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
“Tell the truth, and trust the people”
-- Joseph N. Pew, Jr.
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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
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
But the fundamentals still apply
The last time you had a health issue,
did you get information, care, or
support from…
A doctor or other health care
professional
Friends and family
Others who have the same health
condition
Total
yes
Yes,
Yes,
online offline
Yes,
both
Not a
source
70%
1%
61%
8%
28%
60
1
39
20
39
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.
3 tech
revolutions
Digital Revolution 1: Broadband at home - 66%
Internet users overall - 85%
80%
70%
66%
60%
50%
40%
3%
30%
34%
Broadband
20%
10%
Dialup
3%
0%
June
2000
April March March April March March March April
2001 2002 2003 2004 2005 2006 2007 2008
April
2009
May
2010
Aug
2011
Dec
2012
May
2013
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
Health insurance, including private insurance, Medicare or
25
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
Digital Revolution 2 - Mobile
cell 91% … smartphone 56% … tablet 34%
326.4
Total U.S.
population:
319 million
2012
Changes in smartphone ownership
100%
80%
56%
60%
48%
46%
40%
41%
35%
35%
17%
20%
12% 9%
0%
Smartphone
May 2011
Other cell phone
February 2012
No cell phone
May 2013
Smartphone ownership by income/age
100%
80%
90%
77%
87%
81%
72%
68%
60%
47%
43%
40%
40%
22%
21%
20%
8%
0%
18-29
Less than $30,000
30-49
$30,000-$74,999
50-64
65+
$75,000 or more
2010
2012
17%
31%
Men
Women
Age
17
16
29*
33*
18-29
30-49
50-64
65+
Race/Ethnicity
29
18
7
8
42*
39*
19*
9
White, non-Hispanic
Black, non-Hispanic
Hispanic
Annual household income
15
19
25
27*
35*
38*
Less than $30,000/yr
$30,000-$49,999
$50,000-$74,999
$75,000+
Education level
15
17
17
22
28*
30*
37*
37*
No high school diploma
High School grad
Some college
College+
16
12
21
20
17
26*
33*
38*
All cell phone owners
Mobile
health info
• 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
Health apps
All health app users (n=254)
Exercise, fitness, pedometer
38%
or heart rate monitoring
69% track health indicator
31
for themselves or another Diet, food, calorie counter
Weight
12
… of them …
Period or menstrual cycle
7
• 49% of trackers say they
Blood pressure
keep track of progress “in
5
their heads”
WebMD
4
• 34% say they track the data Pregnancy
3
on paper, like in a notebook
Blood sugar or diabetes
2
or journal
Medication management
• 21% say they use some
2
(tracking, alerts, etc)
form of technology to track
their health data – and 7%
Mood
*
use an app.
Sleep
*
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
Digital Revolution 3
Social networking – 61% of all adults
18-29
100%
30-49
50-64
65+
% of internet users
89%
78%
80%
60%
60%
43%
40%
20% 9%
0% 6%
2005
7%
1%
2006
2007
2008
2009
2010
2011
2012
2013
The Landscape of Social Media Users (among adults)
Use Any Social
Networking Site
Use Facebook
Use Google+
% of internet
users who….
The service is especially appealing to
72%
Adults ages 18-29, women
69%
31%
Women, adults ages 18-29
LinkedIn
20%
Use Twitter
18%
Use Pinterest
15%
Use Instagram
13%
Use Tumblr
6%
Higher educated
Adults ages 30-64, higher income,
higher educated
Adults ages 18-29, African-Americans,
urban residents
Women, adults under 50, whites,
those with some college education
Adults ages 18-29, African-Americans,
Latinos, women, urban residents
Adults ages 18-29
Men ages 18-29
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.
Different sources for different needs
Impact of social networking on health searches
• “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
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.
How online searches affect decisions (2)
• 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.
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
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
Be not
afraid