 28, 2015
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 DirectorPew Research Center’s Internet & American Life Project
@susannahfox @pewinternet @pewresearch
10th Moebius Syndrome ConferenceJuly 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 atpewinternet.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: YouPatients 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.
% of adults ages 18+ who go online
Internet use over time (1995-2012)
19951996199619971997199819981999200020002001200120022003200320042004200520052006200720072008200820092010201020112011
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
14% (June 1995)
82%(April2012)
Source: Pew Internet surveys
% of adults ages 18+ who go online at home via dial-up or broadband
Almost two-thirds of adults have home broadband
Source: Pew Internet surveys
66%
3%
June
200
0
April 20
01
Mar
ch 2
002
Mar
ch 2
003
April 20
04
Mar
ch 2
005
Mar
ch 2
006
Mar
ch 2
007
April 20
08
April 20
09
May
201
0
Aug 2
011
April 20
120%
10%
20%
30%
40%
50%
60%
70%
80%
Dial-up Broadband
@kzickuhr @pewinternet pewinternet.org
Apr-06
Dec-07
Apr-08
Apr-09
Sep-09
May-10
Sep-10
May-11
Aug-11
Jan-12 Feb-12
0%
20%
40%
60%
80%
100%
73%
88%
68%
55%
30%
57%
0.02
0.19
0.030.19
Cell phone (total)
Desktop computer
Laptop computer
e-Book reader
Tablet computer
Source: Pew Internet surveys. Data is for adults age 18+. pewinternet.org
Adult gadget ownership, 2006-2012
12-17 18-29 30-49 50-64 65+0
20
40
60
80
100
77%
95% 94%86%
67%
Cell phones by age group
Teen data: July 2011 Adult data: Feb 2012
Source: Pew Internet surveys. pewinternet.org
12-17 18-29 30-49 50-64 65+0%
10%
20%
30%
40%
50%
60%
70%
80%
23%
66%59%
34%
13%
Smartphones by age group
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:
@susannahfox @pewinternet @pewresearch
All data, slides, and reports available at pewinternet.org
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