2. Consumer Health Online 2004 Instructor: Bette Anton banton@library.berkeley.edu An Infopeople Workshop February-April 2004

3. This Workshop Is Brought to You By the Infopeople Project Infopeople is a federally-funded grant project supported by the California State Library. It provides a wide variety of training to California libraries. Infopeople workshops are offered around the state and are open registration on a first-come, first-served basis. For a complete list of workshops, and for other information about the Project, go to the Infopeople Web site at infopeople.org.

4. Introductions Name Library Position How much health-related reference do you do? How much time do you generally spend answering reference questions? Are there health-related questions that you are frequently asked? Other?

5. Workshop Overview Background Finding information on specific health topics General information sites Government sites Evaluation Techniques Therapies Special populations/topics

6. “Health Seekers” Half of American adults have searched online for health information. “Fully 80% of adult Internet users, or about 93 million Americans, have searched for at least one of 16 major health topics online. This makes the act of looking for health or medical information one of the most popular activities online, after email (93%) and researching a product or service before buying it (83%).” Source: Fox S, Fallows D. Internet Health Resources. Washington, DC: Pew Internet & American Life Project; 2003.

7. “About 6 million Americans go online for medical advice on a typical day. That means more people go online for medical advice on any given day than actually visit health professionals, according to figures provided by the American Medical Association.” Source: Fox S, Rainie L. Vital decisions: how Internet users decide what information to trust when they or their loved ones are sick. Pew Internet & American Life Project; 2002

8. Pew Internet & American Life Project Reports People Want… 93% - a particular illness or condition. 65% - nutrition, exercise or weight control 64% - prescription drugs 55% - before visiting a doctor 48% - alternative or experimental treatments or medicines 39% - mental health issue such as depression or anxiety 33% - sensitive health topic that is difficult to talk about 32% - particular doctor or hospital (report cards) Source: Fox S, Rainie L. Vital decisions: how Internet users decide what information to trust when they or their loved ones are sick. Pew Internet & American Life Project; 2002

9. How Californians Compare to the Rest of the Nation Pew Internet & American Life Project; 2003 says: Californians living in low income households [<$30,000/yr] are significantly more likely to go online than their counterparts in the rest of the country. 83% of California Internet users have used the Internet to search for health information specific disease medical procedure nutrition other

10. Health Topics More Popular in California Alternative treatments or medicines Health insurance Experimental treatments or medicines Problems with drugs or alcohol 7 out of 10 Californians (all income groups) say the Internet has improved the health & medical information & services they receive Source: Fox S. Wired for Health: How Californians compare to the rest of the nation. Pew Internet & American Life Project; 2003. http://www.pewinternet.org/reports/toc.asp?Report=105

11. Evidence-Based Health Care “Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients.” Source: Sackett DL, et al. Evidence based medicine: what it is and what it isn’t. BMJ 1996; 312(7023):71-72.

13. How is Lyme Disease diagnosed and treated?

14. Specific Disease/Conditions Some searching tips: Become familiar with the general health information finding tools that you believe to be reliable When you have found sites that look relevant, use evaluation criteria to help decide whether information is credible, timely and useful. Always get a “second opinion” Even the best “evidence” may not pertain to a particular individual.

15. Information on Specific Disease or Condition Background Definitions Overview What kinds of information? Etiology (cause or origin) Diagnosis Treatment Prognosis (course & outcome)

16. Bookmarks Go to: bookmarks.infopeople.org Look for the class bookmark file [consumer_health_bk.html] Click on it so it shows on the screen With the class bookmark file showing in Internet Explorer, click the Favorites menu, choose Add to Favorites… Notice the name in the Name: box so that you can use the Favorites list to get back to the class bookmarks for the rest of the day.

17. Government Information California Department of Health Services Gateway with link to city/county health organizations Phone numbers for local health departments Healthfinder.gov Gateway to the best government and non-profit health agency information Provides basic information & links to more detailed information

18. Authoritative & up-to-date information From NLM & NIH Encyclopedia & dictionary Drug information Clinical trial information Updated daily No advertising

19. PubMed Over 14 million citations, 1950’s - Links to many sites providing full text articles and other related resources http://pubmed.gov Loansome Doc Is a method of ordering PubMed articles The borrower must make an agreement with a local health science library

20. PubMed Central NLM's digital archive of life sciences journal articles Open access archive Can search the full text of articles in PMC Searching is similar to searching in PubMed Directory of open access journals: http://www.doaj.org

21. What Do We Know About Searching Behavior? Consumers use search engines rather than medical portals or sites of medical societies or libraries. When assessing the credibility, they primarily looked for the source, professional design, scientific or official touch, language, and ease of use. Under observation, none checked “about us” sections, disclaimers, or disclosure statements. Source: Eysenbach, G, Köhler, C. How do consumers search for and appraise health information on the world wide web? BMJ. 2002 March 9; 324 (7337): 573–577.

22. Good, Bad or Ugly? http://focusas.com

23. ¡¡Evaluate, Evaluate, Evaluate!! Source Currency Accuracy of content Purpose Links Design Verify information - get a “second opinion”

24. ¡¡Evaluate, Evaluate, Evaluate!! “Contributes to”, “is linked to”, “associated with” is not the same as “causes” “Doubles the risk” is meaningful depending upon what risk was in the first place “Significant” is not the same as “statistically significant”

25. Are there Drug Site-Specific Evaluation Issues? “May” v. “will” “Proves” - one study alone infrequently proves something “Breakthroughs” rarely happen “Significant” v. “statistically significant” Beware of miraculous cures Use the same criteria as for evaluation of other health web sites

26. Direct-to-Consumer Advertising Education or emotion promotion? Misleading? Success rate of drug Duration of use Alternative treatments Patient misconceptions: Only best/safest can be advertised FDA reviews ads

27. Is there any evidence that glucosamine sulfate can help arthritis?

28. Complementary & Alternative Medicine (CAM) “Diverse medical & health care systems, practices, and products …not presently considered to be part of conventional medicine.” Source: http://nccam.nih.gov/health/whatiscam/ Less evidence of efficacy of treatments and safety. 36% of adults over age 18 use some form of alternative medicine Source: CDC 2002 Nat’l Health Interview Survey

29. Integrative Medicine Combines mainstream medical therapies and CAM therapies for which there is some high-quality scientific evidence of safety and effectiveness.

30. Special Populations Ethnic groups: According to the latest U.S. census data, 41% of Californians over the age of 5 speak a language other than English at home. Age Gender Even pets!

31. Health Literacy Health literacy is the ability to read, understand, and act on health care information. Source: Center for Healthcare Strategies, Inc.http://www.chcs.org/resource/pdf/hl1.pdf

32. Who Has Health Literacy Problems? People of all backgrounds, especially those with chronic health problems Older people, immigrants & those with low incomes are disproportionately more likely to have trouble reading & understanding health-related information.

33. Internet Filtering See No Evil: How Internet Filters Affect the Search for Online Health Information Report finds Pornography can effectively be blocked without blocking most health information This is true only if not used at most restrictive settings Further information at http://www.kff.org/entmedia/20021210a-index.cfm

34. Finding Hospitals & Doctors “Report Cards” Who created the Report Card? What questions were asked? Who gave the answers? How many people were surveyed? Is the information reported of interest to me? Is terminology defined? How old is the information?

35. Support Groups Look for groups in disease-specific, general health & directory sites E-mail support: Listserv Chat groups Pros and cons?

36. In Summary Quality of medical information available on the Internet is uneven Many people still lack access Health seekers frequently have difficulty finding, understanding and using this information NEVER provide medical advice. Send patrons to their health care providers for interpretation of health information.