0
E-patients and their hunt for health
information
Lee Rainie, Director, Pew Internet Project
7.26.13
Medical Library Associ...
“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 accide...
Lisa Kimbell email:
“If you're reading this it's because I
managed to convince Peter to send it
which makes me very happy ...
New social operating system:
Networked Individualism
• Social networks are more important
• Social networks are differentl...
Implications of networked
individualism for health care
• Social networks (and the internet) provide “second
opinions” – a...
But the fundamentals still apply
The last time you had a health issue,
did you get information, care, or
support from…
Tot...
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...
The % of adult internet users who have looked online in the
last 12 months for information about…
55% Specific disease or ...
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 ...
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 50-6...
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 1...
Health apps
All health app users (n=254)
Exercise, fitness, pedometer
or heart rate monitoring
38%
Diet, food, calorie cou...
Impact of tracking
• 34% of self-trackers say their data collection has
affected a health decision
• 40% of self-trackers ...
Digital Revolution 3
Social networking – 61% of all adults
% of internet users
9%
89%
7%
78%
6%
60%
1%
43%
0%
20%
40%
60%
...
The Landscape of Social Media Users (among adults)
% of internet
users who….
The service is especially appealing to
Use An...
U.S.: Dr. Social joins Dr. Google
• 35% of U.S. adults say they have gone online
specifically to try to figure out what me...
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 c...
How online searches affect decisions (1)
• 60% of e-patients say the information found
online affected a decision about ho...
• 49% say it changed the way they think about
diet, exercise, or stress management.
• 38% say it affected a decision about...
What social networks do for patients:
Why physicians can be “nodes”
• Attention – act as sentries
– alerts, social media i...
Health outcomes payoff
• Monitoring
• Interventions and
reinforcement
• Skills training – meds/devices
• Emotional and soc...
Be not
afraid
E-patients and their hunt for health information
E-patients and their hunt for health information
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E-patients and their hunt for health information

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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.

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Transcript of "E-patients and their hunt for health information"

  1. 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. 2. “Tell the truth, and trust the people” -- Joseph N. Pew, Jr. http://bit.ly/dUvWe3 http://bit.ly/100qMub
  3. 3. 3 “Tweckle (twek’ul) vt. To abuse a speaker to Twitter followers in the audience while he/she is speaking.”
  4. 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. 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. 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. 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. 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. 9. 3 tech revolutions
  10. 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. 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. 12. 326.4 Total U.S. population: 319 million 2012 Digital Revolution 2 - Mobile cell 91% … smartphone 56% … tablet 34%
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 16. 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.
  17. 17. 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
  18. 18. 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+
  19. 19. 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
  20. 20. 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.
  21. 21. Different sources for different needs
  22. 22. • “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
  23. 23. 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.
  24. 24. • 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)
  25. 25. 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
  26. 26. 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
  27. 27. Be not afraid
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