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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.
http://bit.ly/dUvWe3
http://bit.ly/100qMub
3
“Tweckle (twek’ul) vt. To
abuse a speaker to Twitter
followers in the audience
while he/she is speaking.”
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.
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
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…
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.
3 tech
revolutions
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
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
326.4
Total U.S.
population:
319 million
2012
Digital Revolution 2 - Mobile
cell 91% … smartphone 56% … tablet 34%
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
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
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
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.
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
% 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+
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
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
• “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
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.
• 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)
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

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E-patients and their hunt for health information

  • 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.
  • 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
  • 12.
  • 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.
  • 22.
  • 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