E-patients and their hunt for health information Lee Rainie, Director, Pew Internet Project Medical Library Association - NCNMLG/MLGSCA

“ Tell the truth, and trust the people” -- Joseph N. Pew, Jr.

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 “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 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 Others who have the same health condition 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%

The % of adult internet users who have looked online in the last 12 months for information about… 55%Specific disease or medical problem 43Certain medical treatment or procedure 27How to lose weight or how to control your weight 25 Health insurance, including private insurance, Medicare or Medicaid 19Food safety or recalls 16Drug safety or recalls 16A drug you saw advertised 15Medical test results 14Caring for an aging relative or friend 12Pregnancy and childbirth 11How to reduce your health care costs 20Any other health issue 72at 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.

326.4 Total U.S. population: 319 million 2012 Digital Revolution 2 - Mobile cell 91% … smartphone 56% … tablet 34%

Changes in smartphone ownership

Smartphone ownership by income/age

Mobile health info All cell phone owners 17%31% Men 1729* Women 1633* Age * * * Race/Ethnicity White, non-Hispanic 1527* Black, non-Hispanic 1935* Hispanic 2538* Annual household income Less than $30,000/yr 1528* $30,000-$49, * $50,000-$74, * $75, * Education level No high school diploma 1617 High School grad 1226* Some college 2133* College+ 2038* 91% of adults own cells … of them … 31% get health information 9% get health text messages % 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

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 Facebook69% Women, adults ages Use Google+31% Higher educated LinkedIn20% Adults ages 30-64, higher income, higher educated Use Twitter18% Adults ages 18-29, African-Americans, urban residents Use Pinterest15% Women, adults under 50, whites, those with some college education Use Instagram13% Adults ages 18-29, African-Americans, Latinos, women, urban residents Use Tumblr6% Adults ages reddit6% 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