E-patients and social media

Lee Rainie, Director, Pew Internet Project - @lrainie10.10.13Hofstra University

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

http://bit.ly/100qMub

Un-Hippocratic

I SWEAR… I will impart a knowledge of the Art to my own sons, and those of my teachers, and to disciples bound by a stipulation and oath, according to the law of medicine,

but to none others

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

Networked Individualism

More importantDifferently composed

Perform new functionsLubricated by social media

Health care implications

Source of caregiving Second opinions

Providers as “nodes”Performing in public

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 39Others 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 - 70% (+10% more have smartphones) - Internet users overall: 85%

June 2000

April 2001

March 2002

March 2003

April 2004

March 2005

March 2006

March 2007

April 2008

April 2009

May 2010

Aug 2011

April 2012

May 2013

0%

20%

40%

60%

80%

100%

3%

70%

Dial-up Broadband

Broadband at home

Dial-up at home

The % of adult internet users who have looked online in the last 12 months for information about…55% Specific disease or medical problem43 Certain medical treatment or procedure27 How to lose weight or how to control your weight

25 Health insurance, including private insurance, Medicare or Medicaid

19 Food safety or recalls16 Drug safety or recalls16 A drug you saw advertised15 Medical test results14 Caring for an aging relative or friend12 Pregnancy and childbirth11 How to reduce your health care costs20 Any other health issue

72 at least one of the above topics

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.

Digital Revolution 2Mobile – 91% … smartphone 56% … tablets 34%

326.4Total U.S. population:319 million

2012

Changes in smartphone ownership

Smartphone Other cell phone No cell phone0%

20%

40%

60%

80%

100%

35%

48%

17%

46%41%

12%

56%

35%

9%

May 2011 February 2012 May 2013

Smartphone ownership by income/age

18-29 30-49 50-64 65+0%

20%

40%

60%

80%

100%

77%

47%

22%

8%

81%

68%

40%

21%

90% 87%

72%

43%

Less than $30,000 $30,000-$74,999 $75,000 or more

Mobile health info

2010 2012All cell phone owners 17% 31%Men 17 29*Women 16 33*Age18-29 29 42*30-49 18 39*50-64 7 19*65+ 8 9Race/EthnicityWhite, non-Hispanic 15 27*Black, non-Hispanic 19 35*Hispanic 25 38*Annual household incomeLess than $30,000/yr 15 28*$30,000-$49,999 17 30*$50,000-$74,999 17 37*$75,000+ 22 37*Education levelNo high school diploma 16 17High 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 appsAll health app users (n=254)

Exercise, fitness, pedometer or heart rate monitoring 38%

Diet, food, calorie counter 31Weight 12Period or menstrual cycle 7Blood pressure 5WebMD 4Pregnancy 3Blood sugar or diabetes 2Medication 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 3Social networking – 61% of all adults

% of internet users

2005 2006 2007 2008 2009 2010 2011 2012 20130%

20%

40%

60%

80%

100%

9%

89%

7%

78%

6%

60%

1%

43%

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 71% Women, adults ages 18-29

Use Google+ 31% Higher educated

LinkedIn 22% Adults ages 30-64, higher income, higher educated

Use Pinterest 21% Women, adults under 50, whites, those with some college education

Use Twitter 18% Adults ages 18-29, African-Americans,urban residents

Use Instagram 17% Adults ages 18-29, African-Americans, Latinos, women, urban residents

Use Tumblr 6% Adults ages 18-29

reddit 6% Men ages 18-29

•54% of online health searches are conducted on behalf of someone else.•34% of online adults look at online reviews•26% in the last 12 months read about or watched someone else’s health experience• 18% have gone online to find others who might share the same health concerns.

11% of SNS users; 8% of Twitter users get medical info on the sites

80% of online health queries begin at search engines

Different sources for different needs

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– assess the accuracy of info, timeliness of info,

transparency and rigor of info• Action – act as helpful producers/enablers– 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