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

Source: Pew Research Center’s Internet & American Life Project,

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