Lee Rainie, Director of the Pew Internet Project, will describe the Project’s research on how patients and caregivers seek health information in the digital age and he will describe how people fit librarians into their general information needs as well as their specific health needs.

1. E-patients and their hunt for health
information
Lee Rainie, Director, Pew Internet Project
7.26.13
Medical Library Association - NCNMLG/MLGSCA
Email: Lrainie@pewinternet.org
Twitter: @Lrainie

2. “Tell the truth, and trust the people”
-- Joseph N. Pew, Jr.
http://bit.ly/dUvWe3
http://bit.ly/100qMub

3. 3
“Tweckle (twek’ul) vt. To
abuse a speaker to Twitter
followers in the audience
while he/she is speaking.”

4. 4
we need a tshirt, "I survived the
keynote disaster of 09"
it's awesome in the "I don't want to
turn away from the accident
because I might see a severed
head" way
too bad they took my utensils away
w/ my plate. I could have jammed
the butter knife into my temple.

5. Lisa Kimbell email:
“If you're reading this it's because I
managed to convince Peter to send it
which makes me very happy even tho
I'm sure it makes Peter feel
uncomfortable. I'm sending a check out
to Oregon today…. Since most of us are
far away, we can't do much of that but
we can provide some cash to reduce the
stress of figuring out how to deal with
the day-to-day while they're dealing
with something way more important.”
Blogger Jessica Lipnack:
“… because you are reading this
post, you are connected to P+T.
Without their pioneering ideas and
frameworks, this kind of connection,
between you and me right now,
would be very different.”
Then she quotes Lisa Kimbell’s email
text

6. New social operating system:
Networked Individualism
• Social networks are more important
• Social networks are differently
composed
• Social networks perform new
functions, especially in conjunction
with social media

7. Implications of networked
individualism for health care
• Social networks (and the internet) provide “second
opinions” – and can be sources of misinformation
• Providers are “nodes” in people’s social networks, but
need to work harder
• Social networks are allies in care delivery
• Those in acute care use their networks differently
from those with chronic conditions
• Providers are assessed and judged in more public ways

8. But the fundamentals still apply
The last time you had a health issue,
did you get information, care, or
support from…
Total
yes
Yes,
online
Yes,
offline
Yes,
both
Not a
source
A doctor or other health care
professional 70% 1% 61% 8% 28%
Friends and family 60 1 39 20 39
Others who have the same health
condition 24 2 15 7 73
Source: Pew Research Center’s Internet & American Life Project, August 7-September 6, 2012 Survey. N=3,014 adults. Margin of
error for internet users (N=2,392) is +/- 2.6 percentage points.

9. 3 tech
revolutions

10. Digital Revolution 1: Broadband at home - 66%
Internet users overall - 85%
34%
3%
3%
66%
0%
10%
20%
30%
40%
50%
60%
70%
80%
June
2000
April
2001
March
2002
March
2003
April
2004
March
2005
March
2006
March
2007
April
2008
April
2009
May
2010
Aug
2011
Dec
2012
May
2013
Dialup
Broadband

11. The % of adult internet users who have looked online in the
last 12 months for information about…
55% Specific disease or medical problem
43 Certain medical treatment or procedure
27 How to lose weight or how to control your weight
25
Health insurance, including private insurance, Medicare or
Medicaid
19 Food safety or recalls
16 Drug safety or recalls
16 A drug you saw advertised
15 Medical test results
14 Caring for an aging relative or friend
12 Pregnancy and childbirth
11 How to reduce your health care costs
20 Any other health issue
72 at least one of the above topics

13. 326.4
Total U.S.
population:
319 million
2012
Digital Revolution 2 - Mobile
cell 91% … smartphone 56% … tablet 34%

14. Changes in smartphone ownership
35%
48%
17%
46%
41%
12%
56%
35%
9%
0%
20%
40%
60%
80%
100%
Smartphone Other cell phone No cell phone
May 2011 February 2012 May 2013

15. Smartphone ownership by income/age
77%
47%
22%
8%
81%
68%
40%
21%
90% 87%
72%
43%
0%
20%
40%
60%
80%
100%
18-29 30-49 50-64 65+
Less than $30,000 $30,000-$74,999 $75,000 or more

16. Mobile
health info
2010 2012
All cell phone owners 17% 31%
Men 17 29*
Women 16 33*
Age
18-29 29 42*
30-49 18 39*
50-64 7 19*
65+ 8 9
Race/Ethnicity
White, non-Hispanic 15 27*
Black, non-Hispanic 19 35*
Hispanic 25 38*
Annual household income
Less than $30,000/yr 15 28*
$30,000-$49,999 17 30*
$50,000-$74,999 17 37*
$75,000+ 22 37*
Education level
No high school diploma 16 17
High School grad 12 26*
Some college 21 33*
College+ 20 38*
• 91% of adults own cells
… of them …
• 31% get health information
• 9% get health text messages
---
• 56% own smartphones
… of them …
• 19% have health apps

17. Health apps
All health app users (n=254)
Exercise, fitness, pedometer
or heart rate monitoring
38%
Diet, food, calorie counter 31
Weight 12
Period or menstrual cycle 7
Blood pressure 5
WebMD 4
Pregnancy 3
Blood sugar or diabetes 2
Medication management
(tracking, alerts, etc)
2
Mood *
Sleep *
Other 14
69% track health indicator
for themselves or another
… of them …
• 49% of trackers say they
keep track of progress “in
their heads”
• 34% say they track the data
on paper, like in a notebook
or journal
• 21% say they use some
form of technology to track
their health data – and 7%
use an app.

18. Impact of tracking
• 34% of self-trackers say their data collection has
affected a health decision
• 40% of self-trackers say it has led them to ask a
doctor new questions or seek a second opinion
• 46% of self-trackers say it has changed their overall
approach to health
Pew Internet/California HealthCare Foundation survey

19. Digital Revolution 3
Social networking – 61% of all adults
% of internet users
9%
89%
7%
78%
6%
60%
1%
43%
0%
20%
40%
60%
80%
100%
2005 2006 2007 2008 2009 2010 2011 2012 2013
18-29 30-49 50-64 65+

20. The Landscape of Social Media Users (among adults)
% of internet
users who….
The service is especially appealing to
Use Any Social
Networking Site
72% Adults ages 18-29, women
Use Facebook 69% Women, adults ages 18-29
Use Google+ 31% Higher educated
LinkedIn 20%
Adults ages 30-64, higher income,
higher educated
Use Twitter 18%
Adults ages 18-29, African-Americans,
urban residents
Use Pinterest 15%
Women, adults under 50, whites,
those with some college education
Use Instagram 13%
Adults ages 18-29, African-Americans,
Latinos, women, urban residents
Use Tumblr 6% Adults ages 18-29
reddit 6% Men ages 18-29

21. U.S.: Dr. Social joins Dr. Google
• 35% of U.S. adults say they have gone online
specifically to try to figure out what medical condition
they or someone else might have.
• Search is still the starting point for 8 in 10 U.S.
internet users looking for health information (not
WebMD, Wikipedia, or Facebook, for example).
• Half of health searches are conducted on behalf of
someone else.
•1 in 4 U.S. internet users have, in the last 12
months, read or watched someone else’s experience
about health or medical issues (such as on a blog).
• 16% of U.S. internet users have, in the last 12
months, gone online to find others who might share
the same health concerns.

23. Different sources for different needs

24. • “Last search”: 48% for others; 36% for self;
11% for both
• Read others’ commentaries: 34%
• Find others who have same condition:
18%
• Get info from social networking site: 11%
SNS users
• Get info from Twitter: 8% of Twitter users
Impact of social networking on health searches

25. How online searches affect decisions (1)
• 60% of e-patients say the information found
online affected a decision about how to treat
an illness or condition.
• 56% say it changed their overall approach to
maintaining their health or the health of
someone they help take care of.
• 53% say it lead them to ask a doctor new
questions, or to get a second opinion from
another doctor.

26. • 49% say it changed the way they think about
diet, exercise, or stress management.
• 38% say it affected a decision about whether
to see a doctor.
• 38% say it changed the way they cope with a
chronic condition or manage pain.
How online searches affect decisions (2)

27. What social networks do for patients:
Why physicians can be “nodes”
• Attention – act as sentries
– alerts, social media interventions, pathways
through new influencers
• Assessment – act as trusted, wise companion
– help assess the accuracy of info, timeliness of info,
transparency and rigor of info
• Action – act as helpful producers/enablers
– help give people outlets for expression,
interpretation of their creations

28. Health outcomes payoff
• Monitoring
• Interventions and
reinforcement
• Skills training – meds/devices
• Emotional and social support
among peers
• “Information prescriptions”
• Amateur research
contributions – online
recruitment, communities and
clinical trials

29. Be not
afraid