1. The online healthcare revolution and the rise of e-patients and e-caregivers Internet Librarian 2003 Lee Rainie – Director November 3, 2003

2. “Oh, like you know something the internet doesn’t know.”

3. The 20 th Century model the clueless, isolated, doctor- dependent patient

4. The 21 st Century model the net-savvy, well-connected, doctor-independent end-user

5. 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.

6. Adults Teens Pew Internet & American Life Project / Pew Research Center surveys Being online is the norm

7. Internet activities – A typical day

8. Internet use helps in everyday life

9. … and helps with big decisions

10. Portrait of health seekers   80% of internet users or 93 million American adults – 6-8 million on any given day   14 million American teenagers   Online women more than online men (72% vs. 51%) and girls more than boys   Middle aged (30-64) more than the young or the old

11. Key ‘demographic’ trait 1: Health status affects intensity of search The well Newly diagnosed Chronically ill (Institute for the Future study, 2001)

12. Key ‘demographic’ trait 2: Who they searched for affects timing and purpose For myselfFor someone else

13. What e-patients do - 1   Tentatively diagnose their own diseases   Confirm their doctor’s diagnosis and suggested treatments   Check their doctors’ credentials   Research all available treatment options – not just those recommended by doctor

14. What e-patients do - 2   Give themselves a crash course on a specific medical condition when they (or a loved one) is diagnosed   Exchange information and support with with other patients with the same disease   Obtain online second opinions   Explore and sign up for clinical trials

15. Why they like Internet searches   93% of health seekers say it is important that they can get health information when it is convenient for them   83% of health seekers say it is important that they can get more health information online than they can get from other sources   80% of health seekers say it is important that they can get this information anonymously, without having to talk to anyone

16. How e-patients start searching   Most e-patients start at a search engine like Yahoo or a general site like AOL – not a medical site – and visit two to five sites   Few have one favorite health site

17. How e-patients gather info   Most: Scattershot searches in response to a diagnosis   Some: Targeted email health news or medical updates   Few: Online support groups or email lists for people concerned about a particular health or medical issue

18. Disease research Diet / nutrition Exercise / fitness Medicines Alternative medicine and tx. Treatments Experimental tx. Docs and hospitals Mental health Health insurance Medicare / Medicaid Sexual health Vaccinations Enviro. health hazards Smoking Substance abuse The information health seekers get online

19. Searches are successful   Eight in ten health seekers find the information they look for online at least most of the time   More than half of search engine users found information within the first three sites they visited   Most health seekers say they had never heard about the Web sites they ended up consulting before they began the search

20. How e-patients assess quality   Most trust the familiar   Most distrust commercialism   2 in 5 check the source   1 in 3 check it out with a medical professional

21. Three types of e-patients   Vigilant: 25% “always” check the source, date, and privacy policy of a health Web site   Concerned: 25% check “most of the time”   Unconcerned: 50% “only sometimes,” “hardly ever,” or “never” check

22. Searches affect health decisions   61% of health seekers say information they found on the Web has improved the way they take care of themselves   68% said that their last online search affected their decisions about: - how to treat an illness - whether to visit a doctor - whether to ask new questions or get a second opinion

23. Pitfall 1: Bad information is dangerous   RAND/CHCF: Online advice is incomplete and hard to understand – esp. for Spanish readers   NEJM: Americans receive about half of recommended medical care

24. Pitfall #2: Privacy concerns   Consumers have an expectation of privacy   89% of health seekers are concerned that a health-related Web site might sell or give away information about what they did online   85% are concerned that an insurance company might change coverage   52% are concerned their employer might find out what health sites they have visited   63% think that putting medical records online is a bad thing

25. Underlying world view, Industrial Age medicine medical science PHYSICIAN patient non-MD Staff All other possible inputs from people and publications

26. NET-SAVVY PATIENT my other health experts other self-helpers my search engine my online support groups my primary doc my favorite health sites my specialist doc my online patient- helpers my online docs qualityware & communityware Underlying world view, Information Age medicine

27. Contact me: Lee Rainie lrainie@pewinternet.org www.pewinternet.org 202.296.0019